Some Thoughts about Medical Advice: Patient/Family vs Physicians
Here are some ruminations on this subject by a member of the President’s Bioethics Committee. It comes from the transcript of
Session 6: Bioethical Issues of Aging II: The Wisdom of Advance Directives Friday, April 2, 2004 and was spoken by Member Daniel Foster, M.D., John Denis McGarry, Ph.D. Distinguished Chair in Diabetes and Metabolic Research, University of Texas Southwestern Medical School.
Let me just say one other thing very quickly, and I don't want to sound self-serving about a profession and so forth, but the courts have clearly held that families and patients cannot require a physician to do or not to do any things. These are advice. I mean, we're not obligated for an 85 year old person to do chemotherapy. The courts have made that clear.
There is a second issue of judgment that the physician may have. The late Franz Ingelfinger, who was the long time editor of the New England Journal of Medicine, himself a gastroenterologist who worked on the esophagus developed esophageal cancer. And he wrote an article in the New England Journal of Medicine called "Arrogance." This was a time of the peak of autonomy for patients. Women would be squatting over mirrors to try to see if they could do their own pelvic examinations and see if they could just see — because they had the autonomy for their own health.
Because he was probably the most famous physician in the world, the editor of the New England Journal of Medicine usually is in terms of name, he received advice from all over the world telling him radiation first, surgery this, that and the other. And finally someone told him, he says "Franz, what you need is a doctor." And so he chose an internist and said, "I put myself in your care." And afterwards he said it was like a huge burden off of his life. He got back to editing the New England Journal of Medicine. And, by the way, his two children were doctors and so forth and so on. And he wanted somebody who was competent who cared for him to make the decisions should we do this or should we not do that.
Now, one could say that's a very arrogant position to say that maybe the physician would be the best person to make a choice as to whether this was good or helpful or not. And I'm not defending that at all. But I think that most physicians — I don't have statistics. But I think that many physicians will always want to do what they would do for their own family. That's a question that's asked us all the time; if this was your wife or this was your mother, what would you do. And when one answers under those circumstances, almost always in my experience the family will go with the judgment of the physician which is there. Because you try to explain what the downsides are, what the upsides are, what a treatment that might add two months, you know, but makes one sick is usually not — there might be circumstances where you would do that if somebody didn't have time to make a will or something. I mean, I've done that. Do a treatment that might be give me two or three months because of some critical issue in the family.
So I do think that there's been an arrogance about doctors who think they're gods, you know. But on the other hand, we probably do have a better sense of what should be done than the family does.
When my own father died of lung cancer—he wasn't a smoker, he just had an endocarcinoma — he had not wanted anything. He just had an IV glucose, just a glucose to keep open so they could give, you know, if he needed anything to do. And his granddaughter came in there and began screaming that when that was taken out of the arm. It was just giving fluids. She began to scream, "They're killing grandpa." It was not killing grandpa, I mean it was just glucose and water going in there. He had no need for it. And we just took it out.
So, anyway, I think that there is sense where the physician should have, you know, at least advice in these things and maybe more than that. I don't know.
It’s all about who should be giving the advice to whom and which advice should trump the other. Any suggestions? ..Maurice.
posted by Maurice Bernstein, M.D. @ 10:09:00 PM
7 comments
7 Comments:
So... how is the patient transferring decision-making authority to a trusted expert at odds with the exercise of patient autonomy? In addition to promoting clear thinking about ethics, perhaps we should be promoting clear use of language.
Bob, "clear use of language" is always a priority to promote understanding and suppress ambiguity. Autonomous transfer of decision-making authority is no ethical "prob--lemm". For those interested, in California, we have a law that allows awake and alert patients who have the capacity to make their own medical decisions to, if they desire, turn the authority to a selected person to receive the medical information and to make medical decisions for that patient. This law is particularly valuable in cases where cultural practices demand that the patient not be informed, particularly of bad news, and that medical decision-making is done by others, family or community members. ..Maurice.
Maurice -
I was objecting to the way it was suggested that placing a great deal of weight on patient autonomy is somehow in tension with recognizing the expertise of medical professionals, and deferring to their opions on relevant matters. NOT being allowed to defer to others would, indeed, conflict with respect for autonomy.
The problem here is that the term 'autonomy' has been so misused (I think bioethicists bear much of the blame) that it has become almost synonymous with 'willfulness' in the minds of many people. This is very unfortunate. It means that an idea very important for ethical discourse is not well understood, and very likely leading people toward erroneous judgments.
Bob, I understand what you mean and I fully agree. Autonomy is the ethical principle which would consider the right of an individual to make their own personal decision directly or the right to accept the opinion or transfer authority for decision-making to others. I understand your concern that to some autonomy only represents the patient's personal requests along with the associated non-acceptance of the views of others. That view would suggest "willfulness".
I described the California law because it contrasts with the ethic and legal view about autonomy in many jurisdictions which directs informed consent only to the patient affected when the patient has the capacity and ignores the aspect of autonomy which includes the right of this patient to accept the informed decision by another. Bob, I hope you find we are both on the same side of this issue. ..Maurice.
Thank you Bernard for a very well written commentary. However, I do have a couple of points which I wonder if you can clarify.
One is: It is not uncommon for a patient to ask the physician the question "what would you advise in the case of one of your family members?" So what is the patient actually asking or requesting from the physician? Should the physician try to respond or just explain that his views, values and goals are different from the patient (though often the physician doesn't even know the patient's values and goals)and that the patient should make their own decision without the physician's personal advice?
The other point is about "clear and convincing evidence". What do you think this requirement really means? As I understood the Florida law in the Schiavo case, the criterion for termination of life support was for such
clear and convincing evidence. Yet the surrogate decision by the husband was accepted by the courts despite the fact there was no written specific request by the patient when she had the capacity for decision-making detailing what she would want or not want if she were in a permanent vegetative state.
Thanks for any help on these issues by you or any of my other visitors. ..Maurice.
Bernard, again thanks for continuing our discussion. With regard to a patient asking me “What would you do if it was a member of your family…?”, first of all this has been a very rare experience, for whatever reason, in my personal practice, believe it or not. Though as I noted previously, from what I understand, generally it is not an uncommon request.
I can't truthfully recall what I have said to the patient but I know I wouldn't have answered the question directly. I am sure previously I would have provided all the benefits and risk information to the patient which I suspected the patient might need to make an informed decision. So to the question, I would probably have said something to the effect "It seems that you are having a difficult time coming to a decision based on what I have told you. Is there anything more information I can give you which would help?" I agree that I know to a variable extent my family's goals and values and I most likely would not know clearly those of my patient, so how could I honestly answer directly the patient's question? I can't.
The other issue of informing the patient, which if desired we can continue here or have this as a separate posting, is the matter of whether there are boundaries regarding particularly the risks to be presented to the patient when discussing a treatment. Should there be any set boundaries such as avoiding to disclose
extremely rare severe complications such as death when statistically there is overwhelming evidence of benefit without significant harm. Would a physician be doing a disservice to a particularly medically unsophisticated patient by in any way mentioning this complication even in terms of actual known statistics? Where does caution to avoid uninformed consent trump being non-beneficent and non-therapeutic by scaring the patient out of a needed therapy or procedure? Any thoughts? ..Maurice.
Often the request to the physician from the patient in the form "How much longer do I have to live?" is not solely to make medical decisions but to make family or financial decisions or for "peace of mind" vs whatever is the opposite. So when the patient ask the question, the physician's response is not to give a 6 month, 9 month or beyond estimate but to spend a few minutes discussing the reason why the patient wants to know. This will help the doctor to frame his/her response to the patient's request. The answer, we instruct our medical students to give, is that physicians don't have the power of foreknowledge to give an answer to that question except, if available, statistics in the literature can be given. When given statistic from the literature, the patient should be informed that these are only statistics and cannot represent what might occur to this specific patient. The patient may live shorter or even longer than the statistics describe. Usually patients accept the documented statistics and realize that the physician has no crystal ball nor is God, and will be satisfied with this honest answer. Knowing the reasons behind the patient asking the question now provides the physician the basis for further communication with the patient on how he or she plans to manage their concerns in the remaining lifetime. And this can allow the potential of further discussion to be more therapeutic. Bernsrd, I hope this anwsers your question. ..Maurice.
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