Not Telling Bad News: An Ethical Dilemma
In my now inactive "Bioethics Discussion Pages", I presented a scenario which provides a true dilemma with regard to the telling of bad news to a patient. The conflict is between the ethics of a patient's culture and the law and ethics and standards of practice in the "American culture". The most recent responses by visitors to the "Pages" are at the top of the posting. What would be your response? ..Maurice.
Not Telling Bad News
The patient, Mrs. F., is a 66 year old female mother of 4 sons and 5 daughters, who was born in Italy and lived there until 2 years ago when she moved to a northern city in the USA to be closer to 7 of her children who are now residents in America and live not far from each other. The patient is now living with her eldest daughter. The patient’s husband died some 10 years ago. The patient speaks and understands some English but is not at all fluent.
In the past several months, the patient has developed abdominal pain, nausea and a 15-pound weight loss from her usual 150 pounds. She was taken to a physician, Dr. G., the private physician of her daughter. Dr. G. examined Mrs. F, ordered tests and finally requested a gastro-intestinal specialist consultation. With the understanding by Mrs. F. that some tests needed to be done to find out the cause of her pain, she accepted the tests. By these tests including a biopsy, Mrs. F was found to have an ulcer in the stomach that was a cancer. According to the gastroenterologist the cancer could be surgically removed but the patient needed a surgical consult to determine how much of the stomach needed to be removed.
Before Dr. G spoke to the patient, the elder daughter talked to him and requested the diagnosis. He told her about the suspected stomach cancer. She then insisted that he not tell her mother that she had a cancer. She said that in her Italian culture these serious matters belonged to the knowledge and decision of the family and that the patients were not told since they might be harmed by the information through emotional fright and worries and as a consequence might not try to get better. She said she and the rest of the family would be the ones to be informed about the prognosis and treatment and the family would decide and give informed consent for the treatments. She was very emphatic about this directive she gave the physician. Two other family members present at the time confirmed what their sister said. The physician told them that Mrs. F was no longer in Italy and that in this country it was ethically and even legally wrong not to tell the patient what she had and not to get her own informed consent for the surgery and subsequent treatments. After much discussion with the family, Dr. G. suggested he go and ask the patient how much she wanted to know about her illness and what needs to be done. The daughter and family refused for the doctor to speak to the patient about this matter since they feared their mother might infer a bad diagnosis.
What should Dr. G. or any other doctor responsible for this patient do?
---- THE DISCUSSIONS ----
Date: Fri, Jul 16, 2004 1:40 PM From: monicawiest@shaw.ca To: DoktorMo@aol.com
It is true that the context of practice is North America, not Italy. Consequently, the law and ethics that guide clinical practice here must be seriously considered. As such, we cannot forget the principles of patient autonomy, beneficence, disclosure, and consent: the patient has a right to information to make informed choices. The patient also has the right to forego information and I think that the doctor's responsibility is to delicately find out how much the patient wishes to know. Autonomy also means respecting and working with a patient's beliefs and culture as much as possible. Relating to beneficence, would telling the patient cause her more harm? Most commentators don't think so, but if they don't have the same point of reference as the patient, how do they know? It strikes me that the challenge is not what the doctor should do, but HOW she or he finds out what the patient wants. Hopefully this doctor was taught some communication skills. The children may be right and so be it, or they may be wrong and then patient can be informed.
Date: Sun, Aug 4, 2002 12:27 AM From: cody_carlson@msn.com To: DoktorMo@aol.com
At first glance there may seem to be a dilemna here for Dr. G. After a moments thought, however, any such dilemna proves illusory. Mrs. F is the patient, not her family. Dr. G is the physician, not Mrs. F's family. Mrs. F has rights to the information regarding her health. The physician has the right to inform his patient as well. I'm not sure that any mentally stable person would want to be ignorant about their illness. Though one may not want bad news, it's certainly better than no news.
Let us not forget the gravity of the term, "rights" in this context. How often do we confuse rights with sole privilages? Remember that our duties and responsibilities in addition to our privilages give us our rights. Our right to act is not always just something we have the choice of doing, but also duties we must perform and responsibilities we must be held accountable for.
Having to disregard family/cultural tradition may not be easy, but Dr. G's responsibility as a physician is clear.
Date: Tue, Jul 23, 2002 9:59 AM From: mstern777@yahoo.com To: DoktorMo@aol.com
The doctor has an ethical dilemma. Is his responsibility to the patient or to the family of the patient? I would answer that in this case it is to the patient, (sometimes families have bad intentions or are ignorant or both). His obligation is to inform the patient. His skill as doctor to do so in a kindly supportive and understanding way is now put to the test. This meeting may be had with the family present, if the patient wants that.
Ultimately we are all prisoner's of our culture. If it was an ethical requirement to treat people form a different culture in the same manner that they would be treated were they still in that culture well... you can imagine the doctor putting on the voodo feathers and killing a chicken because that the way it was done in the patients old country.
This particular patient is not described as mentally incapacitated in any way only having a language fluency problem. This can be over come with a translator or by bringing in a doctor fluent in Italian. Bad news is bad news and no amount of cover up will make it go away. I believe some studies have show that the not-knowing the sense that things are going badly but nobody is telling me what is going on is more stressful, ultimately, than knowing the bad news and moving on to dealing with it or making peace with the outcome.
Michael Stern
Date: Tue, Jul 2, 2002 8:48 PM From: r_l_eaves@icehouse.net To: DoktorMo@aol.com
Of course the doctor should tell the patient of the situation that she is in...he should have told her before he told her daughter...then there would be no dilemma to begin with!!!!
Date: Tue, Jul 2, 2002 1:44 PM From: JeriNrich@aol.com To: DoktorMo@aol.com
Under the umbrella of veracity and autonomy (self-determination)the patient must be told. There are precious few times that I could think of where the patient should be lied to. Throw in the concepts of least harm/ most good as well as cultural relativism serve to strengthen my resolve. Richard Cherrin
posted by Maurice Bernstein, M.D. @ 1:53:00 PM
6 comments
6 Comments:
I think I will be in the minority, but I have an interesting perspective.
I am a specialist in urologic oncology and consel half a dozen newly diagnosed cancer patients per week.
I also am an Italian-American born in Brooklyn, NY. I understand the mentality and it is different than any of your posters.
In the US we are all about informed consent and I practice this daily given every option for therapy, even ones that I woudlnt recommend. For example with prostate cancer I talk about all the different forms of surgery, radiation, watchful waiting, freezing the prostate, and heating it with ultrasound (not available in the US).
The mentality of the patient in question is: Doc, you do what is best. In our patient has to choose medical climate in the US, this doesnt make sense. But it is as simple as it sounds, the patient would want you to do what you think you should as a physician.
I would personally respect the families wishes and tell the patient there is something wrong with her and she needs an operation. If she asked, I would not lie to her, but I would only tell her the details as far as I had to.
If pressed by the patient I certainly would tell her all the information, but this patient is unlikely to want to know.
I found Dr. Savatta's comment very interesting, and it reinforces my belief that cultures vary greatly in this respect.
Personally, I would not only want to know the truth about my condition, I would also want to know the physician's professional assessment of any and all relevant prognostics, and I would want to follow the course of the disease with explanations of whatever test results were available.
However, my own opinion aside ... and even cultures aside, I believe that a physician might do well to include a question as part of the introductory first visit - which asks a patient how much much they would like to be told about their medical condition over the course of their care, and I feel that the physician should abide by their desires as far as he is able - perhaps occasionally updating the question at yearly physicals in case of a change of heart on the patient's part.
Some people will not want to know, and some people will. Those who want to know may only want basic information, and some may want a great deal more - including the clinical progression of a disease. Those who don't want to know may want their families to know instead ...
No shoe fits every foot. This isn't something there should be laws about, this should simply be common sense. "How much does this patient want to be told?"
When faced with a circumstance in which the patient hasn't had a chance to give some sort of a directive, then I would think that a unanimous family's (several individuals) desires should be followed ... like in the case of Dr. G.
I think ethics in any case is the physician's responsibility to do whatever is best for the patient - for some patients, the "best" is full knowledge, for others, a more general knowledge, and for yet others, a respect for what could be a personal inability to deal with the idea of a terminal illness.
Dr. Bernstein, I had to stretch myself a bit to answer this one, because anything less than complete disclosure would be very upsetting to me, personally. But I've known people who suffered tremendously, and needlessly, because of being given too much information, and I think that's conscienceless.
Knowledge is like administering the right dosage of a certain medication - it must be adjusted to the individual patient's needs.
By way of examining the consequences of the "she's not in Italy anymore" approach, how's this for a thought experiment:
How would you feel if you were the patient, and you were in Italy? Wouldn't you take offense at your doctors' telling your family of test results before (or instead) of you? What if they insisted on getting consent for surgery or other treatments from your children instead of you, posting on an Italian ethics blog, "He's not in America, you know. We have to do what is ethical in our culture."
Once thought of in these terms, the answer seems much clearer to me: after confirming the patient's cultural norm, follow it.
#1 Dinosaur, perhaps the problem lies in a cultural construct. It could well be that the conflict really exists within the United States because of our medical and ethical obsession with patient autonomy and our rampant legal use of malpractice actions to keep physicians on the straight and narrow and provide plenty of patient compensation for any harm that can be proven because of deviation. Could it be that in other countries, this cultural construct does not exist and physician's behavior regarding telling or not telling might be more flexible? If this is so, that patient grown up in the American culture might well remember, if possible, to communicate to that physician in Italy, for example, at the outset what that patient wants with regard to the "telling of bad news". It may also be wise to instruct family members the same. I think that in many cases, the management of a patient's illness requires the physician's understanding that he or she is dealing not only with the patient but also the family and the patient's cultural background. That means that at times physicians, despite their fears, must modify their patient management recognizing the patient's cultural norms. By the way, this issue is very much on the mind of medical educators currently, including the medical school where I participate. It is felt there should be a greater formal education of students regarding cultural differences amd improving the student's cultural competence. Programs are being developed to achieve this goal. ..Maurice.
Maurice: Regarding both of our comments, it seems to me that we are in complete aggreement. Either you are more eloquent than I, or I am more succinct than you. Or both.
R.K. sent me yesterday the following commentary on this thread. ..Maurice.
The physician was right in explaining to the family members his moral, ethical,
and legal responsibility to the patient. His responsibility does not end
there. It is not clear to me whether this patient has already given permission
for him to even discuss this matter with the family members. I can only assume
so at this point.
I also agree, to provide patient autonomy, Dr. G., must explain his
responsibility to her in a matter of fact way and to create expectations for
future communication and care of this patient. He will need a translator with
medical experience in translating to assure understanding to the extent the
patient is capable of understanding. Dr. G. should explain his ethical and
legal responsibility to her in our culture and that his goal is to allow Mrs. F.
autonomy in her health care, which can be done within the realm of her culture
if they come to an agreement— including the right to remain inactive in her own
care and treatment. The family stated concerns that should Mrs. F. be required
to participate in her own care, she may become fearful and refuse needed
treatment. Therefore, not to have this discussion and agreement with Mrs. F,
may create maleficience.
As Mrs. F., is capable of making her own decisions regarding her medical care,
legal constraints require that Mrs. F, must confirm the families insistence that
her best interests lie in remaining inactive in her medical care. She should
then be asked to sign a Power of Attorney or other appropriate legal document
allowing her family members to act wholly in her behalf in order to comply with
confidentiality requirements. Dr. G, can honor her wishes under the principles
of beneficience, nonmaleficience, veracity and autonomy.
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