Family, caregiver support needed to end treatment

Tough decisions devastate everyone involved

Few instances are more heartbreaking than the decision to halt medical treatment for a family member whose chances of recovery have been deemed slim or nonexistent. And when there is disagreement among the patient’s relatives about when to stop the life-sustaining care, the results are especially devastating for everyone involved, including the ethics committee that has to recommend a solution to the perplexing problem.

Last month, Virginia resident Michele Finn fought a legal battle with her family over her decision (supported by state law) to remove the feeding tube from her husband, Hugh Finn, who had been left in a persistent vegetative state following a car accident 3½ years ago.

Declared her husband’s legal guardian, she stated that he had once told her he would never want to live in such a condition. Virginia law allows a guardian to end life-sustaining treatment if they make a good-faith effort to determine the patient’s medical needs. Finn’s doctors had said he had little to no chance of recovery.

However, by the time a judge finally ruled in her favor on Oct. 1, the governor, a state lawmaker, and local, state, and national media had inserted themselves into what is normally an extremely personal and private decision.

So how can ethics committees learn from such a high-profile scenario as this? It might be a good idea to review existing policies and procedures. Additionally, educate staff and family members about clinical definitions, say sources who spoke with Medical Ethics Advisor.

The caretaker’s role

Health care providers who work with patients and families in such situations have a responsibility to attempt to help resolve such disputes before they reach a crisis of these proportions, says John M. Stanley, professor of religious studies and the Edward F. Mielke professor of ethics in medicine, science, and society at Lawrence University in Appleton, WI.

Since 1987, Stanley has convened three meetings of the Appleton Consensus Project, an international conference of leading doctors and ethicists from 15 countries working to establish guidelines for the ethical removal of life-sustaining treatment in near-death patients. Their guidelines were published in 1992 in the Journal of Medical Ethics.

"How this got to the governor, I can’t even imagine," Stanley says. "What should happen [in situations like this] is that the caretakers should put the intervening family together with the wife in a situation where they supported some kind of open discussion — often the best site is an ethics committee, but it can be as simple as a case conference with just the family, doctors, and a social worker. Put them together and give them a chance to say all the things that, if they don’t get a chance to say, will come out in some kind of public or official statement where they try to intervene."

Additionally, caretakers always should side with the relative who is closest to the patient and most likely to be aware of the patient’s wishes, Stanley adds.

"Especially if the person had a conversation with the patient about how he or she would want to die. That person should be listened to, whoever they are," he says, noting that, in the Finn case, that would have been his wife.

Dennis Brodeur, PhD, senior vice president of Stewardship for SSM Health Care System in St. Louis and an internationally recognized health care ethics consultant, agrees. "I would look to those relationships — here, his wife — who are very clearly speaking for his interests," he says. "I believe we have obligations to the patient and whatever known patient wishes are there, regardless of what legal instrumentation is in effect, one way or the other."

Providing support crucial

While the primary physician is mostly concerned with treating the patient and giving information to the immediate family, other providers at the hospital or treatment facility, such as nurses, pastoral counselors, and social workers, can provide a network of support for these families in crisis.

"The fact is, we have a lot of available resources to deal with these issues," Brodeur contends. "I think it is incumbent on the hospital or other institution to find some group of people that come out of either pastoral services, behavioral medicine, social work, case managers, or perhaps a clergy person that is closely aligned with the faith experience of that family. Whoever that is, the institution needs to find some resources to begin to mediate the conflicts."

At his institution, the clinicians treating the patient might notice a crisis developing among family members, he explains. That information can be given to professionals in the social work, pastoral care, or behavioral medicine section. "If I were the case manager in that setting, I’d have a call into the social service department or the pastoral care department and say, We’ve got a family in crisis here. Can we begin some sort of intervention to help them work through these issues?’"

The support needs to go beyond recommending the resources to the family, he says. "You need to actually have someone go down to talk to them. The case manager could say, They tend to gather Saturday afternoons at two o’clock; that would be a good time to go down and meet them all. Or, The conflict is felt most strongly by the patient’s wife; she’s here every night from six to eight.’"

The consultant should make the first contact, allowing the family to accept or reject his or her efforts, Brodeur says. "They can rebuff us, but at least we have made the attempt."

Educate families on medical condition

The medical community at large needs to do more to correct misconceptions about patients in persistent vegetative states, comas, and those who have been declared "brain dead," say both Stanley and Brodeur.

Each of those terms has a specific clinical definition, but each often is misused by some health care professionals and the public. "There are very clear, clinical definitions out there, but they are not always used by people very clearly," Brodeur says. "When I hear someone say persistent vegetative state,’ I assume they are talking about this [condition] as it has been neurologically defined and published, but that is not always the case."

The clinical definition of persistent vegetative state involves set levels of brain function that are measured with EEG, he adds.

The established standard of care for a patient diagnosed as being in persistent vegetative state allows for the removal of life-sustaining treatment after three months in most cases, Stanley notes. This published standard has been incorporated into the Appleton project guidelines and is the accepted standard of care around the world.

Certainly after 3½ years, a neurologist would be able to make a reasonable determination that the patient’s condition was irreversible, Stanley says. "That is not esoteric information; it is available to doctors in every state," he says emphatically. "I would think that if someone had gotten that information to the governor, even if he had been asked to intervene, he would have refused to."

Selected reading

• The Appleton International Conference. Developing guidelines for decisions to forgo life-prolonging medical treatment. J Med Ethics 1992; 18:Supp,3-22.

• GRUIC (Guidelines for the Responsible Utilization of Intensive Care) Project. Guidelines for the Responsible Utiliza tion of Intensive Care: How Long is Long Enough? Neonatal, Adult, Long-Term. Lawrence University, Appleton, WI; 1998.

• Stanley JM. Medical ethics — when to stop treatment. J Med Ethics 1995; 238:551-558.

• Cranford RE. The vegetative and minimally conscious states: ethical implications. Geriatrics 1998; 53:S70-73.

• Cranford R. Misdiagnosing the persistent vegetative state. BMJ 1996; 313:5-6.