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LATE in 2019, I was in my car listening to the radio when I heard a statement from an advocate for more research into the prevention of dementia. It went something like this:
“If we could prevent or delay the onset of dementia, then people could die from something else first and we could reduce the need to provide dementia care.”
As I am sure you will have realised, this comment raises interesting challenges for all of us, which I will explore over the course of this essay.
It is not often that one hears such candid acceptance of the inevitability of death expressed in terms of the goal of treatment for a particular disease being to facilitate dying from any preferred alternative.
Most organ system-based advocacy groups talk about how they would like to improve the effectiveness of treatment to decrease mortality from their particular suite of diseases. However, in disease-based clinical guidelines, we seldom see discussion of longer term consequences – how an individual’s life might play out as a whole following life-prolonging treatment, and how they might come to view the cumulative effects of multiple comorbidities.
One acquaintance told me of a parent in their late 80s who had decided to write a legally binding advance care plan that refused cardiopulmonary resuscitation and ventilation. When they developed a community-acquired pneumonia and lost the capacity to make decisions, their family agonised over what to do. Eventually, they overrode the patient’s direction, agreeing to admission to the intensive care unit for ventilation on the grounds that it was good medical practice to do so. The patient duly recovered to more or less their pre-morbid state.
However, this elderly person remained angry with their family because they strongly believed that pneumonia had delivered them an exit ticket that had been cancelled against their explicit instruction. They had had a good life and were prepared to die. They now faced a significant risk that they would have to deal with a far less pleasant mode of death, perhaps preceded by a prolonged period of decline, disability and poor quality of life. They had believed that they could decide in advance not to accept treatment that might prolong their life.
When we are young or middle-aged, we can generally be confident that the treatment of treatable diseases will bring benefits, to us as individuals with disease, to our families, and to the community at large. But only so long as those treatments can be afforded without excess detriment to the individual or threats to the wellbeing of the community as a whole.
As we get older, we start to accumulate disabilities from general wear and tear, along with a growing list of comorbidities that can be managed but not eliminated. The net benefit to the whole person of further medical intervention tends to wane the longer we remain alive. At the same time, the burdens for the individual, their family, and the community at large start to compound.
This situation is of course a modern phenomenon. Until the mid 19th century, there was little that could be done to arrest the progress of disease. Although the then median life expectancy of about 40 years was in large measure due to what are now preventable illnesses of childhood, most life-limiting illnesses of adulthood were fairly rapidly fatal and few people lived to accumulate multiple complex comorbidities.
It is clear that, over the past decade or so, an increasing proportion of recent gains in life expectancy have not been in the healthy period of our life. The ongoing application of life prolonging treatment to larger numbers of biologically older people and those with incurable illness eventually just extends the frail and unhealthy bit at the end.
Recent evidence suggests that, as expected (here, here, here and here), the progressive increase in overall life expectancy of the past 150 years or so has slowed, or in some places, even reversed. While the reasons are complex (including in the US the opioid epidemic and the complexities of their health system), this is most probably due in part to the unfettered access to food and lack of exercise that has become a feature of the developed world lifestyle since the middle of the past century, and perhaps that we are also running into the wall of our biological maximum life expectancy.
The culture of 20th century medicine generally did not encourage us to consider the afflictions of our old age as anything more than a fragmented list of medical problems to be solved. Many technically oriented disease-treating specialists had not been trained to believe that it was a doctor’s role to care for the whole person or to consider the goals and preferences of the person with the disease. Often, we did not have the communication skills to suggest that our patients consider their quality of life and the reality of future illnesses and/or deterioration.
Our reluctance to engage with the context of the whole person has meant that ailments have been investigated and treated independently, with outcomes judged by the separate impacts on each disease – treatment with the goal of disease management has become an end in itself, rather than a means to the end that a better life be experienced by the patient.
Until recently, most patients simply accepted treatment from the variety of doctors who specialised in each of the diseases that they had been landed with. At the same time, many of us have long said that we would prefer to die suddenly in our sleep rather than suffer a long illness with increasing disability. Others would prefer a short illness (with our cognition intact and effective palliative care) so that we could sort out our affairs and say our goodbyes.
The single sentence from the radio discussion on the benefits of preventing Alzheimer’s disease poses an interesting challenge. The benefit proposed by the speaker is only realised if the person is able to “die from something else first” because they either refuse life-prolonging treatment or it is ineffective. If treatment for a first life-threatening disease were to succeed in preventing death from that cause, then the person will inevitably develop a subsequent disease, possibly even dementia due to a different disease, while continuing to experience any adverse sequelae of their first disease and its treatment.
Paradoxically, patients who develop dementia as a first major illness are much less likely to receive life-prolonging treatment for a subsequent major illness or disease. Such illnesses offer them an escape from their dementia, as it does for their family and the community at large.
On several occasions, I have discussed the options for a patient on dialysis who had developed an incurable cancer – whether to stay on dialysis and die of cancer in several months or to stop dialysis and die from renal failure, and the timing of such action. For some, a decision to cease dialysis would result in their death in a couple of weeks but allow them to go back to their home community. This choice was not difficult when going home was of great spiritual or personal importance. The fact of their death was not in doubt and their choices were meeting their own needs rather than the demands of their disease.
Such decision making is not so straightforward for many people, particularly those with illnesses of uncertain prognosis. Few of us, when well, make proactive decisions to forgo treatments that might extend our life so as to avoid a prolonged death. Until now there has been little discussion in the community that an individual might actually decide to forgo life-prolonging treatment for any first treatable illness because they would prefer to die from any condition rather than an accumulation of subsequent illnesses, particularly before the nature of that disease becomes apparent.
A number of factors are likely to make such decisions increasingly common.
We are becoming much more open in our conversations about death. On a recent long-distance journey, I watched several of the movies based on the Harry Potter books. Their author, JK Rowling, has said that they were shaped by her personal experiences dealing with the death of her mother. As books ostensibly aimed predominantly at children, they manifest a remarkable openness in the ways that they deal with death and grieving (here and here). The day after I landed at home, I participated in a Death Café where I found the same openness that I have experienced in conversations with my elderly relatives and their friends.
Our behaviour is changing as we become more able to accept death as normal. Even while we are becoming more aware that we can never control the world, the sense of our locus of control of personal matters of choice is shifting from external to internal. Increasing numbers of people are not willing to wait passively to discover if the random whims of fate deliver a satisfactory final phase to their life. Many of us would prefer to exercise some authority over the decisions that can be made about how we might experience our individual death.
The widespread promotion of Advance Care Planning is increasing awareness of the legal rights of individuals to consider the broader context of what is important to them and to choose the health care that they will and will not accept, irrespective of the preferences of others.
I expect that, content with the fullness of the life they have led and with the goal of avoiding what would be for them an unacceptable mode of death in frail old age, increasing numbers of people will decide to refuse or cease potentially life-prolonging treatments. When we have capacity at the time, we can of course make decisions when choices are being offered. We can also pre-empt others making unwanted choices on our behalf if we have lost capacity by prospectively creating a legally binding advance care/health directive (ACD/AHD) that details our choices.
Some families and friends will have difficulty dealing with advance decisions that refuse or cease potentially life-prolonging treatments, particularly if they were not aware that choices had been made prior to their being implemented.
Many doctors also find such decisions by patients confronting. A recent Australian study found that:
“doctors experience decisional conflict when attempting to adhere to ACDs in practice, especially when they believe that adhering to the ACD is not in the patients’ best interests [as the doctor sees them], or if they doubt the validity of the ACD”.
Clearly, we all bring our own beliefs and biases to the table when dealing with the decisions that our patients make about their lives. However, in a world where we have great technological power to prolong a life that its owner may not wish prolonged, it seems appropriate that we should all prepare ourselves to deal with such conflicts.
Additionally, it is important to remember that Good Medical Practice does not override the rule of law.
“If there is any conflict between this code and the law, the law takes precedence.”
As both doctors and family members, we will all have to learn to deal with the complexities of people exercising their legal right to personal autonomy in an effort to exert some control over how they would prefer not to die.
Dr Will Cairns is loitering on the brink of retirement from his role as a palliative medicine specialist based in Townsville.
The statements or opinions expressed in this article reflect the views of the authors and do not represent the official policy of the AMA, the MJA or InSight+ unless so stated.
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As an ICU physician with some decades of experience in several countries it seems that health workers who disregard the patients wishes may sometimes be driven by their own beliefs reframed with or without insight as taking the moral high ground at the same time disrespecting the patient’s to be in some way subordinate to their own.
Relatives of the dying who disrespect an ACHD may do so also from fear and sometimes guilt. The fear is often a personal fear one way or another.
Perhaps it won’t work to not find a way of properly reframing the issue back to the patient and discussing the reasons to end suffering – which is Good.
It’s not uncommon that there is a need to reassure others that whatever fault they fear is theirs is not theirs which can be effective and more than likely right.
Sometimes the ICU team’s greatest role is to absolve others of a useless and destructive guilt that has taken hold inside those who need to live much better lives with that guilt and fear just gone.
It is ‘unfortunate’ that the time taken by Carers to come to terms with someone’s death is sometimes bought at the price of unnecessary suffering of patients whose greatest fear was to avoid exactly that.
The whole point is “Consent” and “Competence”. Medical examination and treatment without Consent is techically and legally assault. If a patient attends a doctor, it is assumed that they give their consent. If a patient is brought into an Emergency Department in a state of unconsciousness or a drunken / drugged state, then they are unable to give or to refuse treatment. In such a case, the doctor is entitled to do what they believe is the best for the patient because the patient is not Competent to refuse. So a patient in cardiac arrest will receive all possible resuscitation. But if the patient has already refused a particular treatment by means of a valid “advance care directive” while competent, then resuscitation constitutes an assault, and the doctor can be sued. Usually this is not known, but in the case described above, it was known. The doctors accepted the pleas of the family instead of the legally expressed wishes of the patients, and this was clearly wrong. I do not know of a case where the patient took legal action against the treating doctors but it will undoubtedly happen. The best safeguard is for the patient to discuss his wishes with his family and make sure that they understand. The appointment of a an attorney (medical treatment) (in Victoria) gives the decision-making power to a single person. That person must then be consulted by the medical practitioners.
Relatives can overrule an AHD in Queensland but not in all States.
Thanks for a beautiful essay Will, I hope you continue your writing after you get around to retiring.
I believe we doctors should rethink comfort care at end of life. It is not withholding treatment. It is alternative treatment, with the goal of symptom control not life prolongation. Patients at end of life should always be offered comfort care treatment when they attend the Hospital. And they should be encouraged to seek discharge to the place they would prefer to die, without us stopping them because it’s not safe.
The perceived balance of “risk management” won’t change in favour of persons making AHDs until some unwilling survivors successfully SUE their health providers or families for assault – and in the case that it was the family, disinherit them and bequeath their estates to organisations promoting autonomy.
My 91 year old mother had an advance health care directive from the age of 80. After being diagnosed with Stage 4 bowel cancer, when 88, she agreed to have bowel resection but no further life saving treatment. She prayed that she would suddenly drop dead as she had had a good long life, unlike my father who died at 52 after an 11 year battle with cancer. At one stage she became sick and was taken to hospital where they told me she didn’t have long and as her Carer I needn’t look for nursing home. On her 3rd day in hospital, around 6am, she had a heart attack and they revived her. They didn’t phone me, the first I knew about this was when I went in around 10am and found her in a different room and attached to multiple monitors. Her first sentence to me was to please see the staff about turning off all these as she didn’t like the constant beeping. She had no idea why she had them. I took her request to the staff and asked why she was being monitored. They asked me to wait until they got her doctor to explain what had happened. He told me she’d had a heart attack but was stable now. I informed him that I’d given the signed health directive to staff when she was admitted. I had also verbally explained her wishes. This would have been a good way to die for her. I was told that “we don’t do euthanasia at this hospital “.
A week later she was moved into a nursing home in the high care ward very aware of the lack of staff and constant embarrassment re her personal care. Fortunately 10 weeks later after she requested better pain management she passed away.
I found it extremely helpful, as next of kin as well as loving daughter, to be present and witness my Dad’s writing of his advance care plan. This left no room for doubt, even though the subsequent process was hard to watch. But it was about his comfort, not mine.
Thank you Will for your paper. The current health milieu is indeed a challenging process. Multi-disciplinary teams person-centric care and a myriad of choices combined with possible litigious scrutiny extend end of life unnecessarily. Unfortunately patients often find AHD and EPOA documentation overwhelming, especially when confronted with their own mortality in a crisis. Thanks again. You have taught me so much throughput my career.
My Death is Mine
When I seek my final day
And clearly leave my final say,
When only suffering is my due
And all my options Oh, so few,
Give to me my rightful power
To plan the means and choose the hour.
To block my personal wishes then,
With narrow rules of callous men
Whose bigotry does clearly show,
Is cruelty, as we all know.
Give back to me my life to lose,
The kindest end that I may choose
Thank you Will for a very thought provoking paper. As an ex palliative nurse, I applaud any discussion on end of life care matters. It is a facet that many Drs overlook in treatment. It is unfortunate that the risk of litigation against an organisation overrides an individual’s right to have their wishes adhered to. Hopefully this practice will change in the near future. Papers such as this one, open up the pathway for discussion.
As a scientist working in medical schools in my early career, I reached the conclusion that many physicians felt that success meant the patient died in another speciality.
Better recognition of the legal value of advanced health directives would be helpful. My husband and I gave ours to our then GP as we thought for safe keeping. The practice scanned them into the system and destroyed the originals.
A wonderful man and a very concise read. I did not know that the relatives have the ability to overthrow the AHC plane of an individual- luckily I know my family will adhere to my wishes , when the time comes. Others are not so fortunate.
Thanks Dr Will. Hear hear to everything written.
I read this essay with great enthusiasm, hungry for more conversation about end of life issues, as an icu nurse. Will has summed up the whole business of it beautifully and knowledgeably. It’s about the whole person , including their wishes and emotional well being,not just systems failing. While there is no quick solution, the direction we are heading matters and the more we talk about it the better.
While doing a locum as physician, I was very surprised to hear that if a patient had expressed a wish not to have possibly life prolonging treatment and the family did not agree, the wishes of the family would prevail. The reason for this was not stated, but I suspect it may have been a question of possible legal liability, so called risk management.
I think this is an improper approach. For many old and elderly people, life prolonging treatment can be an ordeal from which they may never recover, particularly if they are treated in intensive care or if there are significant complications, which are of course more likely in that age group.
The original purpose of the guardianship legislation was to enable people to make decisions about their own health care and if doctors nurses or family override this, their action is contrary to the the provisions of the law, as it was. My understanding was that those with delegated authority, usually family members, were required to make decisions that respected their relative’s wishes, were medically advisable and within the bounds of medical ability.
Is this not the case today?
of course it is very difficult for families to watch their parents and relatives die, and looking after dying patients is regarded by health care workers as the biggest ethical and emotional challenge, but we must respect the rights of individuals to choose what medical treatment they receive.
Excellent insight from someone with extensive practical experience and professional wisedom.
Surely the ‘big-picture’ is all about:
1. Quality not quantity
2. Respecting and implementing the parient’s wishes………..especially when they are formally documented
Certain Doctors/ Hospitals will remove ACDs from patient records where they conflict with their religious beliefs. We had to resort to legal threats to -prevent this when this happened with my father as was in hospital with the final stages of dying from progressive, irreversible and untreatable cardiac failure due to conduction anomalies. A perfect mind trapped in in a failing vessel – his greatest nightmare.
I strongly support legal underpinning of ACDs and making tampering with them or their removal from patient records a criminal offence.
I had a patient with chronic renal failure who made the decision to come off dialysis in the face of another terminal diagnosis.
The renal physician consulted me (the humble GP) to confirm that the patient was of sound mind and then agreed.
The patient died peacefully after 4 days and the family were happy and grateful.
A win for everyone
Will
Thanks for your essay.
As a 75 year old radiologist still working part time and looking after patients in the type of situations you describe, I see much of the problem but can’t do anything about it as a radiologist.
As a medical advice manager to colleagues, family and friends I advocate that persons make advance decisions regarding medical management of severe incapacitating disease or trauma as once the person is in the care of paramedics and then emergency department colleagues and team the state legal health priority is the preserve life by whatever intervention within reason may be required. Such may or may not be “appropriate” for individual patients depending on their informed decisions – eg massive stroke with subsequent nasogastric tube feeding surviving for transfer to nursing home and subsequent slow demise.
You have put the questioning back into the whole of life outlook of the patient not just the current individual disease, perhaps treated by a specialist colleague with a clinical outlook limited to that area of medicine.
My family, including 3 medical practitioner and 1 solicitor son, have successfully navigated the problem with my mother and her stroke – following her instructions – and my wife and myself, both lucky enough to be fairly fit and well, have yet do do our advanced care directives but the whole family knows we do not want to be kept alive for a future lingering death.
Now – back to work – the blackout is over but the rain haas arrived in Albury NSW
My wife and I are now both aged 90. We have avoided various health problems and are now well and living independently. We do not suffer from dementia but that is the worst threat to our future. We should like our deaths to be fairly sudden. We are in no hurry to die, but we have had wonderful lives and are not afraid of death, altthough we should like dying to be not too painful. We have agreed that if one of us should have a cardiac arrest, the other should have a cup of coffee before calling the ambulance. We do not want to live to a very great age, and we hope that we shall never need to “go into care”.
Thank you Will for this excellent essay.
I have an Advance Directive the last paragraph of which states that “anyone knowing the content of this directive that acts contrary to its provisions will be deemed to have committed an assault”.
My directive is very detailed but unfortunately many are not, making for problems in interpretation.
I commend the Advance Directive pro formas that are available from the NSW organisation “Dying with Dignity” that provide very detailed options for people to define just what they require.
The other aspect of all of this is the fact that very often, Advance Directives are not available at the point where decisions have to be made about treatment. This hopefully can be overcome if people have their Advance Directives on their MY Health record, assuming that these are checked as part of the triage process when an ambulance is called and/or patients are taken to hospital emergency departments.
A better option would be to have a national register of advance directives with a mandatory requirement that no emergency treatment could be undertaken without the patient’s consent before the registry has been checked.
I welcome a much broader debate on this matter.
My Dad made an advance care directive with me and a specially trained social worker. Then when he became sicker, it was hard to watch him fade away in front of me, but I respected his choices.