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IN Australia, we struggle to align community preferences with actual outcomes when it comes to end-of-life care.
A survey by Palliative Care Australia earlier this year found 74% of Australians who have thought about it would prefer to die at home, but in reality only 16% actually do. Another 10% die in aged care facilities (which we can respect has become home for them); 20% die as inpatients in hospices; and the majority (54%) die in hospital.
So where can we look to explain this disparity between preferences and outcomes? The same survey showed that two-thirds of Australians thought that we don’t talk about death and dying enough in our communities.
The reluctance to have these discussions and to communicate end-of-life care preferences often results in poorer outcomes. This reluctance also extends to the health profession and is, in part, reflected by the fact that we are death denying by our nature — focused, as we are, on treatment and cure at all costs until the very end.
In the multidisciplinary community palliative care service in WA where I work, we know that 60%–70% of people admitted to our service do die at home. Can we claim then that preferences have been turned into reality?
The service is successful because the people admitted are mainly cancer sufferers and the cancer service community and GPs in this jurisdiction have had more than 25 years to develop good referral habits.
Over the years, good palliative care and continuing active treatment have learned to coexist in the management of cancer. This harmonious coexistence provides us with one clue to a possible way forward, which is supported by a recent study where cancer sufferers who had both active treatment and palliative care did better than those who had active treatment alone.
The proposition that we need a less death-denying profession that is willing to combine active and palliative approaches emerges as an attractive one, worthy of consideration. It combines well with the reality that the transition from active to palliative management is rarely a moment in time, but more often something that happens over days, weeks or even months.
Clinicians can prognosticate well in many chronic disease conditions, and addressing this in their own care planning requires recognition, not denial. Clinicians are not so much death denying as reticent to talk about prognosis in clear terms.
Palliative care recognises the opportunity brought by knowledge of prognosis, by understanding the realities of what lies ahead. We see these opportunities expressed in the ability to maximise life and living, in planning to minimise suffering, and in appropriate preparation of family and friends for bereavement.
People who understand that their life has a predictable limit often find a new intensity for life, its relationships and its experience. This is what is denied by the reticence of the modern clinician to carefully talk about what they clearly know.
This is not an easy message and need not be told in a moment. Delivering the message is not an easy skill, as it requires the ability to assess the needs of the individual patient and to pitch the information in the right way for them.
The coexistence of active and palliative approaches provides the right environment for people with a predictable limited prognosis to make the best decisions for themselves. It also provides the clinicians with a broader support base, to make sensitive decision making easier.
Recognising that palliative care is about maximising life in the face of limited prognosis as well as properly managing suffering is important. While early referral to palliative care may be the solution in some cases, the development of good palliative care skills in all clinicians would seem a logical long-term goal.
Palliative care is every clinician’s business.
Dr Scott Blackwell is the president of Palliative Care Australia and a GP practising in WA.
In the MJA this week, advanced care planning and end-of-life care and competency and capacity at the end of life are discussed.
Posted 17 October 2011
Thank you for this eloquent essay. As an acute care clinician with an interest in end-of-life issues, I am frequently surprised at how little attention is paid to the actual process of death in advance planning. If active and lucid like Beryl Shaw, episodic acute care is clearly indicated. On the other hand, when a very old person is fully dependent, bed-bound, severely demented, aspirates food, is doubly incontinent and unable to communicate, we know that death is near. Many families seem to have some vague idea that the loved one will die at some stage, but have never confronted the thought of the actual process. I believe it is all our responsibility to be frank – and even confronting – to families about this, to save the poor old person having to endure a prolonged death, without dignity.
All good points – and the teaching I do with health professionals confirms that most of them haven’t learned the way to respectful conversations with their patients, so it’s a bit late for them to learn that when faced with expected death. They need this learning experience now.
However, don’t we need to look at one patent fact – few of us have the perspective of time to make the choice of where we die. When I hadn’t been diagnosed with cancer until I was actually dying, I was rushed to hospital; thankfully to have my life saved when even the surgeon wasn’t sure I’d make it to the end of the operation.
6 years later when rushed to hospital again I was fortunate that they found my unusual heart problem in time – just. So either time I’d have died in hospital without the time those wonderful palliative care workers have to forward a discussion.
If I die at home it’s most likely to be that an emergency situation arrives suddenly, killing me at home where, living alone, there’s no one else to summon an ambulance.
There are too many indicators not taken into account when we only look at the numbers.
http://www.anotherlife.com.au/health