By Janis Anderson Rueping
Along with remarkable advances in health care—including those that can prolong life—can come very difficult decisions for patients, families, and members of the health-care team. From the outside, such decisions may seem straightforward—do what helps and don’t do what doesn’t—but in the midst of these situations, decisions can be extremely complex. Treatments may hurt as well as help. Medical interventions may prolong life, but they may also impact or diminish the quality of that life.
In an ideal world, the doctors explain the patient’s medical condition, describe what treatments or other measures they recommend to help the patient get better or feel better, or both, and then ask the patient for permission to proceed with their recommendations. The patient considers it all, then tells the doctors what he or she would like to do. The family understands, and everybody moves to the next step.
Of course not all cases unfold in an ideal world.
When faced with a complex health-care situation, how do we think through the difficult decisions that have to be made? Who helps families and physicians when faced with ethical dilemmas?
Swedish Covenant Hospital is a comprehensive health-care facility providing health and wellness services to the communities of Chicago’s North and Northwest Sides. Its nearly three hundred beds, 1,800 employees, and more than 550 physicians serve in a richly multicultural neighborhood. Members of the hospital’s ethics resource team respond to case consultation requests from physicians, nurses, residents, other staff, patients, and their families, providing assistance with the ethical consideration of issues or problems arising in the course of patient care. The goal of these consultations is to help those responsible agree on a course of action most likely to realize the patient’s self-defined good, values, and choices. Team members work closely with Daniel Dugan, the hospital’s consulting ethicist.
Dugan identifies three questions the ethics team often addresses in complex situations: 1) Who should make the decisions? 2) What factors should take priority in the decisions? 3) How can ethics team members help patients, families, and staff when uncertainties or disagreements about what to do stymie forward progress in the care of the patient?
Dugan explains that decision makers include three groups: medical professionals dedicated to serving the well-being of their patients; patients whose present and future lives are being changed, often for the worse; and their families, whose lives have been disrupted by diseases they don’t understand and by fears of making the wrong decisions. Uncertainties, fears, and time pressures can make decision-making difficult for all involved.
When they are invited to look at a case, the ethics team members enter the situation, learn about the medical factors involved from the medical team, and meet with the patients or family members. They exemplify the power of listening patiently, and of fostering compassion between professional staff and patients/families, especially in contexts involving diversity of cultural and religious backgrounds. They are not there to give answers or make judgments, but rather to help in service of the patient’s life and well-being, respectful of those whom the patient loves.
In every clinical ethics case, four sets of factors should be considered: 1) the medical facts (the patient’s health problems, the recommended medical treatments likely to do more good than harm for the patient); 2) the patient’s preferences, if known; 3) the likely effects of the treatment options (including no treatment) on the patient’s life; and 4) religious and cultural beliefs and practices of the patient and his or her family, as well as the demands on others in the patient’s life.
Here are three cases in which the Swedish Covenant Hospital ethics resource team was involved, accompanied by a brief analysis of the ethical principles and practice involved.
The Patient’s Voice
Bernard, an elderly non-English speaking man, was in the intensive care unit (ICU) with serious yet treatable problems. His wife and children were with him every day, surrounding him with love and support. When his treating physicians found a cancerous lesion, they prepared to inform the patient and discuss treatment options. But before they could do so, Bernard’s children intervened. They asked the physicians to treat the cancer in an effort to cure and preserve his life, but did not want anyone to tell their father of his diagnosis. Should the physicians honor the children’s request?
The physicians asked for help from the ethics team. How could they manage Bernard’s cancer treatment and care while keeping his diagnosis a secret? As an adult, he was awake, alert, cooperative, and fully capable of making his own health-care decisions.
Kim, a member of the ethics team and a nurse, met with Bernard’s family, along with an interpreter and his physicians. The children explained that they were afraid that their father would perceive the news of a cancer diagnosis as a death sentence. Kim explained that the doctors felt obliged to be honest with their patient, asking the children to consider whether a careful explanation of the type and degree of cancer, treatment options, and likelihood of successful treatment might allow Bernard to see his cancer for what it was: a treatable problem, not a death sentence. The children considered this, but remained committed to not telling their father while still treating his condition.
How could they manage Bernard’s cancer treatment and care while keeping his diagnosis a secret? As an adult, he was awake, alert, cooperative, and fully capable of making his own health-care decisions.
Bernard’s children and physicians, along with Kim and the interpreter then met with the patient. The group asked him how he felt about being informed about his diagnosis and any potential subsequent treatment. He smiled and said he trusted his children completely to choose what he needed to be well and that he did not want to know what was wrong. He also said he did not want his wife to know his medical information. When Kim began to offer him reasons to reconsider, Bernard interrupted her, saying that this was his decision.
Kim conveyed Bernard’s request to the ICU team, who honored his request. They reasoned that the patient had a right to know all information about his condition and treatment, but he did not have an obligation to exercise this right—he was clearly asking his children to exercise that right on his behalf.
Bernard’s medical condition was known, and the recommended medical treatments were identified and clearly presented. His preferences were clear, and the ethical problem was the conflict between those preferences and the medical team’s perception of its ethical duties. Non-medical factors outweighed the medical recommendations. In this case, the patient’s preference ultimately decided the matter, with informational and emotional support from the medical team.
The next step was to listen to the patient’s children and enter into their perspective of knowing and loving their father in the context of their family’s culture. Respectful also of the professional duty of physicians to implement the demands of informed and voluntary consent, the ethics team member wisely decided to consult the patient directly. In the presence of family and professional staff, she elicited a clear, even emphatic confirmation by the patient that all information-sharing and decisions about cancer-related issues were to go through the children, leaving Bernard and his wife under a cone of silence. Once the patient had stated that he was delegating decision-making authority to his children, who accepted it, the medical team was able to form their response to the ethical question, “Is it OK to withhold diagnosis and cancer treatment options from this patient in the ICU setting?” The provisional answer: yes.
George, eighty-five, came to the emergency room by ambulance. His admitting diagnosis was malnutrition. George had end-stage Alzheimer’s disease and was being cared for at home by his daughter with support from home-care agency staff. He was diagnosed with an inability to swallow effectively because he no longer had the memory or physical ability needed to swallow. George had not eaten in two weeks, and he had lost nearly thirty pounds in the past six months. Bedbound for many years, he had bedsores. He slept most of the time and did not speak, but he was able to smile at his daughter.
Should a feeding tube to provide food and fluids directly to his stomach be inserted, or should George be placed in hospice care where he could live out his remaining days with a focus on comfort?
A tube would deliver more calories, but it would not help him to be more alert, heal, or become stronger. And it would not reduce the risks associated with swallowing problems. He also would be able to pull out the feeding tube, which would require either another procedure to replace it or restraints on his arms to keep him from pulling it out. These possible consequences of managing a feeding tube could make his care much harder for his daughter, who might have to send him to a nursing home.
George’s daughter could not imagine life without him, and wanted to do anything possible to prolong time with him. Though the physician encouraged her to think about what the patient would want, she felt she had to do “everything” for her own peace of mind. However, the team members were concerned that the patient was so physically debilitated by the time he came to the hospital, making them wonder if the daughter was capable of caring for him or making health-care decisions for him.
George’s daughter could not imagine life without him, and wanted to do anything possible to prolong time with him.
In this case, it was not immediately clear who should be making decisions for the patient. George clearly could not make his own decisions, and his daughter’s perspectives were complicated. The ethics team needed to involve other legal and governmental authorities to help them determine the daughter’s ability to serve as the decision maker. If not the daughter, would a guardian need to be chosen? Meanwhile, without a decision-maker, the physicians were guided by what was best for the patient with the least harm.
George’s physician decided to place a temporary feeding tube until a surrogate decision-maker could be identified, at which point, the very critical decision of surgical intervention versus hospice with all values, beliefs, and consequences could be weighed.
George’s medical condition was well understood, but the medical treatment options in themselves did not point to a resolution. Rather, they made up the elements of a dilemma, a choice between two undesirable options.
The daughter stated that she could not imagine life without her father, and wanted to do anything necessary to prolong his life. What the patient might say for himself is unknown. For George’s daughter, death was a grief far more difficult than any suffering or loss of dignity that her father might endure. So other factors contributed to the decision. Unbearable grief combined with stresses of full-time caregiving added to the challenge of determining what was best for the patient.
The ethics team member spoke with the patient’s daughter to help clarify the risks and benefits of the procedure option, but also collaborated with other members of the medical team—social worker, physician, and legal department—to forestall a hurried decision that may or may not have been in the patient’s best interest.
Irene, who is over ninety, was admitted to the hospital for repair of an abdominal aortic aneurysm, a life-threatening emergency. After surgery, she was sent to ICU because of a restricted blood flow to one of her legs, along with a life-threatening infection. She was too sick to understand her condition or to make a medical decision, so the family was faced with a dilemma: should they allow the surgeon to amputate the infected leg that was threatening her life, or should they change the goals of care to provide comfort and support, allowing Irene to die without further suffering?
Not only were both alternatives undesirable, but family members, some of whom had medical training, had differing opinions about what to do.
It was obvious to all that Irene could not understand her condition, the treatment choices, or their consequences, so her children were recognized to be her decision-makers. They were in the best position to “guess” what their mom would choose, given the terrible options. The ethics team member clarified that issue—the patient’s inability to make her own health-care decisions—right at the start. Everything afterward flowed from that determination.
Not only were both alternatives undesirable, but family members, some of whom had medical training, had differing opinions about what to do.
In such a case where there is no “right” answer, the task was to support the family through the painful and tiring process of considering everything necessary to make a decision that would not be regretted in the future. The ethics team member and the medical team allowed time and provided support to the family to allow them to come to a consensual decision. Eventually they concluded that their mom had already suffered through two major surgeries and that things were getting worse instead of better. It finally made sense to turn the focus of her care away from more painful interventions that would not likely give her any measure of meaningful recovery, and toward an objective that medicine and family together could indeed provide: assuring her comfort and cleanliness in a homelike environment, surrounding her with the sounds and feelings of those who love her.
After a few more days, they informed the team member that they had made the decision to request hospice care for their mother. Relief of Irene’s suffering, a quality of life consideration, led to their decision.
The ethics team member was virtually invisible, or transparent, in this case. His presence was gentle, reflective, and patient, accompanying the family in service of “hanging in there” long enough for their consensus of loving concern for the patient to emerge. Like the other team members, he was careful not to impose anything resembling his own agenda on any of those directly involved in the case. He demonstrated “trusting the process”—trusting that when family, patient, and staff come together respecting one another’s concerns and values, and focused on doing the best possible thing for the patient in a situation calling for trade-offs—usually results in an outcome that turns out to be the closest we can get to the “best” we can do for the patient.
For more than two decades, Swedish Covenant Hospital has made clinical ethics an integral part of patient care. Rooted in its mission of providing a continuum of excellent health-care services, as part of the Evangelical Covenant Church and Covenant Ministries of Benevolence, the hospital feels a profound sense of responsibility to care for people as children of God, to support their families and to help assure that their values and culture, their faith, and human dignity are considered when medical decisions are being made, with sensitive, spiritual, ethical, and emotional care as well as medical best practices.
Contributors to this article include Daniel Dugan, clinical ethicist, and the following members of the Swedish Covenant Hospital ethics resource team: Kim Leslie, manager, emergency department; Melanie Tornquist, director of pastoral care; and Suzanne Dressel, manager, clinical nutrition. Eric Gluck, medical director, ICU/IMCU, serves as the team’s medical adviser. The team’s work is underwritten in part by generous gifts to the Swedish Covenant Hospital Foundation.
For information on preparing a health care advanced directive, go to americanbar.org and search “Giving Someone Power of Attorney for Your Health Care form” or “State Specific Advance Directive forms.”