Ethics Resource Center
The Oklahoma Palliative Care Resource Center is a resource for health care professionals. The "ethics" page will host questions, commentary, and discussion of issues raised by physicians, nurses, social workers, chaplains and other professionals involved in complex decision-making with patients or clients.Ethics consultations are also available.
From Medscape Medical Ethics
Exclusive Ethics Survey: "Should I Keep This Patient Alive?"
For doctors, end-of-life issues present complex and often gut-wrenching decisions.
Last summer Medscape electronically surveyed 10,000 physicians representing all specialties. Respondents answered a series of ethics questions, including 2 related to end-of-life care, and had an opportunity to elaborate on their answers. The findings show that while physicians do their best to respond to the wishes of patients and their surrogates, they disagree on what that means.
In surveying physicians, Medscape researchers asked, "Would you ever recommend or give life-sustaining therapy when you judged that it was futile?" Nearly 5300 physicians answered the question: 23.6% said yes, they would recommend or continue to give care they knew to be futile, while 37.0% said they would not. The majority, 39.4%, said their decision would depend on the circumstances.
Indeed, the question elicited some diametrically opposed responses. One participant responded, "That is the definition of unethical," while another noted, "Who am I to say what's futile?" Nancy Berlinger, PhD, an ethicist specializing in end-of-life issues at The Hastings Center, a bioethics research institution in Garrison, New York, says it's not surprising to hear such opposing views, even among physicians who, by definition, are universally committed to helping people.
"For a treatment option to be morally justified, there has to be a greater benefit than burden," says Berlinger, a deputy director and research scholar at the Center. She notes that pain, the discomfort of a feeding tube, or the need to move a patient from a home environment to a hospital may constitute burdens for the patient. "Physicians must constantly consider and communicate those burdens and benefits of care to their patients and surrogates."
The problem arises, she says, when the conversation shifts to gray areas. "A family member may say, 'I want you to do everything you can for Mom,' but there is no treatment called 'everything,'" Berlinger says. In the same vein, "there's no agreed upon definition of 'futile.'"
Doctors Call Upon Several Rationales
Many physicians wrote that they would never recommend such treatment but would provide it if the patient or family insisted. Berlinger criticized that rationale, noting, "They are still not acting in the patients' best interest because they are continuing to do something that could be burdensome."
Other doctors said they would honor a patient's advance directives and the wishes of his or her healthcare proxy. "This issue is more a decision for the patient in his/her living will or his/her healthcare power of attorney," wrote one respondent. Another noted, "The patient's family should be the final arbiter."
But such an approach falls short, even though it's a seemingly clear way of honoring a patient's right to self determination, notes Berlinger.
Advance care directives are documents and therefore stagnant, she says. While physicians must honor a patient's autonomy, they shouldn't confuse an advance care directive with a patient's wishes. "A living will can be extremely detailed but not match the scenario," she notes. "Patients don't have crystal balls. There are certain preferences that they might have held 5 years ago that don't apply now."
Legalities Come Into Play
What's more, while physicians must keep abreast of and abide by the laws in the states where they practice, they can't let fear of litigation -- another frequently cited reason for continuing to provide futile care -- supersede their duties to the patient, she says.
End-of-life care shouldn't be dictated by a document or litigation concerns, she says. Rather, doctors need to view the medical realities of a patient's condition and prognosis through the prism of a patient's preferences and values. While medical professionals can present the former, they must uncover the latter through conversations with the patient and his or her family. It's a process that takes time and should include input from palliative care experts, spiritual advisers, and ethics professionals, Berlinger says.
Among the considerations physicians frequently noted in their remarks: They would continue care for a finite period of time -- long enough for family members to come into town, for example. Berlinger notes that such latitude is essential to compassionate care, "but if you see that the family is making decisions that aren't in the patient's best interest, that's when you get ethics and social workers and chaplains involved." Physicians can't let a patient "drift" because their families "decide not to decide."
"You have to say, 'how can we come to agreement about what is good care at this stage of the person's life,'" she says. "Caring for the patient always comes first. Duty of care is duty to the patient."
Continued Care Comes in Different Forms
In qualifying their answers, many respondents drew a distinction between providing nutrition and hydration versus other forms of continued care. Several noted that "food and water are not medical care," while others observed that food and nutrition are components of palliative care even if they are not curative.
"Futile care often is referred to in the context of curative therapy," wrote one doctor. "If a feeding tube provides palliative comfort, it is not futile. Futile care must be better defined: care which provides no curative or palliative benefit. In that case, all futile care should be avoided -- do no harm."
In every society, food is a central component of nurturing, notes Berlinger. The idea of withdrawing food and hydration is psychologically troubling for family members and physicians alike. Recognizing that food is certainly an essential component of palliative care for most patients, she cites the experience of advanced dementia patients as a case where a feeding tube may present an undue burden. As feeding becomes more uncomfortable, patients may try to remove their tubes. Infections and repeated hospitalizations may ensue. Patients may have to be restrained.
Discontinuing Care When It's Premature
While respondents were of two minds about continuing futile care, they voiced much greater solidarity on the second survey question pertaining to end-of-life care: Would you ever consider halting life-sustaining therapy because the family demanded it, even if you believed that it was premature?
More than half (54.5%) said they would not discontinue care, compared with 16.3% who said they would and 29.2% who said it would depend on the situation.
Many respondents were quick to question the motives that family members might have for making such a decision, including financial gain and strained relations with the patient. They said they'd need to know more about why a family member would want to discontinue care. Others indicated that such a fundamental disagreement between the physician and the family indicates a failure in communication that should be addressed immediately.
"I would schedule a meeting with the family and the hospital medical ethics committee to discuss the clinical scenario of the ill family member; discuss the possible treatment responses we were looking for in the patient and the timeframes of those outcomes," wrote one physician.
"I would want all involved to be part of a team understanding the illnesses, treatments (benefits and risks), and possible outcomes. I would want us ideally to come to a consensus of a plan. Often this is possible, despite varying levels of education and religious issues, once enough communication is done to ensure each person's concerns are heard and addressed."
Decisions Will Still Be Complex
But dubious motives and failed communication can't account for every situation in which such a scenario might arise. As people live longer and physicians find themselves treating patients with more and more comorbidities, Berlinger says doctors are likely to encounter family members seeking to end treatment. In such cases, the process of discerning patients' values and preferences in light of their medical conditions will become even more complex.
"Do you continue to treat the diabetes when the daughter of an Alzheimer's patient says, 'Mom wouldn't want to live like this'?" Berlinger asks.
In light of such fraught situations, Berlinger advises doctors to keep up on the latest research describing the burdens and benefits of the technology and treatments they employ; to communicate this information clearly and compassionately to patients and their surrogates and to avail themselves of the ethics committee and other resources the hospital offers.
"These are emerging issues and areas where there is disagreement between doctors and surrogates," she says, and, no matter how difficult the situation, they're issues with which physicians must grapple because, "no matter what, there is a living patient there who is suffering."
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