Palliative care

Our health system supports a model of care that is strongly reliant on provision of services in hospital. Two studies reported in this issue of the Journal illustrate the dominance of this model, the increasing demands on the system, and the way that the quality of care provided may be inappropriate for two major groups in our community: the very old and those with terminal disease. An accompanying editorial by Abernethy (→ "Learning health care" for patients and poulations) calls for a patient-focused “learning” health system to facilitate care for these groups. It has long been accepted that the majority of an individual’s health care costs are expended during the last few months of life. However, acknowledging the futility of this has not led to the development of effective alternatives. Little work has previously been done in Australia to examine the delivery of care for seriously ill Australians in their last months of life. The findings of Rosenwax and colleagues in this regard (→ Hospital and emergency department use in the last year of life: a baseline for future modifications to end-of-life care) are bleak, but perhaps not surprising. Of patients in their study who were suitable for palliative care, 70% had at least one visit to the emergency department and 96% were admitted to hospital during their last year of life, with an average of eight admissions and a mean length of stay of 6 days. Most of the admissions and time spent in hospital occurred within the last 3 months of life, and 62% of patients died in hospital. These are all markers of a poor standard of palliative care (J Clin Oncol 2003; 21: 1133-1138), which we accept too readily. Lowthian and colleagues analysed the use of emergency ambulance transport in Melbourne (→ The challenges of population ageing: accelerating demand for emergency ambulance services by older patients, 1995–2015), showing an increasing demand for this service and, by implication, the hospital system, particularly by patients aged 85 years or older. Since 1994–95, the annual rate of emergency ambulance transfers increased by almost 5% beyond what could be explained by population changes. The authors project a further increase in usage to 2014–15 of up to nearly 70%. Although people aged 85 years or older comprised 1.6% of the population in 2007–08, they accounted for 13.6% of emergency transportations. As the authors point out, ambulance transportation most often results in emergency department attendance, with a high rate of subsequent hospital admission. Older patients are more likely to be admitted, and typically for longer, than other age groups. As our population ages, demand for both ambulance and hospital services will rise, and this will need to be factored into health planning. At heart, both these studies identify a need for an alternative model of care. An aggressive-treatment, event-determined and hospital-centred model fails to give appropriate care to the terminally ill and older people who have complex chronic comorbidities. The articles canvass some alternative models, but neither suggests assessing whether good primary care can reduce demand on ambulance and hospital service use. Palliative care and aged care should not primarily be the province of the hospital and the acute health care system, and our continued acceptance of this and of the concentration of health care spending in the last months of life is no longer tenable. It represents both bad care and a waste of money.

Annette Katelaris MB BS, MPH, FRACGP

Objectives: To describe hospital and emergency department use in the last year of life by people for whom death from cancer or one of another nine conditions was an expected outcome.Design, participants and setting: Retrospective cross-sectional study based on death registrations and morbidity data for 1071 Western Australians who died between 1 August 2005 and 30 June 2006. Decedents had an informal primary carer, did not live in residential aged care and died of a condition amenable to palliative care.Main outcome measures: Total number of hospital admissions; emergency presentations (with and without hospital admission); days spent in hospital by age group at death, sex, metropolitan or rural place of residence and cancer versus non-cancer diagnosis; proportion in hospital on any day in the last 365 days of life; time points of change in the last 365 days of life at which there was an increasing proportion of hospital admissions for those with cancer and non-cancer conditions.Results: All but 4% of the decedents spent time in hospital with a marked increase in hospitalisations in the last 108 days of life for people who died of cancer and the last 83 days of life for people who died of non-cancer conditions. Those with cancer spent less time in hospital than those with other diagnoses. Seventy per cent of the cohort had at least one emergency presentation. On the last day of life, 61.5% of people were in hospital and 4.0% had been seen in emergency departments.Conclusions: Western Australian hospitals currently provide extensive and progressively greater care at the end of life. Identifying patterns of emergency and inpatient use for various disease trajectories will assist in the planning of appropriate services for people where death is an expected outcome.

Lorna K Rosenwax BAppSc(OT), MSc, PhD · Beverley A McNamara BA(Hons), Dip(Teach), PhD · Kevin Murray BSc(Hons), MSc · Rebecca J McCabe BBus, GradCertBus, MCom(Bus Admin) · Samar M Aoun BSc(Hons), PhD, MPH · David C Currow BMed, FRACP, MPH

Palliative care is becoming fundamental in the starting line-up of care choices For Australian patients with advanced, incurable illness, particularly cancer, the option of referral to specialist palliative care services can seem to be a random and discretionary default option that is sometimes called on when all possibilities for life-extending treatment have been exhausted or cannot easily be accessed. Palliative care services (distinct from palliative chemotherapy) provide a broad range of inputs to patients and their carers and loved ones, including specialised medical and nursing management and advice on symptom control; psychological, emotional and spiritual support; practical nursing care; advice and assistance with goal setting and end-of-life care; and bereavement counselling and support. Despite offering these and other unique strategies in the field of cancer management, these specialist palliative care services sometimes stay on the substitute’s bench until called on late, when all else has failed. In Australia, despite having had principles of goal setting and broad palliative care education as part of the medical curriculum for over 20 years,1-3 and despite evidence of the benefits of referral to specialist palliative care services,4 only 42% of patients who die of advanced cancer and other terminal illnesses in the country’s busiest acute hospital are referred to a specialist palliative care service.5 Patients with haematological malignancies are referred less frequently than patients with solid tumours.6 Although oncologists in Australia report that they favour early referral for specialist palliative care, with a concurrent rather than sequential model of care,7 patients are usually referred late. In one large, integrated Australian palliative care service, patients had a median length of survival after referral of 54 days, representing the final 17% of their illness duration.8 Perceived barriers to improving palliative care referral and provision include inadequate communication about goal setting and resuscitation orders; inadequate symptom control; and lack of resources, including inadequate bereavement counselling of caregivers.7 A Queensland senator recently called Australian palliative care services “an under-resourced shambles”.9 In Australia and elsewhere, there have been increasing efforts to more accurately define the benefits or otherwise of early referral to palliative care services for patients with an incurable and progressive illness. However, research has been difficult, and randomised controlled trials have not been of high impact. Now, the results of two recent prospective, randomised studies from the United States10,11 will help to broaden Australian clinicians’ and the public’s understanding of the role of specialist palliative care services in the care of patients with advanced, incurable cancer and the advantages of early referral. Although the evidence from these studies has limited application in Australia because of differences in the US and Australian health care systems, the models of care being tested are similar to current Australian models, and the results have the potential to significantly shape practice and policy in this increasingly important part of health care.9 A non-blinded randomised controlled trial reported by Temel and colleagues10 provides a watershed moment in oncology and palliative care. One hundred and fifty-one ambulatory patients referred to an outpatient thoracic oncology clinic for newly diagnosed non-small cell metastatic lung cancer were randomly allocated to standard oncology care with or without referral to a palliative care team. The primary outcome was change in health-related quality of life at 12 weeks. Patients in the early palliative care group had better quality of life and fewer depressive symptoms compared with those receiving only standard care (Box). The various goals of new interventions in cancer treatment include improving survival; reducing treatment toxicity; improving quality-of-life scores (eg, mood); and reducing the financial costs of treatment. This study achieved all these goals with just the modest intervention of an average of four visits from the specialist palliative care team in the first 12 weeks. Importantly, the median survival time of 8.9 months was at least as good as would be predicted and expected for the control group. The improvement in overall survival of 2.7 months (30%) for the intervention group who were referred for early palliative care was equal to or greater than that achieved for comparable patient groups with chemotherapy versus best supportive care12 or the addition of the new and very expensive targeted agents cetuximab or bevacizumab to chemotherapy.13,14 It was achieved despite significantly fewer patients receiving aggressive end-of-life care. The size of the survival benefit may have been reduced because 14% of the control group also received early referral to a specialist palliative care service for symptom control and had 1–2 palliative care visits during the 12 weeks. A survival advantage from early palliative care referral has been suggested previously,15 but will need to be replicated by studies in other care settings and in patients with other types of cancer. Possible weaknesses of this study are the lack of blinding and lack of patient comorbidity data. Extra time spent with health care professionals, rather than any specific palliative care intervention, may have contributed to the improvements seen. But if this were so, this effect would also have been expected in studies showing benefits of chemotherapy plus best supportive care versus best supportive care alone, whereas no difference was shown in survival advantage between these groups.12 Also, even though the patient groups were balanced for types of chemotherapy and other treatments at enrolment and for the number of courses of chemotherapy during the study, more detailed data on specific chemotherapy regimens are lacking. Wright and colleagues11 followed 333 patients with advanced cancer from their enrolment until their death. Those referred to specialist palliative care services had better outcomes when treated outside an acute hospital (Box). Assessment of their carers at enrolment and after the death of the patient showed that those who were assisted in providing care at home until the patient’s death had significantly less risk of developing post-traumatic stress disorder or prolonged grief disorder. In the future, as we seek to confirm and understand more about how these improvements were achieved in patients receiving specialist palliative care, early referral for palliative care should become part of all arms of any randomised trial of advanced cancer treatment, particularly when a new treatment is being compared with best supportive care or current best treatment. The results of the two studies discussed here provide the best evidence yet for the multiple benefits of early referral to palliative care services in the care of patients with advanced, incurable cancer. They show that early referral can improve all measurable outcomes for patients by as much as, or more than, new and expensive treatments. Further, they show that early referral can help patients and carers better understand and choose between their treatment options near the end of life, reducing futile use of finite medical resources, debilitating treatments such as continuing cycles of chemotherapy in very advanced stages of illness, and acute in-hospital interventions at the end of life. The incidence of subsequent emotionally and financially debilitating psychological and psychiatric sequelae in the carers of these patients can be reduced. Because of new high-quality evidence, palliative care is rapidly moving from being an ancillary and sometimes discretionary medical treatment option to being fundamental in the starting line-up of care choices for patients with advanced cancer. If early referral for specialist palliative care were an expensive new drug, it would quite appropriately be marketed as a major advance in improving the care of patients with incurable cancer. Two recent US studies showing benefits of early specialist palliative care in patients with advanced cancer: overview Temel et al10 Research question: Does early referral of ambulatory patients with newly diagnosed metastatic non-small cell lung cancer to a specialist palliative care service affect patient-reported outcomes, use of health services and quality of end-of-life care? Design Non-blinded randomised controlled trial; 151 lung cancer patients referred to an outpatient clinic Standard oncology care versus standard care with referral to a palliative care team (seen within 3 weeks, and at least monthly until death) Groups well balanced for all known prognostic factors, initial cancer therapy, and baseline quality of life and mood Quality of life and mood assessed at baseline and 12 weeks Data on end-of-life care derived from medical records Findings Patients assigned to early palliative care received an average of four palliative care visits in 12 weeks (range, 0–8 visits) Patients in the intervention group had better quality of life than patients assigned to standard care Proportion of patients with clinical depression decreased in the intervention group from 22% to 16% and increased in the control group from 25% to 38% (P = 0.01) Fewer patients with early palliative care compared with standard care received aggressive end-of-life care (33% v 54% of those who had died by time of analysis; P = 0.05). Median survival was significantly longer among patients receiving early palliative care (11.6 v 8.9 months; P = 0.02) Wright et al11 Research question: Is the place of death for patients with cancer associated with patients’ quality of life at the end of life and psychiatric disorders in bereaved caregivers? Design Prospective, longitudinal multisite study; 333 patients with advanced cancer and their caregivers Patients followed from enrolment to death (median, 4.5 months) Quality of life at end of life assessed by caregiver report within 2 weeks of death Caregivers’ mental health assessed at baseline, and 6 months after patient’s death Findings Patients who died in an intensive care unit or hospital experienced more physical and emotional distress and worse quality of life at the end of life compared with patients who died at home with palliative care Death in an intensive care unit was associated with a greater risk of post-traumatic stress disorder in carers compared with death at home with palliative care (21.1% v 4.4%; P = 0.02) Death in hospital was associated with heightened risk for prolonged grief disorder in carers compared with death at home with palliative care (21.6% v 5.2%; P = 0.02)

Ian E Haines MB BS, FRACP, FAChPM

Only a quarter of patients’ deaths are due to cancer, but the vast majority of the patients of specialist palliative care services have cancer as a primary diagnosis. Almost two-thirds of patients dying of an expected illness do not receive specialist palliative care at all, and this proportion is likely to increase as the population ages. Australian health system care for dying people needs systematic change so that people who may require palliative care in the foreseeable future are systematically identified, and have proactive care plans developed to meet their complex needs. This can be done in general practice and aged care, as shown by a model for such care in the United Kingdom. We explain the need for system change, and propose steps by which this might be achieved.

Geoffrey K Mitchell PhD, FRACGP, FAChPM · Claire E Johnson PhD, RN, CM · Keri Thomas MB BS, MRCGP, MSC(PallMed) · Scott A Murray MD, FRCGP, FRCP(Ed)

Objective: To examine the symptoms, level of suffering, and care of Australian children with cancer at the end of life.Design, setting and participants: In a study conducted at the Royal Children’s Hospital, Melbourne, parents of children who had died of cancer over the period 1996–2004 were interviewed between February 2004 and August 2006. Parents also completed and returned self-report questionnaires.Main outcome measures: Proportions of children suffering from and treated for various symptoms; proportion of children receiving cancer-directed therapy at the end of life; proportion of children whose treatment of symptoms was successful; location of death.Results: Of 193 eligible families, 96 (50%) were interviewed. All interviews were conducted in person, and occurred a mean of 4.5 years (SD, 2.1 years) after the child’s death. Eighty-four per cent of parents reported that their child had suffered “a lot” or “a great deal” from at least one symptom in their last month of life — most commonly pain (46%), fatigue (43%) and poor appetite (30%). Children who received cancer-directed therapy during the end-of-life period (47%) suffered from a greater number of symptoms than those who did not receive treatment (P = 0.03), but the severity of symptoms did not differ between these groups. Of the children treated for specific symptoms, treatment was successful in 47% of those with pain, 18% of those with fatigue and 17% of those with poor appetite. Of the 61 families who felt they had time to plan where their child would die, 89% preferred to have their child die at home. The majority of children (61%) died at home. Of those who died in hospital, less than a quarter died in the intensive care unit.Conclusions: Relatively high rates of death at home and low rates of unsuccessful medical interventions suggest a realistic approach at the end of life for Australian children dying of cancer. However, many suffer from unresolved symptoms, and greater attention should be paid to palliative care for these children.

John A Heath PhD, FRACP · Naomi E Clarke BMedSc(Hons) · Susan M Donath BSc(Hons), PhD · Maria McCarthy BAppSc, MAppSc · Vicki A Anderson BA, PhD · Joanne Wolfe MD, MPH

I have always dreaded that moment at funerals when you see the coffin for the first time. Perhaps it’s the finality of death or the sadness of the loss, but that moment seemed an inevitable consequence of the dying process, until I was faced with the impending death of my father. My father was 75 years old when he died of cholangiocarcinoma. He was a man with many friends. He was curious and loved to chat, he loved a beer, he made people laugh, he worked hard and was well loved. He was cared for at home, mostly by my mother. Friends and family came to pay their respects, and some came again for another “last time”. We sat with him, tended to his needs and contemplated life without him. The palliative care team visited often and waited for the cue to arrange hospice care because we could no longer cope; to us, this meant dad leaving and being cared for by someone else. The cue never came. The family rallied and dad stayed at home. This raised another issue I had with dying — the moment of separation when the body is taken away from the family. I had witnessed it often in my working life and wondered how families determined the right time to go and how they felt about leaving their loved one behind. Would they want to take the body with them? A few days before dad died, the funeral director came to the house. We leafed through folders of coffins and flowers, and discussed the service. She said to call them at any time when he died and they would come to the house (to take him away). I took a breath. “Can’t we keep him here?” My mother looked at me. “Are you sure you’re allowed to?” We hadn’t discussed this option so I had no idea what she thought about it. In fact, I didn’t think I would raise it. I hadn’t thought it through completely but felt intuitively it was the right thing to do, for me and possibly for her. Between us we had attended many funerals but had no knowledge of anyone who had kept the body at home. Ultimately, the decision would be hers; he was her husband, and she would continue to live in the house. Maybe it would be too much for her to bear, but she didn’t seem opposed to the idea, and it was possible. In the warmer months a cold table can be provided, but we were in the middle of winter and the garage under the house was particularly cold, so a body could rest down there. After some discussion, we decided that dad would go to the garage and not leave us until the last. That decision would have a profound effect on my view of death and grieving. Dad died early one Sunday morning at home, with my mother by his side. The rest of the family slowly arrived. Dad stayed in his bed, where we washed him and dressed him as if ready for golf. The children came in and out of the bedroom. They tied up his shoes and added things to his pockets. We ate lunch. The civil celebrant conducting the funeral came over and we talked about dad. Someone would disappear into the bedroom for a while and come out with red eyes. In the afternoon, the funeral directors arrived. We carried dad downstairs and placed him in the coffin, next to the caravan my parents used as their second home on travels. His golf clubs were beside him and his work bench just behind. Mum moved into the caravan for two nights. Dad was now in the garage. Mum’s sister arrived after a long journey. After cups of tea, they went downstairs to see dad. The garage became a sanctuary where people came and went and the children ran and danced around the coffin. Being close by allowed many quiet moments to sit next to the coffin, talking, weeping and taking time. Mum sat beside him in the early hours of the morning. On the day of the funeral, the family gathered for more food, more cups of tea and last-minute writing of speeches. We went down to the garage and lifted the lid of the coffin. Dad was still the same, looking pale and peaceful. We cried, laughed and added extra things that we thought he might want, or that we wanted him to have. The hearse arrived and we carried dad out and drove slowly to the church in this small country town. The family carried the coffin into the church that was filled with dad’s family and friends, and the friends of his children and friends of friends. Many burst into tears at the sight of us and the coffin. It was a good ceremony, and then we carried him out again. We arrived at the cemetery and carried the coffin to the graveside. The children wondered whether we would also have to dig the hole. The coffin was lowered and we all went for more cups of tea, and sherry and cake. The death of my father was an experience I had not expected. I imagined being inconsolable with grief and unable to make decisions. However, it was a gentle time that brought the family together and created a wonderful memory. He had a good death at home and a good after-death. Keeping his body at home was an unusual decision in the eyes of many. For the family, it represented an opportunity to do something special for someone we loved, but it also facilitated the grieving process. It seemed to slow down the period from the death to the funeral. There was no pressure to have the body removed or to pay visits to the funeral home for a “viewing”. He was in the garage and we could see him whenever we wanted; we grew accustomed to looking at the coffin and began to come to terms with his death. There was also comfort in continuing to offer care until the end, rather than his body being in the care of someone else. There are cultures where it is the norm to keep the body at home. I had witnessed it in Tonga on my student elective, where I equally appreciated the symbolism of coming together and sharing a meal (or cups of tea!) at these times. In contrast, the ritual of keeping the body at home is uncommon in Australian culture. It certainly seemed uncommon to the funeral director and others I have spoken to. Maybe people think about it but don’t ask. Perhaps we should ask for them.

Karen L Dunn MB BS, FRACP, PhD

In complex and challenging cases, care should be individualised to reflect a patient’s unique situation, values and goals In all areas of medicine, we encounter complex and tragic cases that challenge our medical expertise, our emotional resources, our clinical judgement and our capacity to make ethical decisions. In challenging cases where there is a diagnosis of a progressive life-limiting illness, a palliative care team may have much to offer. The patient we describe here, a young pregnant woman diagnosed with incurable malignancy, represents one such case. Only by working with the patient at the centre, surrounded by collaborating specialist staff, can we negotiate the path to the “right” care. A 35-year-old, previously healthy, 16-week pregnant woman presented with a 7-hour history of right leg paresis on a background of vague back pain. Examination revealed normal sensation but power of 0/5 throughout the affected limb. Magnetic resonance imaging showed multiple metastatic intracerebral deposits, most likely in keeping with melanoma. Neurosurgical, medical oncology and radiation oncology reviews followed. A left supraclavicular lymph node biopsy confirmed melanoma, consistent with a distant past history of left shoulder melanoma. The optimal treatment regime was considered by the specialists involved to be dexamethasone and whole brain irradiation. The obstetric medicine consultant identified a potential but necessarily unavoidable risk of intrauterine growth retardation from use of corticosteroids, but the risk from whole brain radiotherapy was considered to be negligible. Importantly, the obstetrician clearly identified that the patient did not want to terminate her pregnancy, citing strong Christian beliefs and a primary intent of delivering a healthy baby. The patient had one other child, an 8-year-old son from a previous marriage. The potential for crises and the likely need for urgent decision making, including life support issues, were raised by the obstetrician. With encouragement, the patient completed an advance health directive and appointed her husband, who shared her Christian values, as enduring power of attorney. By terrible coincidence, her newlywed husband’s first wife had died of a brain tumour diagnosed during pregnancy. In the space of 6 days, this previously healthy woman learned that she could not move her leg because she had multiple brain tumours, that she could not be cured, and that she was going to die. She also learned that she might die before her baby was born or that she might have to be kept alive artificially, and unconscious, to support her baby until birth. During the ensuing 10 days, the patient was treated with whole brain radiotherapy, corticosteroids and physiotherapy, and gained significant recovery of right lower limb function. At 18 weeks’ gestation, she developed acute-onset dyspnoea, haemoptysis and oxygen desaturation to 92%. A focal wheeze in the left upper zone was evident on examination. Bronchoscopy revealed a pulsatile vascular endobronchial tumour in the left upper lobe that was not amenable to cautery. With the risk of major bleeding and potential for sudden deterioration, an urgent referral was made to the palliative care service. The role of the palliative care team was to provide emotional support and to act as an advocate for the patient, who needed relevant medical information presented in such a way that she could make decisions based on realistic options, understanding both the risks and benefits. In a short space of time, this patient had lost many aspects of her life — her roles as teacher, active churchgoer, mother and wife were disappearing. A young expectant mother’s unquestioning hopes for the future were being eroded. The aspects of her life that remained intact were her values and choices regarding her own and her unborn child’s care, allowing her to maintain some control over her future. The palliative care team recognised the need for a case conference involving staff from intensive care medicine, radiation oncology, respiratory medicine and palliative care, as well as the social worker and the ward nurse manager, to produce a consensus opinion for guiding decision making. Obstetrics staff, who were unable to attend, had already explained to the patient that a baby born at 28 weeks’ gestation could have a reasonable chance of healthy survival, but that 32 weeks would be an ideal minimum gestation. Issues addressed at the case conference included: What were the patient’s wishes for herself and her baby? How long would it realistically be possible to ventilate and support her artificially, to allow the fetus to mature? What could be done in the event of massive haemoptysis? Would ventilation be possible? What were the other possible clinical outcomes and how could they be managed? The case conference resulted in a realistic palliative care plan to anticipate and manage potential difficult scenarios, which was relayed to the patient and her husband by the palliative care consultant. She agreed to the plan to use radiotherapy to treat lung metastases and understood that admission to the intensive care unit (ICU) would not be an option in the event of massive haemoptysis, because adequate ventilation was technically impossible. Massive haemoptysis, dyspnoea and anxiety would instead be managed with opioids and benzodiazepines kept in her room. Should her condition decline with other complications and require ICU admission for life support to facilitate the birth of her child, this could not occur until 26 weeks’ gestation. By 27 weeks’ gestation, she had remained an inpatient, with occasional day passes home. Gestational diabetes secondary to steroid treatment had further burdened her clinical course. She developed severe abdominal pain, with increased abdominal girth. Investigation revealed a large pelvic mass and ascites, and paracentesis produced haemorrhagic fluid. A further case conference concluded that, due to her clinical decline and concern that intra-abdominal disease would place the baby at increased risk of congenital melanoma, the patient should undergo a caesarean section at 28 weeks’ gestation. Three days before this was due to take place, she had a generalised tonic–clonic seizure and was admitted to the ICU. Fortunately, her son was successfully delivered by caesarean section as planned. Though profoundly fatigued and with her condition deteriorating rapidly, she was able to visit her son in the neonatal ICU. She died 24 hours later of a suspected pulmonary embolism, for which she received symptomatic relief of dyspnoea and distress, in the company of the nursing staff. Evidence to guide management of pregnant women with cancer is limited, particularly when the prognosis is short. This case challenged all the teams involved in her care, both emotionally and clinically. What was the right thing to do in the absence of evidence specifically relevant to her case? At each stage of the patient’s illness, knowledge of her goals and wishes was crucial to good clinical decision making. Each decision needed to be carefully made, bearing in mind the patient’s wishes for herself and her baby while remaining within the limits of her illness and the capabilities of modern medicine. Although some literature exists on melanoma in pregnancy, most pertains to placental metastases and transmission.1-3 There has been little written to guide decision making for pregnant patients with incurable cancer. Four articles discuss the balance and potential conflict between optimal treatment for the patient and the risk of damage to the fetus.4-7 Care needs to be individualised to reflect a patient’s unique situation, values and goals. Interdisciplinary collaboration to advocate for the patient’s individual wishes is one of the central tenets of the palliative care physician’s approach to patient care. Advocacy, collaboration and making difficult decisions in the face of a terminal illness are central to good palliative care. Palliative care physicians are particularly skilled when outcomes are uncertain, and when meaning and individuality are key to good decision making. We recommend an early referral to the specialist palliative care service for patients with similarly challenging cases.

Faith D Cranfield MB BAO BCh, MRPCI · Carol M Douglas FAChPM, MB ChB

Objective: To examine how performances by the Staff Christmas Choir of the Peter MacCallum Cancer Centre (“Peter Mac”) affected inpatients, outpatients and visitors in 2008.Design, setting and participants: During the Christmas season 2008, the Peter Mac Staff Christmas Choir gave seven performances at the Centre. Locations included inpatient wards, outpatient waiting areas and a cafeteria. To assess their response to the choir, oncology inpatients, outpatients and visitors (including early-departing bystanders) were given anonymous, semi-structured questionnaires during and after performances. To analyse the responses, we used a constructivist research approach informed by grounded theory.Main outcome measures: Participants’ descriptions of the choir’s effects on them.Results: Questionnaires were returned by 111 people. The performances were received favourably by 93.7% of respondents, including nine from Jewish, Hindu or atheist backgrounds. Many said the music aroused positive emotions and memories. Several described transformative thoughts and physical reactions, felt affirmed by the Christmas spirit or message, and/or appreciated the peaceful or enlivened and social atmosphere. The choir also elicited personal perspectives about Christmas and Judaism, and the importance of “enjoying the moment”. Only three respondents (2.7%) reported adverse effects, relating to emotional and audible intrusiveness.Conclusions: The Staff Christmas Choir created a supportive and uplifting atmosphere for many oncology patients and their visitors. However, responses from people from non-Christian backgrounds were limited, and further investigation is warranted to extend our understanding of the effect of Christmas music in Australian public health settings.

Clare C O’Callaghan PhD · Colin J Hornby FIR, MAppSc, GradDipEd · Elizabeth J Pearson BAppSc(OT) · David L Ball MB BS, MD, FRANZCR

A good death. An argument for voluntary euthanasia. Rodney Syme. Melbourne: Melbourne University Press, 2008 (xviii + 301 pp). ISBN 978 0 522 85503 6. In facing the management and termination of intolerable situations, a caring doctor involved in alleviating the final agonies of patients can berate the legal system’s impotence and governmental procrastination. Oncologists are frequently confronted by situations involving the end of a painful existence. Most are now assisted by specialists in palliative care, often disempowered by shortages of beds and frustrated by staff inadequately trained or less than sympathetic to the views of those who would like to see “physician-assisted by specialists in palliative care, often disempowered by shortages of beds and frustrated by staff inadequately trained or less than sympathetic to the views of those who would like to see “physician-assisted dying” as an alternative to only partially effective, cerebrally numbing analgesia. Cancer, of course, is not the only cause of a prolonged and tormented end to life. Some of the most distressing cases are associated with the neurological prisons that mean a fully conscious person is cut off from mobility, self-care, sensory input and communication. In a deeply personal, well researched and detailed book, Rodney Syme relates his own experiences which, over 30 years, have honed his ideas of how best to achieve the relief requested by the sufferer. Conditions that have to be met include a clear, unequivocal request to die by the patient. This is extremely difficult when communication has become impossible, and points to the need for a “living will”, assigning that responsibility to a nominated person. Nevertheless, euthanasia on demand is not his aim. Rationality is paramount, as is the physician’s responsibility in the decision process. Syme lays emphasis on the need to allow relatives and/or close associates the opportunity to say farewell and discusses the reasons for recommending the methods he does. He makes it clear why he has never adopted the execution-style injections of sedatives, analgesics and cardio-respiratory paralytics adopted in other countries. Although this is scarcely a textbook of suicidal methods or a scientific treatise, it is a valuable addition to the discussion of the subject. It may help medical practitioners to know that others have had to go through the same convolutions of conscience, and be of comfort to family members to follow the thoughts of a clearly caring doctor.

Thomas F Sandeman

Final exam: a surgeon’s reflections on mortality . Pauline Chen. London: Souvenir Press, 2008 (xv + 267 pp). ISBN 978 0 28563 811 2. Although it is more than 40 years since I graduated, reading A surgeon’s reflections on mortality revived memories of my own undergraduate and postgraduate years. Replete with detailed recollections of the author’s initiation into medicine and specialist practice, this is more than a trip down memory lane. At its heart resides a concern that many will, as was the case with the author, find challenging and unsettling. Pauline Chen uses narrative and reflection to tell us of her transition from a frightened and anxious medical student to a compassionate transplant surgeon. The stories reveal a maturation process that inevitably leads her to evaluate the agendas that direct her life as well as her clinical practice. The journey brings her face to face with her own mortality and the realisation that to become a good doctor she needs to prepare for her “final exam”, namely her own death. The book ultimately confronts the issue of end-of-life care and, somewhat bravely, the author suggests it is not the disease process, place of death or service delivery but a doctor’s fear of and aversion to dying that influences outcomes. This, she asserts, is “the most difficult and fundamental human obstacle in changing end of life care.” Not everyone will agree with this conclusion, but the issues raised within the book cannot be summarily dismissed. Is it the art or the science of care that matters most? According to Ken Wilber, a transpersonal psychologist of some repute, the crucial ingredient is not the doctor’s bag with all its tricks but the holder of that bag. In “doctor speak”, this can be translated as “physician heal thyself”. Chen invites us to heal.

Michael P Barbato

Palliative care. A patient-centered approach. Geoffrey Mitchell. Oxford: Radcliffe Pubishing, 2008 (xiv + 168 pp). ISBN 978 1 85775 737 2. Next time you visit the trade display at a palliative care conference, you will find a plethora of books on the subject, covering just about every conceivable aspect of this expanding field: “textbook”, “handbook”, “practical guide”, “core skills and competencies”, “pearls”, “practices”, “guidelines”, “emergencies” etc. Geoffrey Mitchell, professor of palliative care at the University of Queensland and well known in Australian palliative care circles, has found another angle that definitely needed covering: “a patient-centered approach” (a fundamental philosophical concept underpinning good quality palliative medicine practice but, surprisingly, not always well covered by the standard texts). This small, easy-to-read book is the latest monograph in a UK-based series on patient-centred medicine (which is “transforming the clinical method”, according to the series editor) as it applies to various specialties. The book is clearly aimed at general practitioners but is also relevant to specialists in the field, especially the middle chapters that cover various dimensions of the interaction between the terminally ill patient, their illness and the environment. These chapters cover such topics as “the illness experience”, “understanding the whole person” and “enhancing the patient–clinician relationship”. On the other hand, chapters on the pathophysiology of symptoms and their management are definitely written for the GP readership. A particular strength of the book is its in-depth coverage of how the patient-centred approach applies to children. The book will also help specialists better understand the perspective of their colleagues in general practice, who provide the majority of palliative care. In dedicating the book to his family, the author says he has been truly blessed. Dying patients whose GPs adopt a patient-centred approach to palliative care will also be blessed.

Paul A Glare

To the Editor: We share the sentiments of Murphy’s article in the 7 April issue of the Journal.1 As intensive care physicians, the issue of futile care is an almost daily consideration. We agree with his assertion that “the community looks to the (senior) medical practitioners for the security they need to accept decisions of great moment, such as withholding futile treatment”.1 It is common for a referral to an intensive care unit to be made because “We asked the family, and they want everything done”. This is the least confrontational manner of “sorting out the resuscitation status” with the next of kin. Unfortunately, it shifts end-of-life decision making to others, particularly the family in crisis. This places additional stress on an already stressful situation. It often results in undignified, ultimately futile medical interventions and prolongation of dying. It is also a potential pastoral and mental health disaster for families. It is our duty of care to such patients to minimise the iatrogenic damage to their families by having senior clinicians communicate which therapies are appropriate, and thereby help families accept the likely prognosis. Ethically, we believe doctors should not harm families in crisis. Establishing when treatment is futile is difficult. The decision is often qualitative, with differing thresholds for futility. Personal and religious beliefs and anecdotal experience all affect the ability of a clinician to determine when a therapy is futile. We believe it is the duty of the clinician who performs an intervention, not the referring clinician, to determine its utility. A patient should not be referred to an intensive care unit if the intensivist believes the multitude of life-supporting therapies are not of clear benefit. If initiated, the intensivist should determine when such therapies are no longer of benefit. A framework for debate and review of contentious cases should be established within institutions as a matter of process. Sadly, intensive care units are increasingly seen as locations for palliative care. When a patient dies, it is unreasonable for referring clinicians to claim a clear conscience by saying “we did everything we could”, when the outcome is a prolonged, undignified death in an intensive care unit. Such deaths are not just wasteful of resources, but cause unnecessary distress to patients, their families and staff who care for them. We must not mistake “treating” our patients for “caring” for them. Doctors should be part of the solution, not part of the problem.

Thomas R Solano · James D Fratzia

To the Editor: Congratulations to Murphy1 for raising the important and sensitive issue of when to stop trying. This is an issue that needs to be discussed more widely in the community and in hospitals, and presented sensitively to all health students. We know that a significant proportion of the health dollar is spent on the last 12 months of life,2 but, more importantly (as Murphy points out), a clear decision, discussed openly with patients and their families, can save significant pain — both physical and emotional — to all concerned. Advance treatment orders can aid decision making in these situations, but need to be backed up with support for patients’ families when they are to be followed. This issue is with us now but will become more widespread in the future. Health professionals need to be well schooled in this important area of caring. We have to understand when to cease the desire to keep a patient alive. Modern health care has provided incredible advances but we are still not good at knowing and being “strong” in our beliefs and behaviour about when to stop.

Peter M Brooks

To the Editor: In the 7 April issue of the Journal, Murphy encouraged the medical profession to be more proactive about discussing end-of-life care options with family members (or next of kin) with a view to withholding care that may be considered futile by the clinical team.1 While we agree that it is important to offer advice about what course of action the clinical team recommends in a particular case, it is equally important that this advice be based on good evidence and sound clinical judgement. This can be difficult, even for experienced clinicians. Further, it is unwise to leave the family without any alternative but to accept that advice, because this can lead to distrust and disagreement between the family and the treating team. This is not a matter of acquiescing to a family’s unrealistic expectations — often the prognosis is not clear-cut, and there are times when a planned but limited trial of therapy is warranted. In complex situations, the prognosis often becomes obvious, and families can and do draw comfort from the fact that every effort was made, and are then more willing to accept limitation or withdrawal of therapy. In the case of withholding cardiopulmonary resuscitation, the treating team has sole responsibility for the medical opinion, but the family should be involved in the final decision and not have it enforced unilaterally.

Mathew Piercy · Graeme Duke

Handbook of dialysis therapy. 4th ed. Allen R Nissenson, Richard N Fine, editors. Philadelphia: Saunders, 2008 (1632 pp). ISBN 978 1 4160 4197 9. Renal replacement therapy for end-stage renal disease continues to be a complex area requiring integrated care by physicians, surgeons, nursing staff, technical staff and allied health staff. There is a continued need for well written books in this area, providing useful overviews and guides to formulating diagnostic and management plans. This handbook fulfils many of these criteria. Handbook of dialysis therapy is problem-oriented and clinically relevant, covering many areas of day-to-day management and long-term issues relating to the patient undergoing chronic dialysis. The standard medical topics in dialysis therapy are covered, as well as many other key areas for optimising patient management (such as the technical aspects of dialysis, setting up a dialysis unit, and nutritional, psychological, social, and pharmacological considerations). It includes topics relating to the adult and paediatric dialysis population, and a range of dialysis modalities available to patients. As a handbook in a very specialised area, it assumes a base level of knowledge by the reader, yet provides an easy-to-read overview for professional staff dedicated to the area of dialysis, including nephrology trainees. It is well referenced for further in-depth reading. Throughout the book, there are numerous summary tables and diagrams, making it reader friendly. If there are criticisms to be mentioned, they mainly relate to the brief nature of some chapters; however, the intention of the authors was always the provision of a wide coverage of topics in a concise style. Considering the extent of the areas covered, the authors have done well to balance breadth and detail. Chapters are written by a number of prominent individuals in the area of nephrology. I am impressed with the practical daily considerations that are covered — one of the book’s strengths. In addition, this handbook would appeal to both medical and allied health staff, particularly to those at an early stage in their careers involving the management of patients undergoing dialysis therapy.

Francesco L Ierino

Objective: To compare attitudes and practices of Australian medical practitioners, by specialty, to a range of medical decisions at the end of life.Design, setting and participants: As part of an international study, in 2003, a structured questionnaire was mailed to 2964 medical practitioners drawn from membership registers of Australian and Australasian professional colleges. Data from 1478 questionnaires were statistically analysed using validated instruments.Main outcome measures: Practitioners’ willingness to comply with requests from patients and/or their relatives for symptom relief which might also hasten death; provision of terminal sedation and euthanasia, or willingness to provide these on their own initiative.Results: Respondents reported being much more willing to comply with a patient’s request for increasing symptom relief, even at risk of hastening death, than for terminal sedation. Over a quarter of respondents would provide terminal sedation to competent patients on their own initiative. A small number of respondents would intentionally hasten death. There were significant differences by specialty for all three actions. Oncologists, palliative care physicians and geriatricians were least likely to actively hasten death, and more likely to act unilaterally to relieve symptoms as a medical necessity.Conclusions: Perceptions about the causation of death and aspects of medical culture appear to influence physicians’ attitudes towards medical decisions at the end of life. Our findings have implications for medical education, interprofessional communication and discussion between the medical profession and the community.

Malcolm H Parker MLitt, LLM, FACLM · Colleen M Cartwright PhD, MPH, BSocWk(Hons) · Gail M Williams PhD, MSc, MSc(Epidem)

Handbook of advanced cancer care. Raphael Catane, Nathan Cherny, Marianne Kloke, et al, editors. Oxford: Taylor & Francis, 2006 (ix + 278 pp). ISBN 978 0 415 37530 6. As it discusses issues that lie at the interface of oncology and palliative care in this country, the Handbook of advanced cancer care is more useful than its title might suggest. It will be valuable not only to specialists but also to nurses, general practitioners and doctors in training. The book was commissioned by the European Society for Medical Oncology and describes many situations that would be familiar to Australian cancer specialists. The treatments too are familiar and readily available. Overall, the text is pleasingly comprehensive for a small book, up to date and practical. The authors begin by making the important point that even in advanced cancer, specific anticancer treatments (chemotherapy, radiotherapy) can be the best way of improving quality of life, and in some far advanced cases can even still be curative: think, for example, of disseminated germ cell tumours. In addition to the expected topics (such as pain, constipation, and hypercalcaemia), there are useful entries concerning fungating wounds, hiccups, sweating and pressure sores. Modern drugs such as buprenorphine are included. For this older oncologist, it was comforting to read that ‘‘[o]lder patients in overall good health are able to tolerate chemotherapy as well as their younger counterparts...”. This is a statement that might not have been made a few years ago. There are useful chapters about communication for the health professional, the place of psycho-oncology, and how to handle bereavement. In the latter chapter, I particularly endorse the advice that medical practitioners should routinely indicate to the relatives that they are available for a visit after the patient’s death to discuss “leftover” questions. There is limited repetition — Tables 1.1 and 7.1 are identical and Tables 1.2 and 7.2 virtually so. Although the idea of providing algorithms is useful for clinical practice, the deep colours chosen for the various boxes make it difficult to read the text within. There is a description of massive terminal haemoptysis but not of catastrophic terminal haematemesis. Perhaps the most serious shortcoming, though, is that the chapter on pain glosses over the need to make a diagnosis of its cause before considering symptomatic treatment options. In summary, this is a useful, concise handbook which would soon be well thumbed if made available on the oncology and palliative care wards. In days gone by, it would have fit neatly into the pocket of a white coat, but who wears those any more?

Raymond M Lowenthal

Palliative care: core skills and clinical competencies. Linda L Emanuel, S Lawrence Librach, editors. Philadelphia: Saunders, 2007 (xxi + 705 pp). ISBN 978 1 4160 2597 9. What can we learn from Americans about palliative care? “Not much!” you might say, especially when this book’s foreword — by Balfour Mount — is largely devoted to the legacy left by British pioneers like Saunders and Kearney. But palliative care is rapidly taking off in the United States, as the many new textbooks from there attest. So is this one worth reading? While some contributors are well known (Mount, Emanuel, Bruera, Buckman, Meier, Fainsinger), most will be unfamiliar to Australian readers. Pitched at the student/trainee level, or the non-specialist provider, it has a very practical orientation (eg, Buckman’s “SPIKES” protocol for breaking bad news, and a six-step protocol for eliciting the goals of therapy), providing insight into the emerging North American approach to palliative care. These methods might not go down well here, but they serve as a useful teaching resource. Being a soft-covered handbook comprised of 40 short chapters, divided into four sections, Palliative care represents good value for money. Section one, “Core skills”, takes up the first half of the book, and a large part of that is on symptom control. All chapters are written to a template, making it reader-friendly, each one concluding with “Pearls”, “Pitfalls” and a short summary. References are limited to 20 per chapter, but there are also useful resources lists (Internet and non-Internet). Symptom control chapters broadly cover their subjects and the therapeutics are up to date. For example, ketamine is mentioned in Fainsinger’s pain chapter, but dealt with in 35 words. Most common problems faced in modern palliative care practice are covered, including chapters on advanced care planning and handling euthanasia requests. But there is nothing on prognostication, an important omission. While the North American focus can grate, the chapters giving the US perspectives on suffering, legal and ethical issues, the economic burden of illness, and reimbursement for physicians make for interesting reading for Australian palliative care practitioners interested in the future directions of their specialty.

Paul A Glare

Textbook of regional anesthesia and acute pain management. Admir Hadzic, editor. New York: McGraw-Hill Medical, 2007 (xviii + 1259 pp). ISBN 978 0 07 144906 X. In this text, Hadzic aims to provide the scientific basis for the practice of regional anaesthesia, integrating it into the multimodal approach to acute pain management. He has selected 126 contributors, most of whom are American, to write the 83 chapters, nearly all of which are multiauthored. The result is a well coordinated treatise on every aspect of regional anaesthesia, serving as an excellent introduction to the postgraduate study of the subject. No topic is ignored — community practice, the austere environment, and the principles of statistical methods of research are unique inclusions. As well, the new techniques of ultrasound-guided nerve blocks are well covered. The management of postoperative pain introduces latest concepts including multimodal analgesia (although the organisation of an acute pain service has a rather rigid North American approach). The book is very well laid out, punctuated with coloured boxes containing “Clinical pearls” and tabular summaries. It is profusely illustrated with anatomical diagrams, photographs of positioned patients, equipment and some anatomical dissections. While these break up the text into easily readable bites, the photographs are occasionally overdone; repetitive images showing slightly different needle positions add little to the clear descriptions. Some anatomical drawings are too diagrammatical and do not give an easy understanding of the point being made. A final minor criticism: there are slight inaccuracies in the description of the surface anatomy of some nerve blocks, particularly those of the ilioinguinal and iliohypogastric nerves, and of the greater occipital nerve. A newcomer to the art of regional anaesthesia needs three guides — clear textbooks, access to accurate recent concepts and helpful teachers. This textbook admirably fills the first two requirements.

Ken W Sleeman

Objective: To determine the prevalence, staffing, methods, timing and allocation of bereavement programs in Australian palliative care services.Design: Questionnaire-based postal survey.Setting and participants: The questionnaire was mailed in January 2007 to all 324 palliative care centres identified from the Australian Palliative care national directory 2004.Results: 236 of the 324 centres responded (73%), and 95% of these undertook bereavement follow-up, with similar prevalence in metropolitan and regional areas. Staff from a range of disciplines were involved in coordinating and delivering these services, with nurses taking on these roles in most regional centres. Common types of bereavement follow-up included individual sessions and visits, telephone contact, letters, anniversary cards and memorial services. Most centres (74%) approached the bereaved within 2 weeks of the death, and 83% of centres offered bereavement support to families or “significant others” of all patients who died under their care. Some form of risk assessment for complicated grief was performed by 69% of participating centres.Conclusion: Bereavement care is an integral part of Australian palliative care services. Given the multidisciplinary staffing demonstrated, it is important that those coordinating and delivering these programs are adequately trained and supported. There is a need for further research to guide the development of bereavement support practice.

Mark A Mather BMed · Phillip D Good FRACP · John D Cavenagh FRCA, FAChPM, MMedSci(Epidemiology) · Peter J Ravenscroft MD, FRACP, FAChPM

Objective: To describe the incidence and risk of suicide in cancer patients in Western Australia from 1981 to 2002.Design, setting and patients: Retrospective cohort study of patients diagnosed with cancer in WA from 1981 to 2002, using data from the WA Linked Database.Main outcome measure: Age-standardised mortality ratios (SMRs).Results: A total of 121 533 patients were diagnosed with cancer, corresponding to a total of 543 696 person-years at risk. There were 129 suicides in this group (108 in men). The SMR for suicide in cancer patients was 1.61 (95% CI, 1.36–1.92). An initial period of peak risk was seen in the first 3 months after cancer diagnosis (SMR, 5.75; 95% CI, 3.89–8.51), mainly in patients with a poor prognosis. A second peak period of risk was found to occur 12–14 months after diagnosis (SMR, 2.33; 95% CI, 1.11–4.89) in those with a good or moderate prognosis.Conclusion: The rate of suicide in cancer patients in WA is low and represents an excess of two to three suicides per year, or 0.3% of all cancer deaths, comparable to studies in other Western countries. The risk is highest in the first 3 months after diagnosis, and a second period of increased risk 12–14 months after diagnosis may occur in response to cancer recurrence or treatment failure.

Nigel R C Dormer MB BS, MRCGP, DRCOG · Kieran A McCaul MPH · Linda J Kristjanson RN, BN, PhD

Contents Contributors Summary Guideline development and use Methods of guideline development Literature review Expert advisory panel Target audience How to use the guidelines Grading of recommendations Limitations of the guidelines The guidelines Timing of prognostic and end-of-life discussions Preparation for the discussion Physical and social setting How to discuss prognosis and end-of-life issues General strategies to facilitate hope and coping when discussing prognosis and end-of-life issues Additional background information about specific content areas and issues Role of self-care Endorsing organisations References Contributors Writing committee Dr Josephine M Clayton (Chair) — Head of Department of Palliative Care, Royal North Shore Hospital, Sydney, NSW; Senior Lecturer and Cancer Institute NSW Research Fellow, Faculty of Medicine, University of Sydney, Sydney, NSW. Dr Karen M Hancock — Project Coordinator and Research Associate, Medical Psychology Research Unit, University of Sydney, Sydney, NSW. Professor Phyllis N Butow — Professor of Psychology, University of Sydney, Sydney, NSW. Professor Martin H N Tattersall — Professor of Cancer Medicine, University of Sydney, Sydney, NSW. Professor David C Currow — Professor of Palliative and Supportive Care, Flinders University, Adelaide, SA. Correspondence: jclaytonATmed.usyd.edu.au Australian and New Zealand Expert Advisory Group Dr Jonathan Adler, Palliative Care Physician Professor Sanchia Aranda, Cancer Nursing Dr Kirsten Auret, Palliative Care Physician Dr Fran Boyle, Medical OncologistDr Annette Britton, GeriatricianAssociate Professor Richard Chye, Palliative Care PhysicianDr Katy Clark, Palliative Care PhysicianAssociate Professor Patricia Davidson, Cardiac NursingDr Jan Maree Davis, Palliative Care PhysicianProfessor Afaf Girgis, Behavioural ScientistDr Sara Graham, Carers NSW Representative/AdvocateProfessor Janet Hardy, Palliative Care PhysicianMs Kate Introna, Palliative Care NursingProfessor John Kearsley, Radiation OncologistProfessor Ian Kerridge, Ethicist and HaematologistProfessor Linda Kristjanson, Palliative Care NursingDr Peter Martin, Palliative Care PhysicianDr Amanda McBride, General PractitionerMs Anne Meller, Aged Care NursingAssociate Professor Geoffrey Mitchell, General PractitionerDr Alison Moore, LinguistMs Beverley Noble, Cancer Voices Consumer RepresentativeProfessor Ian Olver, Medical OncologistMs Sharon Parker, Nursing, Clinical Trials ResearchAssociate Professor Matthew Peters, Respiratory PhysicianDr Peter Saul, Intensive Care SpecialistAssociate Professor Cameron Stewart, LawyerMs Lyn Swinburne, Breast Cancer Network Australia Consumer RepresentativeDr Bernadette Tobin, EthicistMs Kathryn Tuckwell, LinguistProfessor Patsy Yates, Palliative Care Nursing SummaryPrognostic and end-of-life communication is a vital skill for health care professionals caring for patients with progressive life-limiting illnesses, and their families. Expert opinion varies, and high-quality evidence on how best to discuss these issues with such patients and their caregivers is limited. These guidelines were developed to address these issues. The guidelines were developed through the following methods: Systematic literature review of the best available evidence on discussion of prognosis and end-of-life issues; Review of previous relevant guidelines and expert opinions in the literature; and Refining of draft guidelines by an expert advisory panel. The key recommendations of these guidelines are for health professionals to consider the recommendations conveyed by the acronym PREPARED. Prepare for the discussion, where possible: Confirm pathological diagnosis and investigation results before initiating discussion. Try to ensure privacy and uninterrupted time for discussion. Negotiate who should be present during the discussion. Relate to the person: Develop rapport. Show empathy, care and compassion during the entire consultation. Elicit patient and caregiver preferences: Identify the reason for this consultation and elicit the patient’s expectations. Clarify the patient’s or caregiver’s understanding of their situation, and establish how much detail and what they want to know. Consider cultural and contextual factors influencing information preferences. Provide information, tailored to the individual needs of both patients and their families: Offer to discuss what to expect, in a sensitive manner, giving the patient the option not to discuss it. Pace information to the patient’s information preferences, understanding and circumstances. Use clear, jargon-free, understandable language. Explain the uncertainty, limitations and unreliability of prognostic and end-of-life information. Avoid being too exact with timeframes unless in the last few days. Consider the caregiver’s distinct information needs, which may require a separate meeting with the caregiver (provided the patient, if mentally competent, gives consent). Try to ensure consistency of information and approach provided to different family members and the patient and from different clinical team members. Acknowledge emotions and concerns: Explore and acknowledge the patient’s and caregiver’s fears and concerns and their emotional reaction to the discussion. Respond to the patient’s or caregiver’s distress regarding the discussion, where applicable. (Foster) Realistic hope: Be honest without being blunt or giving more detailed information than desired by the patient. Do not give misleading or false information to try to positively influence a patient’s hope. Reassure that support, treatments and resources are available to control pain and other symptoms, but avoid premature reassurance. Explore and facilitate realistic goals and wishes, and ways of coping on a day-to-day basis, where appropriate. Encourage questions and further discussions: Encourage questions and information clarification; be prepared to repeat explanations. Check understanding of what has been discussed and if the information provided meets the patient’s and caregiver’s needs. Leave the door open for topics to be discussed again in the future. Document: Write a summary of what has been discussed in the medical record. Speak or write to other key health care providers involved in the patient’s care. As a minimum, this should include the patient’s general practitioner. Guideline development and useDiscussing prognosis and end-of-life issues has been identified as an important component of care by patients with progressive life-limiting illnesses, and their families.1,2 Being adequately informed is essential for such patients and their caregivers to participate in decisions about their treatment and care, to set goals and priorities, and to prepare for death. Clinicians need to provide information in a way that assists patients and their families to make appropriate decisions, be informed to the level that they wish, and cope with their situation. These guidelines have been prepared to assist clinicians with this difficult but important task. Methods of guideline developmentThe guidelines were developed using the following process: Literature review: systematic review of the best available evidence regarding discussion of prognosis and end-of-life issues with patients with a progressive life-limiting illness, and their caregivers; and review of previous related guidelines and expert opinions. Refining of guidelines with an expert advisory panel. Literature review Systematic reviewThe systematic review3 was conducted in conjunction with personnel of the systematic review section of the National Health and Medical Research Council (NHMRC) Clinical Trials Centre, in accordance with the principles and processes recommended by the Cochrane Review.4 Eligible studies were those that sampled adult patients who had an advanced progressive life-limiting illness with less than 2 years to live, including but not restricted to cancer, end-stage pulmonary disease, end-stage cardiac failure, and motor neurone disease; and/or the caregivers (including bereaved relatives) of such patients; and qualified health care professionals. More specifically for studies where patients formed the study group, the eligibility criteria included: patients in specialist palliative care or hospice settings (inpatient or community), and patients in any care setting with a diagnosis of an advanced life-limiting illness being treated with palliative intent and with a life expectancy of less than 2 years. Where samples were mixed (ie, potentially curable and advanced disease), studies were included if more than 50% of patients had an advanced life-limiting illness or where the results for such patients were provided separately. Studies where patients formed the study group were excluded if they involved patients with chronic diseases with likely life expectancy of greater than 2 years (such as dementia and multiple sclerosis), patients being treated with curative intent, or patients being cared for in an intensive care unit, or if it was not possible to determine what percentage of the study group was being treated with palliative intent or had a life expectancy of less than 2 years. The medical literature was searched to identify relevant studies and reviews for the period between 1966 and November 2004. Searches were conducted via MEDLINE, CINAHL, EMBASE, Psycinfo and the Cochrane Register of Controlled trials (Central). Out of 4167 abstracts retrieved by electronic searches, and a further 127 abstracts identified by hand searching, 278 full manuscripts were considered for inclusion in the review. One hundred and fifty-one did not meet the eligibility criteria and four were duplicates; hence, 123 articles were included. Individual reviewers extracted data from each study using a standard format. Data extraction was checked by a second reviewer for 10% of studies to ensure consistency. Most studies were descriptive, examining provider practices and patient and/or caregiver views, attitudes, knowledge and behaviour (Level IVa evidence according to the NHMRC 1995 ratings5). Such studies are not considered admissible evidence in the more recent NMHRC rating scale.6 These NHMRC rating scales are designed for research questions regarding interventions, diagnosis, aetiology, screening and prognostic factors, but are not readily applicable to the topic of these guidelines. Review of consensus guidelines and expert opinionRelevant consensus guidelines and expert opinion were incorporated into the guidelines because of the lack of evidence for some topics. Consensus guidelines in similar areas were retrieved via hand searching and the search strategy for the systematic review. They were excluded from the systematic review because they were not studies. These guidelines included areas such as breaking bad news (n = 2), psychosocial clinical practice guidelines for women with breast cancer (n = 1), clinical practice guidelines for advanced breast cancer (n = 1), therapeutic guidelines for palliative care (n = 1), advance directives (n = 1) and end-of-life care (n = 1). These guidelines used a rigorous consensus-building process, with many commissioned by the Australian or New South Wales Government and endorsed by national peak bodies. Published expert opinion — the considered opinion of clinical experts (n = 12) regarding communication of prognosis and end-of-life issues with patients, and their families, with advanced life-limiting illnesses — was reviewed and cited for areas where there was a lack of studies or consensus. Expert advisory panelAn expert panel was convened, comprising 35 Australian and New Zealand health care professionals and consumers (nine palliative care medical specialists, three medical oncologists, three palliative care nurses, three consumers [including two cancer patients and one caregiver], two general practitioners, two psychosocial experts, two ethicists, two linguists, one oncology nurse, one cardiology nurse, one aged care nurse, one research nurse, one geriatrician, one respiratory physician, one radiation oncologist, one intensive care specialist, and one lawyer). The panel members were selected to reflect the multidisciplinary nature of care for patients with advanced progressive life-limiting illnesses. Representatives were selected on the basis of either their clinical expertise or a track record of publications on this topic. Consumer bodies, such as Carers NSW and Cancer Voices NSW, were approached and provided consumer representation. The guidelines were refined with the assistance of this expert panel using consensus methods (modified nominal group technique/Delphi method7). This group was sent the guidelines by mail and asked to evaluate them (both by rating each individual point using a nominal scale and by providing suggested word changes and comments following critical review). The group then had a face-to-face meeting and discussed discrepancies of opinion and all items rated by at least 10% of the panel to be either “not important” or “somewhat important” (a score of 1 or 2 on a five-point scale where 3 was “important” and 5 was “essential”). Following the meeting, the research team refined the guidelines based on the recommendations of the expert panel. The final draft was sent again to the expert panel for a further round of feedback and final approval. Target audienceThese guidelines were developed for use by all members of the health care team involved in the care of patients with progressive life-limiting illnesses, and their families, including GPs, specialist doctors and trainees (including palliative care, medical and radiation oncology, surgical oncology, geriatrics, haematology, respiratory medicine, cardiology, and neurology), junior medical staff, nurses, social workers, psychologists, psychiatrists, physiotherapists and occupational therapists. Some health care professionals (such as junior medical staff, generalist nurses and some allied health staff) may not feel it is their role to be giving detailed prognostic or end-of-life information to patients. However, the general principles in these guidelines are relevant for all health care professionals interacting with this patient population and their families at home or in hospital. How to use the guidelinesDiscussions about prognosis and end-of-life issues can be conceptualised as a process of ongoing conversation over time, rather than a single discussion.8 Hence, the material in these guidelines is best covered with patients and caregivers over multiple consultations, depending on the clinical circumstances and information needs of the patient and caregivers. The response of patients and their caregivers will dictate the pace and volume of material to be discussed. Some of the issues (eg, likely symptoms and how they are treated, what will happen close to death) will be covered in different ways, or not at all, in the initial conversation compared with when the symptoms start appearing or accelerating. In the first instance, they can be discussed in general terms, and later in specific terms. It is important to give the patient and family an opportunity to have their information needs met regarding these topics, but at the same time to prevent overloading the patient and caregiver both informationally and emotionally. The guidelines assume a relatively high level of knowledge, generic communication skills, and judgement. Maximum benefit in applying the guidelines by trainees or junior health care professionals may be facilitated by attending a basic communications skills workshop.9 Background information regarding some recommendations in the guidelines is given in the text. The recommendations themselves are presented in Boxes 1 to 16. Boxes 1 to 5 are relevant to all discussions of prognosis and end-of-life issues, and address the following topics: timing of the discussion, preparation for the discussion, physical and social setting, how to discuss prognosis and end-of-life issues, and general strategies to facilitate hope and coping. Boxes 6 to 16 are specific to certain content areas or issues. Useful phrases are given where applicable. It is suggested that you choose a phrase that fits your style and with which you feel comfortable. Some of the phrases can be adapted for your own use. Grading of recommendationsThe recommendations detailed in Boxes 1 to 16 are graded as follows: DS = descriptive study or studies; CG = existing consensus guidelines; EO = published expert opinion; and RGP = recommended good practice based on the clinical and consumer consensus opinion of the expert advisory group and chief investigators. Limitations of the guidelinesThe systematic literature review which informed these guidelines was limited to studies of patients, and/or their caregivers, with a known progressive life-limiting illness. The recommendations or suggested phrases may not be applicable to patients with debilitating chronic illnesses with a life expectancy of more than 2 years, patients having treatment with curative intent, and those in whom intensive care treatment would still have a reasonable chance of being effective. Likewise, end-of-life discussions with well elderly people, those in aged care facilities with uncertain disease trajectories, and patients in the early stages of dementia are beyond the scope of these guidelines. All the articles included in the systematic review were written in English, and most of the patient and caregiver participants were from Anglo-Saxon backgrounds. Hence, some caution is required when interpreting these guidelines for patients from non-Anglo-Saxon backgrounds. The guidelinesDiscussing prognosis and end-of-life issues is difficult. Research has identified deficiencies in communication between health care professionals and patients regarding prognosis and end-of-life issues.10 Many health care professionals are uncomfortable discussing these topics.11,12 Reasons include perceived lack of training, stress, no time to attend to the patient’s emotional needs, fear of upsetting the patient, and a feeling of inadequacy or hopelessness regarding the unavailability of further curative treatment.13-17 Such avoidance can lead to poorer patient satisfaction and psychological morbidity.18,19 If information provision is not honest and detailed, patients may perceive that health care professionals are withholding potentially frightening information.20,21 When cancer patients are not adequately informed of their prognosis, they are more likely to choose aggressive anticancer treatments22 and make decisions that they later regret.23 Therefore, it is in the patient’s best interests to offer such information rather than withhold it in an attempt to protect the patient from losing hope or being upset. Although many health care professionals believe introducing the topic will unnecessarily upset the patient and dispel any hope, evidence suggests that patients can engage in such discussions with minimal stress24 and maintain a sense of hope even when the prognosis is poor.8 In addition, awareness of prognosis is associated with greater satisfaction with care and lower depression levels in patients.18,19 Timing of prognostic and end-of-life discussions (Box 1)Most patients from Western countries prefer some information regarding prognosis when first diagnosed with a life-limiting illness.25,30,31 However, this information can be difficult to comprehend at this time,32 and one study indicated that patients found the information distressing if they had not asked for it.25 In one study, most palliative care patient and caregiver participants felt that it was appropriate and important for the doctor or nurse to make this an accessible topic, because they may find it difficult to raise it themselves.15 Box 1 gives recommendations for when the health care professional should consider raising the topic, apart from when the patient initiates the discussion (eg, by asking a question). Preparation for the discussion (Box 2)If the consultation is planned, it is important to provide consistent, accurate information by reading clinical records, speaking with health care professionals, and researching the literature to obtain up-to-date knowledge.17,28,33-35 It is helpful for health care professionals to be aware of their own feelings of grief, anxiety or guilt (including fears about holding the discussion), particularly if they have known the patient for some time. These are normal responses, and self-acknowledgement may avoid projecting feelings or biases onto the patient or caregiver.36 Physical and social setting (Box 3)Relationship between the health care professional and patient or caregiverGood interaction between the patient and health care professional is fundamental to effective communication,43 and patients facing a progressive life-limiting illness place great emphasis on the relationship with their health care professional.2 Most patients prefer the information to come from a confident expert (ie, not delegated to the most junior person on the team).1,25,37-40,44 While having a long-term relationship is important for many patients in discussing prognostic and end-of-life issues, even the first consultation may be a time when some issues can be comfortably explored.15,35,38,45 Who else should be present during the discussionAlthough it may be beneficial to provide support and ensure continuity of care by having another health care professional present,37,44,46 some patients are not in favour of this approach.31 Some research suggests that some patients wish to receive information from a different health care professional or another person (eg, priest),15 indicating that the health care professional needs to negotiate who delivers the information. Most but not all patients want to have a family member or friend with them.25,34,35 This should be ascertained. How to discuss prognosis and end-of-life issues (Box 4)Importance of generic communication skillsTrust can be built by using an empathic, patient-centred style.41 Good generic communication skills involve using eye contact (if culturally appropriate); using appropriate body language such as an open posture; sitting close to the patient; active listening such as nodding or making noises of agreement or encouragement to indicate understanding; reflecting empathically; and showing compassion by using a warm, caring, and respectful manner.1,2,25,37,39,44,47,49 An empathic, patient-centred style also involves using open-ended questions with an emotional content. This approach has been shown to elicit greater expression of feelings compared with the use of closed questions.71 These open-ended questions can be asked before discussing prognosis, palliative care or end-of-life issues so that the patient’s concerns, goals and values can be determined.72 It can also help create an atmosphere where the patient is treated as a “whole person” (as well as the family) and feels that the health care professional is interested in and sensitive to their problems and feelings.73 Clarifying patient and caregiver understandingEstablishing the patient’s and caregiver’s understanding of the situation helps establish a common ground from which to start the discussion.74 In initial consultations, the health care professional could elicit patient understanding when obtaining the patient’s illness history (eg, by allowing them to tell their story and asking focussed or open-directive questions to clarify certain points).73 When the patient is well known to the health care professional, it may be more appropriate to consider summarising what has happened with their illness so far, before moving on to the current situation and clarifying the patient’s understanding. Clarifying information needsThere is evidence that doctors are not good at predicting patients’ information preferences, and tend to underestimate patients’ need for information.75-77 Doctors frequently perceive that the patient has a greater awareness or understanding than the patient reports.22,77-81 Patients with cancer and other life-limiting illnesses frequently have misunderstandings about their illness, prognosis and goals of treatment.22,77,79,80 Some of the reasons may be to do with patients’ tendencies to forget 40%–50% of the information given to them by doctors;82 they may find it difficult to absorb information if they are distressed; they may not understand the language or jargon used, particularly if the information is not communicated clearly;83,84 and they may deny or subconsciously block-out information that they find unacceptable80,85 as a way of coping with their illness.86 Additionally, doctors may withhold information, particularly if there are family requests for information to be imparted through the family rather than doctor to patient, as is the case in some cultures.55,57 Many studies suggest that most patients (at least from Western countries) have high information needs concerning prognosis and life expectancy;2,15,25,31,39,60,87-90 however, a sizable minority do not want full disclosure.31 Many patients and caregivers want information about the likely illness trajectory, treatment options and what they may accomplish, life expectancy, likely future symptoms, and what to expect around the time of death.8,25,60,61,88,90-93 However, patients may experience conflict between wanting to know and fearing bad news.61 Although most patients have high information needs, the different types of prognostic and end-of-life information may be preferred over a series of consultations or at different times, depending on the context and the patient’s stage of illness.26 Evidence suggests that patients may want less prognostic detail about their illness as they become sicker, while caregivers may want more information, especially as death approaches.25,52 Younger and more educated patients may want more detailed information.28,31,49,87,94 Some patients may never want some types of information. For example, while most patients in Western cultures want to be informed that their lifespan will be limited by their illness, some patients do not want to be given the likely timeframe.1,26,42,61,95 Patients from some cultural backgrounds may prefer non-disclosure, or disclosure negotiated through the family, when life expectancy is short.55,57 It is not possible to make assumptions about individuals’ information needs based on their demographic characteristics or cultural background. It is important to tailor information to individual needs, as preferences for the amount, type and timing of information vary. General strategies to facilitate hope and coping when discussing prognosis and end-of-life issues (Box 5)Many health care professionals have difficulty in disclosing a limited life expectancy while maintaining the patient’s hope, yet patients, caregivers and health care professionals have identified hope as an integral component of prognostic and end-of-life discussions.2,25,42,60,61,63,97,98 These studies also emphasise the importance of balancing honesty with hope and empathy. There are different views of what constitutes an honest approach. Some studies of patients with advanced illness have found that accurate information is equated with honesty, but it was important that this was not combined with bluntness or too much hard factual or detailed information.42,98 Others have defined honesty as a straightforward or direct approach.2,25 Several studies have addressed the construct of hope within the end-of-life context. Hope can take a variety of forms, ranging from the hope of a miracle cure to the hope of a peaceful death, and patients may simultaneously hope for a cure as well as acknowledge the terminal nature of the illness. Some patients may avoid enquiring about progress or symptoms in order to maintain hope for the future.42,91 Patients have reported obtaining a sense of hope from relationships, beliefs and faith, maintaining dignity, finding inner peace, thinking about meaningful events in their lives, having symptom control and reassurance that pain will be controlled, and enjoying a sense of humour, including occasional humour from the health care professional.31,60 In addition, studies have found that hope can be maintained by having a health care professional who is knowledgeable and offers to answer all of the patient’s questions, offers hope for new developments in treatment, treats the patient as a “whole person”, acknowledges difficulties in giving prognostic estimates, presents information about palliative care at a rate that the patient can assimilate, and respects alternative treatments.25,31,99,100 Additional background information about specific content areas and issuesCommencing or changing disease-specific treatments (eg, chemotherapy) (Box 6)In the setting of an advanced progressive life-limiting illness, the main goals of disease-specific treatments are to improve the length and quality of life. It is important that the patient understands that cure is not a treatment goal, but that there may be treatments that can slow the progression of the disease or provide symptom relief. Discussion should be informed and focus on the balance between the potential effectiveness of treatments on prolonging life versus the side effects. It is important that the patient has the opportunity to be involved in the decision-making process, according to their desired level of involvement.46 Cessation of disease-specific treatments (eg, chemotherapy) (Box 7)When patients hear news of lack of treatment response, clinicians should be prepared for a wide range of emotions such as sadness, anger or despair.109 It is important that such news be given in an empathic way, and the continued availability of supportive and symptomatic care is emphasised. Introducing specialist palliative care services (Box 8)The World Health Organization defines palliative care as: an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.112 A “palliative approach” is an approach to care used by primary health care services and providers in accordance with the definition of palliative care outlined above.113 “Specialist palliative care services” refers to multidisciplinary health care services whose “substantive work is with patients who have a life limiting progressive illness”.110 Specialist palliative care services are not available in all parts of Australia, especially in rural areas. In addition, not all patients with advanced progressive life-limiting illnesses require specialist palliative care services — some may be cared for most appropriately by their primary care providers.113 For patients with more complex palliative care needs (eg, those requiring specialist assessment or ongoing input for management of physical, psychological, spiritual or social issues), referral to specialist palliative care services, where available, is appropriate at any time from the first diagnosis of a progressive life-limiting illness. Patients may only need to see a specialist palliative care service initially for a limited time to assist in the management of a particular problem, such as uncontrolled pain. As the patient’s illness progresses, he or she may need referral to community palliative care services or to an inpatient palliative care unit for terminal care. In comparison to conventional care, specialist palliative care services improve patient and caregiver satisfaction, provide better pain and symptom control, reduce caregiver anxiety, and increase the likelihood of the patient being cared for during the terminal phase in their place of choice.114 However, referral to specialist palliative care services may evoke fears of impending death, helplessness and abandonment in the patient if this is not communicated sensitively and effectively by the health care team. Discussing life expectancy (Box 9)Various approaches to phrasing life expectancy have been reported in the context of an advanced progressive life-limiting illness: days versus weeks versus months, likelihood of being alive for certain events, rough range, and probabilistic (eg, 10% and 50% survival). However, whether one approach is superior to others has not been examined. Consistent findings in the literature are that it is important to avoid being exact with timeframes unless in the final days of life, and to explain the unreliability of making survival predictions. However, research has found that patients may prefer being asked if they would like a rough idea of their life expectancy.15,42 Two studies have found that patients may prefer words or numbers to explain the prognosis instead of descriptive tools such as pie charts and graphs.26,35 Discussing future symptoms and symptom management (Box 10)The possibility of uncontrolled pain in the future concerns many people, so it is important to offer reassurance that pain can be controlled in the vast majority.8,25,49,61 It is not clear whether it is appropriate for the health care professional to discuss uncommon but potentially problematic symptoms (eg, seizures and suffocation, or bleeding) and what to do should these occur.8,20,26,53,88,101 The benefits (of forewarning a patient or caregiver and having procedures in place) versus the potential harm (of worrying the patient or caregiver to a point of unnecessary distress about the possibility of the situation, albeit unlikely, occurring) need to be considered. Caregivers may need more specific information than the patient about how to care for the patient as the illness progresses25,53,119 and how to get help when complications arise at home. Advance care planning (Box 11)Advance care planning refers to discussion of treatment decisions and choices and goals of care at the end of life, and the patient’s wishes for medical care in the future if they are no longer able to be involved in the discussion. The possible benefits of advance care planning are that it may help patients ensure that, when they are no longer able to make decisions for themselves, they receive the kind of treatment and care they would prefer. In addition, advance care planning may relieve the burden of decision making for caregivers, and facilitate open communication between patients and caregivers.120,125,129 An advance directive is a statement (either made orally or in writing) by a person that outlines their wishes for future health and personal care. The directive generally becomes effective when the person is unable to make his or her own decisions. Advance directives130 are legally binding in Australia, either at common law or under statutes. The Australian Capital Territory, Northern Territory, Queensland, South Australia and Victoria have statutory schemes for advance directives. In the other states, the law of advance directives is governed by common law. Although the evidence suggests that people are willing to write such documents,131 they may have little effect on treatment decisions, including decisions to resuscitate.132-134 In some jurisdictions, a person can make an enduring medical power of attorney, or appoint someone as an enduring guardian, whereby a family member or other trusted person is appointed to make health decisions on the person’s behalf should the person lose the mental capacity to make his or her own decisions. Even in the absence of such an appointment, all Australian jurisdictions have guardianship arrangements that recognise the authority of people close to the patient to make medical treatment decisions on that person’s behalf in the event of lack of decision-making capacity. Including these substitute decisionmakers in discussions has been shown to improve the effectiveness of advance care planning.135,136 In-depth discussion of advance directives and enduring medical powers of attorney are beyond the scope of these guidelines. The status of advance directives and the status and responsibilities of representatives of incompetent patients is complex and varies from jurisdiction to jurisdiction. Legal advice may need to be sought. Discussion of cardiopulmonary resuscitation (Box 12)It is important for health care providers to ensure that cardiopulmonary resuscitation (CPR) is not attempted inappropriately in someone who is dying an expected death, by documenting “do not attempt CPR” in the medical records.122,128,137,138 If ambulance transfers are being arranged, paramedics will also need to be informed in the manner required by the local ambulance service (check local policies and procedures). There is considerable debate about the appropriateness of discussing CPR orders with dying patients. Some guidelines recommend that CPR should always be discussed with the patient (or family if the patient is incompetent).146 Other guidelines state that there is no ethical obligation either to perform or to discuss CPR when it is judged to be clinically futile.144,147 There is no common law requirement in Australia to attempt treatment, even life-prolonging treatment, which is judged to be of insufficient therapeutic benefit (“clinically futile”) or is overly burdensome.44,127,148,149 However, the use of the terms “clinical futility” and “medical futility” is also controversial, as it has been argued that such terms are not capable of objective definition and may give rise to disputes between the treatment team and the patient’s family.150 There is little research evidence to guide policies about whether it is desirable to discuss “no CPR” orders with dying patients before documentation. One Australian study of patients with cancer provides support from the patient’s viewpoint that CPR is not preferable when death is imminent and inevitable.151 Another study found that some patients prefer to defer the timing of the decision to the doctor and do not wish to discuss the topic.152 Decisions about whether to offer or provide CPR should be made on an individual basis on the grounds of likely benefit versus likely burden. Nevertheless, in situations where it is clear that the patient is dying from a far-advanced progressive life-limiting illness and the clinician has decided that CPR is not to be performed on the basis of clinical futility (ie, negligible chance of survival with or without CPR and burdens of CPR far outweigh the benefits), then it should not be presented to patients or their caregivers as if it were an appropriate treatment option.153 This does not mean that it should not be discussed (such discussions may still be an important part of terminal care), but mostly in these circumstances patients and families should not be asked to make a decision regarding CPR. Specific discussions about CPR are recommended before documenting “no CPR” orders in the following circumstances: when the illness trajectory is uncertain (ie, CPR may not be clinically futile, for example a patient at an earlier stage of their illness or if a potentially reversible complication of treatment occurs); in response to a patient or caregiver request or question about CPR; and when the patient has made it clear that he or she wishes to be informed of all decisions made about their medical care. There are other circumstances where the responsible clinician may decide that it is not appropriate to have a specific discussion about CPR with a dying patient or the family, before documenting a “no CPR’ order in the medical record, including: the patient is aware that he or she is dying and has already expressed a wish for care that is aimed at comfort rather than prolonging life; the patient prefers not to discuss end-of-life care and requests that the doctor or caregiver make any decisions relating to his or her health care; and the patient is clearly in the terminal phase of a progressive life-limiting illness and the doctor thinks that the harm of the discussion may outweigh the benefits.154,155 However, not discussing “no CPR” orders with patients or caregivers in this latter circumstance may be open to contest and requires very careful consideration. Specific recommendations about whether to discuss CPR before documenting “no CPR” orders in such circumstances are beyond the scope of these guidelines. Health care professionals should refer to relevant professional and institutional codes of ethics and policies, and to relevant judgments and statutory law, for advice on this matter. Box 12 gives recommendations for communication about CPR should the clinician decide that such a discussion is appropriate. If discussing CPR, it is important to check that patients are aware of the poor success rate of CPR in patients with their condition. When patients and families are made aware of the facts, they are less likely to request CPR.156 When it is judged inappropriate to discuss “no CPR” orders with a particular patient or the family, the reason it has not been specifically discussed should be documented in the patient’s medical records.153 Discussing the process of death and dying (Box 13)Once the patient is approaching the terminal phase of the illness, or earlier depending on the patient’s or caregiver’s information need, it is important to explore specific issues related to the process of death and dying, as many patients and caregivers hold misconceptions about what is likely to happen, and may hold unnecessary fears.1,8 Some studies show that patients and caregivers may have differing information needs as the patient’s illness progresses.8,25,53 Caregivers may prefer more detailed information about the dying process, potential complications and immediate post-death arrangements than patients.8,25,53 Difficult scenarios such as requests by family members to withhold information, family conflicts and unrealistic requests by patients (Box 14, Box 15 and Box 16)The information preferences and autonomy of the patient are paramount, yet it is vital to include family members in discussions surrounding the transition from curative to palliative care.163 The difficulty of negotiating the concerns of family members while also respecting the patient’s wellbeing and autonomy adds complexity to the task of discussing prognosis and end-of-life issues in a palliative care setting. There is also the potential complicating factor of requests by family members (often a culturally related issue, as discussed above) to withhold information from the patient. Various approaches have been reported in studies of mainly health care professionals’ views and in the empirical literature regarding these issues. No studies have been conducted to evaluate benefits of one approach over another. As for all issues, it is important to make repeated efforts to help family members understand the patient’s condition.145 These guidelines present various ways of addressing these issues based on research, expert opinion and other guidelines. A combination of approaches, or different approaches depending on the circumstances, may be appropriate. It is important to address conflict rather than avoid it, so that patients and families have the opportunity to share in decision making and be satisfied with care. As for all sections in these guidelines, the use of empathy is important in helping patients and family members feel respected and understood. Research shows that patients who feel understood and listened to are more prepared to accept their doctor’s recommendation.164 In the context of palliative care, denial may be defined as “an unconscious mechanism aimed at negating a disease-oriented threat to the integrity of personhood and daily life”.165 It may involve avoidance of reality. The use of denial by patients is not always counterproductive to their wellbeing. It can reduce psychological distress and help them absorb the consequences of life-threatening information in a manageable and self-determined timeframe.165 It is not problematic if it does not affect the patient’s ability and desire to seek and accept help.165 However, patients or family members may request medically futile treatments because of refusal to accept the diagnosis or prognosis of a life-limiting illness. Such treatments may have side effects that interfere with quality of life and the completion of unfinished business when time is limited. In this case, denial is a problem that the health care professional should address. Patient requests for medically futile treatments may represent denial or a lack of prognostic understanding. It is important to determine the reason for the request before giving new information. Role of self-careAt the end of the discussion, it is important to reflect on how the discussion went and how it could be improved next time, as well as recognising the emotional impact of the discussion on oneself and the need for self-care. Discussing prognosis and end-of-life issues in patients with advanced life-limiting illnesses is not easy. Eliciting patients’ and caregivers’ emotional concerns and responding empathically involves giving of oneself emotionally, and can take its toll. Not only do health care professionals have to deal with the patient’s emotions and concerns, but potentially their own feelings of failure, helplessness and frustration arising from advancing illness, which may be compounded by stresses in their private lives.166,167 If health care professionals are to be encouraged to discuss prognosis and end-of-life issues with people who have advanced life-limiting illnesses, it is important to acknowledge the need for support and self-care of the health care professionals. Such support includes debriefing with colleagues, encouraging the development of strong collaborative team relationships, and providing communication skills training.74 1 Timing of discussion Recommendation Evidence level All patients with advanced progressive life-limiting illnesses should be given the opportunity to discuss prognosis (including life expectancy, how the illness may progress, future symptoms and effect on function) and end-of-life issues. Do not assume that the patient does not want to discuss the topic simply because he or she does not raise the issue, or because of cultural background. Give the patient the option not to discuss it or defer the discussion to a later time. DS15 Consider raising/introducing the topic in the following circumstances: With all patients and their caregivers once it is clear that the patient has a life-limiting advanced progressive illness; or if the doctor would not be surprised if the patient died within 6–12 months DS25,26 When there is a change in condition, or a perception (by patients, caregivers or clinical staff) of change DS27-29 When a treatment decision needs to be made DS27 If there are requests or expectations that are inconsistent with clinical judgement DS15,27,29 If disease-specific treatment is not working or there are complications from this treatment that limit its effectiveness DS27 At the time of referring the patient to specialist palliative care services. DS27 2 Preparation for the discussion Recommendation Evidence level Ensure facts about the patient’s clinical circumstances are correct. Before seeing the patient, read the clinical records and/or speak with relevant health care professionals to determine the patient’s extent of disease and relevant comorbidities, and gain up-to-date knowledge about the patient’s underlying illness and appropriate treatment options. DS17,28,33-35 Find out what the patient has been told by other health care professionals in order to provide consistent information (where appropriate). For example, speak with the referring specialist or general practitioner, have a case conference if required. RGP Mentally prepare. DS15 Allow yourself time to confer with a colleague if the ensuing discussion is troubling you. RGP 3 Physical and social setting Recommendation Useful phrases (where applicable) Evidence level If possible, ensure privacy, quiet (limit interruptions from pagers or telephones), and timing convenient for patient and health care professional. DS2,37 Ask the patient if he or she would like any family members or caregivers to be present during the discussion, especially if planned (eg, follow-up appointment after test results). “Some people like to bring someone who is close to them to the appointment.” “Is there anyone else you would like to be here with you while we talk?” “If there are things that you might prefer to discuss with me alone I’d be happy to organise that.” DS15,25,33,34 If possible, ensure the health care professional leading the discussion is senior enough to be able to answer the patient’s and caregiver’s questions appropriately (ie, not the most junior person on the team). If a junior health care professional is required to do this task (ie, in an emergency clinical situation), it will be important to tell the patient or family what senior staff have been involved in discussions to date and when they will be available. Build trust and respect by using an empathic, patient-centred style (Box 4). DS1,25,35,37-40 RGP EO41 Check that the patient is comfortable with additional health care professionals being present for the discussion if it is feasible and important for provision of ongoing care (eg, nurse, registrar). If planning a discussion: “Are you comfortable having another member of my team present when we discuss your results?” DS31,37 Ensure enough time is allocated to answer questions or repeat information not understood. If time is not available, allocate a date in the near future, and set limits at the beginning of the consultation. “I would be very happy to discuss . . . with you. We won’t have enough time today to address that properly. Is it all right if I come back [state when]?” DS2,25,42 RGP Optimise any communication aids as required (eg, use of interpreters or hearing aids where applicable) and ensure the patient is mentally capable of taking part in the discussion (eg, not confused). RGP 4 How to discuss prognosis and end-of-life issues Recommendation Useful phrases (where applicable) Evidence level Use good generic communications skills and establish rapport with the patient and family. Make eye contact (if culturally appropriate), sit close to the patient, use appropriate body language, allow silence and time for the patient to express feelings. DS2,8,39,47 Engage in active listening (eg, attend to the patient fully, reflect what you think he or she has said). “If I’ve heard you right, you seem to be saying . . .” DS1,2,39 Show interest in the patient as an individual and as a whole person, as well as the family. DS15,31,39,48 Show compassion and use a warm, caring, respectful and empathic manner. “This has been a tough time for you and your family, and you have faced the challenges of this illness with great courage.” DS25,49 Be willing to initiate and engage in conversations about what may happen in the future and dying. Ensure the patient and caregiver are aware that they can openly discuss these topics with you or someone else in the health care team if they wish. Broach the topic in a culturally appropriate and sensitive manner. Always give the patient and caregiver the option not to discuss these topics or to defer the discussion to another time. If the patient does not currently wish to discuss these topics, raise them again when the person’s condition or situation changes (Box 1). “Do you have any questions or other concerns?” “Some people are worried about things that may or may not happen in the future. It can help to talk about this.” “I am very happy to talk to you about any concerns or questions you have about this now or later. Is there anything you would like to ask me today about this?“ “Often people with conditions like yours have got a lot of questions that are sometimes scary, or sometimes they’re not certain if they want to know the answer. Often the thing they fear or believe is worse than how it really is. So if there’s anything you want to know, feel free to ask me and I’ll answer as best as I can.” DS1,2,28 Before giving new information, use open directive questions to clarify the patient’s or caregiver’s level of understanding of the illness. “What is your understanding of your health situation and what is likely to happen?” “Do you have thoughts about where things are going with your illness?” DS15,25,35,45 Consider asking the patient and caregiver what they have been told by other health care professionals and what information they have obtained from other sources (eg, Internet). “Can you summarise to me what the doctors have explained to you about your illness? Do you think, or did they mention, the illness may affect your health in the future?” RGP If the discussion is prompted by a patient or caregiver question, consider: Clarifying what they are asking and what motivated the question Asking them what they think is the answer first. “I am very happy to answer that, but do you mind telling me what made you ask that question?” “What are you expecting to happen?”50 DS15 Elicit and clarify the patient’s concerns, expectations and fears about the future, relevant to issues being discussed. “What worries you most about . . . [eg, what may happen]?” “What frightens you about all of this?” “What do you hope for the future?” “What is your biggest concern at the moment?” DS8,15 Clarify what the patient wants to know and the level of detail preferred before giving new information. “How much would you like to know?” “Some people like to know everything that is going on with them and what may happen in the future, others prefer not to know too many details. What do you prefer?” “I am happy to give you as much information as I can based on what you want to know.” “What types of information would you like?”51 DS15,25,35 Clarify the caregiver’s information needs (provided the patient gives consent to discuss the illness with the caregiver), as they may differ from the patient’s needs. To patient: “It is also important for [name of caregiver] to have the opportunity to find out the things [he/she] needs to know to be able to take care of you. Are you happy for me to speak with [him/her] about your medical condition?” “Is it OK with you if I tell your [relative/caregiver] what I’ve discussed with you?” “Often [daughters/sons] like to ask detailed questions. Is it okay if I answer your [son’s/daughter’s] questions? Is there anything I should not discuss?” To caregiver: “How do you think [patient] is going?” “What concerns do you have at the moment?” “What do you understand is likely to happen to [name of patient]?” “What information will best help you to cope with your caregiving role?” DS25,52,53 Be aware of cultural differences in information preferences and attitudes to discussing prognosis and dying. Clarify with the patient and family their cultural background or norms. “Can you please help me to understand what I need to know about your beliefs and practices to take the best care of you?”54 “Is there someone else you would like me to involve or speak to?” DS53,55,56 Do not make assumptions about information needs based on the individual’s cultural background or demographic information, but clarify with the individual and family. DS53,57 Regardless of the content of the prognostic or end-of-life discussion, explain the uncertainty and unreliability of prognostic predictions. “Every person is different. I can only tell you what usually happens to people in your situation, not exactly what will happen to you.” “I know that often people expect doctors to know what is going to happen, but in truth we can often only take educated guesses and can often be quite wrong about what the future holds, and especially how long it is. What we can be sure about is . . . and what we don’t know for sure is . . .” DS25 Consider acknowledging the difficulty in living with this uncertainty. “A lot of people find it hard not knowing what will happen next or when. Is this something you find difficult?” EO58 Tailor the information given according to the patient’s or caregiver’s level of understanding, concerns and information needs. DS15 The discussion may involve correcting misunderstandings regarding information obtained from other sources (eg, media or Internet). RGP Give information in small chunks, at the person’s pace. Check that the patient or caregiver has fully understood what has just been said. “I want to talk about three things today: the test results; what this will mean for you; and the treatment that is possible. And you might have some things to discuss too. Now, the test results . . . Do you have any questions so far?” DS17,25,39 RGP Use appropriate language: use everyday terms, straightforward and clear language, and unambiguous words; avoid euphemisms or jargon that could easily confuse, overwhelm and mask the true meaning of the message. Use the words “death” and “dying” where appropriate. “Doctors sometimes forget and use words that may not be understood. Please stop me if I am doing this.” DS2,25,28,42,59 Provide honest and realistic information in a straightforward manner. DS2,25,31,42,60-63 Avoid being blunt or giving more detailed information than desired by patients or caregivers. DS62,64 Recognise the impact of the information on the patient (and caregiver) and communicate with empathy and understanding. DS2,25,62,63 Do not make promises that cannot be delivered or that are inconsistent with clinical evidence. DS27,35,62 Try to foster openness and consistency of information given to the patient and the family regarding discussions of prognosis and end-of-life issues. DS49,53,65 To explore and address differing information needs, consider having joint as well as separate discussions with caregivers when appropriate (if the patient has given consent to discuss his or her illness). DS25,53 Explore the patient’s or caregiver’s emotional reaction to the information given and the meaning of the information (prognosis) to the person and respond empathically; elicit the patient’s concerns. “It sounds like this information is different from what you expected, and I think it would be upsetting for anyone.”58 “How are you feeling about what we have discussed?” If visibly upset: “I can see that this is really upsetting for you.” DS31,39,47,66 When spiritual or existential issues are raised, validate the importance of such topics and encourage the patient to continue to explore the issues with you, or refer where appropriate. “These are important issues. Would you like to speak to a member of the hospital support staff such as a pastoral caregiver?” “. . . is clearly really important to you. Would it be [useful/helpful] to explore these issues further? Who might be the right person you can do this with?” “Would you like to talk to someone about spiritual matters?” “What are the things in life that give you strength and sustain you?” “Are your beliefs being challenged by your current experiences?” DS8 Check the patient’s and caregiver’s understanding of what has been discussed and whether they have received the level and type of information they want or need. “Have I given you the information you need [at this point/so far]?” “To make sure we are on the same wavelength, I want to check your understanding of what we have discussed.” “Is there anything I’ve said that you’d like me to go over?” “We’ve spoken about an awful lot just now. It might be useful to summarise what we’ve said . . . Is there anything from that that you don’t understand or want me to go over again?” “Do you feel you’ve understood everything that you’ve been told? Is there anything you would like me to go over again? After all, some of this is pretty technical.” DS28,31,49,67 Encourage the patient or caregiver to ask questions and revisit the topic in the future when they want further information. “Is there anything else you would like to discuss?” “Is there anything from our previous discussions that you would like to revisit?” “Don’t hesitate to ask me again about any of the issues we have discussed today.” “What thoughts or questions are on your mind right now?” DS31,39,49 At the end of the discussion: Consider summarising the discussion Record in the medical record what was discussed and/or write to or speak with other key health care professionals involved in the patient’s care about the discussion (including the general practitioner) Collaborate within the multidisciplinary team to ensure consistency of information (eg, unit meetings, case review). “So, we’ve talked about . . . at length and also talked quickly about . . . Is that your recollection as well?” CG51 DS68,69 DS28,70 5 General strategies to facilitate hope and coping during prognostic and end-of-life discussions Recommendation Useful phrases (where applicable) Evidence level Reassure the patient or caregiver that you (or a support system, service or team) will be there for them throughout the illness trajectory. If this is not possible, it is critical that alternative arrangements are spelt out and are reliable. “Our team [or whoever applicable] will do our best to support you throughout this illness.” “I [or our team or whoever applicable] will do whatever [I/we] can to assist you in whatever lies ahead for you.” “You will not be abandoned.” If the patient is no longer able to come for outpatient follow-up: “I will be available to discuss your care with your [GP/community nurse/palliative care team] even if you are not able to come and see me in the clinic.” DS25,40,62 Emphasise what can be done (particularly when disease-specific treatments are no longer working). “We’ve been talking about some treatments that are really not going to be effective now and that we don’t recommend you use. But there are a lot of other things we can still do to help and support you and make sure you are as comfortable as possible.”41 “Although this type of chemotherapy has not been useful, there are other treatments we can use to make you more comfortable.” “The aim of treatment is changing more towards maximising your function and comfort.” “I cannot give you any specific treatment to make this illness go away, but there is a lot we can offer to help you cope with it.” DS31,62 Reassure the patient or caregiver that many treatments are available for controlling pain and other symptoms, where applicable. Some symptoms may be difficult to control, and therefore it is also important not to make unrealistic promises (such as to make the person free of pain at all times). “We have a lot of ways to relieve [pain/nausea/dyspnoea] and other symptoms.” “We will do everything we can to ensure you are as comfortable as possible.” “We cannot promise that you will have no pain. However, we can control almost all of the pain almost all of the time.” DS31,61,62 Emphasise the available support, such as the palliative care team (or whatever other services are available in the local area). DS8 Where appropriate, explore and discuss realistic goals and expectations: facilitate realistic goals and reframe the patient’s and family’s expectations. “What are your most important [hopes/expectations] about the future?” “As you think about the future and that you may not have a very long time to live, what is most important to you? Are there any aspects of your life that you want to attend to?”51 “Have you any unfinished business?” “What are the things you most want to invest your time and energy in?” “What are the things you want to do in the time you have?” “Is there any particular event that you are looking forward to?” DS62 Identify areas where control can be fostered [eg, advance care planning, enduring power of attorney (Box 11), tidying up unfinished business, arranging to see people to complete conversations]. RGP Where appropriate, discuss ways of coping on a day-to-day basis (eg, taking one day at a time, using strategies that allow an ongoing relationship with the family, such as writing letters or recording thoughts, focusing on important relationships). It is important to respect and be sensitive to the patient’s ways of coping (eg, denial can be a useful coping mechanism). “Some of my patients tell me it helps to try to take one day at a time, and live for the moment as much as possible.” “You will have good days and bad days.” “Many people find that it helps them to cope by trying to maintain some [sense of normality/normal life] or having a routine.” “Be kind to yourself and do the fun things — it doesn’t have to be all about your illness.” DS62 DS96 Recognise the spectrum of hope and that patients may simultaneously hope for cure as well as acknowledge the terminal nature of their illness. “We can prepare for the worst while hoping for the best.” DS62 Respect the patient’s wishes to explore alternative or experimental treatments aimed at controlling the underlying disease (provided adequate information has been provided to enable the patient to make an informed decision: see Box 6 and Box 7 regarding treatment decisions). “I have no problem with you exploring alternative treatments. They are not my area of expertise. However, if the treatments were a magic bullet, we would be aware and we would also use them. I know they are usually expensive.” “Everything has benefits and burdens. What are you hoping this therapy will achieve?” “You must do whatever you feel is important, but remember that none of these things have been proven to work (or we would be using them) and many are very expensive.” DS25 6 Commencing or changing disease-specific treatments Recommendation Useful phrases (where applicable) Evidence level Be clear regarding the goals of treatments (eg, palliative rather than curative) and specifically what outcomes may be improved (eg, relief of symptoms) and how likely this can be achieved. State whether or not survival may be improved by the treatment. Where applicable, explain that shrinking the cancer will not necessarily prolong survival. Be proactive for quality of life and avoid recommending toxic treatments if little likely gain will result. “The aim of this treatment is to help make you feel better. We will monitor the benefits and side effects of the treatment and talk about the options if the treatment is not helping you.” “The aim of this treatment is not to cure, but to control the disease for as long as we can. If we control the cancer, it is likely that we will relieve some of your symptoms and make you feel better, even if we can’t make you live any longer. “There is about an X% chance that this treatment will shrink the tumour. That should make you feel better, but may only extend your life by a few [weeks/months/years].” DS28 RGP Give clear information about the likely side effects, costs and time involved, to enable patients to make informed decisions in the context of their goals. DS8,20,26,53,88,101 Ensure that full supportive care will be provided whether or not any disease-specific treatment is given, and provide reassurance to this effect. “While you receive chemotherapy for your cancer, we will still do everything to support you as a person.” “There are a number of different [people/services] to help you along this cancer journey.” CG102 Encourage patients to share in decision making according to their desired level of involvement. “People vary in how they want to make medical decisions. Some people want to make the decisions themselves, some people want to share decision making with the doctor, and some people want the doctor to [make/give a lot of help in making] the decisions. What do you prefer?”103 “So based on your goal of [eg, wanting to stay at home as much as possible with your family and friends], I propose that we do the following . . . What do you think?”103 “Given the current situation, our options are . . . I’m wondering whether . . . is the most suitable option for you because . . . What are your thoughts?” DS104-106 7 Cessation of disease-specific treatments Recommendation Useful phrases (where applicable) Evidence level Sensitively explain that the disease is no longer responding to the current treatment and that continuing this treatment is likely to cause more harm than benefit. “Your disease is no longer responding to the [eg, chemotherapy] treatment. More of this treatment would cause you more harm than good [or will give you lots of side effects but is unlikely to affect the cancer]. It is likely that you will have a better quality of life without further [type of treatment; eg, chemotherapy].” “I wish that more chemotherapy would help this cancer, but unfortunately at this stage it will only make you sicker. Yet there are many other things we can do to help you deal with your condition.”107 “The aim of treatment is now changing from trying to control the cancer to minimising the symptoms you might get.” “One of the best predictors of how someone will be able to handle chemotherapy, and how well it will work for them, is how fit and ‘up and about’ they are while having it. Now that you are quite weak, it is much more likely that the treatment will make you worse, not better.” CG102 Avoid conveying that nothing more can be done. Emphasise that treatments and support will be provided to help them cope with their illness (see section on facilitating hope). “As you become sicker with this illness, we will continue to be there to provide the best available treatments to help control the symptoms and support both you and your family.” “My aim is to optimise your comfort and ability to function as normally as possible.” “There is nothing more we can do to make this cancer go away but a lot we can do to help you [live/cope] with it.” DS17,108 8 Introducing specialist palliative care services Recommendation Useful phrases (where applicable) Evidence level Consider referral to specialist palliative care services, where available and depending on the patient’s or caregiver’s needs, at any time once the treatment goal changes from curative to palliative (ie, the patient may still be receiving palliative treatments, such as chemotherapy, aimed at controlling the underlying disease). CG110 Refer to the palliative care health care professionals as part of the multidisciplinary team. “I work closely with the palliative care team in looking after patients such as yourself who have advanced cancer [or lung disease, etc, as appropriate to the underlying illness].” EO111 Raise the topic by being honest and open and use the term “palliative care” explicitly. For health care professional referring to palliative care team: “The palliative care team can provide extra support to you and your family and help optimise your comfort and level of function.” “Extra help and support from the palliative care service might be useful now, especially if we are to give you the best and most appropriate care possible.” “The palliative care team can work closely with you and me in optimising your comfort and level of function.” For palliative care health care professional at time of initial consultation: “I work closely with the other doctors and nurses caring for you. The aim of palliative care is to ensure that, at all stages of your illness, you are kept as comfortable as possible, regardless of what is happening to your [cancer, heart, lungs].” DS21 Clarify and correct misconceptions about palliative care services (particularly that it is not solely for people who are dying or associated with imminent death). “What does the term ‘palliative care’ mean to you?” “Many people have either not heard of ‘palliative care’, or associate it with dying in the very near future.” Then respond to the patient’s cues: “It might be useful for you if I explain what palliative care is really all about.” “Have you had any experiences with others receiving palliative care?” CG51 Discuss the role of the palliative care team, emphasising expertise in symptom management as well as the wide range of support services and assistance with quality of life, and support for family, partner, children, etc. “The palliative care team have a lot to offer as support. This includes pain control and the control of other symptoms resulting from the cancer.” “Palliative care includes a whole range of health care professionals who can help support you and your family at this time.” “The palliative care team works closely with me to help you live life to the full.” CG102 Explain that the patient can be linked up with the palliative care team at the same time as receiving treatments directed at the underlying disease (eg, chemotherapy). “[Our team/I] often work very closely and together with the palliative care [team/services] while giving people treatment [x].” CG102 Explain that the patient will still be followed up by the primary health care team (eg, GP, generalist nurse) or the primary specialist (eg, oncologist, respiratory physician), where applicable. Discuss with the patient and caregivers what that means in terms of who they should contact for what kinds of issues or situations. For GP or primary specialist: “I will still be your main doctor, but the palliative care team will be able to provide extra support or advice with the best medicines for your pain.” For palliative care health care professional: “I will work closely with [name of doctor]. Doctor . . . will still be your main doctor, but we will work together to ensure that you are as comfortable as possible.” RGP 9 Discussing life expectancy Recommendation Useful phrases (where applicable) Evidence level Consider asking the patient to talk about how things have been going over the past several weeks or months and what changes they have noticed in their level of function. “Before I answer that question I need your help to understand what changes you have noticed in your body lately. This will give an indication of how things may go. How have your energy levels been going [last week, last month]?” “What could you do a month ago that is difficult now?” “What has been happening to your weight and appetite?” DS42 Consider explaining the factors involved with making survival predictions. “Several things can affect how long a person with your condition may live, for example, how well your type of cancer [or your illness] responds to treatment, what other conditions you have etc.” “Usually we can tell time is getting short when patients are unable to get up from bed and when important organs are not working well. I think this is how things are for you now.” DS42 Avoid being exact with timeframes unless in the final days of life. If giving a timeframe, explain that the lifespan will be limited by the cancer (or other illness), but that it can be very difficult to predict exactly how long a person with the condition may live. “It is very difficult to say how long someone has to live. I can only guess in terms of days, weeks, months or years. In your case, I would ‘guestimate’ . . .” DS17,42 Give a range for timeframes. Emphasise the individual’s unique experience. If a more specific timeframe is requested, offer to give this information as an estimate, but emphasise the unreliability of survival predictions. “Time is now limited. Death can occur at any time, although it may be several days away.” “Many studies have shown that doctors are not very accurate at predicting how long a person with a serious illness like yours may live.” DS17,42 Various approaches may be used to phrase life expectancy, such as days versus weeks versus months, likelihood of being alive for certain events, rough range, probabilistic (eg, 10% and 50% survival). Use an approach with which you are comfortable. If you are comfortable with a variety of approaches, be guided by the patient’s preference; for example, ask the patient whether they would prefer to be given a rough idea (eg, weeks to months) or the chance of living a given length of time (probabilities). “It could be hours to days [or ‘days to weeks’, ‘weeks to months’ or ‘months to years’].” “It might be as short as a few months or as long as several months.”115 “Most people in your situation live a few months, some live longer than that and some live shorter.” “We measure life expectancy in days, weeks, months or years. If we look at you now, it’s not going to be days but more likely to be [months/years].” “One third of people will [do well/still be alive] a year from now, half will live about 6 months. Exactly what will happen for you, I don’t know.” Where probabilistic data are available and the patient requests detailed numerical or statistical information: “Are you the kind of person who likes to know the numbers or are you more interested in the big picture?” “It’s not possible to be certain in an individual case, but based on other people I’ve seen in your situation, if you took a 100 people with your type of cancer and stage of illness, half of them [or 50] would still be alive in . . . weeks time and 10 [or 10%] would still be alive in . . . months time.”116 “The typical person with your type and stage of cancer lives . . . months. This means that half the people live more than . . . months and half the people live less than . . . months.”115 “On average, patients with your type and stage of cancer live . . . months. One quarter of patients will live . . . months or less and one quarter live . . . or more months. While I do not know for sure where you are in this group, the fact that you are feeling so poorly right now and in bed most of the time makes me concerned that you may not live longer than the average . . . months.”117 DS42 EO118 If statistics are provided, explain their limitations (eg, not specific to individual patients). “We can only talk in averages here; some people do a lot better, and some a lot worse.” “Statistics only help us understand the big patterns of illness, not exactly what will happen for an individual with that illness.” DS27 10 Discussing future symptoms and symptom management Recommendation Useful phrases (where applicable) Evidence level Explore fears and misconceptions (eg, being in pain, past experience with the dying). “Is there anything that is worrying you about the future in terms of managing your symptoms?” “People often have worries or concerns about what might happen in the future. I was wondering if you have any playing on your thoughts.” “Have you been with anyone else [going through the same thing/dying]? How was it for them? Is there anything about what happened to them that worries you?” DS1,8 Explain that most commonly the person’s condition will gradually deteriorate over time, but that there may also be sudden events that no one can predict (eg, pneumonia or some other intercurrent problem). “About three out of four people with cancer will deteriorate gradually in the months before they die, so we can tell it will happen soon, but in the other one out of four people things can change very quickly (eg, heart attack, serious infection) and they may die almost unexpectedly.” DS42 Describe the likely systemic symptoms as the patient’s disease progresses (eg, fatigue, general weakness). Explain that energy levels are likely to fluctuate (eg, may have good days and bad days), but that overall there is likely to be a gradual deterioration over time. “What usually happens is that you will get more and more tired and have to spend more and more time in bed.” DS8 Discuss the implications for the patient’s level of function. “With time, you are likely to have less energy to do things and need more time resting. Therefore, it is important to do the things that you need or want to do now while you are still well enough. If things go well for you — well, you can just do them again.” DS8 Reassure patients that pain can be controlled in most people. If relevant, reassure that dyspnoea may be alleviated. However, be careful not to promise that dyspnoea will be controlled at all times as it is a difficult symptom to completely contain. “We are pretty good at treating pain nowadays.” “We can get on top of pain in most cases.” “You do not need to [fear/worry] that you will suffer pain.” “Shortness of breath may become more of a problem, but we have ways of controlling this.” DS8,25,49,61 RGP Consider whether it is appropriate to discuss potentially problematic symptoms, particularly with caregivers looking after someone at home (eg, seizures and suffocation, or bleeding, depending on the patient’s illness), and what to do should these occur. The health care professional should weigh up the benefits versus the harm of such information. Reassure patients and caregivers that these symptoms are uncommon (depending on the patient’s clinical circumstances), and have plans in place should these events occur. These issues may be better covered in detail closer to the time they may actually occur. DS8,20,53,88,101 11 Advance care planning Recommendation Useful phrases (where applicable) Evidence level Describe simply and clearly what advance care planning is. Give a rationale for why having these conversations can be helpful for families and the health care team. Explain the mechanisms available for advance care planning within the patient’s state or jurisdiction. “Have you thought about the type of medical care you would like to have if you ever became too sick to speak for yourself? That is the purpose of advance care planning, to ensure that you are cared for the way you would want to be, even when communication may be impossible.”120 “Do you know who would make decisions about your medical treatment if you were unable to make them for yourself? Is this the right person?” “Have you spoken to the person who will make decisions for you? Would you like to include them in these discussions, so they know what is happening and what might happen in future?” “Some people have thought about what they want and document their wishes in what is called an advance care directive. Do you have an advance care directive? Would you like to complete one? I could get you some more information if you like, or refer you to someone who could explore this further with you.” “It’s often easier to talk through tough decisions when there isn’t a crisis.”121 “Have you talked to anyone about your wishes, if you become too unwell to make decisions for yourself, about potentially life-prolonging treatment? Have you talked to your family or general medical practitioner about what you want?” CG45,120,122 DS121 Involve the potential proxy decisionmaker in the discussions and planning so that he or she understands the patient’s wishes. “Sometimes people with your type of illness lose the ability to make decisions [or communicate their wishes] as the illness progresses. Who would make decisions for you if you were unable to do this for yourself?” If the person can identify a substitute decisionmaker: “Would you like to talk this through with them?” “Would you like me to assist you with this?” DS123 Develop an understanding of the patient’s values and help him or her to work out goals and priorities related to his or her remaining life and treatment of the illness, and document the patient’s preferences. Consider using clinical scenarios to structure the discussion. Document specific details such as timing or circumstances in which to cease blood tests, antibiotics, deactivation of implantable defibrillators, no attempt at cardiopulmonary resuscitation. Consider making reference to one of four potential levels of care,124 depending on the patient’s condition at the time: Comfort care only Limited care (includes comfort care): use of antibiotics and intravenous medications where appropriate, but no surgery or other more invasive measures Surgical care: surgery and palliative chemotherapy where appropriate, but no ventilation or resuscitation except during and after surgery Intensive care: includes all possible treatments, including invasive measures, to maintain life (it may not be appropriate to offer this level of care for this patient population). “Each person has personal goals and values that influence their decision when discussing advance care planning. I would like to find out your goals regarding your health and your health care and the things you most value in life. For some people, the goal may be to prolong life; for others, relief of suffering, optimising quality of life; and for others, a comfortable and peaceful death. I suggest we go through examples of possible situations that may arise to help you decide your goals of care.” DS125 CG120,122 EO122-124,126 Emphasise that advance care planning is an ongoing process that will need to be reviewed and updated periodically, as the patient’s wishes may change over time, particularly with major health changes. “These are discussions we may need to revisit if there are changes in the course of your illness.” CG120,122,127 Ensure that other health care professionals who are involved with the patient’s care are aware of the patient’s wishes. If an advance directive is completed, make sure its existence is known by all treating health care professionals and it is available when the patient’s place of care is being changed (eg, from home or nursing home to hospital, during ambulance transfers). CG128 12 “No CPR” orders Recommendation Useful phrases (where applicable) Evidence level “No CPR” orders should not be discussed in isolation, but rather in the context of a general discussion about prognosis, the patient’s values and expectations, and the goals of care. CG120 Check the patient’s or caregiver’s understanding of cardiopulmonary resuscitation (CPR). “Are you familiar with CPR?” “What is your understanding of CPR?” “Do you know what CPR means?” CG128 Give a simple explanation of CPR, making it clear that it was designed for previously well people with acute cardiopulmonary events. It is not necessary to give a detailed description of CPR unless the patient or caregiver requests clarification. “Cardiopulmonary resuscitation or CPR is given when a person’s heart stops beating or breathing stops. It is used to keep people alive temporarily until they can receive emergency treatment in hospital or until an ambulance arrives.” If more detail required: “The chest is pumped and air is blown into the lungs to try to get the person’s heart and breathing started again. In a hospital setting (or if an ambulance is called), it will also involve needles in a vein, tubes down the throat and potentially an electric shock to the chest.” RGP Explain that when a person has a cardiac or respiratory arrest in an acute care facility or during ambulance transfers (eg, between care settings), it is standard procedure for CPR to be attempted unless it is documented otherwise (ie, “no CPR” order is in place). “If an ambulance is called, the ambulance officers cannot diagnose; their primary role is to keep someone alive long enough to get to an emergency department.137 It is standard policy for ambulance officers to start CPR in response to a cardiac arrest unless it is documented otherwise.” CG122,128,138 Avoid describing CPR as “doing everything”, as this can be easily misinterpreted (eg, the implication of not doing CPR is that it means “doing nothing”). “We will continue to do everything that is possible to ensure your comfort.” CG127,128,139 When the clinician judges CPR to have no therapeutic benefit, explain that in your judgement CPR would have no chance of changing the course of their illness. “I think we need to focus on making sure you are as comfortable and as active as possible. There are no invasive measures that are going to change the course of the illness now and we need to focus clearly on your comfort.” “Our aim is to focus on your comfort. No measures are going to change the course of your cancer.” CG128 Consider reinforcing this by explaining that most people think CPR in hospitalised patients is successful. However, the success rate of CPR in previously healthy people is low. The outcome of CPR in people with a serious illness is universally poor. “Given the severity of your illness, CPR has almost no chance of being effective.140 It might also mean that you cannot be with your family when you are close to death. I would recommend that we do not attempt it in your case, but I can reassure you that we will continue all treatments that are potentially effective for your comfort. What do you think about that?” “Allowing death to come naturally and making sure that you are as comfortable and supported as possible is our goal when that time comes. Trying to reverse that process and prolong life with CPR at that time is almost certainly going to fail and we would not recommend we try and do so. Is that in keeping with your thoughts and wishes?” CG45 DS141-143 Where appropriate, explain that the patient’s death is inevitable and that the aim is to ensure that death is as comfortable as possible. “Not giving CPR does not mean that we are giving up on you. On the contrary, we will continue to be extremely active and supportive in our care for you. It simply means that when death does eventually come, our focus will be on keeping you comfortable and supported rather than prolonging the dying period.” DS40,123 If CPR is judged to be clinically futile, do not ask the patient or caregiver “What do you want done?” when the patient dies, as this creates an inappropriate burden of choice when there is no choice to be made. “Allowing death to come unhindered and naturally, and making sure that you are as comfortable and supported as possible is our goal when that time comes. From what we have already spoken about this would seem in keeping with your wishes. Is this so?” EO144 Emphasise active support throughout the dying process and explain that all potentially effective treatments can still be given even if they have a “no CPR” order. “Putting in place a ‘no CPR’ order does not mean that we will abandon doing everything we can for [patient’s] comfort and functioning. While some of the treatments have made small differences, it seems clear at this point that [patient] will probably not recover. Certainly more [chemotherapy/aggressive treatment] can’t make [him/her] better at this point. We need to help [him/her] in ways that we know can make a difference for the better. We need to ensure that [he/she] doesn’t suffer unnecessarily and that [he/she] is allowed to die in peace and comfort. Here’s what I am proposing to do; we’ll watch [him/her] carefully and make sure we do everything necessary to make [him/her] comfortable. When [he/she] dies, we’ll respond with humanity and kindness and not with futile measures involving machines and drugs. How do you feel about this?”145 “CPR would not be helpful. It would not prevent the patient’s death but may prolong their dying and cause more suffering.” CG127 The “no CPR” order should be clearly documented and state whether it has been discussed with the patient and/or their caregiver (and if discussed with caregivers, include their names). Document that the focus should be on providing good palliative care, and specifically that “CPR should not be attempted”. Where a decision has been made not to involve the patient or their surrogate in decisions regarding “no CPR” orders, an explanation should be recorded regarding the rationale for this. “No CPR” orders should include a statement of the patient’s underlying condition or prognosis justifying it, and the involvement of other health care professionals in the decision-making process or discussion where applicable. Check with your hospital or facility policy about any other requirements for documenting “no CPR” orders. CG127 13 Discussing the process of death and dying Recommendation Useful phrases (where applicable) Evidence level Explore fears and dispel myths. “It is very difficult for any of us to contemplate our own death. Are there particular fears or issues concerning you about dying?”157 “People who have an illness such as yours sometimes experience worries or concerns about how they will manage as their disease progresses. Is this something on your mind?” DS1,8 Explore the patient’s preferred place of death or dying. Recognise that the situation may change (eg, person may not wish to die at home, but to be at home as long as possible). “Have you had any thoughts about where you would like to be when you get sicker with this illness — where you would like to be cared for when you die?” “When talking about dying, some people are very clear where they would want this to happen. Some want to die at home, others in a hospice and others in hospital. Do you have any particular wishes?” RGP Consider explaining the likelihood of decreasing consciousness levels as death approaches. Explain that they will gradually become weaker, needing longer rest periods and eventually become less conscious. Promote understanding of the decreased need for fluid and foods, non-essential medications, routine observations, tests and investigations in the final days. Consider reassuring patients and caregivers that dying will neither be inappropriately prolonged nor hastened by any treatments or medications given in the patient’s final days. “In your final days, you may gradually go into a coma, which is like a deep sleep. However, it is not the same as sleep and going to sleep at night won’t make this happen any sooner.” “Often what happens is that people become more and more drowsy, and less and less aware of what is going on around them. As far as we can tell, this is not distressing or frightening at all. If you do become distressed, however, we will do our best to ease this as quickly as possible. We will also be there for your family at this time to help support them if necessary.” “We will not be measuring your blood pressure and pulse on a regular basis any more, but will be concentrating on relieving your symptoms.” “Some of these tablets will not be of any help at this stage and may be difficult to swallow.” “Intravenous fluids are unlikely to alter the course of the disease and at this time they may pool in the lungs and make breathing more difficult.” “We have discontinued most of [his/her] medications as [he/she] can’t take them by mouth anymore and they will not make any difference at this stage. We will continue all the medications that are essential, but give them in a form [he/she] can manage.” DS8 Consider warning families that dying may be a slow process. Regarding an unconscious patient: “It is likely that [patient’s name] will die within the next couple of days. However, sometimes it takes longer, even up to a week or so. So it is important for you to look after yourself at this time, maybe take shifts with other family members. Otherwise you may get completely exhausted if you are unable to leave [his/her] side for that amount of time.” DS8 14 Requests by family members to withhold prognostic or end-of-life information from the patient Recommendation Useful phrases (where applicable) Evidence level Show respect for the family and the fact that they may have different views from your own about truth telling and patient autonomy. DS53 Clarify the reasons why the family wants to withhold information from the patient and explore their concerns with telling the patient. “Why do you not want me to tell?” “What are you afraid I will say?”158 “I understand that you are worried about me talking to [patient’s name] about what is going on at the moment. We certainly wouldn’t want to tell [patient’s name] about the situation either if [he/she] doesn’t want to know. What is it that you think will happen to [patient’s name] if we do have this conversation? What do you think will happen if we don’t tell [patient’s name] about what is happening at the moment?” “What are you frightened may happen?” “Has [patient’s name] specifically asked you to have me withhold information?” EO158 Explain that patients are often aware that they have a terminal prognosis even if it has not been openly acknowledged, and that it can be very frightening and isolating for the patient to not be able to talk about it. “In my experience, people are often more stressed and frightened by the unknown than by the truth told gently.” “Do you think [patient’s name] knows that all is not right at the moment? What must that be like for [patient’s name] to suspect but not know?” “It is likely that [patient’s name] understands completely what is going on. Sometimes it is a huge relief to all concerned if it is brought into the open.” “By not acknowledging what is happening, we are blocking [patient’s name]’s ability to have some really important conversations.” DS53 In a sensitive way, negotiate with the family to explore the patient’s understanding of his or her illness, concerns and fears, desire for information, and wishes to be involved in decisions about his or her medical care (and if he or she does not wish to be involved or informed, who he or she would like to make decisions). Use an official interpreter if one is needed. Consider speaking with the patient both with and without the family present. “I would like to ask [patient’s name] what [he/she] thinks is happening to [him/her]. [He/she] may know more than you realise.” “We could talk to [patient’s name] together and find out what [he/she] thinks is happening and what else [he/she] would like to know.” EO73,158 Explain that you will not give more information than desired by the patient. However, you are ethically obliged to give the patient the opportunity to ask questions about the illness and to respond honestly. “I will always answer truthfully if [he/she] asks a direct question. But I will not force or push any information on [patient’s name] that [he/she] does not want.” DS53 15 Dealing with conflicts (eg, differing family opinions, conflicts between doctor and patient or doctor, patient and caregiver) Recommendation Useful phrases (where applicable) Evidence level Identify and recognise family discord as early as possible and make other members of the health care team aware if it is likely to affect the patient’s care. RGP Offer meetings (on repeated occasions if needed) with the patient and/or key family members or caregivers to explore concerns and to try to increase understanding about the patient’s condition. EO145 Allow the patient and family time to come to terms with the impending death of the patient. CG127 Continually focus on what is known about the patient’s values and preferences. “If [he/she] were able to talk to us, what do you think [he/she] would want us to know?” CG159 Explore and acknowledge the emotional issues and concerns of the patient or caregiver that are not always expressed and that may result in frustrating communication barriers. EO145 If possible, negotiate a family spokesperson, preferably one nominated by the patient if feasible, who can be involved in medical decisions when the patient is too sick to be involved and who can communicate with the rest of the family. DS53 Preferably have someone with you (another health care professional or patient liaison officer) and document all discussions clearly in the notes. RGP Openly negotiate with patients and family members to try to reach a mutually acceptable solution. DS35 Recognise limitations (ie, you are unlikely to resolve longstanding family dysfunction). RGP When these efforts are not successful and the conflict is affecting the patient’s care, consider arranging a second opinion for the family, or a skilled communicator to facilitate a patient care conference, or a patient advocate if there are unresolved issues between health care professionals and the family or patient. EO160 16 Dealing with denial or expectations that are not consistent with clinical evidence (eg, requests for medically futile treatments) Recommendation Useful phrases (where applicable) Evidence level Explore patient understanding. “What is your understanding of what is likely to happen with your illness and future treatment options?” DS15 Use a hypothetical question to explore goals and important things that need to be done while well enough. “While we are hoping that things will go well with treatment . . . or be possible for . . . to occur, if by some chance you didn’t get better, what would be the most important things that you would want or need to do while you are still able to?” “I wish too that this disease would get better. If we cannot make that happen, what other shorter-term things would you like to achieve?” “Have you thought about what might happen if things don’t go as you wish? Sometimes having a plan that prepares you for the worst makes it easier to focus on what you hope for most.”41 “I know you are hoping that the treatment will work well, but I feel it is important to talk about ‘what if’.” DS62 Check for a “window” in which to address the situation realistically (eg, check if there were times when the patient did not feel so optimistic). “I can see that you really want to get better and I would like that too. Are there ever times when you have darker moments and don’t feel that things are going so well? Can you tell me what is on your mind during those times?” EO161 Do not force confrontation about denial, otherwise it may lead to psychological distress, further denial or alienation from the health care professionals. Allow patients to fantasise about unlikely possibilities if they otherwise seem fairly realistic and prepared, especially if it is not blocking them from doing important end-of-life work (administrative, conversations with family). “That would be wonderful if . . . were to occur, wouldn’t it? Are there times when it doesn’t seem so sure? Would you like to talk about that?” EO161 Referral for second opinion may be offered if the patient or caregiver will not accept that the treatment is medically futile. “Sometimes it helps to talk these difficult things through with another experienced doctor. Would you like me or your GP to ask for a second opinion?” DS29,162 These recommendations can also be applied to those in Box 6. Endorsing organisations Australasian Society of HIV Medicine Australian and New Zealand Society of Palliative Medicine Australasian Chapter of Palliative Medicine, Royal Australasian College of Physicians Australian College of Rural and Remote Medicine Australian General Practice Network Australian Society of Geriatric Medicine Cancer Voices Australia Cardiac Society of Australia and New Zealand Clinical Oncological Society of Australia Motor Neurone Disease Association of Australia Palliative Care Australia Palliative Care Nurses Australia Royal Australian College of General Practitioners Royal College of Nursing, Australia Thoracic Society of Australia and New Zealand

Josephine M Clayton · Karen M Hancock · Phyllis N Butow · Martin H N Tattersall · David C Currow

It has long been my practice to write a letter of condolence to the next of kin of any patient of mine who has died. As a thoracic and sleep physician, I share a practice with my wife (a psychiatrist) in rooms attached to a private city hospital. I rarely see patients in their own environment, as most come from outlying suburbs or provincial towns. Nevertheless, I get to know many patients quite well, sometimes over a period of many years. However, unlike my father, who was a solo general practitioner initially in the country and later in Brisbane, I am unfortunate in being cut off from the local community in which patients live. He and my mother, who practised with him as a nurse, knew the patient’s whole family, the parish priest, and the names of their children and dogs, not to mention their full address. They saw three generations pass through their surgery.1 Over the years, I have also noted changes in the doctor–doctor relationship, which often affects our attitudes within the profession, and the fragmentation of services due to specialisation and defensive medical practice. Letters can be dangerous in the hands of lawyers, but surely not the simple letter of condolence. A recent American perspective on doctors’ letters of condolence shows that grieving has changed over the past century in US society, so that such letters from doctors are now infrequent.2 People are expected to “get over it” in a matter of weeks. This is in marked contrast with the custom in my grandparents’ time, when “full mourning” was symbolised by black clothing, followed by a period of “half mourning”, signified by grey. Certain behaviour was proscribed during the mourning period, such as going to parties and balls; any jewellery worn had to be made of jet, with no sparkly diamonds; and so it went on. As a specialist in Australia, there are several reasons why I persist in writing letters of condolence today. The first reason is that it is simply a decent, tangible thing to convey my sympathies in writing to the next of kin and show that the patient was not just a “file” or a Medicare item number. Sometimes it may be possible to explain why the patient died, particularly if relatives are confused or upset about the mode of death, but generally such details are not required. The second reason is for myself as a sort of closure on what may have been a long and pleasant relationship with not only the patient but also the family and friends. I am given the opportunity to express both grief and the positive aspects of this unique doctor–patient relationship. Some may see this as “soppy”, but I believe I have learnt over the years that we neglect our own soul at our peril. The third reason is to convey to my staff my sentiments and to give them, too, some form of closure, as the feelings of staff are often overlooked. They may type, read and send the letter and therefore are an integral part of the process. It also sets a tone for my practice. The helmsman is at the helm leading by example. The fourth reason is that a copy of this final letter is filed in the patient’s record that will go off to the archives for the statutory number of years. This indicates to anyone who recalls the chart that the patient has died. I have seen situations in which a patient’s chart is pulled out of the records and a routine appointment (eg, annual follow-up) made for someone who has long since died. This unwitting contact with relatives may lead to unnecessary distress. I recently did a lengthy medicolegal report about a man who had died of lung cancer. In a mountain of subpoenaed medical notes, including that of his family doctor, I could not find the date or situation of his death, let alone a single letter of condolence. By way of a general example, I recently wrote the following letter to the wife of an elderly ex-serviceman I had had the privilege to treat for many years. He had gone downhill very suddenly. As a former Army medical officer myself, with service in East Timor, I often shared with him reflections about world events.3 Dear [name of wife] I was sorry to hear the bad news this morning that . . . had died from lymphoma. I received the biopsy report yesterday and I was going to telephone you this morning to see how he was going. I always enjoyed seeing him and respected his long military background, which was longer than I have seen in any patient in my career and spanning nearly every conflict we have been involved in, including World War 2. The RSM* is the backbone of the Army. I salute him. I am sure he will be sadly missed by you and your family and I wish to convey my sincere sympathies at his passing. Yours sincerely . . . * RSM = Regimental Sergeant Major. I write this article for all doctors, but most of all for those who are just entering the profession. I commend this practice as we share in this mortal business, as it is also for us “for whom the bell tolls”.

Roger K A Allen MB BS(Hons), FRACP, PhD

Tania Shelby-James,* Amy P Abernethy,† David C Currow‡ * Research Fellow, Southern Adelaide Palliative Services, Repatriation General Hospital, 700 Goodwood Road, Daw Park, SA 5041; † Assistant Professor of Medicine, Duke University Medical Center, Durham, North Carolina, USA; ‡ Professor, Department of Palliative and Supportive Services, Flinders University, Adelaide, SA. tania.shelby-jamesATrgh.sa.gov.au To the Editor: Aoun and Kristjanson’s article highlighted some of the difficulties facing researchers in palliative care1 and questioned the role of randomised controlled trials (RCTs). These difficulties do not exempt palliative care from seeking to improve care through thoughtful research but, rather, highlight areas that need to be specifically designed to cope with these difficulties. In our recently completed large RCT of palliative care in southern Adelaide, for which we recruited 461 patients,2 we were able to overcome many of the obstacles cited by these authors. As they rightly stated, many trials in palliative care are pragmatic. This should not be seen as a bad thing, as pragmatic studies are designed to test clinically relevant interventions3 within diverse populations across different settings and to report on a broad range of health outcomes. Such studies are more in keeping with the realities of palliative care. We would argue that traditional RCTs that examine a specific intervention within a specific patient type are less applicable to a palliative care population. In such a population, unlike many other areas of health, the diagnosis and prognosis do not dictate care needs. Among the methodological issues, recruitment and retention are perhaps the biggest hurdles to be overcome. We found that developing systematic, evidence-based protocols, which were pilot tested before initiating the trial, significantly enhanced recruitment.4 To minimise burden, we ensured that all data collection was kept to a minimum and, where possible, data were recorded by study staff or collected from other sources as part of routine clinical encounters. Sample size calculations need to allow for attrition caused by increasing severity of disease. This will, however, inflate the numbers required for a study. Use of multiple sites for recruitment is a strategy that we have used successfully to reach sample size goals. The article states that “RCTs are seldom acceptable to patients and their families”.1 This has not been our experience. Patients are willing to participate in research and find it a meaningful way to give back to the community.5 The challenge is to ensure that this willingness to participate in research is not exploited by palliative care researchers. The other ethical concern raised by Aoun and Kristjanson is the use of a control arm in which patients “deliberately have support services withheld”. We would agree that, if that were to happen, it would be a serious ethical breach. For RCTs in palliative care, the control arm should consist of the standard care provided — the rationale for doing a trial is that there is equipoise regarding the benefit of the intervention. We feel that RCTs are feasible and appropriate for palliative care research.

Tania Shelby-James · Amy P Abernethy · David C Currow

Jennifer Tieman,* David C Currow† * Project Manager, † Head, Department of Palliative and Supportive Services, Flinders University, c/- Repatriation General Hospital, 700 Goodwood Road, Daw Park, SA 5041. Jennifer. TiemanATflinders.edu.au To the Editor: Aoun and Kristjanson’s viewpoint on palliative care research reminds us of the possible limitations of an evidence schema that is built on efficacy of intervention studies.1 For emerging fields and for care areas that cross disciplines, the possible sources of useful knowledge to guide practice — particularly in advance of the establishment of a significant evidence base — need to be recognised and valued. To further complicate the gathering of evidence for such fields are the difficulties of accessing useful knowledge. Preliminary research on search strategies suggests that even good quality searches may recover fewer than half the articles relevant to palliative care in the general biomedical literature.2 More disturbing is the possibility that much of the research and thought in this field is not published, and therefore cannot be easily and actively searched. In a systematic review of publication rates associated with conference presentation, the usual publication rate was seen to be around 45%.3 A recent investigation into publication rates associated with conference presentation in palliative care in Australia suggests a “conversion” rate of less than 20%.4 Publication represents an important step in the spectrum of knowledge dissemination. Such a low rate of publication of conference abstracts therefore represents a significant loss of information, opinion and evidence for the discipline of palliative care. Evidence issues for complex and emerging areas are complicated not only by the restrictions of an evidence hierarchy that is intervention based, but also by the difficulties in searching and retrieving existing knowledge and evidence in such fields.

Jennifer Tieman · David C Currow