Palliative care: a new dimension in healthcare

Australia leads the rest of the world in developing the relatively new medical discipline of palliative care. Two of the many reasons for this are behind the genesis of this supplement: the mutually supportive relationship among the diverse centres for delivery of palliative care; and the high level of government support for palliative care initiatives over the past two decades. The supplement is jointly sponsored by the Australian Department of Health and Ageing and by Palliative Care Australia, an independent body representing all the states and their numerous palliative care institutions and programs. The supplement seeks to inform the health professions of the status of palliative care in Australia and to stimulate interest in the philosophy of palliative care among healthcare professionals, many of whom may be involved in the care of people dying from advanced disease. Specialised palliative care teams are composed of a range of medical, nursing and allied health staff and volunteers.1 While they are directly responsible for the care of a relatively small number of difficult patients, their principal role, for the majority of patients, is to support and encourage the care provided by primary and specialist healthcare services, to help assess the physical, emotional and spiritual discomforts of people with advanced illness, and to frame comprehensive and practical suggestions for care. A palliative approach can be adopted by every potential carer to help patients, families and carers work with the reality of imminent death and achieve the best outcome for all.2,3 The benefits of palliative care are not limited to the final days and weeks of dying. Palliative care is relevant to managing symptoms in many clinical situations and can contribute to care decisions early in the course of any eventually fatal illness (eg, advanced respiratory, cardiac or neurological conditions; HIV-AIDS2). It can enhance the wellbeing of people in aged-care facilities who, approaching death, risk being inappropriately transferred to an acute-care hospital and dying away from the place they regard as “home”. Palliative care physicians are generalists, comfortable in sharing care responsibility with medical and radiation oncologists, surgeons and other specialists, general practitioners, hospital and community nurses and allied health workers in hospital, home or hospice settings.3 Of particular importance are the interactions with GPs and with staff of aged-care facilities.4 Academic units in palliative care have encouraged both medical Colleges and university medical schools to promote palliative care as a discipline in its own right and have gradually made important contributions to the discipline’s evidence base.5 Specialist palliative care nurses are expert managers, assessing individual, family and home-care needs and taking action to ensure that such needs are met. They support and enthuse their generalist colleagues in positive and practical approaches to care. Some are skilled at defusing family tension or in caring for the desperately ill child or the young family coping with bereavement.6 The quiet confidence emanating from a well trained nursing colleague can sometimes do much to calm seemingly frantic or impossible situations. Allied health workers in palliative care exercise their skills in particular ways. Physiotherapists may give gentle massage; pastoral counsellors help with life review, and psychologists with assuaging anger and denial; social workers establish bereavement care or welfare support for affected family members; while volunteers are a vital pillar of many palliative care programs, reminding us of the importance of human support in dying. The teamwork evident in palliative care management is a model that many other disciplines regard with envy.2 In palliative care, the hierarchies of medicine are diffused; the value to the patient of the careful nurse, the attentive volunteer or the sensitive pastor may well exceed that of a physician’s prescriptions. Team care is comprehensive and continuous, addressing the full range of discomforts and suffering of patients and their families and friends, avoiding the gaps in support that can arise through changing phases of illness or sites of care. Potential barriers between hospital and home care are minimised by comprehensive discharge planning and the willingness of many team members to work wherever care is required and to facilitate home deaths where possible and desired.7 A recently compiled national planning guide for service provision, with suggested standards for the palliative care workforce and facilities,8 exemplifies palliative care’s innovative approach to promoting frugal and effective best practice.8 Palliative care has engaged successfully with complementary therapies, finding value in simple, safe techniques without abandoning a critical stance.9 New uses for old drugs and uncommon uses of drugs used in other fields of medicine can improve comfort for dying patients.10 The delicate and difficult matter of sexuality for old, frail or sick people is faced with a cautious and sensitive openness.11 Openly acknowledging spiritual need in patients may allow family members and also staff to begin to contemplate the awe and mystery of death.12 Palliative care still has a long way to go in areas such as improving services to Indigenous and ethnic communities,13,14 increasing regular contact with aged-care facilities, and accumulating an evidence base for palliative therapies. The contributors to this supplement are all leaders in the field. They invite your interest and encourage you to participate in ensuring that care of Australians with terminal illness is managed with skill, sensitivity and confidence.

Ian Maddocks MD FRACP FAChPM

Bereavement support is an integral part of palliative care. Grieving after loss is a normal process; however, some grief reactions become complicated and may seriously compromise the health of an individual. Routine bereavement care helps identify people at risk of complicated grieving. The burden of grief can last for years, sometimes indefinitely. People caring for the bereaved need to pay special attention to cultural differences, the burden of caring for dying children, and the special support needs of bereaved children and adolescents. Excellent resources to assist in grief management, including the expertise of palliative care teams, are readily available.

Ian Maddocks MD, FRACP, FAChPM

Sexuality is intrinsic to a person’s sense of self and can be an intimate form of communication that helps relieve suffering and lessens the threat to personhood in the face of life-limiting illness. Health professionals struggle to accept that people with life-limiting illness, especially older people, continue to be sexual beings. People facing life-limiting illness may appreciate the opportunity to discuss issues of sexuality and intimacy with a trusted health professional. Practical strategies to assist health professionals to communicate effectively about sexuality and intimacy include creating a conducive atmosphere, initiating the topic, using open-ended questions and a non-judgemental approach, and avoiding medical jargon.

Amanda J Hordern BN, MEd · David C Currow MPH, FRACP

Spiritual care is integral to palliative care, and palliative care experience in offering spiritual care can be a resource for the emerging healthcare interest in spirituality. Spirituality is best understood in terms of the web of relationships that gives coherence to our lives, uniquely identifying each person. In palliative care, responsibility for spiritual care is shared by the whole team, with leadership given by specialist practitioners such as pastoral care workers. The palliative care approach to spiritual care may, however, be transferred to other contexts and to individual practice. Spiritual care encourages and supports people in a quest for meaning and personal autonomy. It is offered, not imposed.

Bruce D Rumbold MSc, MA, PhD

Culture is a system of shared ideas, concepts, rules and meanings that underlies the way we live — and approach death. Cultural diversity refers to more than ethnic diversity: age, gender, sexual preference, capabilities, education, place of residence, and occupation (including the health professions) contribute to diversity of culture. Clinical decision making involves values and ethical principles, which are influenced by culture — not only of the patient but also of the carers and health professionals. Care of patients approaching death involves the whole healthcare system — but may need, from time to time, palliative care specialist input, including specialised cultural competence. Education and training of palliative medicine specialists in Australia needs to include a focus on cultural competence.

J Norelle Lickiss MD, FCHPM(RACP)

All Indigenous communities in Australia have a common heritage of loss. Indigenous death rates are much higher than those for white Australians. Indigenous people use healthcare services reluctantly, and palliative care services rarely. Cultural considerations that need to be respected include Indigenous understandings of disease causation, attributions of blame for sickness, the performance of ceremonies after death and the importance of dying on traditional lands. The involvement of Indigenous health workers in clinical care increases confidence in the healthcare system as a whole.

Ian Maddocks MD, FRACP, FAChPM · Robert G Rayner FRACGP, FAChPM

Of children needing palliative care, less than half have a malignancy. Most families will elect to care for their child at home if this is offered as a realistic option. The often protracted and unpredictable nature of the many illness trajectories encountered in paediatric palliative care requires an approach that integrates palliative care with curative care. Children bring added dimensions to the physical, psychosocial and ethical aspects of palliative care. Health professionals from both paediatric and palliative care sectors have skills and knowledge to bring to palliative care of the child.

Jenny L Hynson MB BS, FRACP · Jonathon Gillis MB BS, FRACP · John J Collins FRACP, FAChPM · Helen Irving MB BS, FRACP · Susan J Trethewie FRACP, FAChPM

Over the past 30 years, palliative care services have developed in an ad-hoc way in Australia and around the world. Community expectations for palliative care have grown in recent years. As palliative care has evolved, the World Health Organization definition of palliative care has changed substantially. The changes challenge those who are involved in planning, funding and provision of services to meet new expectations. Many services have not attracted adequate nursing, medical and allied health resources to provide interdisciplinary palliative care. A national consensus document (“a planning guide”) has been developed in consultation with key stakeholders and organisations. It outlines the minimum needs for service provision, independent of fundholders and models of service delivery.

David C Currow MPH, FRACP · Ellen M Nightingale BN, MSc

The growing demand for palliative care means that health professionals are expected to provide palliative care as a core part of their practice. Training in the practice of palliative care is a recent addition to undergraduate and postgraduate medical and other healthcare curricula, and several initiatives are under way to promote palliative care principles and practice in healthcare training. The challenge that we all face is how to develop these skills in the face of multiple demands on our time. Strategies for improving palliative care education include a national undergraduate curriculum for palliative care, expanded training opportunities for generalist practitioners, and further recognition for the role of practitioners of specialist palliative care and associated curriculum development.

Will Cairns FRACGP, FAChPM · Patsy M Yates PhD, RN

Palliative care teams have made an important contribution to improving the care of patients with incurable illnesses in Australian hospitals over the past 20 years. Collocation of hospital-based palliative medicine specialists with other specialties allows communication and exchange of ideas on issues relevant to the medical care of such patients. Shared management of complex cases maximises comprehension of patient distress and optimises the support provided during hospitalisation. Tensions arising across the interface provide opportunities for both groups to improve the relief of suffering in the acute-care setting. Palliative medicine in the private sector has some advantages, but specialists also face specific challenges, including the cost of certain drugs, access to the multidisciplinary team and reimbursement issues.

Paul A Glare MB BS, FRACP · Katherine J Clark MB BS, FRACP, FAChPM · J Norelle Lickiss MD, MSc, FRACP · Kirsten A Auret MB BS, FRACP · Ghauri Aggarwal FRACP, FAChPM · Sarah E Pickstock MA, MB BS, FRACGP

Teamwork is an integral part of the philosophy of palliative care. Cross-functional, interdisciplinary teams offer benefits to patients, practitioners and specialist areas of care. Leadership of teams can be difficult. With shared responsibilities, more than the sum of the competencies of team members can be offered. In palliative care the final decision-maker is the patient.

Gregory B Crawford MPHC, FRACGP, FAChPM · Sharonne D Price BA, BSocAdmin, GCertHlth

Providing adequate supportive services for the families of palliative care patients is a core principle of palliative care. Caring for a patient with terminal illness at home involves a considerable commitment on the part of family caregivers, and attention must be given to the caregiver’s needs as well as those of the patient. Although a home death may be preferred by patients and promoted by healthcare agencies as a cost-effective option, it may be an ideal that is not often realised. Enhanced supportive care strategies can ameliorate the challenges facing families of palliative care patients cared for at home. All health professionals need to improve the standard of family-centred palliative care, and more evidence-based approaches are required.

Peter Hudson RN, PhD

Home care is the preferred option for most people with a terminal illness. Providing home care relies on good community-based services, and a general practice workforce competent in palliative care practice and willing to accommodate patients’ needs. Structured palliative care training of general practitioners is needed at undergraduate and postgraduate level, with attention to barriers to teamwork and communication. Good palliative care can be delivered to patients at home by GPs (supported by specialist palliative care teams) and community nurses, with access to an inpatient facility when required. To optimise patient care, careful planning and good communication between all members of the healthcare team is crucial.

Kevin J Yuen MB BS, FAChPM · Margaret M Behrndt BSc(Hons), PhD · Christopher Jacklyn FAChPM, FRACGP, DipPallMed · Geoffrey K Mitchell MB BS, FRACGP

A palliative care approach has much to offer people in the advanced stages of neurodegenerative diseases, as well as elderly people dying from diseases other than cancer. Palliative care can be part of the treatment repertoire of any health worker, supported by intermittent consultation or referral to specialist palliative care services (eg, for management of neuropathic pain). A palliative care approach encourages a focus on pain and symptom management, and prompts more open communication about end-of-life issues. This approach recruits as necessary the expertise of specialists and multidisciplinary teams to encourage a flexible, responsive service. Home carers and healthcare providers require education to ensure a palliative approach that meets the physical, psychological, spiritual and social challenges facing patients and their families, and enhances dignity and quality of life.

Linda J Kristjanson PhD · Christine Toye PhD · Sky Dawson MSc

The availability of a variety of opioids, together with the discovery of new uses for old drugs (such as ketamine), assists individualised pain management in palliative care. Experience in palliative care provides reassurance that the effective use of opioids and sedatives does not accelerate the approach of death. In taking patient histories, recognising the spiritual component of life experience enlarges the focus of care. Interdisciplinary care brings many different insights to care situations in a prospective and cooperative way. Models of bereavement care established in palliative care units deserve wider implementation in medicine. An “experiential” model of medical student education encourages a focus on the whole experience of patients and their journey with their carers.

Phillip D Good MB BS, FRACP

Some complementary health modalities have found a well-accepted place in palliative care. The interdisciplinary nature of palliative care underlies the common acceptance of complementary therapies in this field of care. The experience of the interdisciplinary approach in palliative care may presage current changes in attitude towards complementary therapies in other areas of medicine. Growing collegiality and interdisciplinary teamwork in healthcare is encouraging the medical profession to see beyond scientific reservations and view complementary modalities as providing supportive roles.

Allan Kellehear PhD