Improving end-of-Life care

A growing number of Australians, particularly older people, are being diagnosed with chronic diseases such as Diabetes, Renal Failure, Arthritis, Parkinson's and Multiple Sclerosis. Many of these people suffer from more than one such disease. Teresa Burgess argues that not enough is being done to provide end-of-life care for these patients.

In Australia and overseas considerable effort is being made to implement systematic processes to prevent and manage chronic disease. The major focus is on care planning, health education, chronic disease self- management and regular review.

While treatment for these diseases has improved significantly over the past decade, the fact remains that there is still no cure. We can help these people live longer and have a better quality of life but at some point the disease will progress and care needs will change as they approach the end of their life.

There is no clear transition to end-of-life, but rather a slow period of decline. Most people experience periods where their disease is quite stable, interspersed with serious exacerbations which often require hospitalisation and may lead to death.

Those with advanced chronic disease will experience progressive functional decline, poor quality of life and increasing dependency on both formal and informal caregivers, as well as the health system. At this time, the disease must be managed and supportive care given to effectively control distressing symptoms and emotional, spiritual and psychological support provided for both the patient and their family.

If appropriate end-of-life care is not provided, there are significant and costly implications. These can include:

> unnecessary hospitalisations;
> prolonged intensive interventions in acute care settings;
> people dying in intensive care rather than their preferred place of death;
> poor symptom management;
> little opportunity for patients and their families to discuss issues around death and dying; and
> increased stress on staff not trained in the provision of palliative care.

In Australia, the need for end-of-life care for people with advanced chronic disease has been addressed by recommending referral to a palliative care service or closer links between specialist palliative care services and other services and general practice. This approach assumes that palliative care can provide the most appropriate care for people with a chronic disease.

However, palliative care was originally developed to provide support for people dying with cancer - people who have a relatively predictable deterioration that requires intensive support over a fairly short period of time. A referral to specialist palliative care can mean that patients are not able to continue access to active disease management, as health funding mechanisms may differ.

There are currently few models of care which combine active management of chronic disease and a palliative approach. Because there is no clear transition from living with a chronic disease to entering an end-of-life period, clinicians can be unsure of when to introduce palliative strategies. Indeed there is no agreement on what end of life means - in the UK it is the last 12 months of life while in Australia it is understood to be the last weeks.

There is also little understanding of what a palliative approach means outside specialist palliative care services, with many people believing it is only for the terminal phase of a disease. Another reason that end-of- life care for people with chronic disease has not been a priority is that many health professionals still view death as a 'defeat'.

The focus is more on medical interventions throughout the disease rather than recognising the importance of discussions about treatment options, prognosis and patient preference as the disease progresses. These attitudes may reflect the attitudes of the community more generally where there is a societal taboo about discussing death, dying and bereavement.

General practice has been suggested in Australia as the most appropriate place for the co-ordination of end-of-life care. In the UK, systems such as the Gold Standards Framework allow health professionals to support patients as they approach the end of life. This framework is co-ordinated through primary care, but no infrastructure currently exists in Australia to support such a process.

General practice is funded at a national level, while hospitals and community health services are state funded - and joint funding arrangements can be problematic. While a number of GPs do successfully provide palliative care, they do not receive the appropriate remuneration to meet the key needs of such patients. These include lengthy conversations required for advance care planning, organising and co-ordinating care, organising or providing ongoing psycho-social care and home visiting.

To date, there has been little consideration of how the current health care system can accommodate, integrate and implement the strategies required for quality end-of- life care for people with chronic disease. Palliative care services, in the absence of a clear policy framework and appropriate funding, have been attempting to support people with chronic disease, but they will be unable to continue to do so due to the growing numbers of people requiring care and the differing needs of people with advanced chronic disease.

Care must be patient-centred based on patient needs and symptoms rather than prognosis or age, allowing for a symptom and needs-based approach to be introduced much earlier in these chronic conditions. A priority of government should be to promote discussions on death, dying and bereavement similar to international programs such as Dying Matters in the UK and The Conversation Project in the US.

End-of-life care must become part of routine care in both chronic disease management and end-of-life care services. Specialist palliative care services can play a vital role in ensuring access to best practice end-of-life care for people with advanced chronic disease through ongoing roles in education and consultation, as well as provision of expert care for people with particularly complex conditions. The term end-of-life care rather than palliative care could help change people's attitudes to the skills and training required to meet the needs of people with chronic disease as they approach the end of their life.