Treating the Patient Simply for the Benefit of the Family: Is that Ethical?
It is not unusual these days for family members to insist that the healthcare providers perform tests and prescribe treatments that may be inappropriate or medically futile but for which the family will feel more comfortable that “everything was done” to improve or preserve the life of their ill loved one. This type of family behavior, if their requests are followed, despite the action may be inappropriate for the patient’s condition or futile, is said to contribute to the unnecessary increased costs of medical care, particularly in end-stage illnesses. And following the requests ends up only benefiting the psychologic uncertainties and anxieties of the family but providing no benefit or occasionally even unnecessary risk or harm to the patient.
Yet, one could also say that physicians should not just be treating the patient but, in fact, are also treating the family and those around the patient who have great emotional and perhaps other interests with the patient. But is this global responsibility really what patient care is all about? Isn’t the responsibility of the bedside physician only for the patient? Well, no. One could argue that physicians do have responsibilities to society and to the community particularly if one considers communicable diseases, hazards to others or (and this might be controversial outside of some disaster) consideration regarding the allocation of scarce resources. Should the physician also have responsibilities to a narrower domain such as the patient’s family? Is there a point, perhaps in the terminally ill and dying patient, where benefit to the family will trump any possible harm or benefit for the patient? And should that attempt to benefit the family be carried out by the physician?
I have tried to put an example of this issue in the form of a scenario and my challenge to my visitors is to answer the question: What is the ethical and most appropriate yet beneficent way the physician in this scenario should respond to the family’s request?
The hospitalized patient is elderly and is in the process of dying from an incurable illness. The patient is now comatose, unresponsive and clearly in no distress. An order has been written by the physician for an intravenous morphine drip administered on a regular basis to keep the patient comfortable. The family, sitting at the bedside, observes a respiratory irregularity that concerns them that the patient is uncomfortable. They request that the nurse provide the patient with additional morphine to what has already been administered. The nurse who has been following and observing the patient finds nothing in the patient’s respiration or responses to warrant additional morphine. She tries to explain to the family the basis of her conclusion. The family disagrees.
The nurse is concerned that to administer the morphine now would not be appropriate care for the patient but would risk that the patient would die prematurely from the morphine dose. The nurse is concerned that she might be causing the patient’s death not for the comfort benefit of the patient but simply for the comfort of the family sitting at the bedside.
The nurse refuses to administer additional morphine and the family calls the doctor.
If you were the doctor receiving the call how would you respond? Again the question “Is it ethical for a physician to treat a patient simply for the benefit of the family?” ..Maurice.
Graphic: Drawing from Washington Irving Rip Van Winkle (Philadelphia: Henry Altemus Company , 1900) 149 modified by me using ArtRage3.
posted by Maurice Bernstein, M.D. @ 5:17:00 PM
13 comments
13 Comments:
While there are surely compelling arguments, in at least some circumstances, that it is ethical to treat a patient simply for the benefit of the family.
But doing this is almost certainly almost always illegal. Decisions for incapacitated patients are to be made (1) according to the patient's instructions, (2) if those are unavailable then according to the patient's wishes and preferences, (3) and if those are unavailable then according to the patient's best interests. Nowhere in the statutorily codified hierarchy is concern for the family.
Of course, if the patient had left written instructions that she wanted to prioritize her family's comfort over her own, then perhaps following the family over the patient's current preferences might be warranted.
Thaddeus Pope
medicalfutility.blogspot.com
Thaddeus, you wrote "Nowhere in the statutorily codified hierarchy is concern for the family." But surely, the profession of medicine involves attention and care by the physician for more than "statutorily codified hierarchy". There should also be a humanistic approach to the way medicine is practiced and that may include concern for people beyond the anatomic periphery of the patient. Isn't that a reasonable description of the scope of being a doctor? ..Maurice.
Although it is understandable why one would perform tests to ease the minds of family, many people simply do not have the same medical knowledge and education as compared to those in the medical profession to understand if these tests are necessary. Living in Ontario, Canada where medical testings are free, if not more or less subsidized, it would be very wasteful of the scarce resources which hospitals have. In terms of working for the 'greater good', those scarce resources could be used for other patients who are in legitimate need. In addition, tax payers would not be very happy if they realized the government was spending simply as an 'act' to ease people's minds. Not to mention the extra time it would take to administer these tests taking into account Canada's long wait times in hospitals even with serious conditions or injuries.
Maybe for the families; instead of requesting any sort of medical dosages (morphine in your example) where they may have no knowledge of the possible detrimental effects, there could be more emphasis on having multiple health care professionals observe and reassure the family that their requests are unnecessary. Doctors, nurses, and other health care professionals are still human, and mistakes can be made and symptoms may be overlooked. It is often advised to visit multiple doctors if you feel there is something wrong, and this situation shouldn't be any different.
I would give the morphine. I don't think an additional bolus dose would hasten death. I respect the family's understanding of the patient and wonder if we are missing something and there is discomfort that could be alleviated. And I do think it's ethical to treat the family. These are the people the patient chose to speak for her.
It's more common in my facility to have family members resist the use of medication when my staff thinks it's necessary to relieve symptoms. We can often, but not always, alleviate the family's concerns by listening and educating, but sometimes our patients die looking uncomfortable, and that's difficult for the staff.
I see the family as the unit of care. Autonomy is one principle of American medical ethics, but not the only one.
Jay, I am pleased that you brought up another component in the question of "who is being treated?" and that component is "the staff". The family is being discussed on this thread but we haven't yet talked about the medical staff that has been taking care of the seriously ill patient. Is it ethical to be treating the staff's emotional responses to their experience with the patient by directly treating the patient whether it was necessary or not in the patient's interest for that treatment? ..Maurice.
Maurice, your question implies that we always know with certainty what's in the patient's best interests. I don't think it's ethical to treat the patient in order to make my staff (or me) feel better. That's not usually the situation I'm dealing with, though - clinician's unexamined emotional responses driving care. I think my staff is witnessing suffering and that they believe alleviating suffering, especially physical suffering, with medication is always in the patient's best interests. So their emotional response is driven by what they see as a lack of attention to the patient's interests on the part of the family.
Jay, how would you, as the attending physician in my scenario, deal with the nurse's concern that what to her appears as "giving in" to the family's evaluation could lead to the death of the patient "on her watch" and could have been interpreted by herself or others as due to her act even if it wasn't? Would simply spending a few minutes on the phone with the nurse, listening, educating and being reassuring regarding the outcome if she administered the additional morphine be an effective and appropriate approach? If she refused, would you discharge her from this responsibility and try to find and assign the task to some other available and willing nurse or come in to the ward and administer the morphine yourself? However, you write "I would give the morphine. I don't think an additional bolus dose would hasten death. I respect the family's understanding of the patient and wonder if we are missing something and there is discomfort that could be alleviated." On the other hand, suppose the doctor came in and personally evaluated the patient. If in the opinion of the doctor the patient appears in no distress, should the doctor then sit down with the family to educate them about the current clinical status but refuse to follow their request for additional morphine? Or in a terminally ill patient situation, it is best to listen to the voices of the living rather than the clinical appearance of the dying? A bunch of perhaps controversial questions dealing with how the medical profession should look at the care of the patient and family near the end of life. ..Maurice.
Dr. B--
You say at the beginning of the thread (your first response on Dec 27) that "[the humanistic approach to medicine] may include concern for people beyond the anatomic periphery of the patient" [my emphasis]. Leave aside the oddly legalistic phrasing, I think that's a principle that needs to have major caveats attached to it. After all, such considerations used to drive decisions involving lying to patients about cancer diagnoses, as family members thought it cruel for their loved ones to know of a terminal diagnosis. So for me, concern for a patient's family members is definitely secondary.
Your hypothetical about the morphine drip is intriguing, although in my own experience the scenario is almost always reversed: you have a family that insists on their incurably terminally ill comatose loved one getting all possible care, including but not limited to intubation and ICU care, while the nurse is the one who's hot to accelerate a morphine drip. On the whole I'm sympathetic to the nurse's viewpoint, but not always: I just assisted another doc who ran a code of a patient where one of the nurses was ready to have the patient declared after five minutes of a "surprise" code in a guy who was old and sick but not terminally ill and not in a coma. As we continued the code she got progressively more irritated. "Do you want to look at his eyes?!" she said in a raised voice a few minutes later, "his pupils are fixed!" Well, yeah, lady, we've given him three amps of atropine since the code began. What did you think his eyes were going to look like? Just do your job and maybe the guy survives, maybe he doesn't...but now's not the time to be aggravated about his "full code" status.
So if anything, I see the bigger problem as unrealistic expectations on the part of families, with the casualty being nurses and doctors becoming jaded about end-of-life care. Most RNs I know would beg to feed more morphine to your hypothetical patient.
Billy, my scenario is based on a true ethics consultation case in which the nurse found no evidence whatsoever that the patient was in any distress and couldn't in good conscience and good nursing practice administer additional morphine. Nevertheless after the family phoned the doctor, the nursing supervisor arranged for the additional morphine to be administered. From an ethical point of view, the decision, in this case, is purely that of a medical decision which in the absence of a catastrophe triage, the final decision should be in the best interests of the patient. ..Maurice.
Mourice, terrific post and issue. I also worry that we cannot ethically be responsive to both the patient and family. Our primary responsibility is to the patient, following the standards you and others discuss.
The counter-argument is often that the family will be the ones left to live with the memories of their loved one's dying experience. Don't we have a greater responsibility to those who will remain?
Guy Micco, Patrice Villars, and I wrote about the potential negative consequences of this approach in a recent lancet perspective. Essentially, we're concerned that some patients may have a preference to consciously experience dying. "Snowing" patients to satisfy family members obliviates the possibility for subject experience at the end of life.
Alex, thanks for bringing up the other previously absent point in this discussion, the real possibility that the patient would rather have some degree of consciousness and awareness of the presence of those he or she loves prior to death. Intentionally preventing such awareness by narcosis regardless of whether the doctor or family initiated the action might not truly have been in the patient's own best interest. ..Maurice.
Dr. Michael Kirsch, a practicing gastroenterologist, presented on November 29,2009 his conflict dealing with patient and family comfort on his blog "MD Whistleblower" titled "The High Cost of Health Care: A Personal Confession" where he describes the possible alternatives of response when both the patient,even after education, and the family request that he perform a procedure which he considered unnecessary.
Dr. Kirsch writes: "Here were my options:
Return to the hospital for a family meeting
Refuse to do the procedure and see the patient on rounds the following morning
Resign from the case and request another consulting gastroenterologist to see her
Perform the procedure."
In this case, the procedure was a request of the patient but not necessarily for the patient's medical benefit but obviously, if performed, would provide comfort to the family that "everything was done" for their loved one even though unnecessary for the patient.
Read the article and return and express your comments. ..Maurice.
I have read all of the arguments as stated. However, from the nurses perspective I would have sat down and had an extensive conversation with the family about the patient, their expectations and the use of the drug. It is a nurse's responsibility to educate everyone involved with the patient not just the patient. In this scenario of a terminally ill patient who is actively dying the family may need education about the changes they will see with their family member, what to expect and then if they had any further concerns offer to contact a provider for them.
Many times these family members are dealing with their own fears and feelings of death and dying while their loved one is going through the process. As a result they project them on to the patient and ask for more than is required becasue they are scared that they have not done enough. Thereby addressing their fears and talking with them may alleviate many of these concerns.
Marie
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