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An infant is born prematurely at 22 weeks, weighing only about 1 pound and with bleeding in the brain. He tentatively clings to life, but in light of the fact that there is minimal likelihood he will recover a level of functional mental capacity, the question is raised of how aggressively to treat him. Elsewhere in the hospital, a grief-torn family hopes for a miracle and presses doctors to assertively treat their loved one, even though the medical team has concluded that further intervention is futile and would, instead, actually cause the patient increased pain and indignity.
From life’s beginning to its end, and at all points in between, there are opportunities for vexing ethical dilemmas to arise. And in this era of advanced technology, those opportunities are increasing.
Cases in which a patient or her family seeks treatment that physicians judge non-beneficial or even harmful are among the most common, but they are far from the only ones. Other troubling scenarios involve seriously ill patients who want to leave the hospital or who refuse interventions deemed critical to their recovery. When patients can decide for themselves, their autonomy is honored, but what if it isn’t clear whether or not they have the mental capacity to make an informed decision?
An advance directive can serve as a guide to the patient’s desires, but even then there is considerable gray area. Family members can serve as surrogate decision-makers, but what if there is disagreement among them? Or what happens when it appears to the healthcare team that a family is not following the patient’s wishes or not acting in his best interests? Or how about when physicians themselves disagree over what is appropriate treatment and what is ineffectual?
Such issues create a maze of conflicting choices for physicians, nurses and other healthcare professionals and patients and their families to work their way through. At UCLA, the UCLA Health Ethics Center has tried to ease that journey and provide guidance when complex decisions must be made. The center draws on experts from many fields (medicine, nursing, public health, social work, spiritual care, law) to provide education, service and research. Its goal is to ensure humanistic and compassionate solutions to the difficult ethical situations that inevitably unfold in healthcare settings.
“Hospitals that develop and provide cutting-edge medicine need a mechanism to balance complicated medical and ethical issues,” explains Neil Wenger, MD ’84 (RES ’87, FEL ’89), the center’s director. “Academic medical centers such as UCLA often confront complex questions of life and death. We help patients, their families and clinicians through the process of negotiating difficult ethical decisions.”
Ventilators, dialysis machines and other technologies commonly used in critical-care units can keep patients alive through artificial breathing and organ function, but the question may arise, at what cost? “These wonderful technologies were designed to be temporary – to sustain someone who is experiencing a health crisis, but who is expected to get through it and to be liberated from these machines,” says James Hynds, PhD, LLB, the center’s clinical ethicist. “It was not envisaged at their inception that these machines would be used on a long-term basis and certainly not, in some cases, for the rest of the patient’s life.”
Prior to the middle of the 20th century, Dr. Hynds notes, physicians had little to offer seriously ill patients to keep them from dying. Technology eventually created a range of interventions that could keep patients alive for weeks, or even months, but often in a debilitated, burdened state. Dr. Hynds believes that until recently, too many doctors provided these interventions whenever requested by families without giving due consideration to what it would mean for patients or how it would change the practice of medicine.
“The purpose of medicine cannot simply be to keep people alive for as long as possible in the absence of health and well-being,” Dr. Hynds says. “Medicine doesn’t exist to make dying more painful, more inhumane. But these devices, when continued inappropriately once it has become obvious the patient cannot recover, have the potential to allow the disease to take a tighter grip on the patient, ultimately producing a death that is much more cruel than anything nature herself could devise.”
Dr. Hynds believes there is a growing appreciation among physicians that medicine should be about healing and bringing a degree of wholeness to the patient. That can be achieved, he says, through palliative care, even as the physician is letting nature take its course and allowing the patient to die.
High-tech interventions used outside of critical-care units, such as the ventricular-assist device (an artificial heart designed to serve as a bridge to transplantation), also save lives, but they, too, have forced providers to wrestle with difficult ethical questions.
“When using advanced technology, there are some situations in which it may be more likely that the patient will die or that the therapy will place the patient into an adverse health state rather than actually achieving the intended benefit,” says Dr. Wenger. “That doesn’t mean that a rescue should not be attempted, but it dramatically increases the responsibility of physicians to ensure that patients, and those making decisions for them, are fully informed about the pros and cons of using that technology.”
Although anyone can request an ethics consultation, Dr. Hynds says the majority of the cases at UCLA are initiated by physicians, typically because they are concerned that a patient’s or family’s request runs contrary to the concept of what it means to be a good doctor. Rajan Saggar, MD, director of the medical intensive-care unit at Ronald Reagan UCLA Medical Center, says he appreciates the role Dr. Hynds and other ethics-center experts play as a liaison between healthcare providers and patients and their families during difficult times. “The family and the physicians have the same goals, but often there are differences over what is attainable,” Dr. Saggar says. “To have experts who come without any biases and can act as a third-party in moving the decision process forward is invaluable.”
Understandably, emotions can run so high for families with critically ill loved ones that the decision-making environment is extremely tense. Lidia Micle, RN, a critical-care nurse in the neuro-trauma intensive-care unit at Ronald Reagan UCLA Medical Center, says it’s not uncommon for family members to have difficulty processing information communicated to them, despite physicians’ best efforts. Micle has seen cases in which the ethics team is brought in because of a conflict between the healthcare team and the patient’s family over how to proceed, but also when there are disagreements or confusion over patients’ advance directives and what they mean under given circumstances. “Everything moves so quickly in healthcare,” Micle says. “It’s important at times to step back and ask the larger questions to make sure we’re doing what’s best for the patient.”
When she is called in to consult, Katherine Brown-Saltzman, RN, MA, the center’s codirector and assistant clinical professor in the UCLA School of Nursing, says, her initial goal is to create the “moral space” to enable conversations to occur. “One of the things that can break down when there are ethical concerns is communication, so at the beginning, you need to bring people together to understand what’s happened, what the concerns are, and how we can mutually come to the best decision,” she explains. “It’s important to be able to clearly state what the ethical concerns are and to be able to clarify that in a true dilemma, no matter what course you take, there will be some harm and some regret.”
Often, the staff of the ethics center will bring in experts from other disciplines to assist. David Wallenstein, MD, a physician with the Santa Monica/UCLA Palliative Care Service, is frequently called on for end-of-life cases in which families are pushing for aggressive care that the healthcare team deems pointless. “These are heart-rending situations,” Dr. Wallenstein says. “The patient is receiving treatment that is painful and non-beneficial, and the grieving family has alienated the healthcare personnel with their insistence that certain treatments be given based on their desire to do what they believe is right.” Dr. Wallenstein says his challenge in these cases is to work with the family and healthcare team to develop a treatment plan in which the patient will be more comfortable, while the family feels its wishes are being honored.
When families have spiritual questions or needs, a chaplain can be called in to consult. Often these situations, too, involve end-of-life cases in which families are at odds with the healthcare team’s recommendation to withdraw aggressive treatment. “Some families may say that they’re waiting for a miracle, and it’s often the chaplain’s role to go beyond the stated belief in a miracle, see the family’s pain and do some grief and spiritual counseling to help them let go,” says Rev. Karen Schnell, director of UCLA Health’s Spiritual Care Department.
Other issues for which chaplains are called to consult include questions of a religious nature, such as whether or not a procedure such as organ transplantation or an unusual fertility treatment is endorsed by the patient’s faith, and how to handle situations in which a treatment decision might run afoul with the faith’s teachings. In some cases, a patient’s religious values conflict with a physician’s moral imperative to provide lifesaving treatment, such as when the patient’s beliefs preclude receiving a blood transfusion. Other faith-based conflicts occur within families. For example, an incapacitated patient’s advance directive on life-prolonging treatment may run contrary to a family member’s religious beliefs, and the medical team believes the family member is pushing for care that the patient wouldn’t want.
“Our task is to use our special training to listen to people’s deepest concerns and discern what is underneath the words being spoken,” says Rev. Timothy Thorstenson, who manages the Spiritual Care Department at UCLA Medical Center, Santa Monica. “Once we establish the family’s awareness of the existential struggles they are dealing with, we try to help them move through that struggle in a way that provides meaning in the midst of this awful situation.”
Early and clear communication about a patient’s prognosis and treatment goals can go a long way toward reducing uncertainties and mitigating conflicts, Dr. Wenger says. But, inevitably, there will be cases in which the physician will face an ethical dilemma over conflicting values.
Among the most common is patient autonomy vs. the physician’s professional obligations. As a general rule, much latitude in the decision-making process is given to the patient or the patient’s surrogate decision-maker, including in cases where the physician might not choose the same course for his or her family member. But doctors aren’t expected to render care that won’t provide any benefits to the patient or that they believe will do more harm than good.
On the other hand, patients have the right to decline treatment or hospitalization recommended by healthcare professionals – as long as they have the capacity to decide what’s in their best interest. “If, after a series of formal and informal tests, patients are demonstrated to lack insight into their own circumstances, we wouldn’t allow them to make a decision that would result in harm,” Dr. Hynds explains. “We would treat them, so they could return to a state of being capable of exercising autonomy.”
Rebecca Seixas was feeling the burden of having to make a decision on the fate of Fiona (not her real name), an elderly woman who had suffered a massive stroke and was now being kept alive by a breathing machine. Seixas had gotten to know Fiona six years earlier when she served as her home-care nurse, and the two had become close friends. Now, in the absence of any other friends or family members who could speak on Fiona’s behalf, Seixas found herself in the role of surrogate decision-maker. After unsuccessful attempts to take the patient off of the breathing machine, Fiona’s nurses were asking Seixas if she knew whether or not the patient, given her poor prognosis, would want to continue with the aggressive intervention. Seixas hadn’t discussed such a scenario with her friend. The case was considered by the ethics committee, which assembled the people who knew the patient best, so they could discuss what she would have wanted. The committee ultimately recommended withdrawing the life support and shifting to palliative care. “Everyone made me feel so comfortable,” says Seixas, who provided input to the committee. “To have the discussion and hear that everything possible had been done, all protocols had been followed and that she wasn’t going to improve gave me the courage to say that I didn’t think she would want this.”
The multidisciplinary ethics committee meetings also can provide assurance to physicians facing complex decisions. Mousa Shamonki, MD, a UCLA reproductive endocrinologist, has twice requested that his cases go before the committee. “Both were situations in which patients made unusual requests, and I wasn’t comfortable acting on my own,” he says.
In each case, Dr. Shamonki and the patient presented the background and their perspectives to the committee, which then held lengthy discussions before having members weigh in. “It was extremely helpful to have a consensus statement that sorted out the issues that needed to be considered,” Dr. Shamonki says.
In 2011, the center began a fellowship program to train future clinical ethicists. “To be able to walk with patients, families and providers in these challenging situations is both humbling from a personal perspective and rewarding in terms of my professional development,” says Kevin M. Dirksen, MDiv, MSc, the center’s Amy and Anne Porath Clinical Ethics Fellow. “UCLA has provided me the opportunity to learn the craft and skill of ethics consultation, which cannot be captured in a lecture hall or in a textbook.”
Meanwhile, the center continues to promote awareness in UCLA’s hospitals, employing what Brown-Saltzman says is one of the busiest consultation services in the country. “If you have a lone ethicist trying to do consultation work, or you just have an ethics committee that meets once a month and tries to do a few consults, you are missing a huge swath of everyday issues that clinicians are struggling with,” she says. “As a center, we are trying to create an environment in which ethical issues are seen as a routine part of clinical practice. Most of these cases are not black-and-white, which is why we are brought in – to get at core values and translate those values into good care.”
Dan Gordon is a regular contributor to U Magazine.