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.