Meeting end-of-life care needs for people with chronic disease: palliative care is not enough

Considerable efforts have been made, both nationally and internationally, to address the growing “epidemic” of chronic disease. Chronic disease accounts for more than half of all Australian deaths,1 treatment of chronic disease in Australia accounts for almost 70% of total health expenditure2 and hospitalisations associated with chronic disease are a major component of this expenditure (see the Box for a definition of chronic disease as used in the context of this article). Systematic processes to prevent and manage chronic disease have been developed, and all incorporate the concept of a continuum of care from prevention and early intervention, through disease management to the end of life.2 While there is a strong focus on systematic care, health education, chronic disease self-management and regular review, comparatively scant attention is paid to the actual care required as people approach the end of their life.

In Australia, to date, the need for end-of-life care for people with advanced chronic disease has been addressed by recommending referral to a specialist palliative care service or by developing closer links between these services and specific disease services and primary care.5 It is assumed that a referral to palliative care can, and will, provide the most appropriate care for people dying with a chronic disease. However, often this process is poorly handled, and general practitioners and primary care clinicians are left to manage an uncoordinated and challenging situation. Inadequate and inappropriate end-of-life care has significant and costly implications: unnecessary hospitalisations; prolonged intensive interventions in acute care settings; patients dying in intensive care units rather than in their preferred place of death; poor symptom management; little opportunity for patients and their families to discuss issues around death and dying; and increasing stress on staff who are not trained in the provision of palliative care.

Originally, palliative care developed to provide support for people dying with cancer, with a trajectory of relatively predictable deterioration requiring intensive support over a fairly short period of time. Chronic disease tends to follow a much slower and more unpredictable trajectory that includes progressive functional decline, poor quality of life and increasing dependency on both formal and informal caregivers as well as the health system. Many people with chronic disease have multiple comorbidities, so it is vital they have access to active and systematic disease management.3 However, there is a concurrent need for supportive and palliative care to effectively control distressing symptoms and to provide emotional, spiritual and psychological support for the patient and his or her family as the patient’s condition slowly deteriorates.5 Referral to specialist palliative care can mean that patients may not continue to have access to active disease management. A system that not only allows but actively supports the provision of active and palliative care is required.

Disease-focused health professionals and palliative care professionals may sometimes differ in their philosophical understanding of the basis of care provision. Many health professionals still view death as a defeat rather than accepting that death is an inevitable part of living;6 and palliative care may erroneously be seen as relevant only for the last days of life and as being “exclusive of life prolonging treatments”.7 The term “a palliative approach” is increasingly being used to describe care that allows continuation of active interventions while introducing elements of palliative care (Box), but there are few models of care that successfully combine chronic disease management (CDM) and palliative approaches. For CDM and palliative models of care to blend successfully, both need to be expanded to accommodate understandings that recognise their differing perspectives.

The practice of referring patients to palliative care suggests that there is a clear transition from active disease management to an approaching end-of-life period that triggers the referral. However, there is growing evidence that there is no clear transition for patients with chronic disease, but rather, a slow period of decline, where both interventional care and a palliative approach are required.8,9 Indeed, there is currently no common understanding in the Australian context of the term “end of life”. Palliative Care Australia’s definition of end of life (Box) is not specific enough to indicate when a referral should be triggered.3 The End of Life Care Strategy in the United Kingdom defines the end-of-life period as the last 12 months of a person’s life;10 however, this raises the issue of how to prospectively identify the last 12 months for people with advanced chronic disease. The generic “surprise” question (ie, “Would I be surprised if this patient died in the next 6 to 12 months?”) can be useful,9 but it is increasingly being recognised that needs and symptoms should dictate care, rather than prognosis.

It has been suggested that the responsibility for end-of-life care in Australia should lie with general practice;9 however, people with advanced chronic disease who are approaching the end of their lives often receive a complex array of medical services from a range of service providers.8 As people experience exacerbations of disease, care may be centred around acute care hospitals and outpatient departments. These patients may have a private specialist, see their GP regularly or use a combination of health care providers. In these situations, the role of GPs is quite unclear. While a number of GPs have considerable experience in the provision of end-of-life care, current funding mechanisms and practice structures mean that many GPs are unable to allocate the time and resources required. Many people with advanced chronic disease use their GPs for prescriptions and minor care and do not see them as their main health service provider.8 Even if GPs have developed care plans for their patients with chronic and complex diseases, patients may still not see them as their care coordinator.8 In this situation, who makes initial contact with a palliative care service? And how is ongoing patient support coordinated? In the UK, systems such as the Gold Standards Framework (with associated infrastructure) allow health professionals to support patients as they approach the end of life (http://www.goldstandards framework.org.uk). This framework was developed to facilitate the coordination of end-of-life care through primary care, but no infrastructure currently exists in Australia to support a similar process.