Doctors and Dying

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Valuable for pastors.

A recent RadioLab podcast, titled The Bitter End, identified an interesting paradox. When you ask people how they’d like to die, most will say that they want to die quickly, painlessly, and peacefully… preferably in their sleep.

But, if you ask them whether they would want various types of interventions, were they on the cusp of death and already living a low-quality of life, they typically say “yes,” “yes,” and “can I have some more please.”  Blood transfusions, feeding tubes, invasive testing, chemotherapy, dialysis, ventilation, and chest pumping CPR. Most people say “yes.”

But not physicians.  Doctors, it turns out, overwhelmingly say “no.”  The graph below shows the answers that physicians give when asked if they would want various interventions at the bitter end.  The only intervention that doctors overwhelmingly want is pain medication.  In no other case do even 20% of the physicians say “yes.”…

The paradox, then — the fact that people want to be actively saved if they are near or at the moment of death, but also want to die peacefully — seems to be rooted in a pretty profound medical illiteracy.  Ignorance is bliss, it seems, at least until the moment of truth. Physicians, not at all ignorant to the fraught nature of intervention, know that a peaceful death is often a willing one.

About Scot McKnight

Scot McKnight is a recognized authority on the New Testament, early Christianity, and the historical Jesus. McKnight, author of more than forty books, is the Professor of New Testament at Northern Seminary in Lombard, IL.

  • candeux

    In addition to the emotional effects on patients and loved ones of prolonging death, the economic effects are considerable. I don’t have the statistics handy, but the amount of money spent on medical care in the last year of life is staggering.

  • Susan_G1

    Two disclosures right away: 1) RadioLab, while immensely entertaining, is anecdotal at best; they would not approach final measures with patients the way a physician would. 2) I am a physician who has cared for terminal patients. So is my husband. And it’s a matter physicians discuss among ourselves with enough frequency, because it’s not easy for us, either. We have been trained to save lives. But we’ve all seen the alternative, and know what we would want.

    In my experience, when the physician(s) explain the end of life prospects with the patient (what will intubation mean for the final outcome? Medications? Shock? IV hydration? Nasogastric tube feeding? etc.; we do our best to eliminate ‘medical illiteracy’), the majority of patients choose a peaceful, non-interventional death. My recommendation is usually for pain medications and IV hydration, the latter because dehydration as a means of death is unspeakably bad. However it rarely comes to that. We then make out a living will and write in red capitol letters all over the chart, DNR (Do Not Resuscitate). As the time gets closer, I ask again. I let them know they can change their minds. Some do, clinging to the hope that a few days or weeks will make a difference. Most do not.

    My experience has been that it’s the families of the patient who can’t live with the patient’s decision. They see Mother dying and they panic. Do something! they cry. Do something right now! This isn’t what she really wanted!

    We are doing what your mother wanted, we reply. They know that; I’ve discussed it with them before hand. We try to prepare them, we really do, right down to what agonal breathing looks like. Sometimes, unbelievably, we either must give in to the family’s requests until a lawyer can advocate for the patient, or we must remove the family from the patient’s room because they are hysterical. Death has become so unnatural to people that those watching cannot handle it when it comes. “It’s not natural”! What is natural about tubes and electric shocks and machines that breathe for you?

    It is not a matter of money. Would you want your end decided for monetary reasons? Neither does anyone else. It’s definitely (for the physician) not a matter of money.

    I once had a patient who was ventilator dependent who for medical reasons could not and would never leave the hospital’s Intensive Care Unit. He wanted to die, he had a living will and everything in place. He was conscious, he could make the decision, but his wife protested so much that he gave in. After 8 months in the ICU, he convinced his wife to take a short vacation. We all knew what he was up to. Lawyers were present, the hospital administrator was present when we turned off the ventilator and let him do what he so desperately wanted. The morphine drip assured he would not feel the shortness of breath acutely. He was so grateful to us for going along with his ruse. He died peacefully. His wife tried to sue us.

    Nothing about death is normal anymore.

  • Elizabeth2000

    Agree completely. In my ICU the doctors and nurses who see this stuff all the time generally agree on what interventions are useful and which are not and what we would not choose for ourselves and our families. It is not as controversial as most people think. But most people who watch medical shows and medical drama think that CPR is a miracle technique for saving lives and that to refuse to give it is to “kill” someone and practically the same as putting a bullet in their head. Sigh. Our society makes it very hard to discuss medical inevitabilities rationally – people often get very upset when talking about what *is* going to happen and refuse to be educated. In the end, this denial serves no-one, and we end up being forced to give medical treatments which are futile and distressing for everyone.

    I can’t help thinking (but don’t often say) that a little bit of medical paternalism in this area would help. By the time people have the experience and knowledge they need to make good decisions for themselves and others, it is often very late in the process – and then the next family comes in and we start all over again…

  • Tracy Byrd Dickerson

    As a Certified Hospice and Palliative Care Nurse,who practices as an Advanced Practice Nurse, I have seen this scenario played out more times than I can remember…and (sadly) I am quite sure I will continue to do so. Part of the problem stems from lack of information, the second problem is lack of training with regard to how to convey meaningful information sensitively and charitably.
    Unfortunately, although it is now becoming a more common phenomenon, most medical and nursing schools do not teach their students how to give bad news, or how to choreograph family meetings, and most medical professionals are blissfully unaware of the statistics with regard to the (in)effectiveness of CPR for *otherwise well* patients who have littlewrong with them prior to a trauma is only
    5-10%; the numbers decrease dramatically for ill, hospitalized, and/or seriously ill patients (2% or less). Our perceptions, it seems, tend to be skewed by television dramatizations that show person after person returning to full physical function immediately after a “code” (according to a NEJM study, 67-75% of television patients survived after a “code”in a television dramatization, comparted to the significantly lower real numbers). The reality is that while some patients may experience a “Return of Spontaneous Circulation” (ROSC), most only experience the“benefit” of this for minutes to hours before experiencing death again, most do
    not regain consciousness.

    Equally distressing is the first problem to which I alluded above: the misinformation that abounds within the medical community itself about what constitutes a “good death” and about what measures are best to institute to ensure that a patient has as few side effects as possible at end of life. Case in point is the information regarding IV’s at end of life. The statement that: “dehydration as a means of death is unspeakably bad,” (stated in the previous comment) is patently inaccurate. It is an absolute well-documented and widely accepted medical fact that decreased hydration at end of life brings relief from hiccoughs, abdominal bloating and discomfort, vomiting, tumor pressure and the pain associated with it, shortness of breath, and cardiovascular overload (which causes the sensation of drowning at end of life); and that dehydration promotes a sensation of euphoria and promotes a natural (i.e. God-programmed) process whereby the patient has reduced sensitivity to discomfort.

    I agree with the previous commentor that Radiolab might be considered to be a questionable or anecdotal source of medical information, but there can be no argument that with regard to the reputations of such sources as the New England Journal of Medicine (http://www.nejm.org/doi/full/10.1056/NEJM199606133342406)
    the Robert Woods Johnson Foundation (www.rwjf.org); and the University of Pennsylvania’s Oncolink (www.oncolink.org/coping/article.cfm?c=2&s=7&ss=7&id=515).
    My recommendation to anyone who finds themselves in the unfortunate circumstance of having to make these difficult decisions in the hospital: Get a second opinion by requesting a Palliative Care consult (most large hospitals are now mandated to have Palliative Care Programs). You will then have the opportunity of meeting with an interdiscilplinary team (doctor, nurse, social worker and chaplain) that have been specially trained to deal with all aspects of this challenging medical situation. These caring and highly educated and board certified professionals will be able to better guide you through the process because they are THE experts in comfort and end-of-life. When you have a heart condition, you go to a cardiologist; when you have a lung condition, you go to a pulmonologist. Whe you need good, accurate, and charitably delivered information regarding end-of-life, you will get it from the Palliative Care Team. It is no different. Hope this was helpful.
    Peace,
    Tracy B. Dickerson, RN, BSN, MACM, CHPN

  • Phil Miller

    Did you actually listen to the Radiolab podcast? The data that Radiolab refers to when talking about what doctors would want when they face end of life isn’t based on anecdotal evidence. It’s taken from the John Hopkins Precursors Study: http://www.jhu.edu/jhumag/0601web/study.html

    I don’t anything in the podcast would disagree with what you’re saying, really. It’s just that the reality of facing death is different once people are there in the room and when they are talking about in the abstract.

  • Susan_G1

    Re: CPR: patently untrue. We are not deluded; approximately 2% of out of hospital cardiac arrest patients are discharged intact and live normal lives. 5% live one month or less, and a small % of those are “intact.”

    Re: death by acute dehydration, it *is* a horrible way to die for the average person. The progress is roughly: headache, nausea, chest and abdominal pain, extreme thirst, muscle cramps, tongue swelling, hallucinations, convulsions, difficulty breathing, coma and death. Per Dr. David Stevens, the head of the Christian Medical Association in America: “Is dying of thirst and dehydration a painless death as some experts have asserted? Most so-called experts have never seen someone die in this manner. Unfortunately, having worked for 13 years in Africa,where the most common cause of death in children is dehydration from gastroenteritis, I have seen hundreds if not thousands of patients with
    dehydration…Contrary to those that try to paint a picture of a gentle process, death by dehydration is a cruel, inhumane and often agonizing death.” That’s not to say nothing can be done to help. Ironically, small amounts of fluid help (hence the IV). So does having an empty stomach, cleansing the bowels (decreasing bloating), mouth care, and meds. Sites that guide Voluntary Death by Dehydration (VDD) note that you will need to fight to do it, and you will want to change your mind “about 100 times per day.” It sounds like the majority of your patients are pretty fragile to begin with, which lessens the discomfort and speeds the process, but most attributable to “a calm and peaceful death” is the coma they lapse into and the pain meds administered.

    Really, do you think we’d give terminal patients fluid overload? My husband is the director of the local paramedic unit, monitoring their training and performance and command calls. About 10% of command calls are for “patient down / Cardiac Arrest”, and that means one to a few patients/day (of 55,000 patient visits/year).

    I have no problems with a Palliative Care consult. You do seem to have some problems with what physicians do and do not know.

  • Susan_G1

    No, I don’t listen to Radiolab. When I do, though they find very
    interesting subjects to discuss, I find myself getting upset at the
    science they “use” to back up their conclusions. My adult children like Radiolab, and we’ve had lots of talks about the topics, but they know I will challenge their conclusions.

    Yes, theoretical vs real is worlds apart. That’s why it’s never one discussion, and why they can change their minds. By the time they have suffered enough to be ready to die, they usually know how they want to do it. Some don’t. It’s OK.

    Your link, btw, had nothing to do with the topic. Did you read your link?

  • Phil Miller

    I just put that link there to point to the Precursors Study where the research they’re talking about comes from. As part of that study, a doctor and professor at John Hopkins started asking the doctors involved questions about what interventions they would want at the end of their lives. What he found was that doctors were much less likely to answer yes to things artificial ventilation, feeding tubes, CPR, etc. This link in the original article for the particular Radiolab episode describes it better than the link for the overall study.

  • Susan_G1

    there is nothing in that link that I could find that had anything to do with medical students’ – nor doctors’ – opinions about death. It was a longitudinal study on risk factors for death.

  • Phil Miller

    Well, according to the Radiolab page, the doctors that participated in that survey were the one’s that were given questionnaires regarding what life-extending interventions they’d want.

  • Susan_G1

    another example of RadioLab’s excellence?

  • http://www.lambpower.com/ Steve Dawson

    I am not a doctor, nor do I pretend to be one. However, I have had some experience with the end stages of life. My father recently passed away from a form of Parkinson’s disease. After a point he couldn’t swallow, he basically lost the ability to communicate. We did put him on IV fluids/feeding for a while, but there was no improvement. He had expressed several times in my presence and in my mother’s presence that he did not want his life prolonged.

    My mother and I made the decision to discontinue the IV fluids since there was no improvement> he passed away peacefully about a week later. Although I did see him the day that he passed, I had visited him a couple of days before hand. He was listless and had not apparent signs of pain or discomfort. He was also not on any pain meds.

    As part of end stage disease, the body starts to refuse to eat and take water. If I am not mistaken this is a result of different organs failing and the body understanding that it cannot process what is being put into it. Comparing a patient who has say End Stage Liver Disease or Renal Failure with someone who does not have a terminal illness does not work.

  • christythomas

    What doctors want and what is delivered in the hospital are two different things. Here is an account of what my family experienced as we sought to extricate our mother from the medicalized way of dying and give her what she had explicitly stated she wanted, a simple, ordinary death:
    http://www.amazon.com/An-Ordinary-Death-Relief-ebook/dp/B00D476J7E/

  • Phil Miller

    You really need to listen to the podcast or at least read the Bitter End page that’s linked in the original article. It will all make more sense then.

    http://www.radiolab.org/blogs/radiolab-blog/2013/jan/15/bitter-end/

  • Andrew Dowling

    Bingo. People ignorantly ranted against the non-existent ‘death panels’ in the healthcare bill but end of life care is where a HUGE portion of healthcare dollars goes, most of it ultimately wasted as it prolongs a pain-filled or unconscious life for a few weeks or months. An advisory board that recommends public dollars go to treatments with proven effectiveness would be a positive thing, but people want to live in a make believe world where the U.S. stays out of debt but public Medicare dollars can pay for whatever procedure they want.

  • Susan_G1

    I’m glad that your father passed peacefully. I can’t comment on anything that might have been going on since I don’t know the situation.

    I have no doubt that people passed peacefully for untold thousands of years before IV fluids and narcotics. I also have no doubt that many suffered greatly.

    I am only saying that death can a be less traumatic event with medical help.


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