Florida committee provides model
A hospice ethics committee can often provide additional emotional support to patients and family members during a time when making decisions is extremely difficult. For instance, one of the more difficult ethical cases handled by Hospice and HomeCare by the Sea of Boca Raton, FL, involved a patient for whom the legal issue was in less dispute than the emotional issue. Yet, if the hospice’s ethics committee hadn’t met with the patient’s family, the situation might not have been resolved well.
The case presented to the hospice’s ethics committee involved a man with cancer of the stomach who had attempted suicide and ended up in an acute care hospital, explains Joyce A. Richard, RN, co-chairwoman of the hospice’s ethics committee. The man was put on a ventilator and sent to a nursing facility. The issue presented to the ethics committee was that the patient wanted to eat, and his physician had ordered a test to see if he could swallow without choking, Richard says.
Just don’t feed him — let him die’
However, the patient’s wife disagreed with the physician’s order, saying that the patient, who now had a brain injury, had an advance directive stating that he should not be fed, Richard adds.
The patient, despite limited his cognitive skills, was able to walk and talk, says Paul Pfadenhauer, MDiv/MPS, team chaplain and ethics committee co-chairman. "The wife kept saying, This man was once a Shakespearean actor and was so vital, and just don’t feed him — let him die,’" Pfadenhauer recalls.
The physician and hospice were on firm legal ground in permitting the man to be tested for his ability to eat solid foods, but the ethics committee saw in this case an opportunity to help ease the pain endured by the man’s wife, who was having difficulty adjusting to the changes in her husband’s condition.
"We said, Your husband’s world has shrunk, but within the smallness he now lives in he can still find things he enjoys, and if eating is one of them, let him do it,’" Richard says. "Paul told her, He may not be the man you remembered, but he is a human being, and he has a right to eat,’" Richard says. "The committee achieved so much because the wife relaxed her anticipatory grief." The wife arrived at the committee meeting with a hostile attitude, but she left with a friendly attitude, Richard says.
"We thought it was one of the most beneficial outcomes because the wife was content now with the new world her husband was in and accepted him for what he was at the present," Pfadenhauer says.
In other cases, the ethics committee is asked to clarify the issues at stake when there are disputes between family members and clinicians about a patient’s treatment. For instance, one of the biggest issues the committee faces involves nutrition and hydration, Richard says.
Advance directive not reviewed till too late
In one such case, an Alzheimer’s patient was provided nutrition and hydration through tubes. The patient had been taken to the emergency room after a fall, and the attending clinician asked a family member for permission to insert a feeding tube into the patient. The family member gave permission, Richard recalls. Some time later, the family reviewed the patient’s documents and found an advance directive in which the patient had said she would never want to be fed that way, and the family requested that the tubes be removed, Richard says. "The attending physician was not comfortable with discontinuing, so we were called in to do a case review," Richard says.
The family was adamant that the patient’s wishes be honored, but the physician was against removing the tube, so the family changed physicians and asked that the patient be transferred to the hospice’s care center and have the tube removed, Richard says. The ethics committee discussed the various options, including providing support for having the tube removed, which would provide the benefit of respecting the patient’s autonomy but could create burdens in the form of side effects, such as pneumonia and skin breakdown, Richard explains.
"The benefit to the patient would be that she would not be so overloaded with fluids and would be more comfortable and would die sooner," Richard says. "The benefit to the family is that they’d know Grandma’s wishes were honored, and the burden was that they’d know she would die." The physician’s burden was that removal of the tube was against his beliefs, and the benefit was that he’d no longer be responsible for the patient’s care, Richard adds.
The second option would be to maintain the status quo, which would only offer benefits to the physician. The burden of that option would be that the patient would continue to deteriorate, Richard says. A third option would be to have the patient remain in the nursing facility and remove the tube while she was there. But this option was not supported by the physician, and the nursing home wanted the patient transferred to the hospice care center, Richard says.
Ultimately, the hospice decided to bring the patient into the care center under the care of a different physician, as the family had requested, Pfadenhauer says. "The family has the right to change attending physicians," Pfadenhauer says. "Our concern would be that the person has the right to die, but we wouldn’t impose that if the family didn’t want the tube removed."
Ultimately, these cases are decided by family members and physicians, in accordance with laws and the patient’s wishes, but the ethics committee gives all sides a chance to speak their minds and will make recommendations, Richard says.
Guidelines for your own ethics committee
Richard and Pfadenhauer offer these guidelines for establishing an ethics committee:
• Select diverse community and professional members.
"It’s extremely important to have diverse members, including volunteers, policy-makers, and community members," Richard says. "It’s important to not have all medical folks and not all hospice folks." When the hospice first established its ethics committee, managers spoke with employees in each department and wanted to have each discipline represented on the panel, Richard says. "Through attrition we’ve had some changes, but we do have a good representation in diversity, disciplines, and departments within our organization as well as outside it," Richard says. "We have, for instance, a lot of patients in nursing home facilities, so we have on our committee a chaplain from one of the facilities."
There are 25 ethics committee members, which may seem like a large group, but a group this size has the advantage of flexibility, Richard notes.
"The beauty of having that many people trained is that if you have a case review, you have at least five trained people available," Richard explains. The hospice finds potential committee members through recommendations of existing members and local organizations. Members include a Boca Raton police officer, a retired Veterans Administration medical director, and an attorney, Richard says.
• Train committee members.
The training program includes a videotape, audio tapes, and handouts, Richard says. "When we started the committee, we had a professor of philosophy and ethics at the local university guide us in principles, and we tape-recorded him," Richard explains. "So new members receive handouts with our principles, and we have a discussion about what we’ve been doing." The ethics committee reviews its orientation modules and procedures on a regular basis.
"Another thing we do is have off-site inspirational events where we rent out a retreat center and take the committee out for an afternoon of inspirational activities," Pfadenhauer says. "Or we take the committee on a working picnic, so we build a bond of fellowship."
• Establish criteria for reviews.
Each month the committee meets for 2.5 hours to keep abreast of current issues and to practice holding a case review session, Richard says.
"Very often during the meetings, even if we don’t have a live case that month, we’ll do a retrospective case from the book of cases, and this keeps everyone sharp and on their toes so the process is not forgotten," Pfadenhauer says.
When a patient, family member, physician, chaplain, nurse, team worker, or someone else requests a case review, the committee will hold a meeting within 72 hours of the request, Richard says.
"Any staff member truly is invited to make a recommendation for this consult, and they have a special form to fill out," Pfadenhauer says. The consult form asks for the patient’s name, medical history, what issue is prompting the request for a review, and who is making the request, Pfadenhauer says. Issues are often resolved before they come to the ethics committee. For instance, there might be a mini-ethical consult held at the patient’s bedside, Pfadenhauer adds.
"Sometimes people come to us and say, We need your input,’" Richard says. "Sometimes we’ll get questions that don’t require a full case review, but we do some of what we call in-the-hall conferences." Prior to a case review, Richard will gather details on the case, including the patient’s history, the medical issues, the social and psychological dynamics of the family circle, and the problem.
Family invited to attend committee meetings
Then the committee meets with the patient, family, and clinical staff, if any or all choose to attend the case review. "When we started the committee, we weren’t comfortable with having the family there while we spoke about these issues," Richard says. "We soon learned that we are there for them, and of course they’re going to have to be in the session." Thus, the family will attend and will be told by the committee that the ethics committee is not there to judge them or the situation, but to listen in respect, as well as to respect each other and their confidentiality, Richard says.
"From there we discuss options, consider benefits and burdens, and the family has a chance to give some input, but they don’t have a vote," Pfadenhauer says. "We have to meet the family and take a pulse of the situation and hear what the family has to say."
• Keep discussions focused to ensure sessions are manageable.
"I have to keep a tight rein on the group sometimes, and sometimes they resist that," Richard says. "We try to aim at an hour or 1.5 hours for the process, but we’ve had patients who have dragged it on a bit."
The meetings have been held at the hospice facility, but usually the ethics committee meets with the patient in the patient care center, nursing home, or the patient’s home, Pfadenhauer says. "We ask the patient if they are comfortable with being put into a wheelchair, and we’ll use the chapel, which is a non-threatening place," Pfadenhauer says. Each option presented for the situation at hand includes a discussion of potential benefits and burdens for each person involved in the case, and committee members vote according to the standard ethical principles of autonomy, professional integrity, justice, and non-malfeasance, Pfadenhauer says.
After the issue has been fully discussed, the committee votes for one of the options that have been discussed, stating their vote aloud along with their reasons for that vote, Richard says. Then the committee chair will say that the majority of ethics committee members have recommended this option for these reasons, and a smaller group recommends another option for these other reasons, Richard explains.
Typically, the patient and family are so appreciative that the ethics committee members have spent time discussing their situation that they leave satisfied with the recommendations, Richard and Pfadenhauer say. "The beauty of the process is that the family has been present throughout the dialogue and has understood and heard the issues discussed, and they can discuss with the doctor what to do with the recommendations," Pfadenhauer says.
[Editor’s note: The ethics committee of Hospice and HomeCare by the Sea in Boca Raton, FL, has assisted other hospices with establishing an ethics committee, including providing training sessions. For more information, call the hospice at (561) 395-5031.]