Providers need reminder: End-of-life decisions aren’t only up to patient and family
Executive Summary
Early involvement of bioethicists can help avoid conflicts when the clinical team anticipates there might be disagreement on what’s best for a particular patient. Bioethicists can:
Have a smaller number of clinicians care for the patient.
Assign more experienced providers to difficult cases.
Remind providers that healthcare decisions are not entirely up to the patient or the patient’s surrogate.
Concept of futility "necessary and reasonable"
At the University of Missouri School of Medicine in Columbia, MO, about 80% of ethics consults are called for patients who are either dying or near death in the critical care setting, estimates David A. Fleming, MD, MA, FACP, professor of medicine, chairman of the Department of Medicine and director of the Center for Health Ethics.
"Where patients are not doing well and we continue to add treatments and support, hoping for a turnaround that does not occur, we find ourselves in a situation where we are using an immense amount of technology with the prognosis very poor," says Fleming.
This can also occur in the out-patient setting if patients get to a point at which the ongoing burden of treatment, such as dialysis or chemotherapy, is greater than the benefit they’re deriving.
"Patients sometimes appear to be doing quite well from the family’s or even the provider’s standpoint," says Fleming. "That’s often very tricky, because the patient is up and about."
In one such case, a patient’s need for ongoing blood transfusions became much more frequent. He told Fleming, "This is becoming too hard for me." The patient went home and committed suicide.
"That was a wakeup call for me," says Fleming. "If the patient says, This is really becoming too hard for me,’ we need to listen to them. That is a good time to call an ethics consult."
Providers are trained to treat patients, not to withhold treatment, and don’t want to believe that their efforts have failed. "It’s hard to know where to draw that line," Fleming says. "But at some point, futility is a reasonable and a necessary concept to embrace."
Early involvement is key
There will always be cases with conflicts, but "it certainly helps when ethics is involved earlier rather than later," says Christine Mitchell, RN, MS, FAAN, executive director of the Center for Bioethics at Harvard Medical School in Boston, MA. Here are strategies to avoid conflict when the clinical team anticipates there might be disagreement on what’s best for a particular patient, or when ethicists identify such cases on rounds:
Have a smaller number of clinicians care for the patient.
"When you flag a patient like this, you want to narrow the numbers of staff so there is better continuity of care than is sometimes the case, especially with big ICUs [intensive care units] with hospitalist services," says Mitchell.
A small team of primary nurses and attending physicians can then enter into a verbal agreement with the patient or the surrogate decision maker. The group might agree to trial a treatment and reevaluate it after 48 hours.
"In some cases, the team doesn’t think it’s beneficial, but the patient’s decision maker thinks it is, and there’s enough doubt to make it worth trying," says Mitchell.
Ideally, the same caregiver is there 48 hours later to discuss the situation, and to remind the family member that they would not continue the treatment if it wasn’t beneficial. "Then it’s possible to hold people to the agreement that they entered into," says Mitchell.
Assign more experienced providers to difficult cases.
"Where staff recognize that there is going to be a mismatch of values, you can then be alerted that this is a family that needs some of the most experienced staff working with them," says Mitchell.
Consider leaving the cardiopulmonary resuscitation (CPR) decision to a later point in time.
"There’s a lot of controversy about this," acknowledges Mitchell. "But I think fighting about the CPR decision in the beginning is a big mistake." This can lead to families becoming fiercely protective out of fear that their loved one won’t be resuscitated.
"Sometimes it’s worth letting the CPR/DNR [Do Not Resuscitate] decision go. Recognize that if the patient’s heart or breathing stops, that you will intervene and call a code, and when the code isn’t effective you will stop," says Mitchell.
If the code only results in restarting the heart but the patient doesn’t get any better and will code again, the clinical team can raise the issue again. "At that point, the family understands, especially if they attended the code, that it is a pretty traumatic set of activities," says Mitchell.
Reinforce with providers that health care decisions are not entirely up to the patient or the patient’s surrogate.
"Some of us working in the field for decades are pretty familiar with families who just don’t accept that their loved one is brain dead, or has a diagnosis from which they can’t recover," says Mitchell.
Providers struggle with decid-ing whether their responsibility to protect a patient from non-therapeutic medical treatment overrides their responsibility to respect the surrogate’s view that treatment should continue.
"We have a policy with a process for handling disagreements about potentially harmful medical treatments," says Mitchell. "For us, that process involves the chief medical officer and hospital administrator."
When necessary, these individ-uals are made aware of such disagreements. "This is so bedside staff are not out on a limb making decisions about whether to refuse to do something they think is wrong," says Mitchell. In such cases, which are very rare, providers sometimes negotiate to transfer the patient if they can’t come to an agreement.
"Patient autonomy has become so deeply embedded that some health care providers don’t feel like they retain any responsibility themselves," says Mitchell. "We talk about shared decisions because those responsibilities are shared."
David A. Fleming, MD, MA, FACP, Professor and Chairman, Department of Internal Medicine/Director, Center for Health Ethics, School of Medicine, University of Missouri, Columbia. Phone: (573) 884-2013. Fax: (573) 884-1996. E-mail: [email protected].
Christine Mitchell, RN, MS, FAAN, Executive Director, Center for Bioethics, Harvard Medical School, Cambridge, MA. Phone: (617) 432-4020. Fax: (617) 432-3721. E-mail: [email protected].
