End-of-Life Medicine: Enormous Lack of Informed Consent

A few weeks ago I blogged about undisclosed risks of medical treatments. Undisclosed risks are common. They might be the norm. The situation would be even worse — in some sense, much worse — if doctors knew of these risks and failed to tell their patients. It was unclear if doctors knew of the undisclosed risks I wrote about.

Recently Tyler Cowen quoted a newspaper story about Israeli doctors giving birth control injections to Ethiopian women immigrants “without their knowledge or consent.” Every commenter thought this was repugnant.

The latest RadioLab podcast (“The Bitter End”) is about the dramatic difference between how doctors want to be treated when they are near death (they want no CPR, no ventilator, no dialysis, no surgery, no chemotherapy, no feeding tube, no antibiotics, nothing except pain medicine) and how the general public wants to be treated (most people want CPR, ventilator, dialysis, surgery, chemotherapy, feeding tube, antibiotics, and so on).

The RadioLab guys were puzzled by the difference.  Upon investigation, they learned that the big differences exist because all those medical procedures (except pain medicine) have much worse outcomes than the public is told. The doctors know about the bad outcomes. It is better to die, the doctors decide. Unless doctors have less tolerance for being in a vegetative state, having ribs broken, and so on than the rest of us, it is clear that most people agree to these procedures because of ignorance. They fail to know what actually happens because the people who know — doctors — fail to tell them.

In other words, a huge number of sick people are being treated without having given informed consent. Doctors are doing many things to the sick people that benefit the doctors without telling the sick people how bad those things are. If end-of-life doctors told the truth, they would have a lot less work.

The RadioLab podcast hints at the moral retardedness implied by this practice in an interview with a medical student, whom I assume was randomly chosen. Why aren’t people told the truth? the interviewer asks. “I don’t know how to communicate that effectively,” says the student. Then he communicates the truth quite effectively. Why don’t you say that? says the interviewer. People don’t want to hear that, says the student (changing his answer). They don’t want to, but they need to, says the interviewer. The student says it would be “presumptuous” to tell them the truth. Presumptuous. What universe is he in? The absurdities and pathetic justifications given by the medical student to rationalize his behavior suggest that the whole medical profession doesn’t understand there is a big problem.

The comments on the RadioLab podcast at the website also suggest that doctors fail to grasp there is a big problem. Many commenters are doctors. Some agree with the facts in the program. None expresses even discomfort with the situation. One commenter is Joseph Gallo, the Johns Hopkins medical school professor who runs the study that revealed the enormous difference between what doctors want and what the general public wants. “I second the sentiments about nurses being great,” wrote Gallo. “I would add that studies that have asked nurses about their end-of-life preferences have found similar desire to limit care.” The two sentences contradict each other. There is nothing “great” about anyone who sees this happening and does nothing.

17 Replies to “End-of-Life Medicine: Enormous Lack of Informed Consent”

  1. It would be nice if there was a free market in medicine, maybe doctors would have a better relationship with their patients then.

  2. The best article I’ve ever read on the topic:

    Yes, it’s most often the doctors. You don’t go to med school because you are a good communicator, you go there for good grades. Even when motivated to learn how to communicate, my personal “end-of-life and bad news communication” course in med school comprised of 60 minutes. I had a lecture on the staging and treatment of super-rare eye cancers, lasting 90 minutes. Talk about priorities.
    Of course, sometimes family members are dumb as hell. But that’s the minority of cases.

  3. How do you know if someone is in fact “end of life”?
    The fact is, that it is not as clear as many in the general public , and nurses, would like to think.
    There are people, who are alive and active, albeit with disabilities, who have been declared “end of life” for the last 25 years by various nurses and other health professionals. Would you like to be one of them, would you like to have supports limited?
    If it comes to their own children, are the doctors quick to withdraw all treatment?
    Also, many people change their minds entirely, once they are actually in this situation of needing major medical help. Often enough, those who thought they wanted to die suddenly don’t.
    I think this is very dangerous territory with lots of risks for rampant abuse of “the right to live”.
    How many people are being euthanized because the care providers have determined that it is the best thing to do, according to their own knowledge and beliefs. (This is important: Judgements, even when it comes to life, death, medical care, etc., are made within the confines of a few people’s knowledge, believes, and prejudices. Isn’t it nice to play God? Isn’t it nice to think of yourself as possessing the knowledge of the universe, being able to decide over life and death? How easy it is to say: “There is nothing one can do!” When, in effect, it would be more honest to state that “there is nothing I (and my colleagues) can do”.)
    Holland, a state that is famous for its pro-euthanasia laws, had a veritable holocaust of sick, old and disabled people (being killed without their consent), because it was so easy to do so and so publicly acceptable.
    In order to protect the lives of people in the system (medical/care) it is important to err on the side of “life”, even if it cuts into the profits of insurance companies. This question of cost, which is the real reason these discussions are being popularized (not because of human suffering), cannot be addressed by limiting our approach to health to the newest drug, surgery, or other traditional intervention. Of course, there is little money to be made by preventing disease and disability (which can never be eliminated, but can be reduced).
    However, I am not a supporter of always employing the most aggressive care.
    You are making a good point, that the benefits of treatment always have to be weighed against the risks. I am not in favour of pushing unwarranted risky treatments on patients, which would kill them faster than doing nothing, or which have no proven benefits. (This very common approach is very prevalent in medicine. Chemotherapy may be given, even though it does not improve outcomes and causes suffering. Statins and antidepressants are prescribe like candy, causing much harm,…. and the list goes on. How much “end of life” is being caused by medical intervention?)
    So much for my ramblings. As a health professional my opinions are not as clearly defined and a lot more variable, depending on the individual circumstances. And there is always the nagging in my mind, reminding me, that with all my training and years of experience, I know very little.
    So I choose to leave the decisions over life and death up to God, and do what I am supposed to be doing: to help.

    Seth: I disagree. I think life and death decisions should be made by the sick person (and their families) after they have been told the truth about the alternatives available.

  4. What do you mean by “moral retardedness”?

    Seth: The way they put what’s best for them (telling the truth makes their life slightly worse) above what’s best for the sick person in their care, who suffers considerably because they do not tell the truth.

  5. “I second the sentiments about nurses being great”

    He may just be patronizing them and hasn’t thought through the implications.

  6. I lost my father due to lung cancer two years ago (I do not live in the US). I have two related experiences:

    1) My father was at the hospital at the time of his death. When nurse understood that he was dying, she called the doctors and told us to leave the room. When we were leaving the room, I told the doctors not to do anything like CPR. However, when they left the room after my father’s death, they told me that they did CPR without giving him any pain. They probably had to do CPR due to some legal responsibilities. However, doing CPR in that case was nonsense: if his heart would start, it would stop in a short time again because his organs were all failing. Not doing CPR should be the default option for dying cancer patients.

    2) When my father was diagnosed with late stage lung cancer, he did not want to have chemotherapy. But all of his relatives (including me) insisted him to get chemo. I still regret that. Chemo has less than 1% chance to cure extensive lung cancer (probably much more less than 1%). The prolonged life expectancy for a few months is considered as success but that is just prolonged suffering. Chemotherapy is the single treatment that is proven to be ineffective for extensive lung cancer. I would prefer any other treatment than chemo if I am diagnosed with the same disease.

  7. A very close friend of mine recently died of cancer. He was 45, and not at all ready to die and he chose to do every single possible treatment. The odds for chemo lengthening life after a recurrence, after failing several previous rounds, were slim to none. No one was honest or direct about that with him, and I was alone in saying that. My fiend’s single greatest fear in life was suffocating, he had a sleep disorder as a child, and severe asthma, and the sensation of breathlessness caused panic for him. No one on his care team explained that a possible side effect of chemo was damage to the alveoli. Once he developed that damage and had to be on round the clock oxygen, no one said it was because of the chemo. It wasn’t until he finally was admitted to hospice less than two days before he died that someone explained that it was related to the chemo. He would never have done the last round, or even the second to last round of chemo is someone had explained that. In the end, he suffocated to death, and it was horrifying and painful for his mother and all of us to watch. I don’t think anyone had bad intentions, and neither he nor his family wanted to hear those truths. But had someone been brave enough to be truly honest, different decisions would have been made.

  8. Yes Rachael, this is sad, and what you said is right on.
    This man may have lived just as long or even longer doing nothing, with less pain and suffering. He may even have had a chance for alternative treatments, which may or may not have helped, but at least would not have made him even sicker or would have had less side effects.
    The statistics for some cancers state as much.
    I think doctors feel compelled to do “something” (they think it is expected of them), or else, they may want to “cover their butts” by doing what is being prescribed to them (by the professional watchdogs).

    Seth: I’m not talking about whether doctors “do something.” I am talking about who controls whether they do something — in particular, whether patients and their families are told the truth before they decide what to do. Lying to them is taking control away from them. Patients and their families are, in many many cases, not told the truth — by doctors. The treatment alternative is described as better than it actually is. I disagree that doctors are “compelled” to lie. I also disagree that doctors “cover their butts” by lying like this. Quite the opposite: I think they expose themselves to lawsuits based on lack of informed consent.

  9. I agree that patients (and their families, friends, etc.) need to be told the truth.
    I always try to do this myself. On the other hand, all these doctors often know is what they learned, in university, from their superiors, from their associations, from seminars (usually put on by someone who has something to sell).
    They may be some of the most brainwashed people out there, and sometime their patients are better informed than they are.
    It takes time and effort to look deeper into things, and it takes courage to swim against the current. Doctors ARE being punished for not complying with the main-stream.
    When it comes to lawsuits it usually matters if things were done according to currently accepted rules. If the rule is to prescribe statins for high cholesterol, then a doctor can get in trouble for not prescribing them, when the authorities think this is what should be done. If the person taking the statins gets diabetes and dementia from taking those statins years later (and all that comes with it), the doctors are usually safe, if they stuck to what is considered current practice. If you deviate from the norm, you may lose your license. I think it is like this in many professions.
    Millions of people are harmed all the time, because what is taught in schools and universities may be wrong or outdated, or the subject may have been omitted from the lessons altogether (there is only so much time). Later on these doctors get swamped with the usual propaganda and long hours at work, and other pressures, leaving little time to rebel or even question anything.
    I am not a friend of every doctor, but there are many with the best of intentions, who truly want the best for their patients.
    Do you always know the truth, Seth? I don’t! Doctors are NOT gods. They are NOT powerful and all-knowing.
    Do you always tell others the truth, Seth, even if it is uncomfortable, even if it is going to crush the other person?
    I think I am not worthy enough for this blog. I don’t seem to get it.
    I personally see the opposite problem a lot more often, the widespread withholding of treatments and supports for people who are considered doomed (by some professional and other Gods) anyway, why prolong life? They do not all have end-stage lung-cancer, they may have had a large stroke like Jill Bolte-Taylor or they may have been in a coma for 19 years (Polish guy), only to wake up after all this time to resume their lives. Of course, many people would have rather ended their “suffering” than giving them a chance.

    Seth: “When it comes to lawsuits it usually matters if things were done according to currently accepted rules.” Currently accepted rules include allowing people to give informed consent. They cannot give informed consent if they are not told the truth. Please give me one example where a doctor got in trouble for telling the truth.

    I am not talking about what doctors “prescribe” (meaning offer) — for example, whether they prescribe statins or not. I am talking about whether they tell the truth about what they offer — for example, whether they tell the truth about the consequences of taking statins.

    You blame “brainwashing” and “the usual propaganda” and “long hours at work” and “other pressures” (such as?) for why doctors fail to “rebel” or “question anything”. When a powerful person (the doctor) tells a less powerful person (the sick patient) the truth, it is not “rebelling” or “question[ing] anything.” It is common decency. Failing to tell the truth, failing to allow the sick person to make an informed choice of what is done to them, is lack of common decency, to put it mildly. Why you are making excuses for it puzzles me.

    “Do you always tell others the truth, Seth, even if it is uncomfortable?” When I am asked a question, I try to tell the truth as gently as possible. I figured that out in my twenties. I found it gets easier with practice. Nothing terrible happens. Most people — maybe even everyone — appreciates being gently told the truth. You seem unaware of this.

  10. I should let you know that my own father was revived three times between the ages of 25 and 50. Then he ended up in a come in a cardiac ICU at age 73. My mother insisted that he gets maximum treatment. She insisted that my father wants to live, at all costs. She got the usual talk from the doctors, stating the complexity of the circumstances, the questionable outcomes of the treatments, and the unlikely recovery of my father. But, accepting the wishes of my mother, and presumably my father, the doctors gave it all they could. The nurses, however, pressured my other to “let go”, to accept the “inevitable”.
    To make a long story short, my father recovered. He is continuing his life.
    He is still needed. Thank God nobody turned off the ventilator and refused to revive him.

    Seth: I’m puzzled that you are changing the subject. The subject is: Doctors routinely fail to tell sick people the full truth about the treatments they offer.

  11. But that is not all you were writing about. you were writing about all kinds of different things, and your examples were all over the place.
    So, enough of it, we overlap somewhere in the middle, like the two circles in math class, and then we have the rest of our respective circles (of opinions and beliefs), which do not match. That’s fine!

    I wish you well! May the world become a better place for you and others. I am all for it!

  12. This post reminds me of the other great nexus where sex, violence, pain, lack of medical ethics, and lack of informed consent all meet: circumcision. I am referring to routine infant circumcision of male newborns, as currently practiced in the US. Do doctors (male and female) circumcise their sons? At what rate compared to the overall population? An even more interesting question: do intact (i.e. uncircumcised) male doctors circumcise their sons?

    Seth: I don’t know of any data suggesting that doctors and everyone else differ greatly on circumcision rate.

  13. Seth, this is a very intriguing discussion. Why do doctors want something different for themselves than what they suggest to their patients? Of course, the patient needs to be offered all options, but it seems somehow unfair that those ‘in the know’ don’t tell the whole truth about what those options involve in terms of quality of life. I think there may be some truth that most hospital doctors have to answer to someone higher up.

    I have actually heard of a doctor giving the mostly unvarnished truth, and he was a consulting specialist (so, essentially, self-employed). The story is pretty sad, involving a friend of mine whose small child (2 y.o.) had an aggressive genetic cancer which was diagnosed at an advanced stage. The specialist said, when asked what he would do if it was his child, “nothing, just pain relief”. That’s not what they ended up doing, but they appreciated the honesty (and, later agreed that this would have been a kinder tactic).

    I think it’s a good, honest tactic for doctors to say ‘this is what I’d do if it was me/ my child/my husband’. They are the ones that should know, after all.

  14. I once had a political science professor sum this up. He said that we all need to make an important decision: who’s on tap and who’s on top? He was of a mind that the individual is always on top and the experts are always on tap. Of course, if you get fed a raft on well or ill-intentioned half-truths about end of life issues it is impossible to make that on top decision. I prefer to be told the truth and the odds so that I can make the decision. We must not abdicate this duty to remain responsible to ourselves even if we might make a mistake.

  15. A “living will” signed by a patient can be revoked at any time by the patient by
    law! And unfortunately also (under threat of a law suit) by family members against the patient’s will in most acute care places, if the patient is unable. I am a retired health care worker. In my advanced health care/POA for health care I have left specific instructions, including up to three months with treatment except a surgically implanted feeding device, among other things.

    All hospitals, by federal law, have ethics committees that can be accessed by
    physicians, nurses, and a group of family members if any of them wishes- if they have any issues in this regard.

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