Can One Sibling Pull the Plug If the Others Don’t Want To?

Illustration by Jeffrey Decoster

Doctors like to think of themselves as men and women of science: Assess the symptoms, order the tests, make a diagnosis, and administer the treatment. The modern world is making that model more complicated. Political debates about abortion and assisted suicide and technological advances that allow doctors to artificially extend life are posing all kinds of new ethical dilemmas. To address these modern issues, most major New York hospitals have created an on-staff ethics team made up of physicians, bioethicists, social workers, chaplains, and legal experts. These teams work with patients and families to help understand a prognosis, navigate treatment options, and act as mediators in oftentimes highly stressful life-and-death situations. To get a sense of what sorts of ethical problems patients and doctors are now facing, New York identified six real cases from city hospitals representing a variety of issues and asked a panel of ten medical ethicists affiliated with local hospitals, medical schools, and medical think tanks to weigh in.

Kenneth A. Berkowitz, M.D.
Associate professor at NYU School of Medicine and chief of ethics consultation for the Veterans Health Administration
Nancy Berlinger, Ph.D.
Deputy director at the Hastings Center
Nancy Dubler, Esq.
Director of the division of bioethics at Montefiore Medical Center
Loren Wissner Greene, M.D.
Associate professor of medicine at NYU School of Medicine
Navah Harlow, M.A.
Founding director of the Center for Ethics in Medicine at Beth Israel Medical Center
Deborah Korzenik, Esq.
Member of the ethics committees at Beth Israel Medical Center and Long Island College Hospital
Mary McCabe, R.N.
Chair of the ethics committee at Memorial Sloan-Kettering Cancer Center
Kathleen E. Powderly, Ph.D.
Acting director of the division of humanities in medicine at the SUNY Downstate Medical Center
Rosamond Rhodes, Ph.D.
Director of bioethics at Mount Sinai School of Medicine
Dan Sulmasy, M.D., Ph.D.
Chair of the ethics department at St. Vincent’s Hospital Manhattan and a Franciscan friar

Case No. 1: A doctor has a disease that interferes with his ability to treat patients.

An anesthesiologist on staff at a hospital went to see a fellow doctor as a patient. He was having brief lapses of consciousness related to complex partial seizures, a form of epilepsy that had gone unrecognized during his residency. He admitted to having at least one seizure in the OR that was so brief that no one observed it. The condition was treatable but left the second doctor uncertain about whether to uphold the privacy of the doctor-patient relationship or to inform the hospital staff.

The Issues
Hospitals have systems in place to ensure that doctors don’t operate while intoxicated, and the same standards apply here: The protection of patients in the OR trumps doctor-patient privilege. Unless proper treatment is certain to allow the anesthesiologist to practice safely, his condition should be disclosed to the hospital. “The threat of serious harm to the patients goes beyond the limits of confidentiality,” says Dan Sulmasy of St. Vincent’s. It’s then up to hospital administrators, says Deborah Korzenik of Beth Israel, to decide whether the doctor should be allowed to treat patients and under what conditions. In this case, the doctor treating the anesthesiologist would ideally encourage the anesthesiologist to report himself. It’s less contentious for everyone, says Rosamond Rhodes of Mount Sinai. If the anesthesiologist refuses to cooperate, however, his doctor would be obliged to go to the hospital administration against his patient’s wishes. There’s a risk of scaring other doctors away from seeking medical treatment, notes Rhodes. But again, that risk is outweighed by concerns for patient safety.

The Outcome
Though the anesthesiologist’s condition was treatable, his doctor told him it was serious enough that he could not honor his privacy if the anesthesiologist did not notify his chairman. The anesthesiologist did and subsequently resigned his position. A note in his file ensured that this information would be forwarded to any hospital he might apply to for a position. It would be up to that hospital to further evaluate the anesthesiologist to see if he was capable of working safely with patients.

Case No. 2: A family fights over continuing their mother’s care.

A mother of four children entered the hospital after suffering a massive stroke and was put on a ventilator. Doctors believed that she would not regain brain function. One of her sons got to the hospital first and told doctors that should his mother suffer heart failure or any other irreversible complication, no measures should be taken to save her life. Doctors worked under that assumption until one of the woman’s daughters arrived and claimed that her brother wasn’t interested in helping their mother. He had pushed to put their mother in a nursing home, the sister said, and added that she wanted to do everything possible to extend her mother’s life. The mother was widowed and hadn’t specified which of her children was to make decisions on her behalf. Doctors had to choose whose wishes to follow.

The Issues
Without a spouse involved, the responsibility for end- of-life decisions falls on a patient’s children, and without a designated health-care proxy in place, all the children hold equal weight. In cases like this, doctors have to focus on what the patient, not her children, would want, says Nancy Dubler of Montefiore. That means looking for examples of “substituted judgment,” or statements that the patient may have made that give clues about her wishes. If, while watching ER, say, the mother had commented that she would rather be unplugged than be kept in a vegetative state, that sentiment would hold more weight than any of her children’s opinions on the matter. “Everyone should be asked to contribute recollections about her,” says Dubler. “What was her relationship to medical care? Did she express wishes about what she would want in this sort of circumstance?” If no good evidence emerges as to the patient’s wishes, the hospital’s dispute-mediation team has to step in.

The Outcome
Until the legal and ethical issues could be resolved, the ethics team told the children that a Do Not Resuscitate order would not be put in place. They also told the children that there was nothing more that could be done for the mother to reverse her condition. In the course of the consultation, the siblings discussed how their mother responded to the Terri Schiavo case. They remembered their mother saying she thought it was terrible. “They should let that girl die in peace,” they recalled her saying. Everyone, including the sister who had initially rejected the idea, agreed that the mother should not be resuscitated in the case that her heart failed. She died shortly thereafter.

Case No. 3: A girlfriend wants to retrieve her dying boyfriend’s sperm.

A 25-year-old man was out drinking with friends when he fell and hit his head on the bar. He was rushed to the hospital, where doctors discovered he had severe swelling and bleeding of the brain. Before the doctors declared him legally brain-dead, the man’s girlfriend arrived and asked for a testicular biopsy—she wanted to retrieve his sperm before he died so she could conceive his child. The doctors had to decide whether the patient would have granted her request.

The Issues
The first thing to determine, the ethicists agree, is whether the man has an end-of-life plan in place—and if so, whether it mentions anything about his girlfriend. Since the man had no such plan, the question becomes, Was there any reason to believe he would have given her his sperm? The girlfriend would have little claim to the patient’s sperm, says Rosamond Rhodes of Mount Sinai, “unless there’s compelling evidence about this man’s desire to participate in his own posthumous reproduction.” If there is a written document about it, for example, or if the man had been discussing IVF before his death, the girlfriend might have the right to a retrieval. “But even if the girlfriend suddenly remembered a conversation—‘If I pass out drunk one night and hit my head, you can have my sperm’—that doesn’t mean physicians must accept this as clear evidence of a patient’s wishes,” says Nancy Berlinger of the Hastings Center. Of course, the request would be stronger coming from a wife, or some other person to whom the man (and his estate) is already legally bound. “For all these physicians know, the girlfriend is hoping to secure a piece of the patient’s estate by producing an heir,” says Berlinger.

The Outcome
Because there was no end-of-life plan in place, the final decision fell to the man’s family, who were initially open to the retrieval as a way to continue their son’s legacy. The ethics team met with the girlfriend and family and explained their concerns about the girlfriend’s request. They also suggested that another way of giving new life was through organ donation. The patient was officially declared brain-dead later that day. The girlfriend and parents thought about the decision overnight and came to the conclusion that they didn’t want to harvest the sperm. Instead, they consented to organ donation, and after the ventilator was discontinued, the man’s organs were transplanted into four people.

Case No. 4: A man dying of AIDS doesn’t want his family to know of his disease.

A man managed to live with HIV and aids for fourteen years without revealing his condition to his family. He was admitted to the hospital with pneumonia, and instructed his doctors not to disclose his illness to his family or friends. His condition rapidly deteriorated, and he fell into a coma. Several family members arrived at the hospital, including the patient’s brother, who was his health-care proxy agent. Were the doctors obligated to honor the patient’s wishes, or should they have informed his brother of his condition?

The Issues
“The duty to maintain confidentiality is a strong but not absolute principle,” says Dan Sulmasy of St. Vincent’s. In this case, that duty has to be weighed against the possibility that telling the brother might influence the treatment choices he makes on the patient’s behalf. Say, for example, the man had misled his family into thinking he had cancer or diabetes, leaving the proxy to push for a course of treatment that would be futile. Several ethicists believe that by selecting a proxy, the patient designated at least one person to make decisions for him, and that person (and that person alone) should therefore be informed about his disease. “I think if we expect the health-care agent to act on his behalf, the agent needs to know his condition,” says Kathleen Powderly of the SUNY Downstate Medical Center. But that’s not an absolute principle, either. If the patient has only 24 hours to live, there would be little reason to disclose his condition and go against his wishes; his health-care proxy’s decisions would be immaterial. But if doctors think there are still viable options to prolong the patient’s life, then informing the proxy would become more important.

The Outcome
New York State has especially strong confidentiality laws pertaining to AIDS. Under those codes, doctors are required not to disclose a patient’s condition unless they have reason to believe he may have infected others. Because no person was known to be at risk of contracting the virus in this case, the hospital’s ethicists, lawyers, and doctors agreed that the family didn’t need to know that the patient had AIDS. They told the family that the patient was suffering from an underlying fatal disease that they were not at liberty to disclose.

Case No. 5: A dying homeless man refuses treatment.

A homeless man entered the hospital with chronic gangrene, osteomyelitis, and diabetes. Doctors could tell that he had a psychiatric condition, but the patient refused to have interventions of any kind; he didn’t allow doctors to treat him with medication or submit to a psychiatric evaluation. He claimed to want simply to be fed, given his insulin, and given a bed. He was also difficult with the nurses, throwing urine at them and making them generally uncomfortable. Doctors tried to coax him into accepting intravenous antibiotics, but he refused. The choice: send him back to the street, a possible violation of the “First do no harm” oath, or seek a court order declaring the man incapable of making decisions for himself, essentially forcing him into the doctors’ care.

The Issues
For a busy staff dealing with an uncooperative patient, the instinct might be to send him back to the street. But there’s no gray area here: “Discharging this very sick man to the street to die is ethically unacceptable,” says Nancy Dubler of Montefiore. The dilemma becomes how to respect the patient’s desires and treat his illness. A patient has a right to be mentally ill, says Nancy Berlinger of the Hastings Center, “but we don’t want a mentally ill person to suffer because his illness tends to make him say no.” Doctors have to determine if the man can make his own decisions; if not, a surrogate must be found. In this case, psychiatrists can be called in, even against a patient’s wishes. “Under New York law, patients certified by two physicians to be a danger to themselves or others can be held against their will in a psychiatric unit,” says Deborah Korzenik of Beth Israel. A court order can then be obtained to treat the mental illnesses. In the best-case scenario, the man would respond to that treatment, then agree to medical care. If he still refuses, doctors can seek another court order to appoint a surrogate to oversee his continued care.

The Outcome
The ethics team enlisted the help of a psychiatrist to determine whether the patient had decision-making capacity. She was able to have a conversation with the patient that made clear he was not capable of making decisions. During that conversation, the man allowed doctors to call his mother. She confirmed the man’s mental illness and encouraged the hospital to force him into care. The hospital sought, and was granted, permission to treat the man against his will. After seven weeks of medical and psychiatric treatment, he was released into a chronic-care facility under the supervision of his doctor, who continued to act as his surrogate.

Case No. 6: A woman with terminal cancer tries to commit suicide but fails.

A 58-year-old woman with terminal cancer had already made one suicide attempt. When friends didn’t hear from her for a few days, they called her building’s superintendent, who found her alive but barely breathing. She was taken to the hospital, where she was put on a ventilator and slipped into a coma. She didn’t have a living will, but her health-care proxy asked doctors to discontinue the ventilator to “finish” the suicide. Clearly, the proxy reasoned, the patient didn’t want to live. Doctors had to consider whether by doing so they were simply withdrawing “extraordinary means” or committing an illegal act by assisting suicide.

The Issues
Suicide attempts can create especially tricky ethical situations because they raise complicated questions about a patient’s intent. In a case like this, “the patient’s suicidal behavior cannot automatically be considered an expression of her true wishes, because her actions to harm herself were potentially related to her depression,” says Deborah Korzenik of Beth Israel. Assisted suicide is also illegal in New York State; doctors therefore can’t participate in “finishing” the suicide. Instead, they have to figure out what course of action the patient would have wanted. Doctors tend to balk if they feel like they’re aiding a suicide, says Nancy Dubler of Montefiore Medical Center. Their objections are heartfelt, she says, but they must put these feelings aside. “The point isn’t to assist or not assist a suicide; it’s to respect the wishes of a previously capable patient.”

The Outcome
When the patient arrived at the hospital, doctors were not fully aware of the extent of her cancer or the brain damage from her suicide attempt. They therefore decided to leave her on the ventilator until they could determine whether her situation was reversible and what her previously stated wishes were, if she had made any. According to the proxy, the patient had stated that life with incurable cancer wasn’t worth living. “It is therefore easy to imagine that she would find life with brain damage and cancer to be even less worth living,” says Rosamond Rhodes of Mount Sinai. Once the doctors learned the full extent of the damage—that she was experiencing organ failure and other irreversible problems—they reasoned that they were simply prolonging her inevitable death. Removing the ventilator would not be assisted suicide, but rather a fulfillment of her end-of-life wishes. The proxy was informed and assented. Before the ventilator could be removed, the patient’s heart stopped, and she was not resuscitated.

Can One Sibling Pull the Plug If the Others Don’t […]