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How do you want to die?

How do you want to die? Quickly, painlessly, peacefully lying in your own bed?

Most people say that. But then, people seem to cling to their lives, even if that could mean a less peaceful end. When asked whether they would want physicians to perform certain interventions to prolong their lives like CPR (cardiopulmonary resuscitation) or mechanical ventilation (‘breathing machine’), people say ‘yes’.

Interestingly, a study discussed in a Radiolab podcast from earlier this year reveals that contrary to lay people, physicians do not want these life-saving interventions they perform on their patients performed on themselves.

Joseph Gallo, physician and professor for mental health, reports: if physicians are asked whether they would agree to have certain treatments performed on them in case if they were suffering from an irreversible brain injury without terminal illness (a state similar to severe dementia), the vast majority say ‘no’. 90% of physicians don’t want CPR. Around 80% object to mechanical ventilation, dialysis, and the use of a feeding tube. Over 60% even reject the use of antibiotics. The only thing physicians want for themselves is pain medication (over 80%). Lay people, however, generally want all these when presented with the same scenario.

What causes such a big gap between the wishes of lay people and physicians? The simple explanation seems to be: knowledge. Physicians know how these interventions work and how high their success rates are – and what side-effects they can cause. Lay people’s opinion, though, seems to be guided more by the rose-coloured picture medical dramas on TV are painting. A study from the end of the 1990s found that in medical TV dramas like ‘Emergency Room’ and ‘Rescue 911’ when CPR is shown in 75% it leads to the patient walking out of the hospital door cured. In real life, however, only 3% of CPRs lead to a ‘good outcome’, i.e. patients surviving in a healthy condition. A further 3% of patients don’t die, but fall into a chronic vegetative state. An additional 2% of patients are stuck somewhere in between. The remaining 92% die.

But the low success rates of these interventions are not the only fact physicians know better. According to Ken Murray, a retired physician and clinical assistant professor interviewed for the Radiolab podcast, some of these interventions are ‘pretty terrible’. He gives mechanical ventilation as an example: the ventilator enforces a certain breathing rhythm to patients that doesn’t match their own. So patients have the feeling they can’t breathe and unwillingly fight the machine. The only way to get ‘air in and out of them’ is to paralyse them. So they are fully aware of what is happening, but completely helpless because they can’t neither move nor communicate. Murray says that in hospitals ‘a lot of times we are doing things to people that we wouldn’t do to a terrorist’.

Apparently, knowing all that affects the choices of physicians. Murray writes in one of his essays: ‘I cannot count the number of times fellow physicians have told me, in words that vary only slightly, “Promise me if you find me like this that you’ll kill me.” They mean it. Some medical personnel wear medallions stamped “NO CODE” to tell physicians not to perform CPR on them. I have even seen it as a tattoo.’

What should we make of that? In many countries, physicians are required to perform life-sustaining treatments on patients – treatments they wouldn’t want for themselves. Isn’t that telling…?

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11 Comment on this post

  1. “What should we make of that? In many countries, physicians are required to perform life-sustaining treatments on patients – treatments they wouldn’t want for themselves. Isn’t that telling…?”

    Ideally people need to understand the facts.

  2. Physicians are also more likely to use lethal medication to end their lives than members of the general public: Hawton et al, ‘Doctors who kill themselves: a study of the methods used for suicide’ (2000) 93(6) QJM 351-357.

    1. Thank you for this very interesting reference, Isra. Again, it seems to be knowledge that (partly) causes the difference between the physicians’ behaviour and that of people from other professions. (‘The finding that the greater proportion of suicide deaths in doctors were by self‐poisoning may reflect the fact that doctors have ready access to drugs, and have knowledge of which drugs and doses are likely to cause death.’)

  3. Sean O hEigeartaigh

    There’s an interesting parallel here with modelling (climate, catastrophic risk, etc) where the people who design the models are much less confident in model results than the people who use the models. There’s clearly a major loss of information between “people who create or perform the process” and “people who make use of the process” – either deliberately or non-deliberately, we are unable to convey to people less “close” to the procedure our lack of confidence in it. How can we correct these failures?

  4. Isn’t it also plausible that the physicians are simply wrong? Not about the facts, but about their response to those facts. Things often look worse from the outside, and repeated exposure to them could certainly exarcerbate that horror.

    e.g. The CPR stats don’t sound too bad to me. From my point of view the options are either I die, in which case I’m no worse off than I was before, or I have about a 40% chance of being fine and 25% chance of being at least somewhat functional. Obviously I’d like better odds than that, but given a choice between that and a 100% odds of dying it doesn’t seem like a hard choice.

  5. If a patient wants to be resuscitated despite whatever disease they have, that’s the patient’s business. What the physician knows, thinks or feels about that decision is irrelevant. Moreover, I strenuously object to the air of elitism that permeates this post: people who choose to undergo CPR are not necessarily looking through media-mediated, rose-colored glasses that physicians lack. Physicians are people, too, with biases that impact their perceptions of life. That’s why these decisions are best left up to the patient. I also object to this article’s conflation of a feeding tube with other, invasive forms of life support. A feeding tube simply provides sustenance to someone who cannot feed themselves. It is not a device that keeps actively dying people alive, and should not be confused with those that do.

    1. Meghan, I respectfully disagree with your opinion that the physician’s knowledge is irrelevant to the decision whether or not to resuscitate, and that “these decisions are best left up to the patient”. I do agree that the patient’s preferences and values are important to the decision, in fact, they are to be considered in any decision about medical care. However, most patients would only want to make such a grave decision based on sufficient information about the relative benefits, and importantly, the relative burdens of the alternatives. For this information, the patient relies on her doctor. The doctor’s duty is to inform the patient. This includes informing her of the dangers of the proposed treatment which may, in the case of life prolonging resuscitation, include pain, suffering, and indignity – a gain in the length of life at the expense of quality of life. This knowledge is certainly “the patient’s business”, and with it, many patients will not want “to be resuscitated whatever disease they have.”

  6. The responsibility to inform the patient of the risks you’ve cited is not the same as making that decision for the patient. If, after being informed of those risks, the patient chooses to be resuscitated anyway, than the doctor should be legally bound to abide by his or her wishes.

    1. Meghan, what you are implying is that should a patient demand a course of medical treatment that is not going to benefit the patient, and in fact may cause him harm, the doctor must be forced to provide such treatment. Doctors would find this abhorrent, as they have a professional duty to diminish harm to, and act only for the benefit of, their patients. Furthermore, it is doubtful that any jurisdiction which must ration its healthcare resources would legislate to permit patients to demand futile treatment – treatment which will not benefit them – as this leads to opportunities lost to provide treatment to other patients, who might benefit from the resources expended.

      I agree with you that doctors should not unilaterally make decisions for their patients. But neither should patients be permitted to unilaterally embark on medical treatment in spite of medical factors that would make such treatment futile. This breaches both the doctor’s professional integrity, and the equitable distribution of health care.

  7. I think that the media deserve part of the blame – yet, who doesn’t know that the media mostly show us a fantasy world? –, but that we must focus on the whole medical/social system to understand what is happening: Many people are told from childhood on that there is a pill for every ill, that is, they expect medical solutions that are provided for and consumed by those fulfilling certain – medically-legally defined – criteria.

    More traditional ways that understand suffering as an essential part of life, a challenge for personal growth, and propose non-medical coping strategies are denounced as superstitious, backward, or, at best, “mere placebo” by leaders in biomedicine who earn billions with their technology and treatment. If I would write about them in my science blog, other bloggers might accuse me of promoting pseudoscience, an unforgivable sin in the science communication world.

    Murray gave this very example of his own brother who spent the last eight months of his life – perhaps even enjoying a longer period of life than if he had stayed in a hospital, Murray suggests –, just took some painkillers worth $20, and died peacefully, while intensive, yet futile care in a hospital might have cost several hundreds of thousands of dollars; and doctors unwilling to provide such treatment might have been sued by the family of the deceased for withholding treatment.

    The knowledge on mastering suffering and death has been forgotten by many, many probably do not even know that it ever existed, but some books and traditions are still available. If our mainstream medical system with its fetish of health does teach people technical dependence and does not teach them a proper art of suffering and dying, then people should turn to other systems, too, to be prepared for the unforeseeable moment when they cross the line where even the most expensive medical machines cannot help them.

  8. Letting a patient die, particularly when he or she doesn’t want to, constitutes *harm.* Moreover, the ethics promoted by this journal embrace a very broad definition of which circumstances make care “futile.” For instance, an 80-year-old adult may develop pneumonia and want antibiotics to treat the infection. His or her doctor may feel that this treatment is “futile” because the patient is 80 years old and has, at most, about 20 years left to live. The doctor may feel that it would be best for the patient if he or she acceded to death in this case. The doctor is entitled to his or her *opinion,* but they are not entitled to force their ageist, ableist prejudices on such a patient. If that patient wants to try and live out those last 20 years instead of dying of pneumonia, that is his or her RIGHT. It’s HIS/HER BODY, not the doctor’s.

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