Biomedical concerns get lost in high-tech world of critical care
ICUs need to apply death-and-dying principles in easing families’ pain
After two decades of discussion, debate, and litigation, the principles of dealing with the difficult biomedical ethics issues posed by dying patients are well-established. Advance directives; surrogate decision makers; support for families dealing with loss, bereavement, and abandonment; and guidelines for use of life-support systems and "do not resuscitate" orders are all part of the medical culture.
The challenge remains, however, to ensure that the principles are applied in the everyday activities of the intensive care and palliative care units. With the ever-evolving capability of medical technology, there are few certainties. So the process has focused on making sure patients and families are actively involved in understanding the course of illness and decision making about treatment.
"It is important to go from written guidelines issued by elite groups and reach into the trenches with the professionals who care for dying people," says Bruce Jennings, executive vice president at the Hastings Center, a medical think tank based in Hastings, NY.
Bioethics program acts as a support service for physicians
Jennings co-founded a program called Decisions Near the End of Life, which has been implemented in some 200 hospitals in 20 states and is designed to include the principles of bioethics as part of the normal course of treatment of seriously ill and dying patients. That process has worked its course at Deaconess Beth Israel Hospital in Boston.
For the past 20 months, Deaconess has operated an ethics support service that is available to all physicians attending to patient care on a 24-hour-a-day, seven-day-a-week basis. "In practice, it is no different from other support services in the institution. It’s not a bioethics committee per se, but a support service. It is integrated into daily life around here," says Marion Longo, a psychiatric clinical nurse who runs the hospital program.
In addition, the hospital conducts seminars once a month among its palliative care issues group and monthly education seminars presented by ethicists for resident physicians. "It is built into the training program," Longo says.
The bioethics consultation process is initiated with a call to the service’s in-hospital hotline, which is staffed by on-call bioethics advisors. That advisor will discuss the ethical issues that have arisen in the care of an individual patient and help develop a course of action.
In more complex situations, a formal ethics consultation will be arranged with a standing bioethics group. This group is formed from a roster of physicians, nurses, social workers, and lay people who convene to discuss in greater detail the ethical conflicts in a patient’s care. This consultation group will make recommendations concerning individual ethical situations, "but the decision always remains with the attending physician," Longo says.
In addition, a group of ethicists, led by Longo, tour the hospital each week to review cases and attempt to anticipate issues that may arise.
Typical cases may involve determining who makes decisions when a family member is on life support and the attending physicians have concluded that life support should be withdrawn, making the transition from aggressive care to palliative care, removing information from medical records that could be damaging to patients or families, or dealing with chronically ill patients who want to be released from the hospital to commit suicide. "Do we let them go?" asks Longo.
The goal of the project was to take the developing consensus on bioethical issues — the result of a variety of factors from court decisions to guidelines developed by professional societies — and implement it into the daily routine of doctors, nurses, social workers, and pastoral care workers who care for critically and terminally ill patients, says Jennings.
By the late 1980s, health care and professional groups, as well as the courts, were issuing guidelines, consensus statements, and other policy documents on decision making on life-sustaining treatment and other ethical issues in the care of dying patients.
There was widespread agreement on the basic form of the decision-making process, the kinds of questions that doctors and families should be asking about the course of dying, Jennings says. "There might be disagreement about life support, but at least everyone was asking the same questions and following the same procedures, such as honoring living wills and advance directives," he adds.
"We felt it was important to go from written guidelines issued by elite groups and reach into the trenches with a continuing education program for professionals who care for dying people," he says. "We wanted to extend to them the awareness and critical reflection about emerging ethical and legal consensus about end-of-life decision making."
The founders also wanted the program to involve interdisciplinary teams, not just doctors and nurses, and to be based on-site rather than off-site. "We wanted this program to be more than just informational; we wanted it to be a program of institutional change," Jennings says. "The key question was, How do we go from talking about things to changing the practice and the way patients are cared for?’"
Reducing hospital costs or reducing utilization of services were not the goals of the program, he stresses. "Our goal was that we don’t care about the outcome as long as the decision-making process is one that listens to the patient and the family, that is patient-centered, and that respects the patient’s and the family’s values," he adds.
"That meant talking to patients and family earlier rather than later about issues of dying patients. It meant honoring advance directives and listening to family members," he says. "This was a reflection of the growing consensus that was not in favor of physicians making decisions behind closed doors then paternalistically leading families into decisions."
The program was piloted at 10 institutions, and then offered to interested institutions which paid part of the costs. Though funding has ended, the program is still available with more than 200 hospitals participating or completing the program, Jennings says.
The program typically requires about a year to complete and involves these components:
o a leadership training seminar for team leaders from the hospital;
o a survey questionnaire to hospital staff who care for dying patients to determine current policies and issues within the hospital;
o a series of grand rounds sessions and smaller seminars at which legal and ethical issues and hypothetical cases are discussed.
Typically, these interdisciplinary seminars focus on events that have caused problems in the hospital, glitches, and practices or policies that need to be changed. Finally, working groups are established to review institutional policies and propose changes.
The hypothetical cases, which are structured for increased complexity, may include:
o a competent patient who is dying and wants to refuse life support;
o a competent patient who is dying and who has provided an advance directive;
o a dying patient who has lost the capacity to make decisions and has left no advance directive;
o a dying patient who has left an advance directive with which family members do not agree;
o a case in which doctors want to stop treatment but family members insist that everything be done to prolong the patient’s life.
At Deaconess, participation in the Decisions Near the End of Life project evolved into a program to train resident physicians in the surgical intensive care unit (SICU). Program developers found that, while medical and surgical residents are among the most likely to encounter complex ethical issues in hospitals, they are among the least likely to have received ethics education and training. The hospitals developed a grand rounds program that included a series of four 60-minute group discussions led by an attending physician and the nursing director.
The discussions centered on hypothetical cases very similar to actual surgical intensive care patient issues, with an emphasis on incorporating ethical principles into problem solving in the SICU.
Out of that program came a series of guiding principles for responding to and resolving ethical issues. A study of the impact of the program found that length of stay in the SICU for dying patients was significantly reduced. (See related story, p. 123.)