Am Fam Physician. 2003;67(9):2025-2028
An 88-year-old woman was recently admitted to our inpatient family practice service in an unresponsive state, after having a stroke. She had a history of angina, congestive heart failure, diabetes, hypertension, atrial fibrillation, and an above-knee amputation, and she had been homebound. On several occasions over the years, this woman had told her family physician that she did not want to undergo cardiopulmonary resuscitation (CPR), be put on a respirator, or have her life prolonged mechanically if she became terminally ill. Her physician had documented these wishes in the office chart, as well as in the hospital medical record, during several admissions over the past two years. During each admission, her code status was “Do Not Resuscitate” (DNR). However, the patient had never signed a formal advance directive statement or assigned durable power of attorney for her health care to anyone.
During the current admission, the resident on the service and the patient's family physician spoke with her nearest relative, a niece, about the patient's condition, and brought up the issue of code status. The niece claimed that she had power of attorney, insisted that “everything” be done to save her aunt's life, and was outraged that a DNR status would even be considered. She asserted that,“All you doctors want to know is whether to fit her for a coffin or an urn.” The physicians on the service were not sure whether to respect the patient's clearly expressed, consistent wishes and risk the anger of the niece and a possible lawsuit, or go along with the niece's directive. The hospital's ethics committee was consulted, and the determination was made that it would be prudent to follow the niece's wishes about decision-making for her aunt. Should we have done anything differently?
In this case scenario, the family physician successfully performed a task that often is forgotten during physician-patient visits—the physician frequently discussed with this patient her wishes for end-of-life care. The conversations specifically included her thoughts about respirators, CPR, and other potential life-prolonging treatments. The physician documented those wishes in both outpatient and inpatient medical charts on several occasions. It would have been helpful if the patient had formalized those wishes by signing an advance directive. Even so, this patient seems to have left no doubt about her views, and she maintained them over the years. The question here was how much importance should be assigned to the patient's wishes when the only family member present demanded actions contrary to them.
Some information not included in this case scenario would be helpful in making a decision—i.e., what was the prognosis for this patient following the stroke? Because of her complicated medical history, it was unlikely that attempted CPR would ultimately be successful. At least one retrospective study has shown that chronically ill patients undergoing CPR in the setting of an acute insult only have about a 4 percent chance of surviving long enough to leave the hospital.1 Even in those few cases, the patients do not necessarily leave the hospital in better shape than when they were admitted. In fact, one of the contraindications for CPR as it was being developed in the 1960s was that the patient should not be near the end of life due to an incurable disease.2
The obligation of physicians to withhold treatments that are likely to be of no real benefit to the patient was not changed by the Patient Self-Determination Act of 1990. This act requires hospitals to ask all patients on admission if they have advance directives and to assist in preparing them if they do not. As they decide about advance directives, patients and families should be helped to understand that CPR can have painful consequences, such as needles, catheters, pressors, and ventilators that may hold no real benefit for a patient dying of a chronic disease.
Another piece of missing information is the type of power of attorney held by the niece. A durable power of attorney for health care would carry weight in this case, but the patient never signed one. The physicians should have requested that the niece produce the power of attorney so that its relevance to the medical situation could be assessed. However, even if the niece could produce evidence that she is the designated health care proxy, her desires should not take precedence over those of the patient. The niece in this case was clearly distressed by the suddenness of her aunt's decline. This distress is common in family members even when the end is foreseen after a prolonged illness. The goals of care have for so long been life prolongation and comfort that it can be difficult to narrow that focus to only keeping the patient comfortable. Certainly the cultural backgrounds of the patient and her niece could have had a strong effect on their opinions.
For any health care proxy there are at least three different standards for surrogate decision-making. The most ethical standard is to ask the question, “What would the patient choose if she were able to decide for herself?” Using this standard, the family or friends who know the patient make a substitute judgment based not on their wishes but on those previously expressed by the patient.3 If there are no known patient views, the proxy decides in the best interests of the patient. The second standard calls on the decision-makers to weigh the benefits and burdens of a treatment and decide if it will improve the patient's overall situation. The third and least good ethical standard is to make decisions based on the wishes of the proxy or the rest of the family. If the surrogate decision-maker is also the primary caretaker, it may be impossible to separate these wishes from the patient's interests because problems for the caretaker often translate into problems for the patient.
The principle of respect for patient autonomy that places substitute judgment first has become increasingly important in American medical ethics over the past 30 years, often clashing with the existing paternalistic model in which physicians did what they thought was in the best interests of the patient.4(p209) Now, the pendulum has swung in the other direction, and it is the patient's wishes that often are considered paramount. Justice Benjamin Cardozo of the New York State Supreme Court expressed the legal foundation for this viewpoint as early as 1914, when he wrote, “Every human being of adult years and sound mind has a right to determine what shall be done with his own body.”4(p73) This right is passed on to the patient's health care proxy or, failing that, to his or her next of kin if the patient is no longer able to exercise it.
The law clearly states that an adult patient or authorized surrogate has the right to refuse any medical treatment, whatever the consequences. The converse, however, is not true. The patient or surrogate does not have the right to demand and receive any desired treatment. The default position is no treatment unless authorized by the physician. CPR, however, has become one of the few exceptions in medicine in which the default response is to provide the treatment unless the patient explicitly declines it. The Patient Self-Determination Act of 1990 allows patients to specify, among other things, whether, and under what circumstances, they desire CPR. Should CPR, or any treatment, be considered futile or of no benefit to the patient, however, the physician is ethically obligated not to perform it, despite the patient's desires. This viewpoint was tested in court in the case of Catherine Gilgunn. At the Massachusetts General Hospital, the physicians wrote a DNR order and removed mechanical ventilation from Ms. Gilgunn over her daughter's objection that her mother might have wished to be kept alive. In 1995, the Suffolk County Superior Court jury found for the hospital and physicians, who apparently had thought that further treatment was futile.5(pp19–29)
Certainly, one common reason for following the surrogate's directions rather than the patient's expressed wishes is the fear of a law-suit. Although a risk-management team might be concerned with malpractice, an ethics committee should address ethical standards and legal precedents. To win a lawsuit for malpractice, a plaintiff must prove that there was harm caused by negligence. The following four elements are necessary to find negligence:
The professional must have a duty to the affected party.
The professional must breach that duty.
The affected party must experience a harm.
The harm must have been caused by the breach of duty.5(p126)
One of the physician's duties to the patient is not to provide futile treatment. It would be difficult to prove negligence if the physician withheld CPR because he or she considered it futile.
Currently, we offer CPR to everyone, no matter how ill the patient. Another way to approach the issue is to treat CPR the same as other medical procedures and ask ourselves if the procedure is medically indicated. Will the patient derive some overall benefit from it, such as maintenance of a meaningful life for some period of time, or can we consider the treatment futile, with no chance of improving the patient's condition? In short, are the benefits worth the burdens? If they aren't, we should approach CPR as we would any other medical treatment and not offer it. If we make a statement such as “We do not recommend this because…” we are not leaving an inappropriate medical choice to the patient's family. Sometimes our responsibility as health care professionals is to make decisions that protect a family from the possibility of tremendous guilt associated with making a choice that, in all likelihood, offers no good result. In this scenario, we also should consider the patient's clearly recorded desire to be protected from the technology of the modern hospital death.
Should this case have been handled differently? The best way to answer this question is to consider whether the treatment will benefit the patient medically. If the answer is no, because the patient will not gain meaningful benefit from resuscitation, CPR should not be offered, just as cardiac surgery would not be offered at this time. If CPR would not be deemed futile in this patient, the next consideration should be to do what the patient would want. This patient clearly did not desire life-prolonging treatment under certain circumstances. If those circumstances were met, she should have been given DNR status, and respectful explanations should have been made to the niece about how her desires were superseded by those of the patient.
In the current medicolegal climate, it is tempting to follow the safer path of accepting the demands of a proxy. However, if the patient's desires are clearly known, we are obligated to follow them.