Palliative care is increasingly mentioned in mainstream and professional media releases and reports, particularly those related to aged care and cancer. But it is often misrepresented or mentioned only in passing, so we need to start at the beginning if we are to understand what it is and why it matters.
Conditions such as advanced cancer, heart, liver, lung or kidney disease, and neurological disorders and dementia are all examples of life-limiting illnesses. The clue is in the wording, the person affected will have a shorter, limited length of life compared to what they might have had without the illness. In this case cure is not on the menu, but, depending on what matters most to that person and their state of health there are many care choices and decisions to make, and priorities to juggle as their health deteriorates. With the added physical, psychosocial and spiritual burdens placed on the person, their carers and family, quality of life and maintaining independence and dignity become major issues. This is where palliative care comes in. So, what is and isn’t palliative care?
Health and care providers, as well as patients, carers, and their families often mistakenly regard palliative care as being limited to terminal care. The care received in the last days and hours of life before death. It isn’t.
A survey of Australians with advanced cancer found that people associate the term palliative care with, diminished care, diminished possibility, and diminished choice. It isn’t or shouldn’t be.
A survey of Australian general practitioners (GPs) found that many narrowly define palliative care as ‘non-curative care and pain and comfort relief’. It is more than this.
But given its association with life-limiting illnesses and the above misconceptions is it any wonder that the words ‘palliative care’ strike many of us with chords of fear, hopelessness and abandonment in equal measure. Reading the menu, many note the omission of cure and skip directly to asking for the bill because they fail to recognise the choices available.
Palliative care is the approach to care taken when cure becomes unlikely, but for many people there is much that can be done to help them live well until they die. The World Health Organization’s definition of palliative care has been widely adopted across the world with some minor modifications, but largely intact:
“Palliative care is an approach that improves the quality of life of patients (adults and children) and their families who are facing problems associated with life-threatening illness. It prevents and relieves suffering through the early identification, correct assessment and treatment of pain and other problems, whether physical, psychosocial or spiritual.”
Recently an updated definition was proposed that is much broader in scope, and while it remains to be seen how this might impact on future definitions it is likely that it will extend rather than limit the currently accepted definition.
Depending on individual needs palliative care can be beneficial across the different stages of a person’s condition with or without active treatment. It is a shift in emphasis to quality of life and support to live the best life possible as a person’s health and capacity diminishes. An emphasis that can also benefit those without illness but approaching their natural end of life.
Australia is one of just 20 countries recognised as having well integrated palliative care services. In those that aren’t, pain was one of the most serious and common symptoms. Addressing other physical, psychosocial or spiritual concerns is also important. To illustrate this and the reason that providing palliative care matters let’s consider the case of dementia. Palliative care is recommended by Dementia Australia for people with advanced dementia. Due to disease progression and severely diminished capacity this is likely to include management of pain, but also dyspnoea (shortness of breath) and delirium, maintaining nutrition and hydration, and attending to personal hygiene and comfort measures including bowel, mouth and spiritual care. DA estimate that approximately 436 thousand Australians currently live with dementia. Without a medical breakthrough it is estimated that this could increase to almost 590 thousand Australians in the next ten years. Based on figures for 2016 approximately 75% (327,000) of these people are likely to receive care within the community setting, and the remainder live in cared accommodation. Of these, approximately 8% of community (or 26 thousand people) and 31% of cared accommodation residents (or 33 thousand people) may have severe dementia based on 2012 estimates. While some active care for other conditions might be received the emphasis for these people is on palliative care to ensure comfort and quality of life until a dignified end. This enormous task is everyone’s responsibility and we haven’t even factored in the thousands of Australians of all ages dealing with other advanced life-limiting conditions.
Palliative care is about supporting people’s independence to participate in life and retain their sense of dignity with a life-limiting illness. Ensuring that they and their carers and family understand that they are dying supports them to prepare for the end and where possible to say and do what is important to them. So, understanding palliative care is about understanding that this encompasses more than the medical needs and that there are choices to be made, that it can be beneficial with life-limiting illness or as the natural end of life is approached, and appreciating that the needs are real and growing.
Dr Katrina Erny-Albrecht, Senior Research Fellow, CareSearch, Flinders University
For further information about palliative care visit the What is Palliative Care section of the CareSearch website.