Palliative care

In recognition of Palliative Care Week (19–25 May), we are reminded that, “Palliative care is everyone’s business”. It is a timely and relevant slogan.

Ian Maddocks · Yvonne Luxford

How can the current health care system accommodate, integrate and implement the strategies required for quality end-of-life care for people on a longer-term trajectory of disease?

Teresa A Burgess GradDipNursing Management, MPHC · Annette J Braunack Mayer BMSc(Hons), PhD · Gregory B Crawford MB BS, MD, FAChPM · Justin J Beilby MB BS, MD, FRACGP

To the Editor: The recent editorial by Kefford1 fails to mention that (i) the 5-year survival for malignant melanoma is excellent at 89% for males and 91% for females; (ii) treatment with the new melanoma drug ipilimumab for the 1279 people who died from melanoma in 2007 would cost the Australian Government $156 million based on the quoted drug cost of $120 000 for a course of four injections; and ...

Graeme W Morgan

To the Editor: Kefford’s contention that making cancer drugs affordable requires coherent policy and cannot be left to market forces1 is correct. Two new drugs, ipilimumab and vemurafenib, are now approved by the United States Food and Drug Administration and the Australian Therapeutic Goods Administration for use in metastatic melanoma. However, their efficacy in a minority of patients is low. The cost of this palliative treatment ...

Sonia Fullerton

In reply: The letters of Morgan and Fullerton correctly emphasise the importance of palliative care in the management of patients with metastatic melanoma. They also draw attention to the immense cost of new drugs for melanoma, and their limited efficacy in life extension — something I also emphasised.1 Much ignored in this debate is the rapid and dramatic improvement in quality of life experienced by ...

Richard F Kefford

To the Editor: Methylnaltrexone is a peripheral opioid antagonist registered for the treatment of opioid-induced constipation (OIC) on the basis of quality Phase III studies.1 Monitoring uptake of a new medication such as methylnaltrexone after it has been listed on the Pharmaceutical Benefits Scheme (PBS) is crucial to understanding how such medications can be best used in routine clinical practice. Compared with the whole population, higher ...

Debra S Rowett · Katherine Clark · Maxine K Robinson · David C Currow

Objectives: To investigate the acceptability and feasibility of using end-of-life (EOL) care pathways in residential aged care facilities (RACFs).Design, setting and participants: Multistage action research approach involving interviews, surveys and prospective audits of deaths and EOL care pathway use among residents and staff of RACFs and associated general practitioners from 14 RACFs in Victoria and South Australia between April 2009 and July 2010.Intervention: ...

Dell E Horey BAppSc, MMedSc(ClinEpi), PhD · Annette F Street BEd(Hons), PhD · Alison F Sands MB BS(Hons), FRACGP

To the Editor: The median age of Australian patients at first diagnosis of cancer is 67.8 years.1 In advanced, incurable cancer, goals of treatment include symptom control for all patients and prolongation of survival by weeks to months in a subgroup. In older people, treatment decisions can be complicated by comorbidities, polypharmacy, frailty and cognitive impairment. Few studies have investigated older patients’ information needs and preferences for involvement in decisions about their care.2,3 We performed an exploratory study to investigate whether the health status of older cancer patients predicted their information needs, decision preferences and their oncologists’ treatment recommendations. Concordance between patients’ stated preferences and the perceptions of their oncologists was also measured. Fifty outpatients with advanced lung (n = 30) or bowel (n = 20) cancer, with a mean age of 66.9 years (range, 51–91 years) participated. Fourteen patients (28%) were older than 70 years and 80% were diagnosed with advanced cancer within the previous 4 months. Patients’ health status was measured using the Vulnerable Elders Survey (VES) 13, a validated questionnaire used to identify older persons at risk of health decline (indicated by scores of ≥ 3).4 Role preferences were elicited using the Control Preferences Scale.5 Thirteen patients (26%) had VES 13 scores of ≥ 3. Of these, five (38%) were over 70 years. Twenty-six of 49 patients (53%) wanted a passive role in decision making, and 29 of 50 patients (58%) wanted prognostic information. Age and VES 13 scores did not predict patients’ role preferences or desire for prognostic information. Oncologists were less likely to recommend chemotherapy for patients over 70 years (25% v 75%, P = 0.04) or for those who had VES 13 scores of 3 or above (20% v 80%, P = 0.02). Concordance between patients’ participation preferences and oncologist perceptions was 54%. Until there is more evidence from larger studies of patient preferences, oncologists should ask patients their preferences about decision making and prognostic information. Patients with advanced cancer, by characteristic and preference Characteristic Prefer non-passive decision control* Prefer prognostic information Total patients (n = 50) 23 29 Age 50–60 years 6 7 Age 61–70 years 11 14 Age 71–80 years 5 5 Age > 80 years 1 3 Male 10 18 Female 13 11 Born in Australia 15 14 Born outside Australia 8 15 Bowel cancer 13 19 Lung cancer 10 10 0 comorbidities† 3 5 1 comorbidity† 3 5 2 comorbidities† 4 7 ≥ 3 comorbidities† 12 12 0 concomitant medications‡ 1 4 1 concomitant medication‡ 2 3 2 concomitant medications‡ 7 5 ≥ 3 concomitant medications‡ 13 15 Lives alone 8 9 Lives with someone 15 20 Lives in aged care facility 0 0 ECOG PS = 0–1 20 24 ECOG PS = 2–3 2 4 Married 9 13 Not married 14 16 Primary education§ 3 5 Secondary education§ 14 14 Tertiary education§ 5 10 VES 13 score = 0–2¶ 17 19 VES 13 score = > 3¶ 6 10 ECOG PS = Eastern Cooperative Oncology Group performance status; higher score = poorer status. VES = Vulnerable Elders Survey. * Total in passive and non-passive categories was 49 (one patient gave no preference). † Missing data for one patient. ‡ Missing data for three patients. § Missing data for two patients. ¶ VES 13 scores range from 0–10; scores > 3 indicate vulnerability to health decline.

Lakshmi P Venkateswaran · Phyllis N Butow · Jesse Jansen · Nicholas R C Wilcken · Mark K Wong · Rina Hui · George Szonyi · Val J Gebski · Vasi Naganathan · Lisa G Horvath · Martin H N Tattersall

To the Editor: The letter by Johnson and Mitchell,1 responding to the two published papers of Rosenwax2 and Lowthian3 and their colleagues, about hospital, ambulance and emergency department use in the last year of life, concluded with the statement: Also essential is an ongoing dialogue with the patient and family to enable a clear understanding of the goals of treatment and to proactively plan for likely adverse events . . . [this] will potentially reduce the use of acute services and encourage the provision of care in more appropriate environments. The most significant factor in facilitating this latter objective is the timely preparation by the patient of the appropriate form of instructions to medical staff and designated family members about end-of-life management. Unfortunately, there is no common, state-recognised instrument for this in Australia. Many people appear to believe that conferring a “power of attorney” on a family member is all that is required, but this is not the case. In most situations, this allows the designated member or members to administer financial and property matters but not to make medical decisions about end-of-life care. The requirements for a valid medical decision-making authority differ from state to state. The instruments are variously known as: “enduring power of attorney” in the Australian Capital Territory; “enduring power of attorney (medical treatment)” in Victoria; “medical power of attorney” in South Australia; “enduring guardianship” in New South Wales and Tasmania; “enduring power of guardianship” in Western Australia; “advance health directive” in Queensland; and “medical enduring power of attorney” in the Northern Territory. It would be a major advance in the rational use of health resources, and towards ensuring compliance with the wishes of people who are terminally ill, while minimising the stress and distress of their family members, if general practitioners were to encourage their chronically and terminally ill patients to complete the appropriate form early in their illness.

John D Paull

It is never too late, or too early, to listen to patients about what they want How people die remains in the memories of those who live on. Cicely Saunders, Pain and impending death1 Isn’t it rather odd that, only a few decades ago, dying was a normal part of life? You would most likely be cared for and die at home, surrounded by family. While all the advances in medicine that treat disease and enable us to live much longer have been welcomed, what has been pushed off the agenda is that the mortality rate for all of us remains at 100%. It is in this context that advance care planning is beginning to be recognised as a pivotal part of end-of-life care. In the 19th century, when little was understood about disease processes and few effective treatments existed, Sir William Osler famously said, “It is much more important to know what sort of a patient has a disease than what sort of a disease a patient has”. As modern medicine evolved, with rapid scientific discoveries and technological advances, the focus shifted profoundly to cure — to defeating disease and saving or prolonging life at all costs. Early in the 21st century, it has become increasingly apparent that one of these costs has often been the quality of the patient’s survival. Modern medicine has started to focus equally on the disease and the patient. There is much wisdom in the code of ethics for Catholic health and aged care services, which clearly states that if a treatment is overly burdensome or the burdens outweigh the benefits, the patient may legitimately forgo the treatment.2 To do everything possible just because it is possible, without regard to the patient’s goals, values and wishes, is ethically unsound and not good medical practice. Yet it is remarkable how often this occurs. How many times have doctors, both senior and junior, said that they were continuing or commencing treatment because the family wanted it, and not because they thought that it was right for the patient and was supported by evidence in the medical literature? Our common law duty of care as doctors is to always act in the patient’s best interests. One of the most practical ways to put this into action is to regularly ask ourselves, “Am I caring for this patient or family the way that I would want myself or my family to be cared for, by taking the time to identify their personal, spiritual or religious views and take these into account when I am making decisions?”. There are three opportunities to check whether the care we are providing is patient-centred. The first is with competent patients, by ensuring that their consent to treatment is fully informed, by understanding their goals and values that are relevant to their current or future treatment, and by identifying their wishes regarding treatment if they become seriously ill and can no longer decide or communicate what they want. This process of enquiry is called advance care planning. It may be as simple as identifying who the patient’s substitute decisionmaker would be and ensuring that this person is someone who has a clear idea about the patient’s goals, values and wishes. It may also include assisting patients to put their future wishes in writing. It is crucial to enquire what the patient would regard as an acceptable outcome, rather than make a shopping list of acceptable versus unacceptable treatments. Where is the patient’s line in the sand — his or her acceptable level of ability to communicate or of cognitive or physical function? The second opportunity is when caring for a patient who is no longer competent. At this time, we need to look for any documents, such as an advance care plan, that record the patient’s wishes, and speak to the family and the substitute decisionmaker, if appointed. We should ask them what the patient would want rather than what they want, with the focus on what the patient would regard as an acceptable outcome,3 through questions such as, “If your father could sit with us here, right now, what would he tell us to do?”. The third opportunity is when caring for a patient approaching the end of life. A study in which patients were interviewed identified five factors that patients regard as important to having a “good death”: avoiding suffering, avoiding the prolongation of dying, achieving a sense of control, relieving burdens placed on the family, and strengthening relationships with loved ones.4 Apart from providing good palliative care, the most effective way to achieve these goals is to know ahead of time what a person would want. More than half of us are not in a position to express these preferences at the end of life. In a randomised controlled trial published last year, we showed that advance care planning improved end-of-life care for elderly patients admitted to hospital, increased respect for the patients’ wishes at the end of life, improved patient and family satisfaction with regard to hospital care, and reduced the likelihood of anxiety, depression and post-traumatic stress in the surviving relatives of patients who died.5 The skills needed to effectively facilitate advance care planning are learnable. Through the Respecting Patient Choices Program, medical and non-medical health professionals can be trained to discuss these personal, intimate subjects with patients and their families in a sensitive, compassionate way.6 It is never too late, or too early, to listen to patients about what they want. The importance of involving patients in decisions about their care was acknowledged by a maxim in a recent white paper from the Department of Health in the United Kingdom: “no decision about me without me”.7

William Silvester MB BS, FRACP, FCICM · Karen Detering MB BS, FRACP, MHEth

When a patient’s wishes conflict with “best practice” The question of whether a person has the capacity to make decisions for him- or herself is one that has increasing relevance throughout clinical practice. It is especially relevant in palliative medicine, where practitioners often pride themselves on offering patient choice, particularly when it comes to selecting a venue for receiving care. Patients seen by palliative care services frequently have impaired cognition, often due to delirium.1 Such cognitive impairment places patients at risk of not understanding the ramifications of the decisions that they make. This is likely to become an increasing problem, as palliative care services care for an ageing population, with a significant comorbid burden, who are more at risk of diminished capacity due to the prevalence of illnesses such as dementia. The four ethical principles of health care — non-maleficence (doing no harm), beneficence (doing good), respect for autonomy, and justice2 — remain the foundation for ethical clinical practice. However, in the course of our duties, these principles may come into conflict. Deciding to act in the patient’s best interestsAn 85-year-old man with metastatic rectal cancer, who received domiciliary palliative care support following an “unsafe discharge” from an inpatient palliative care unit, was readmitted against his express wishes and subsequently died in hospital. This article explores the resulting sense of unease among the responsible clinicians, arising from our decision to act with beneficence and, arguably, humanity, in overriding a patient’s dying wishes. The patient was diagnosed with a stenosing rectal cancer, with lung and bone metastases, following presentation with advanced cachexia and symptomatic anaemia. The diagnosis came as a shock to the patient, who denied any previous major health issues and had infrequent contact with his family doctor. He had been a lifetime smoker of 60 pack years, and smoking was one of the few passions of his now-isolated existence. The patient was a worldly man, born in Malta, who had travelled extensively in his youth before settling in metropolitan Melbourne and raising a family. Unfortunately, his wife’s death in 1989 heralded a slow withdrawal from his friends and family. By the time of his presentation, he was living a squalid existence and reluctantly came to hospital at the insistence of his adult children. Options for palliative surgery, chemotherapy and radiotherapy were discussed and declined by the patient. A brief period at home resulted in a further presentation with symptomatic anaemia due to ongoing rectal blood loss and faecal incontinence. He was referred and admitted to inpatient hospice care, but again asked to be discharged almost immediately following blood transfusion. His insistence on discharge and refusal to discuss options to improve his physical care and safety at home led his palliative care providers to organise an assessment of his decision-making capacity by a neuropsychologist and consultation liaison psychiatry team. He was found to have decision-making capacity during these assessments, although it was noted that he was an avoidant historian and lacked some insight into the ramifications of his decisions. Plans were made to support the patient at home, as was his wish, with extra community services, community palliative care and family involvement. Unfortunately, the situation unravelled quickly at home. He refused many of the services that had been organised. He was reluctant to let his family help him more and they felt powerless to compel him. The community palliative care team attempted to act as mediator but made little progress. During this time, he became progressively frail until no personal care or safe use of medications was deemed possible. He had a fall at home 6 weeks after discharge, and an ambulance was called when he was found on the floor, unable to rise. Despite his frail condition, he remained both vocally and physically resistant to paramedic attempts to transfer him to hospital, and he finally sent them away. He was also left alone by his family, who felt both unable to provide care for their father at home and powerless to compel him to go to hospital. He remained on the floor for several hours, until urgent re-review by the community palliative care physician. By this time, the sun had set, and his home was shrouded in darkness and cold. He told the physician that he was lying on the floor only because he wished to do so and that he wished to remain where he was, although he was intermittently not orientated to place or person. Under Victorian legislation, he was assessed by the palliative care physician as being incompetent due to delirium3 and was transferred to hospital as an involuntary patient. This required police attendance and the ambulance service to transport him safely. His involuntary status was upheld for a further 48 hours by subsequent independent psychiatric review. No reversible cause of delirium was found on investigation when he was hospitalised, although his cognition did improve. He deteriorated over a course of weeks and died comfortably in hospital without requesting discharge again. Weighing up the ethical issuesThe decision that led to the patient’s removal from his home against his wishes, and his subsequent death in hospital, continues to rest uneasily on the team, given that clinical decisions are usually made not only for the benefit of the patient, but are also informed by respect for patient autonomy, non-maleficence and justice. In this instance, less invasive interventions, including enlisting family support, appointing a guardian, or urgent review by community-based psychiatric services were considered but judged to be inadequate or not possible within the time frame required. Subsequent peer-review discussions raised the probability of similar situations of isolated people living and dying without support in poor conditions. While this is likely true, there is a clear distinction between knowing the detail of a specific unfolding clinical scenario and not intervening, and theoretical events outside our direct knowledge. In the end, the contention returns to the dilemma that this patient had decided not to comply with what we would regard as “a good death”. In doing this, the consequences of his actions were detrimental not only to his comfort and condition but to the physical and psychological wellbeing of his family and carers, who were placed in the unenviable situation of having to provide inadequate care in an inappropriate environment. The clinical decision was made that drastic action was necessary, even to the point of forcing his compliance against his will. At the time of the decision to compel his removal from his home, it became less about his competence to make decisions, and more about our recognition of his humanity. To leave him to die alone, cold and probably in pain, in the midst of one of our well resourced cities, with medical and health care professionals in full awareness of his predicament, without acting, would have been a betrayal of our responsibility as his medical carers. We would have been inappropriately allowing respect for his autonomy to outweigh all other ethical considerations, despite his changed circumstances and limited realistic choice to remain as he was. While this is a pragmatic principlist approach, other ethical theories, such as virtue ethics, accord with our decision, which was guided by compassionate interest in the patient’s wellbeing. Was this an act of excessive medical paternalism, resulting in the denial of a person’s last wish to die at home? Undoubtedly there are those who would argue on both sides. However, even with the passage of time, we remain comforted that, after acknowledging the patient’s autonomy, our intervention was carried out in his best interests.

Brian H Le MPH, FRACP, FAChPM · Michael D Chapman MB BS

To the Editor: The research by Rosenwax and colleagues1 and Lowthian and colleagues2 published in the Journal highlights the need for increased capacity in end-of-life care within primary care to reduce the inappropriate use of acute health care services at the end of life. Providing high-quality care for people diagnosed with advanced chronic conditions is among the most complex challenges for general practitioners.3 GPs and other primary care providers are able to provide appropriate palliative and end-of-life care when they are well supported by relevant specialists.3 For patients to be well cared for in the community, it is also necessary for informal carers to have the strength, the will and the skill to provide such care, as well as timely access to support and medical care. The recent National Health and Hospitals Reform Commission’s report4 and the Australian Government’s National Primary Health Care Strategy5 both recognise the need to build “the capacity and competence of primary health care services”4 to support their dying patients. These documents make recommendations that begin to address the current difficulties of caring for these patients in the community. Of significance are recommendations for increased support for carers; improved shared-care arrangements; and better access to specialist palliative care, support and funding for advance care planning and improved access to primary health care professionals.4 This includes a commitment to address workforce shortages and improving out-of-hours access to medical care.5 Such recommendations are positive and will be helpful when they are fully realised. However, issues within primary care — both at the community and individual general practice levels — also need to be addressed. People for whom a palliative approach is appropriate need to be systematically and proactively identified in a timely way. Needs assessment and care planning should be undertaken to ensure that problems and preferences for care are identified and mechanisms are put in place to support such care. To promote optimal end-of-life care, a coordinated, multidisciplinary approach is as important in the community as it is in the hospital setting. Good communication and collaboration between primary care providers, the patient’s specialists and specialist palliative care providers are imperative. Also essential is an ongoing dialogue with the patient and family to enable a clear understanding of the goals of treatment and to proactively plan for likely adverse events. Routinely planning for likely scenarios will potentially reduce the use of acute services and encourage the provision of care in more appropriate environments.

Claire E Johnson · Geoffrey K Mitchell

CorrectionMean number of days in hospital incorrectly expressed: In “Hospital and emergency department use in the last year of life: a baseline for future modifications to end-of-life care” in the 6 June 2011 issue of the Journal (Med J Aust 2011; 194: 570-573), the mean number of days in hospital was given per hospital admission for decedents with and without cancer. This should have read: “Decedents with cancer had a mean number of hospital admissions of 7.6 (SD, 10.2; median, 5) with the mean number of days in hospital per decedent of 41.3 (SD, 35.2; median, 34). Decedents with non-cancer diagnoses had a mean number of hospital admissions of 8.1 (SD, 23.1; median, 3) with the mean number of days in hospital per decedent of 49.6 (SD, 60.0; median, 30).” The html and pdf versions of this article are corrected

Lorna K Rosenwax · Beverley A McNamara · Kevin Murray · Rebecca J McCabe · Samar M Aoun · David C Currow