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“Daddy used to say that if he get so old so that he couldn’t drink beer and catch catfish then I had to put him in a boat and set him on fire, so that no-one could come and plug him in the wall.” from the movie Beasts of the Southern Wild
I HAVE talked about death with thousands of people over my years in general practice and palliative care.
Not surprisingly, as soon as I mention to anyone that I work in palliative care they start to tell me what they want for the end of their lives. Very few have said they want to be “plugged into a wall” and kept alive when there is little hope they would recover enough to do the things that give their life meaning. Certainly I can’t remember any doctors or nurses who felt that way.
The culturally and biologically based mores that govern our lives evolved over hundreds of thousands and millions of years respectively in circumstances where, much as humans may have wished, there was almost nothing that that could be done to stop sick people from dying. That was the way it was and people had to deal with it.
However, in the past 200 or so years things have changed, at least in the developed parts of the world such as Australia. We now have access to a vast array of technologies that can restore us from illness to a full and meaningful life or, more often, hold illness at bay and delay death.
These successes have encouraged us to develop expectations of health care that belie the reality of death’s inevitability. Sometimes I see people with advanced disease, or their families, who are incredulous that there are no curative treatments and that I am being consulted because the best option is to focus on comfort.
In spite of this phenomenon, I think the attitudes of a growing number of people in the community are far more pragmatic. They have recognised that technology may just delay our dying and dangle us over the edge of the precipice for a very long time before, inevitably, the thread breaks.
Most do not wish to live out a life without what they define as quality, and recognise that there is a time to stop trying to prolong life and stand aside while dying follows its natural course. They believe this applies not only for the elderly but for dying people of any age, even children and premature babies who cannot voice their own opinion.
Strangely, and in spite of this evolution in community attitudes, clinicians and politicians — the people who should lead the discussion — are often absent from public debate about inevitable death and how to deal with it.
While we can engage in theoretical and philosophical discussions about our rights and duties to both live and die, most of the time people make their personal decisions in the context of the realities of their own lives and experiences.
Baby boomers, of which I am one, are facing up to the reality of our decline to inevitable death. Our concerns are less with the fact of our death than with how we will live out our dying and of the burden that we might impose on our families and our communities.
It seems to me far better to engage in a public debate about how we should be supported as we die (with the bonus that we might free up resources for a far greater community benefit) than to ignore the wishes of the ageing and just watch as the realities of the cost of high-tech health care play out and rationing is introduced by stealth or edict. Given the opportunity, we can be quite sanguine about our lives.
Everyone I talk to who works in health care recognises that we cannot carry on with business as usual. Our population is ageing and we are nurturing an unsustainable debt to the future.
I, for one, do not want a long and drawn-out death. I do not want to burden (neither emotionally nor financially) my family with a prolonged end to my life. I would rather have my community spend money on education and infrastructure for the future than on prolonging my life for a few weeks or months. I don’t want my community to borrow money from my grandchildren to prop me up in frail old age.
Don’t “plug me into the wall”; just treat me with dignity and keep me comfortable as I decline unto death. These are common requests being voiced widely and they should to be listened to.
Associate Professor Will Cairns is the director of the Townsville Palliative Care Service, Queensland.
Posted 4 February 2013
I have watched my father die with a fronto temporal dementia and work as a doctor in palliative care, predominantly in the community setting and so have seen these issues from both sides.
Much of my time visiting ACRFs , is spent advocating for the frail aged and those with end stage dementia to promote an impeccable palliative approach to their care and where appropriate ,to facilitate discussion with family and care staff to prevent un necessary transfer to acute facilities.If Advance Care Directives are available , these can inform discussion and decision making.
A palliative approach is as much about knowing “What not to start” as “What to stop and when” (de prescribing). However , there has to be good communication between health professionals and the patient,family/carer.
Such a palliative approach is ethically distinct from euthanasia.
From a personal perspective, the fractionation of social care from health care was the hardest part of trying to care for my father as his significant co morbidities mounted and he “Sailed into Darkness” with his dementia.
It is often ill understood that Dementia is a progressive neurological disease and culminates in poor swallow , food refusal etc. “Judicious hand feeding” remains the gold standard and there is no evidence for improved survival or QOL with a PEG. I am glad my Dad just ate what he wanted to.
I was “lucky” that my professional knowledge allowed me to make the decisions I am sure he would have wanted, in concert with his treating doctors and he died peacefully in the facility.
As our population ages and more people live and die in ACRF, it is imperative that there is funding to educate and support staff so that they understand the need for negotiated Goals of Care,the palliative approach and how to provide the standard of End of Life Care we would wish for our family.
Well said, Dawn. I see many very old, very disabled people sent to ED from the nursing home because they “won’t eat”. When the end comes, something has to give. We need to give families and NH staff the confidence to approach the end of life as a normal process, and understand prolongation of suffering for the travesty that it is.
This is a very well written article. I watched 2 of my grandparents live in nursing homes for years, being fed with a spoon when they made no effort to feed themselves. My grandmother did not open her eyes for the last 2 long years of her life. I could only watch with my heart sinking. As a doctor, living far away, I gently reasoned with my family not to send her to the hospital for urinary infections, etc., but they did anyway. Please don’t plug me in, but if I have dementia and can’t or won’t feed myself, please don’t feed me. I don’t want to use hundreds of thousands of dollars of resources when I don’t acknowledge the people feeding me. I wonder how many people would say the same…
Thank you, Dr Cairns, your integrity is inspirational. Our aging society needs encouragement to talk openly and honestly to our physicians and our families about our end of life decisions. Our decisions only and not those of family members, should be respected by our physicians. This is usually included in Advanced Health Directives.
My much loved step father suffered a stroke on top of developing dementia. We had hospital care, then rehab, then transition care and then a nursing home. His and my mother’s distress increasing with each stage. After 6 months of misery he developed pneumonia. His two daughters were adamant that there should be no treatment, not even oral antibiotics. He died peacefully within 72 hours. A brave but sensible decision and a good outcome at the age of 87.
I agree with the article and have been leading patients and families in that direction for many years. Fortunately some ACF are now well setup to deliver good palliative care. I’m not a fan of written advanced health directives. I think it too hard to predict and explain all the possible scenarios. There is no substitute for discussion with patients family and staff.
A note of warning , even with my best efforts I have run foul of one aggrieved relative who was at odds with the rest of her family as well. It cost me a lot of angst and an immense amount of work to successfully defend.
As I said above, not only are advanced care directives not common enough (ironically, even for nursing home residents), but they are not specific enough. It’s easy to specify “don’t plug me in” or “don’t do CPR”. What would benefit many NH residents, however, is an agreement to manage death in place – in their own room, in their own bed. Specialist palliative care services are certainly stretched, but it is possible for the GP and nursing home staff to agree on palliative care principles. This requires the team not to be risk averse, and to have the appropriate tools – including access to medication.
The “living will” legislation should have made this easier. My personal impression is that only the insightful & provident do this work, and only the moderately wealthy can afford to do it properly.
That leaves clinicians torn between “duty of care” and “common sense”… and the “common sense” faction contains the important subset of “only one opposed party, with a claim to interest, can ruin your career”.
There is still a huge paradox that relatives will often accept palliative care for their “loved one”, but when faced with their own crisis revert to “I feel fine, surely somebody somewhere can fix me up.”
No, denial is not a universal favourite, but it is certainly pervasive.
If we are to start considering the option (!) of palliative care – early – the next question is: “How early?”. I don’t feel it necessary to advocate this option every time we consider, for the sake of “slamming the door on the worst outcome”, especially for the patient presenting with non-classical chest pain, but it does seem important to mention the poor outcome scenario every time a prognosis is discussed.
That includes, at least from one perspective, such commonplace practices as faecal occult blood screening: Yes, a false positive is significantly more frequent than a true positive, and the death rate following misadventure from the resulting procedures is within an order of magnitude of that from the disease itself.
The point is probably valid, but our society is not really ready for such frankness.
What a thoughtful and well-expressed article. I would like to see it more widely circulated to the public. Having just been through the experience of seeing my 95 year-old Mother sent to hospital from a nursing home and being put through unnecessary medical proceedures against her wishes, the subject is dear to my heart. She had had the foresight to write an advanced health directive, and once I mentioned this, she was handed over to the palliative care team who took over her care, much to her own and my relief, and enabled us to have some quality time together before she died.
A word of caution, though.
This is a discussion about appropriate care at the end of life, not about euthanasia, which is a completely different thing and the two should not be confused. It is a distinction that needs clarification for the general public.
This article was way overdue. The current way has to change. It’s not necessarily about voluntary euthanasia per se either. It’s about choosing not to investigate and leaving people be. For example, tertiary hospitals are routinely ordering colonoscopy’s to investigate iron deficiency anaemia in 90+ year olds, and elderly people with dementia. The approach is all wrong.
Genuinely useless therapy is unethical on all counts – autonomy, beneficence and distributive justice.
That is to say; (1) No reasonable patient would be likely to choose it if they knew it was pointless; (2) It does no actual good and; (3) It divert resources away from useful therapies for other patients – an ethical hat trick.
I agree, but for many in the community the spectre of death is so frightening they would do almost anything to avoid it. Consider the widespread use of complementary therapy in those with cancer.
The art of dying well is more likely with those who have sought to live well. Amongst other things this includes living with the knowledge that one day we shall die, and making provisions for how we wish to be cared for when this time comes. Until we bring death into the ‘living room’ it will always be seen as the enemy rather than the natural end to a life well lived.
It seems to me that you are nudging on the edge of endorsing a choice for voluntary euthanasia and for that I applaud you. Perhaps you could continue your philosophical reflections in concert with your colleagues at on our website at http://drs4vechoice.org/.
Rosie Jones
Delighted to hear such commonsense from our colleagues! My mother is in a nursing home with advanced dementia in Scotland and is being well looked after by overworked underpaid young foreign care workers on the whole at vast expense to herself and the community. She always expressed the view that she did not wish to be a burden financially nor emotionally to the family but it is distressing to witness her own disintegration into fearfulness, anxiety which cannot be relieved, because she cannot remember where she is staying the night or who will be with her, and frequent tearful expressions that she wants to die now.This is anguish from someone who was a very enthusiast positive person all her life and has nothing to do and nothing to look forward to.
I have asked the staff not to transfer her to hospital for acute care – just keep her as comfortable as possible in her nursing home. The lovely young GP was rather surprised by this request but I think is coming round to the idea now.
In addition, I really question the rationale for keeping our own very infirm, demented patients on preventative therapies such as lipid-lowering drugs, anticoagulants and possibly bisphosphonates but the experts are generally reluctant to suggest guidelines on when to cease these therapies until palliative care is formally instituted.
Relatives are often ill-informed about the risk/benefit analysis for medications in the elderly.
Surely we should consider free influenza vaccine for the staff rather than the residents?
This is a very important issue – but perhaps “plugged into a wall” oversimplifies it, as does the term “DNR”. It is relatively easy for clinicians to agree that intubation and ventilation, or CPR are not appropriate – but what about when it is better not to start acute care at all? I would like to see more very dependent people in nursing homes have something like a “don’t send to hospital” plan – so the people who are at the end of life and have recurrent aspiration don’t have to have yet another round of IV antibiotics before they die. What do others think?
I entirely agree with this article. I can say that having been faced with that decision. Three years ago our son had a massive cerebral haemorrhage. His brain was mush, and there was no electrical activity. We did not wish to prolong his agony in any way should he have been aware, which was unknowable.
My family is well aware of my wishes, should I end up on life support, with a hopeless prognosis. As Prof Cairns has said, it would be better if that life support had never been initiated.
I am willing to take the chance that it is possible I could be in a ‘locked in’ status, and be unable to communicate in such a situation.