Kenneth W. Goodman, PhD
Ethical challenges or dilemmas may arise at any time during medical practice. You might even face several ethical issues during the care of a single patient. Some major ethical dilemmas may involve life-or-death issues, whereas others involve small instant decisions that weigh on your conscience.
These unheralded daily decisions ultimately define you as a person and illuminate your standards and stances toward patient care and the role of a devoted physician.
Look at this patient-care case, which involves several ethical decisions; then, take the self-test at various points. See how your responses compare to those of your colleagues, and look more deeply into the reasons why you chose as you did.
Situation: The Case of Anne R.
Your longtime patient, Anne R., is a relatively frail, 85-year-old woman who has lived more or less successfully at home since her retirement 20 years ago. Paul, her husband of 47 years, died 10 years ago. In many respects, she is still mourning his loss. Her life is generally solitary, inactive, and boring.
Anne has 2 daughters who live with their families in Houston and Toronto, both 3-hour plane rides away. They try to visit for holidays, and each daughter attempts to arrange to have her visit at least once a year. They seem to be a dedicated and loving family, albeit separated by nontrivial distance. However, Anne is increasingly reluctant to travel.
Anne has several maladies that you have been managing: atrial fibrillation; an arteriovenous malformation that causes occasional, and sometimes severe, gastrointestinal bleeding; chronic obstructive pulmonary disease; and osteoporosis. She has fallen twice but suffered only minor bruises.
Nine years ago, you partly convinced Anne of the importance of advance directives, although she winced and turned away when you raised the issue. In a designation of surrogate, she named both her daughters to make decisions for her if she became unable to do so, but she also declined to complete a living will. “I can’t think about that right now,” she said.
One night at 11:50, you receive a call from a hospitalist at General Medical Center, where you have privileges. Anne apparently had begun to feel very poorly and called 911. A workup in the emergency department showed atrial fibrillation. She is currently stable but uncomfortable. Her daughters do not yet know of this episode. You need to decide what to do.
What Should You Do?
Decision Point: Should You Go to the Hospital to See Anne?
Pro: You know Anne better than the doctors at the hospital do, and she is frightened and alone, with several comorbidities. You know it would be supportive and helpful to go, and you might be able to provide some information or help in some way.
Con: It is late and you’re tired. You tell yourself that your presence would add very little. Anne could be transferred to the floor or admitted to the critical care unit, in the capable hands of others, until tomorrow.
Would you go to the hospital?
|In a very narrow view of doctoring, there is no medical need for you to go to the hospital. This patient in this case is not likely to die or experience any additional morbidity because you chose to stay home. But such a view of what it means to be a physician is not merely practical or strategic; it raises diverse issues for medical ethics and medical professionalism.
If you reject the notion that physicians are replaceable technicians — your answer suggests that you do — then you are probably aware that it is not merely scientific know-how that you bring to the bedside. You bring a detailed medical history, an awareness of how your patient lives, and a foundation of trust. In other words, you have a relationship with the patient. By going to the hospital, you are keeping your end of the bargain. You are caring, as well as curing (or trying to cure), your patient.
Moreover, the foundations of medical ethics and professionalism make clear that good doctors are self-effacing. They promote their patients’ interests ahead of their own. Patients need physicians for more than medical knowledge and competence. They need them as guides, sources of customized advice, and homes for caring and compassion. After all, your patient is sick, and she is scared. If someone else could hold up your end, fine. But in this case, only you can.
Note also that it was a colleague who called, not the patient, who might not even know of the call. The hospitalist’s call was a kind of courtesy “heads-up,” probably engendered in part by concern for the patient.
Your arrival at the hospital signals the kind of physician you are — and how lucky your patients are for it.
Would you wait until the next morning?
|You aren’t a social worker, babysitter, or hand-wringing relative. You have many patients who would like you to be available at midnight, but they do not call or have hospitalists to call for them. Surely you cannot be expected to get dressed and go to the hospital every time you get a nighttime call, especially given current reimbursement levels.
Indeed, why did this hospitalist call in the middle of the night? Surely he could do all that was necessary for the treatment of the patient (or had access to others who could). He should just take care of this patient, and in any event, you will go there in the morning.
You became a physician to provide medical care, not to hold hands. Your medical utility in the current situation is limited.
You are impatient with do-gooders who somehow have come to think of physicians as servants. It is late, you are not dressed to go out, and you are tired. How does your patient’s condition confer any kind of obligation to be so inconvenienced?
Your Ethical Dilemma Continues
Anne should probably be cardioverted, but this presents a small risk for stroke. You recommend the cardioversion and mention the stroke risk. Anne asks you to do whatever you think is best, so you order the procedure.
Normally, you would start prophylaxis against stroke with an anticoagulant, but Anne’s arteriovenous malformation puts her at higher-than-normal risk for blood loss. You therefore decide against use of warfarin (or anything similar). You do not mention this to her, reasoning that she has already placed herself in your hands.
The cardioversion is successful, and at an office visit 1 week after Anne is discharged from the hospital, you broach the topic of implanting a pacemaker/defibrillator. She is very anxious and reluctant to undergo the procedure. You explain how the device works and how it is implanted. She is worried about the risks of the procedure; you are worried about the risks of not doing it.
There is a long-standing debate about whether physicians should discuss statistics with patients. Some prefer to make recommendations in the context of a trusting relationship. Others might cite the literature and ask the patient to make a decision. It is significant that every option poses risks, and these risks often need to be weighed against each other, not against a baseline or gold standard. Moreover, risks vary from patient to patient and — perhaps most important — can be very difficult to measure or determine.
Decision Point: How Do You Continue the Informed Consent Process?
Pro: Informed consent is not a courtesy, nicety, or risk-management stratagem. A foundation of medical ethics, the valid consent process requires that patients be given adequate information and have the capacity to understand and appreciate the information and make a voluntary decision. There is evidence to support the practice of robust communication: It leads to improved trust and better adherence to treatment regimens, for instance.
Con: The patient has already asked you to use your judgment. You believe you know what is best for her. There is no point in standing on ceremony, especially when it seems she simply does not want to hear at least some of what you might have to say. In any case, she is not incompetent, and no one is forcing her to accept the pacemaker/defibrillator.
Would you strongly recommend the defibrillator and mention but deemphasize the risks?
|There is nothing wrong with a physician making a recommendation — even a strong recommendation — if it is evidence-based and in the patient’s best interest. But no procedure is without risks, and there is broad agreement that patients should understand and appreciate the most significant ones.
It is often a challenge to determine how much information a patient can understand and appreciate, and it requires careful judgment by a physician. However, deemphasizing risks might be a corner-cutting measure that increases the chance that a patient might be harmed without understanding why.
Put differently, informed consent requires that patients or surrogates have enough information to make a reasoned decision. It is true that “enough information” is vague and provides little guidance. However, the information needs of decision-makers vary with their education and emotional state, the facts of the case and its complexity, and other factors.
Moreover, that a patient disagrees with a physician does not make her wrong or incompetent or unreasonable. Any such disagreement should be managed with more information, not less.
To be sure, there are circumstances in which patients delegate or try to delegate all decisions to their physicians or family members. Although one can attempt to honor such requests, doing so raises additional challenges related to the accuracy of the surrogate’s communication of patient values.
Would you be completely neutral, make no recommendation, and strongly encourage Anne to seek her daughters’ advice?
|Complete neutrality is good for football referees, journal editors, and news reporters. It is not a virtue for physicians.
Nothing about informed consent entails that physicians should keep their mouths shut. Reasonable patients value their doctors’ advice. It can sometimes be a good idea to include family members in the decision-making process; some patients should be encouraged to consult trusted kin. But knowledgeable physicians should not be shy about making solid recommendations — being mindful, of course, that a patient might choose otherwise.
This is an important point about informed consent. The consent process demands much from physicians and other clinicians. At the end of the day, however, the process is hollow and useless if a patient or surrogate does not have the right to refuse treatment.
Worse still is the physician who views him- or herself as a mere technician, competent in the skills of the profession but unable or unwilling to help patients sort through detailed evidence and arrive at a conclusion. Most patients want recommendations. They should get them.
Would you lay out the pros and cons equally and leave the decision to her, and if she doesn’t make a decision, remind her in 2 months?
|Medical pros and cons are rarely of equal status, but when they are, it is permissible to present them equally. Unless a delay introduces additional or greater risks, it can also be reasonable to wait, watchfully. A firmly held medical opinion, however, is a valuable commodity; in general, it should be shared (perhaps gently, and without being overbearing) as a key part of the informed consent process.
It is sometimes thought that patient “autonomy” requires that all reasonable alternatives be presented equally, leaving patients to sort them out. But this view of autonomy confuses the right to self-determination with restaurant-menu-style decision-making. Patients should not be pressured or forced, but this does not entail a laissez-faire stance toward selecting among medical alternatives when one is preferred.
If it is medically acceptable to wait, then it can be good practice to revisit the issue in a set period.
Your Patient’s Situation Worsens
Anne’s living arrangements also pose some challenges. Because she lives alone, you’re concerned about her getting help if she needs it. You ask her whether she has considered moving to an assisted living facility (“There is no way you’re putting me in a nursing home with all those old people!”) or moving in with one of her daughters (“I couldn’t bear to be such a burden at my age”). You have now spent 20 minutes with her and are running far behind schedule.
Frustrated and a little annoyed, you ask her to call you in 2 weeks and recommend that she get an emergency medical alert bracelet. You also instruct one of your staff members to phone her in 1 week. At that time, she is fine and very grateful for the call; she keeps your aide on the phone for 10 minutes, chatting about the events of her day.
Three days later, at about 5 PM, you receive a call from a hospitalist at General Medical Center. Anne has had a severe myocardial infarction. She was found on her doorstep, apparently while picking up the daily newspaper. An untrained neighbor attempted cardiopulmonary resuscitation, and another summoned emergency medical services. She was resuscitated after 10-12 minutes of hypoxia/anoxia.
You arrive at the hospital a few hours later. Anne is in the intensive care unit (ICU). She is on a ventilator and receiving a variety of medications. She broke her hip during the fall and is also receiving opiate analgesia. A neurology consultation has been requested.
A social worker had seen that Anne’s daughters are named as surrogates; they were contacted, and both arrive the next morning. You meet them in an ICU conference room. The consultant had determined that Anne’s neurologic prognosis is bleak and that she is at best in a minimally conscious state. Her daughters are distraught. Both recall little about any conversations with her about end-of-life care, but one shared memory included Anne saying that she would not want to “live on tubes.”
One daughter wants her to continue to receive full support. The other says she is ready for all nonpalliative treatment to cease and for her mother to die.
Decision Point: Do You Continue to Monitor the Patient and Work With the Family?
Pro: Of course. She is no less your patient now than before her myocardial infarction, and she will be your patient until she dies. Indeed, until a decision is made to terminate treatment, someone is needed to manage her treatments. Communication with family members continues to be an obligation of the professional physician.
Con: There is nothing more of substance for you to contribute medically. The daughters’ disagreement puts you in a tight spot, and until they sort it out, there is nothing for you to offer. What is wanted now is some sort of end-of-life counseling, not competent medical treatment. Someone else needs to take over.
Would you accede to one daughter’s wish to continue full support?
|You have several options when patients or family members request treatment that you believe is unreasonable. First among these is to find out why. What are their hopes and expectations? Do they accept the diagnosis and prognosis? If not, why not?
The daughters now have a duty to make decisions for their mother — to consent to or refuse medical treatment. There is broad and uncontroversial agreement that surrogates have the power to direct another’s care and, as important, they are required to direct that care as the patient would if she could communicate. That is, surrogates must not express their wishes; they must express the patient’s.
For these reasons, it is not yet a matter of acceding to the request for full treatment. It is a matter of helping the daughters work through the complexities of their mother’s impending death.
Would you oppose life support and strongly recommend, if not insist on, hospice?
|If the diagnosis and prognosis are accurate, then hospice is the right way to go. However, it is not unreasonable for the surrogates to need some time to come to terms with their mother’s forthcoming death. Recommending hospice is better than insisting on it.
Moreover, this provides an opportunity to make clear both that the patient will die, come what may, and that hospice will provide the most comfortable passing. The daughters’ divided opinions in this case are an additional challenge. Remember that the patient appointed both as equal surrogates; this has proved to be a complication.
Remember also that their duty is to consent only to treatments that their mother would want if she could communicate, and there is at least some reason to believe she would not value aggressive treatment given the prognosis. This is not a credible opportunity for the physician to impose his or her beliefs or values on grieving family. The physician’s job is to make clear that there is nothing medicine can do to restore her, not to judge that there is no value in the life she has now.
The cost of care should rarely, if ever, be invoked in such cases. The physician’s job is to practice high-quality medicine, not provide financial advice. One exception might occur when the costs of caring for one patient impede care of another. On a daily basis and in most ordinary circumstances, this is rare.
Would you urge the daughters to reach an agreement?
|The daughters must speak for their mother. That they disagree is meaningful only if they disagree about what their mother would want. If they simply disagree with each other about what each wants for their mother, that disagreement carries no ethical weight. It is about the patient and what she would want.
Because there is some evidence that the mother — indeed, any reasonable person — would not like to be maintained in an unconscious state until death, there is an opportunity to provide gentle advice in that direction. The daughters need to hear that nothing more can be done medically except to provide a pain-free death. Done right, that is an opportunity, not a problem. Good doctors will make the time needed to advise and counsel.
The model of shared decision-making is always superior to alternatives; ideally, it provides a sound medical opinion, careful communication, and a decision that everyone can support.
Would you call the hospital lawyer or ethics committee?
|Seeking legal advice is a good idea only if one actually needs legal advice. That is not the case here. Most US jurisdictions provide clear guidance in cases such as this: Work with the surrogates.
Although this patient’s case involves several challenging ethical issues, the hospital lawyer is not the one to ask for guidance. Asking the institutional ethics committee to weigh in might be an option if there is either (1) confusion, ignorance, or disagreement about the ethical issues on the table or (2) a need for mediation. Ethics committees should be competent to provide both. Make sure that the hospitals at which you practice have a functioning ethics committee or other ethics resource; if they do not, they are falling behind in meeting the established standard. The physician should not be seeking an ally in a lawyer or ethics committee to win over or bully patients or family members into agreement.
Physicians constantly encounter situations that require difficult choices. Small variations in the facts can alter the decisions they would make from one patient to another. Sometimes doctors are satisfied with their decisions and the outcome; other times, they wish they could go back and do things differently.
Yet, even when the outcome is or seems to be less than satisfactory, knowing that you were guided by good reasons, sound ethics, and the patient’s best interest — or what appeared at the time to be the patient’s best interest — is itself a mark of professionalism and high-quality care.