Patient Autonomy: Where Should It Begin and End?
I have published threads here in the past for discussion of the ethical conflict between physician paternalism versus patient autonomy in medical decision-making.
Here is a brief vignette extracted from a book review article “Veatch Hates Hippocrates” by ethicist John D. Lantos in the January-February 2010 issue of the Hastings Center Report that sets the conflict rather clearly. Read it and then give us your view of the “good” and “bad” of this communication between a patient and her doctor. ..Maurice.
Doctor: “I notice that you are coughing, that you are using your intercostal muscles when you breathe and that you are breathing sixty times a minute. I don’t want to impose my values upon you. How do you value that state of being?”
Patient (gasping for air): “…can’t….breathe…”
Doctor: “Can’t breathe? Well for me that would be unpleasant, but I happen to value oxygenation. I wouldn’t want to impose those values on you. I could give you a little oxygen. Or I could give you morphine. Or I could give you a nebulizer treatment. Which would you prefer?”
Patient: “I just…want something that will make me feel …better…”
Doctor: “I want to help. Tell me… what does ‘better’ mean to you?”
posted by Maurice Bernstein, M.D. @ 11:23:00 AM
13 comments
13 Comments:
Frankly this sounds a bit ridiculous. I am all for some degree of patient participation in medical decisions that are not of life-threatening severity, but if I walk into a physician's office with this kind of problem that requires "on your feet" sort of clinical judgment, I would expect to sacrifice a bit of that autonomy in the name of potentially saving my life. Physicians have specialized training that allows them to make sound clinical judgments far beyond those of the typical patient, and if you don't trust that as a patient, then that devalues the relationship. The doc in your example should, of course, just make the clinical judgment that the patient needs immediate assistance with breathing and offer his or her best shot at fixing the problem. If the first thing doesn't do the trick, try the next option. There is a point at which a patient should realize the value in letting the physician's experience and training take over to their benefit. Sometimes it's better to be a little dependent than a lot dead.
medrecgal, you write "There is a point at which a patient should realize the value in letting the physician's experience and training take over to their benefit." My question to you would be "where exactly is that point?" Are there criteria which you could establish which would tell the patient "it's time to let the decision be up to the doctor" or to tell the doctor "don't proceed further without a full objective disclosure to the patient and allowing the patient to make the final decision on their own"? Though the presented vignette seems unrealistic, I am sure that there would be some patient advocates who would find the doctor's approach, if a bit excessive in terms of limiting professional opinion, nevertheless pointed in the right direction. ..Maurice.
Where that point is is dependent upon the situation. I would suggest it is difficult, if not impossible, to establish broad criteria that would apply across all possible situations. However, I can offer a few suggestions: (1) If your life is in immediate danger, it is probably wisest to let the physician's clinical experience take over; (2) If it is a type of situation where there isn't an immediate or severe threat to life, more leeway can be taken and there can be some degree of discussion involving patient, physician, and others as one or both parties deem appropriate. It is the sum difference between, for example, a patient who presents with the symptoms of an impending MI vs. a patient with chronic illnesses that need to be managed over the long term. In the first scenario, it is probably wisest in the name of your future existence to heed whatever advice is given by the physician (assuming it's something rational like "go to the ED"); in the second, there is no reason not to have thorough discussion of the various options available to treat such problems. I have personally seen both of these scenarios as a patient, and there is a place for both patient autonomy and physician paternalism in medical care.
Not all cases involve around potential immediate life and death
decisions versus chronic long term management decisions.
Let's look at a series of possible situations where some decision must be made and then consider to what extent the decision should be mainly directed by the doctor's evaluation and advice and what should be mainly directed by the patient's own evaluation of the situation.
1)A patient with no lung symptoms is advised by her physician to stop smoking.
2)A patient with shortness of breath, productive cough and easy fatigue is advised by her physician to stop smoking.
3) A patient has suffered a mild heart attack, was stabilized and was advised by her cardiologist,after explanation of her condition and her options and risks to have a coronary artery bypass operation but she was to decide between that surgery or the insertion of an arterial stent which is a possible alternative but not one the cardiologist recommends.
4) A 50 year old patient was found to have a small low grade prostate cancer, which might never cause the patient's death, however the urologist advised surgery though with possible resultant common complications. The other option would be radiation with complications or "watchful waiting" for evidence of progression of the cancer before initiating treatment. The patient was to decide after being educated about the illness and options.
In each of these cases, the physician advised the patient but to what extent should the patient's alternate own autonomous decision trump the physician's advice or in which should the physician's advice be simply followed? Can you explain your reasoning for each? ..Maurice.
Dr. Bernstein,
In all four instances you describe, the final decision is the patient's to make. Certainly the patient may choose to defer to the physician's recommendations, but the bottom line is the physician has no legal standing or authority to force a patient to undergo a treatment the patient decides against. Case in point - suppose the patient in situation #3 chooses not to have either bypass surgery or the stent procedure, but decides they want to try chelation therapy first. The physician may not agree, but the patient has the final decision. Their recourse is to either go along with the patient's decision, or remove themselves from the case and arrange transfer of care to another physician.
The job of the physician is to provide the patient with all the information they need to make a decision, including all treatment alternatives and the pros and cons of each. It's strictly the patient's prerogative to use that information to make their own decisions on what course of treatment to pursue based on their beliefs and values. It is, in my opinion, unethical for a physician to attempt to influence a patient based on the physician's own beliefs or values.
The patient's right of autonomy, is perhaps better described as their right of self determination. It's foundations are in the 1st, 4th, 5th, 9th & 14th amendments to the constitution. It is from this that the principle of informed consent has evolved, and both are well established in case law dating back to the early 1900's.
medrecgal,
You stated "there is a place for both patient autonomy and physician paternalism in medical care" - I respectfully disagree. Paternalism violates the constitutionally guaranteed rights of the patient. Certainly, if the patient tells the physician to "do what they think is best", that's fine, but it has to be the patient's decision. Unless/until they do, the physician is legally, and IMHO, morally and ethically bound to operate strictly under the rules in informed consent.
Hexanchus, don't you think that the physician has the professional duty to the patient to present the physician's advice, as part of the "information" you describe, regarding the decision which the doctor through experience and study would be, in the doctor's opinion, in the patient's best interest? Isn't this something the patient is paying for and something the patient expects? Of course, the patient does have the right and duty to make the final personal decision since what might be the doctor's opinion of "best interest" may not correspond to what the patient considers. ..Maurice.
Doctor Bernstein,
Yes, but with a qualification. The primary job of the physician is to provide the patient with unbiased information. Initially s/he should stick to the facts, ie: this is what we have found, this is what it might mean and these are all the possible courses of action and the pros and cons of each. Certainly the physician's advice and opinions are part of the process, but they should wait until the patient asks "What do you advise or recommend?" (which they almost always do) before giving them.
The physician must also disclose to the patient when their advice deviates from evidence based practice. For example, in your situation #4, the currently recommended evidence based recommendation is watchful waiting. Rushing to surgery for prostate cancer, unless the tumor is determined to be aggressive, while certainly an option the patient may want to consider, is not the current evidence based recommendation. From a statistical standpoint, the odds of suffering severe side effects of either surgery or radiation such as incontinence and impotence, are far greater than the odds of dying from prostate cancer. The patient needs to know this.
Hexanchus, but what if the patient fails to ask "what would you advice or recommend?" I would think that such advice in every case whether asked for or not is a function of the physician's responsibility as much as knowing how to take and interpret a history, knowing how to perform and interpret the results of a physical exam, knowing how to create a differential diagnosis and establishing a testing plan to come to a final diagnosis and, finally, to know the spectrum of treatment possibilities, including those which have been empirically tested in the past. To avoid presenting advise to any or all patients, whether the patient asks for it or not, is, in my opinion, unprofessional with regard to physician responsibility. The advice should be based on knowledge of the disease for that patient and treatment and knowledge of the psycho-social aspects of the patient's life. It should be devoid of personal secondary gain for the physician or the physician's own personal disfavors or favoritism. But it should be presented always. And then.. it's up to the patient, after full and fair education, to accept the advice or reject it. ..Maurice.
Dr. B.,
If the patient fails to ask, there ways to approach that, but IMHO it's better and more productive to elicit if the patient wants the physician's advice rather than shoving it on them. Depending on the circumstances, the patient may need some time to digest the information they've been given.
"We've discussed the various options, do you have any questions?"
"I've had considerable experience in this area, would you like my advice or recommendations?"
"I realize this is a lot of information all at once, and can be overwhelming. Maybe you'd like some time to think it over....then we can discuss it further."
Depending on the situation, a patient may feel unempowered and vulnerable. For some, trying to force advice or opinions on them may cause them to reject it out of hand as a simple defensive reaction in trying to regain some sort of control. As with many things, how you approach the situation can make all the difference.
Hexanchus, you made good points with regard to the patient's initial emotional reaction to a diagnosis or possible diagnoses particularly if some were unexpected. However, I think that most patients with illness go to the doctor expecting something more than a "workup" with no conclusion and no advice of any sort even after the initial visit. I am sure most patients will not accept the physician dumping possibilities into the patient's lap and then letting them stew over the information. I think, if my impression is correct, it would represent a professional disservice to the patient by ending the conversation with "go home and think about it" or "do you want me to tell you now my opinion?" I wonder, if to some patients this might sound like the doctor is unsure about the diagnosis or treatment approach but is afraid to admit to the patient that uncertainty and, well, is "procrastinating". Certainly, if the doctor is unsure, this should be explained promptly to the patient so that they can work together to find a satisfactory conclusion.
The current assumption by doctors, I am certain, is that patients want our ongoing evaluation and advice. Now, if my estimate of patient interest is wrong and that most patients want only the facts unless they ask for more, then doctors should revise their assumptions.
Finally, again, I want to re-emphasize that physician advice should always be devoid of personal values or personal interests and not to pressure the patient into making the physician's decision. One example of this would be a doctor whose moral view would be against abortions and yet for that same doctor not to include abortion as an option for the patient to consider would be paternalistic and unprofessional and not in keeping with patient autonomy.
Hexanchus, thanks for adding to this conversation. ..Maurice.
A visitor EMR wrote the following today. ..Maurice.
A doctors job is much more difficult than it seems.he has to speak of the disease candidly yet not make the patient uncomfortable or scared.Very useful discussion here.
This looked like a conversation between a doctor and a lawyer. I find the discussion helpful, but this would be more useful if there is some reference to legally acceptabed standards with respect to the issue of patient autonomy. It would help the doctors frame their assumptions in a better manner.
Patient autonomy with regard to medical decision making is legally universally accepted in the United States. However, physicians need not follow orders of patients which represent actions which would be against established standards of practice or are known to be ineffective. (For example, California state law has such limitations to patient requests.) ..Maurice.
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