Bioethics Discussion Blog: Some Thoughts about Medical Advice: Patient/Family vs Physicians

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Monday, November 07, 2005

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.

10 Comments:

At Tuesday, November 08, 2005 8:57:00 AM, Anonymous Bob koepp said...

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.

 
At Tuesday, November 08, 2005 2:56:00 PM, Blogger Maurice Bernstein, M.D. said...

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.

 
At Tuesday, November 08, 2005 4:40:00 PM, Anonymous Bob Koepp said...

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.

 
At Tuesday, November 08, 2005 6:08:00 PM, Blogger Maurice Bernstein, M.D. said...

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.

 
At Saturday, November 12, 2005 8:30:00 PM, Blogger Bernard W. Freedman, JD, MPH said...

Autonomy is a legal construct, which recognizes a right. It is based in the right of privacy. A right that restricts the federal government from usurping the right to dictate what we do with our own bodies. This applies uniformly, whether we are talking about not permitting physical intrusion: or what we do in our bedrooms, and a woman’s right to choose. With respect to medicine, it recognizes the right of any patient to refuse medical treatment, whether life sustaining or not. This right of privacy is a “liberty interest” as set forth in the US Constitution. It provides freedom to decide on the one hand and maintains the integrity of the medical profession in, similarly, recognizing the right of the physician to refuse to provide medical treatment

Autonomy should not be confused with the bioethical basis of beneficence, on the part of a physician, and respect for the dignity of person. This translates to the ethical duty to provide a risk/benefit analysis to the patient, or, in lieu of the patient, to a proxy or surrogate. There is no transfer of decision making authority to anyone, but rather, “substituted judge” of what the patient would decide if his or her wishes were expressed but for the incapacity of the patient. If the surrogate is unable to say what this is, then the duty to respect the patients changes to a best interest standard. For Daniel Foster, M.D.,to say that he knows better than the patient’s family is the long standing problem of paternalism. What I would do with one of my family members is irrelevant to the decision making authority of the patient who has his or her own cultural, ethnic, customs, an sense of morality> The physician has no better training in deciding what is right for them, as Justice Scalia described in Cruzan, (not that I am enamored with Scalia,) “ better than they are known to nine people picked at random from the Kansas City telephone directory.

So, I think Bob is right to say that bioethicists do contribute to the ambiguity of the question of autonomy. The job of the bioethicists is to bring the ethical basis for respect of the person to the foreground. Not to guide the decision one way or the other, but to bring to the surface the real wishes of the patient. In the most severe cases of refusal of life sustaining treatment, the law of an increasing number of states requires clear and convincing evidence of those wishes. Sometimes the patient wishes and the realities of what medicine has to offer are at variance. And, it is hard for a physician to give in to the patient’s needs and views, religious and otherwise.

 
At Saturday, November 12, 2005 10:22:00 PM, Blogger Maurice Bernstein, M.D. said...

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.

 
At Sunday, November 13, 2005 4:30:00 PM, Blogger Bernard W. Freedman, JD, MPH said...

Hello Maurice:

First point as to what response is appropriate if a patient or family asks the question: “What would you do if it was a member of your family…?” The answer should not, (I think ethically well founded), respond to the question directly. Firstly, because it is irrelevant, but more importantly, the question that is really being asked is: “I am desperate and confused and I want you to tell me, honestly and from your heart, the options I have available and the risks and ramifications of each option.” That is the question that should be answered – it seems to me. To look at it in another way, we must insure that the patient or the surrogate provides us with consent that is based upon all material medical factors and issues of quality of life. To participate in having a patient, and perhaps especially a surrogate, to try to circumvent the obligation of making a decision based on the reality of the patient’s condition, would be inconsistent with legal requirements and ethical obligations.

Moreover, the temptation for the physician is to, by invitation, fall back into the role of the paternalistic physician who will make all decisions for the uneducated and or overwrought patent or family. Rather, the physicians ethical duty is to encourage a full and fair review of all medical factors and to allow the patient or surrogate to consider their unique ethnic, racial, and religious views that have guided them and their loved ones all their lives.

As to the question of “clear and convincing evidence” standard – this is otherwise known as the burden of proof. The highest burden of proof in a criminal case, for example is beyond a reasonable doubt and to a moral certainty. In civil matters the highest level of burden of proof is clear and convincing evidence. The issue in Schiavo was who could say what Mrs. Schiavo’s wishes would be. Not what the husband wanted, but what Terri would say she wants if she could speak. So, the lower court had three or four hearings where evidence was put on in open court on who knew her wishes, and in the case of a patient in a PVS, what “degree” of proof, what “burden of proof” would be required to prove that ability to convey what Terri would say, but for her condition. It was determined that the degree of proof was the standard of “clear and convincing” evidence. (as opposed, for example, “by a preponderance” of evidence – more probable than not). The Court wrote a twenty-page opinion reviewing all the evidence and concluded that Michael Shiavo did have the knowledge and therefore could refuse life sustaining treatment, just as Terri could if she could speak, - just as Elizabeth Bouvia did when she spoke for herself and refused life sustaining treatment.(Elizabeth Bouvia, v. Superior Court of Los Angeles County, 179 Cal. App. 3d 1127).

The real legal issue in Schiavo, which was pitifully thrown into the public arena, was whether Terri Schiavo would be able to recover sufficient cognitive ability to say “for herself” what she wanted. In order to overturn the lower court’s ruling the parents would have to prove, But only by a preponderance of the evidence, that she could recover suffiecitly in order to be able to speak for herself. The parents failed to carry this burden. Here are some excerpts from the Court of Appeal decision:

“This is the fourth time that this court has reviewed an order from the guardianship court in this controversy…In Schiavo I, we affirmed the trial court's decision ordering Mrs. Schiavo's guardian to withdraw life-prolonging procedures. ..In so doing, we affirmed the trial court's rulings that (1) Mrs. Schiavo's medical condition was the type of end-stage condition that permits the withdrawal of life-prolonging procedures, (2) she did not have a reasonable medical probability of recovering capacity so that she could make her own decision to maintain or withdraw life-prolonging procedures, (3) the trial court had the authority to make such a decision when a conflict within the family prevented a qualified person from effectively exercising the responsibilities of a proxy, and (4) clear and convincing evidence at the time of trial supported a determination that Mrs. Schiavo would have chosen in February 2000 to withdraw the life-prolonging procedures…

…As to that issue--whether there was clear and convincing evidence to support the determination that Mrs. Schiavo would choose to withdraw the life-prolonging procedures--the motion for relief from judgment alleges evidence of a new treatment that could dramatically improve Mrs. Schiavo's condition and allow her to have cognitive function to the level of speech. In our last opinion we stated that the Schindlers had "presented no medical evidence suggesting that any new treatment could restore to Mrs. Schiavo a level of function within the cerebral cortex that would allow her to understand her perceptions of sight and sound or to communicate or respond cognitively to those perceptions… On remand, we permitted the parents to present evidence to establish by a preponderance of the evidence that the judgment was no longer equitable. We specifically held: To meet this burden, they must establish that new treatment offers sufficient promise of increased cognitive function in Mrs. Schiavo's cerebral cortex--significantly improving the quality of Mrs. Schiavo's life--so that she herself would elect to undergo this treatment and would reverse the prior decision to withdraw life-prolonging procedures… the parents presented little testimony. Dr. William Hammesfahr claimed that vasodilation therapy and hyberbaric therapy "could help her improve." He could not testify that any "specific function" would improve. He did not claim that he could restore her cognitive functions. He admitted that vasodilation therapy and hyberbaric therapy were intended to increase blood and oxygen supply to damaged brain tissue to facilitate repair of such tissue. These therapies cannot replace [**9] dead tissue…. The guardianship court determined that Mrs. Schiavo remained in a permanent vegetative state. The guardianship court concluded that there was no evidence of a treatment in existence that offered such promise of increased cognitive function in Mrs. Schiavo's cerebral cortex that she herself would elect to undergo it at this time.”

Finally, and I hope I am not boring you with such a lengthy explanation, the Supreme Court in Wendland has begun to break down this issue further as it may apply to the conscious but incompetent, non terminally ill, patient. Though the specific holding in this case only applies to conservators’ decisions, the court clearly raises this issue but ambiguously leaves a decision for another day. Again, the question is how and when to apply the “clear and convincing” burden of proof. It is here that, I believe, the next battle will be fought.
\
All the best, Bernard

 
At Sunday, November 13, 2005 11:17:00 PM, Blogger Maurice Bernstein, M.D. said...

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.

 
At Thursday, November 17, 2005 11:30:00 PM, Blogger Bernard W. Freedman, JD, MPH said...

Hello Maurice. Thank you for this discussion. If the risk is rare then it may not be material to the patient’s decision making. Thus, legally there would be no obligation to discuss, especially if there would be emotional scaring, as you say, and a risk of the patient refusing a much needed intervention. In cases where the information is very material to the appreciation of risk, if telling the patient would do harm then I think it is appropriate to tell the family but withhold from the patient.
I had a case of a 70-year-old man who was diagnosed with a GBM tumor. The surgeon told the patient that he was doing fine and would survive for many years. The surgeon than advised the family that he had 9 months to live. This troubled me. I decided to keep quiet unless the patient asked a direct question. If he asked, and really wanted to know, I felt he had a right to a truthful answer. A month later, in his living room at home he asked me a direct and straightforward question: Is my life expectancy shortened because of this tumor. I simply said yes – somewhat. Within minutes he picked up a knife and tried to drive it into his chest. I was able to stop him, and awkwardly backtracked and said his tumor might cause some shortening of his life but that there was no need to think that he could not live a good life. Both not telling him at all, and not answering his question truthfully were both lies, yet both were in his best interest considering his state of mind and the fact that the “truth” at that point was not “needed,” if I can put it that way, to make a medical decision. I am curious to get your perspective on this difficult dilemma. Thanks, Bernard

 
At Friday, November 18, 2005 12:24:00 PM, Blogger Maurice Bernstein, M.D. said...

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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