Certified medical ethicist offers this case study
Whether or not hospices have an ethics committee, it is a good idea to review and improve policies regarding ethical decision making, an expert says. One way to do this is to train staff in the use of the four-box method for making ethical decisions, an expert suggests.
“Once you learn this method, it can be applied to any situation where ethical issues arise,” said Michael Frederich, MD, FAAHPM, regional medical director of Trinitycare Hospice in Torrance, CA. Frederich is the chairman of the ethics committee at Trinitycare and is a certified medical ethicist, who completed ethics training coursework at the University of Washington in Seattle. He spoke about the four-box method at the National Hospice and Palliative Care Organization’s (NHPCO) Sixth Clinical Team Conference, held April 21-23, 2005, in Atlanta.
“Using the four-box method is very practical,” Frederich said. “It allows you to sort out salient issues and focus on what’s really important, and it’s a tool that makes sure you have all the information you need in order to make a decision.”
The first step is to gather information and divide it according to each of the four boxes, he explained.
The boxes are as follows:
First box — Medical indications: This box pertains to the disease process, the patient’s prognosis, and any medical problems the patient is having, Frederich said.
Second box — Patient’s preferences: This area highlights what the patient wants, including his or her goals and desires and whether the patient is able to speak for him or herself. If the patient’s interests must be represented by a relative, then that is noted in this box, he said.
Third box — Quality of life: This involves the patient’s capacity to enjoy him or herself, and it highlights the quality of life the person currently is experiencing and what sort of quality of life the person would like to have it possible, Frederich says.
Fourth box — Contextual features: “This is the garbage bag where everything else fits in,” he explained. “These are the cultural and religious aspects and living arrangements, family features, etc.”
By organizing the information into these four boxes, the hospice ethics committee obtains a more complete picture of what is going on, Frederich noted. “You then apply the ethical principles to reach a conclusion and ethical decision,” he pointed out. “These are the things we do on every case we look at.”
For hospice work, the five ethical principles are as follows:
- “Relief of suffering is our No. 1 job ethically in end-of-life care,” Frederich said.
- Beneficence — doing something for someone’s good;
- Nonmalfeasance — do no harm;
- Autonomy — letting the patient do what he or she wants;
- Justice — making sure it’s fair and equitable for the public.
Trinitycare’s ethics committee meets every other month and is on call for ethics consults, Frederich reported. “It works in three steps,” he explained. “One step is using me as a medical ethicist to look at a case and render a decision, if it’s a simple case.”
If a case is complicated, then Frederich, the chaplain, a nurse, and a social worker will do a four-box method on the case and come out with recommendations and, then if it’s a very complex case, the entire committee of 15 people, including a lawyer and members of the community, would be called to convene and look at the case from all angles, Frederich reported.
The entire committee has never had to meet to discuss a case because most of the ethical dilemmas are resolved at the level of the hands-on hospice providers, and what is left has not been so complex that it has required the entire committee, he noted. “At committee meetings, we write policy and procedures over controversial issues like artificial hydration and nutrition,” Frederich said. “We want a policy written on each of these controversial issues so the staff have a clear direction of where to go.”
At the recent NHPCO meeting, one attendee described to Frederich an ethical dilemma that arose for a hospice, and he used that case as an example of how to apply the four-box method. “It was a case of a relatively young woman — if I remember right — and that was part of the dilemma; she was fairly comfortable with letting nature take its course and not fighting too hard to survive,” Frederich recalled. “She was having trouble swallowing and didn’t want a tube inserted,” he said. “But the family was not as comfortable with her decision and, they were making statements about how as soon as she couldn’t talk, they’d demand an IV and tube to be put in.”
Particularly one sister, who was the patient’s nearest kin, was very uncomfortable with the patient’s decision to let go, Frederich added. The patient had not signed an advance directive, but she had made her desires known verbally to her family and health care providers.
Putting the facts of the woman’s case into the four boxes, this is how it worked:
Box 1: The woman had metastatic cancer, which had spread to her bones and liver. She had lost a significant amount of weight and, while she was tall, weighed only 110 pounds because she wasn’t eating well, Frederich explained. “She could express herself, but was getting sleepier and didn’t have much appetite,” he added. “Her pain was well controlled, so she was pretty comfortable.”
Box 2: The patient’s preference was clear: She did not want to be artificially maintained. Medical staff had heard the woman specify her desire, so even though she did not have an advanced directive, this would be the instruction they would follow even after she could no longer speak for herself, Frederich recalled. “Part of palliative care is to help the family understand,” he said. “She was clear in her wishes, and this is her decision, but we appreciate how difficult it is for family members to accept it.”
Box 3: The patient’s quality of life was as well as could be hoped because she wasn’t suffering and her pain was well managed, Frederich noted. “She was weak and not able to do as much as she would like to do, so the prospect of increasing her quality of life was poor,” he added. “The long-range outlook for her quality of life was poor and consistent with her decision to not extend her life.”
Box 4: While the patient espoused no specific religious philosophy, her sister was a born-again Christian, who held all life to be sacrosanct, and believed her sister’s life should be sustained at all costs, Frederich said. That was where the ethical conflict arose, he added.
The next step is to take those four boxes together and apply to them the five ethical principles. In following this step, the ethical discussion reveals that medical knowledge of what happens when nutrition and hydration are withdrawn demonstrates that this does not cause a patient suffering, Frederich said. “It’s very peaceful and comfortable, and we make sure the mouth doesn’t get too dry with a little ice chip or something,” he explained.
So the answer to principle one, the relief of suffering, is that withholding artificial maintenance would not contribute to the patient’s suffering. Likewise, since the patient had requested that medical professionals do not prolong her life artificially, beneficence is served because that is what she desires, Frederich said. There was no issue of malfeasance since withholding feeding and hydration tubes were not harmful in this situation and the woman’s autonomy is maintained if her wishes are honored, he explained.
Finally, there would be justice in the course to withhold artificial treatment because this type of treatment would not affect society or be inequitable in society, since it has been public policy since 1982 to honor patient’s wishes in providing artificial life support, Frederich concluded. So, the ethical decision would be to honor the patient’s verbal wishes and withhold artificial treatment when the time came, Frederich said.
However, there were other suggestions an ethical committee might make in this case, including advising the hospice to have the woman review and sign an advance directive while she was able to do so, he said. Also, if it were appropriate in this case, there is a strategy hospices might use called the time-limited trial, in which, if there’s a specific goal, then a patient could be provided the life support treatment for a limited time, Frederich noted.
This would apply in the case where the dying patient has a specific family member who has unfinished business with the patient and who is hoping the patient will improve for a brief period of time so the family member could speak with him or her, he explained. “We might consider intravenous fluid for a few days in this case,” Frederich said.
Another recommendation would be for the hospice to work closely with the sister to help her see how important and medically ethical it is to honor the dying woman’s wishes. “In this case, the hospice had a responsibility to continue to work with the sister and support her through the bereavement process, but also to open the sister’s eyes and continue to show her how much the patient is declining,” Frederich said. “No amount of food or water would reverse the cancer and save her life.”
Hospice staff also could contact the sister’s pastor and have the minister and other members of the church visit with the sister to help her with the process of letting go of her sister, he said.
“Hospice staff could say, ‘She’s having a hard time accepting the fact her sister doesn’t want artificial hydration and nutrition, and we’d like to have you help her work through this,’” Frederich said. “Anything you can do to get through to the family is important because the patient and family are the unit of care.”
While the legally and medically correct answer in a situation such as this might be readily apparent, the family conflict over that decision makes it difficult for hospice staff, which is one reason why the four-box method is so important, he noted.
“The beauty of the ethics consultation is it’s done by an interdisciplinary team of people, using the four-box method and five principles, and we make a good decision,” Frederich said. “Then, we communicate that decision back to the team, and they’ll see that due process has been followed and it’s the right decision.”
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Michael Frederich, MD, FAAHPM, Regional Medical Director, Trinitycare Hospice, 2601 Airport Drive, Suite 230, Torrance, CA 90505.