Is there a conflict over patient’s wishes? Involve clinical ethicists!
Communication, negotiation are necessary
"I know my mother wouldn’t want this, but I just can’t let her go." If a family member admits feeling this way to a clinician, a clinical ethicist can be very helpful in resolving the situation, says Thomas Foreman, DHCE, MA, MPIA, director of the Department of Clinical and Organizational Ethics at The Ottawa Hospital in Ontario, Canada. "It’s never wrong to feel like you don’t want your mother to die. But it may be a violation of autonomy and personal integrity to act in a way you know she has directed you to not act," says Foreman.
Clinical ethics practitioners, the subset of bioethics that addresses ethics in the clinical environment, should assist clinicians in understanding that it is their responsibility to carry out the patient’s wishes to the best of their ability, advises Nneka O. Mokwunye, PhD, director of the Center for Ethics and the Spiritual Care Department at MedStar Washington Hospital Center in Washington, DC.
"We must also inform the family that the clinical team has an obligation to fulfill their loved one’s clearly expressed end-of-life wishes, and address any grief by bringing in additional supportive services, like spiritual care," she says.
If family members threaten legal action, it can be easier for providers to simply give in and honor the family’s wishes. "Although this is an ethical issue, like many ethical issues, the solution lies in communication and negotiation," says David Casarett, MD, MA, director of hospice and palliative care at Penn Medicine and associate professor of medicine at University of Pennsylvania’s Perelman School of Medicine in Philadelphia. Even though the "right" answer might be to respect the patient’s preferences and to ignore the family, that’s not always possible.
"So health care providers need to understand the family’s perspective," says Casarett. Do they want aggressive treatment because they don’t believe the patient’s preferences, because they don’t trust the physician’s estimate of prognosis, or because they haven’t yet come to accept that the patient is dying?
"Ethical determinations of right and wrong are a blunt instrument that are often unhelpful in situations like this," says Casarett. "Instead, what’s needed is careful communication, listening, negotiation, and consensus-building."
Explore patient’s meaning
Mokwunye says clinical ethicists can reduce the tension between family members and clinicians by following these key steps:
- Read the patient’s chart to begin getting a clear picture of the clinical facts;
- Talk to the patient’s attending physician, nurse, and others on the clinical team to understand their sources of conflict;
- Discuss the situation with the family to appreciate their distress and sources of conflict;
- Participate in a family meeting to improve communication between the parties.
In substitute decision making, the question becomes whether the family is obligated to act in the best interest of the patient, or whether they are obligated to act as they understand the patient would see their own best interests. "Those can be two different things. There isn’t a universal consensus on this," says Foreman. "In some cases, the team is dependent on a family member — who may or may not have their own agenda — to express for the patient what their wishes might be."
Many patients don’t express their end-of-life wishes, but even if a patient does have an advance care directive, it often lacks specificity. "We will often encounter a document where a patient has signed a power of attorney which says something vague like, I want to die with dignity,’" says Foreman. "Well, define that. What does it mean to that individual patient if they don’t spell it out?"
The substitute decision maker and clinical team are then left to interpret the patient’s wishes. "One of the ways bioethicists can help in that situation is helping the clinician and the family explore the meaning behind the patient’s statements," says Foreman. The family member can share details with the team about what "dying with dignity" would mean to the individual patient.
Years ago, Foreman asked a severely ill patient what quality of life would be acceptable to him, and the man answered, "As long as I can have a beer and enjoy a football game." "So if that patient was on a chronic ventilator but was awake enough to enjoy a football game, that might be acceptable to him," he says.
The clinical ethicist can help the team to dig deeper and come to a conclusion about the patient’s end-of-life wishes. "One of the core competencies for bioethicists is the ability to actively listen, to tease out some of the nuances and mediate," says Foreman. "We should be utilizing that skill set to assist providers and families."
Much of the time, ethics is called only after things have progressed to a level of frustration and stalemate. "Consulting ethics earlier can sometimes help to stave off this situation. But it is hard to know when a situation will progress," says James N. Kirkpatrick, MD, an assistant professor of medicine in the Cardiovascular Division and in the Department of Medical Ethics and Health Policy at the Hospital of the University of Pennsylvania in Philadelphia.
While some exceptional clinicians are able to handle very challenging ethical situations, it is still helpful to have an outside perspective. "As a cardiologist and an ethicist, I would not hesitate to consult ethics on a difficult case when I am attending on the wards, for this very reason," says Kirkpatrick.
Tensions may increase
A clinical ethicist’s most important contribution in this situation is as a mediator, says Casarett, acting as a neutral party from "outside" the clinical case, hearing both sides and helping to identify and bridge gaps in communication.
"It is important to remember that a good’ outcome in these cases usually means that consensus is reached on a plan that is acceptable to all parties, not necessarily that autonomy trumps all other concerns or that a particular position wins,’" says Kirkpatrick. He adds that the ethics consultant’s job is to ask questions which illuminate the positions of different parties, and get people to think about their own positions and those of others.
Tensions sometimes increase initially when clinical ethicists step in as a third party to resolve conflicts between patients and providers. "Difficult questions need to be asked, and sometimes people resent it," says Foreman. "I can say things that the parties involved can’t necessarily say to one another, and they can be mad at me for saying it. I don’t take that personally."
For instance, a clinical ethicist might feel it necessary to ask the decision maker questions such as, "Is that your agenda or the patient’s?" "It’s not an accusation — it’s an exploration. But it can appear as though you are accusing them of not having goodwill," says Foreman. "Feathers get ruffled as part of that process."
It’s unrealistic to expect surrogate decision makers to act as disinterested third parties, however. The clinical ethicist’s goal is to create an environment where every perspective is respected and considered. "There is nothing that is off the table in this discussion. Then we have a considered conversation around all of that," says Foreman. "After a consult, there should never be an elephant in the room."
A family member might have seen media coverage on overcrowded hospitals and wonder if the physician’s recommendation to stop aggressive end-of-life interventions is really motivated by the need to open up a bed, for instance. "Sometimes practitioners aren’t very good at explaining themselves. Patients and families wonder if there is a hidden agenda," says Foreman. Once the concern is aired, a provider has the chance to assure the family that the recommendation is based on the standard of care and the patient’s best interest.
Physicians oftentimes fail to consult with ethics, either because they are not aware of how to contact ethics services in their institutions or because they choose to handle the problem themselves. "Clinical ethicists should foster trusting relationships with the clinicians, so when conflict arises they feel comfortable seeking our involvement," Mokwunye says.
Otherwise, clinicians may decide to handle things themselves, possibly to the patient’s detriment. "If the physician is one of the two parties in the conflict, to expect that the physician can then become the resolver is probably not realistic," says Foreman. "Yet physicians often will take on the role of the conflict resolver in a conflict they’re enmeshed in."
- David Casarett, MD, MA, Director, Hospice and Palliative Care, Penn Medicine/Associate Professor of Medicine, Perelman School of Medicine, University of Pennsylvania, Philadelphia. Phone: (610) 617-2447. E-mail: firstname.lastname@example.org.
- James N. Kirkpatrick, MD, Assistant Professor of Medicine, The Hospital of the University of Pennsylvania, Philadelphia. Phone: (215) 662-7726. E-mail: James.Kirkpatrick@uphs.upenn.edu.
- Thomas Foreman, DHCE, MA, MPIA, Director, Department of Clinical and Organizational Ethics, The Ottawa Hospital, Ontario, Canada. Phone: (613) 737-8899 ext. 19967. E-mail: email@example.com.
- Nneka O. Mokwunye, PhD, Director, Center for Ethics, Spiritual Care Department, MedStar Washington Hospital Center, Washington, DC. Phone: (202) 877-6211. E-mail: Nneka.O.Mokwunye@medstar.net.