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Nurses are often the health care providers who know the most about a patient’s wishes for end-of-life care, but are sometimes left out of such discussions.
"Often, the medical focus is on cure. Many nurses and physicians have difficulties being truthful with patients facing end of life," says Sharon Valente, PhD, APRN, BC, FAAN. Valente is associate chief nurse for research and education at the Greater Los Angeles Veterans Affairs Healthcare System
In one such case, nurses were upset because a physician wasn’t informing a woman’s family that she was near death. "The physician was too close to the patient to, in his words, abandon hope,’ and give the bad news. But he was willing to have me do that," says Valente. She informed the family that time was short, and encouraged the husband to bring the family and rabbi to see his wife very quickly.
"That afternoon, the patient’s IV pain management was increased and she was in a coma," says Valente. "However, the family did gather to say goodbye before it was too late."
Some physicians are unwilling to delegate any aspect of end-of life care discussions to nurses. "But that fear may be displaced," says Daniel P. Sulmasy, MD, PhD, Kilbride-Clinton Professor of Medicine & Ethics at the University of Chicago’s MacLean Center for Clinical Medical Ethics.
Research suggests that nurses are, in fact, more comfortable about their ability to discuss do-not-resuscitate orders with patients and surrogates than the in-house medical officers to whom attending physicians often delegate this task.1
"Nurses are often wonderful resources in these discussions," says Sulmasy, the study’s lead author. "Physicians who don’t make use of the nurse’s professional expertise in this setting might be missing an opportunity to provide the best possible care."
Nurses sometimes have knowledge physicians lack about family dynamics or a patient’s wishes before he or she lost decision-making capacity.
"In an era in which we are moving toward more team-based care, there is something problematic when this kind of conversation isn’t part and parcel of the care given by the team," says Sulmasy. Here are common scenarios:
Nurses may feel as though they aren’t getting the full story about a patient’s prognosis.
"I have heard, for instance, of nurses being fearful to talk about the discontinuation of left ventricular assistive devices, in a unit run by a thoracic surgeon who continues to paint a rosy picture," says Sulmasy.
Nurses may experience moral distress due to what they perceive as unethical end-of-life care.
"When they feel that, they need an avenue to reach out," says Sulmasy.
Nurses may feel they are contradicting their own professional ethics by treating aggressively when they know the patient wants palliative care, for example. In one such instance, a competent patient who was dying wanted to forgo food and fluids.
"The nursing home agreed to this plan, but acted differently," says Valente. "The nurses brought food and fluids in frequently and the provider ordered [megestrol acetate] to encourage appetite."
Management did not meet with the nurses to discuss the patient’s wishes. "Autonomy is a major issue," says Valente. "The nurse often knows the patient’s wishes for dignified death, but may not be able to advocate for this with the providers."
Nurses may administer a high dose of pain medication without realizing that the physician intended to hasten death.
"The nurse may feel guilty afterward that he or she gave a medication that hastened death, but was not informed whether this was the patient’s wish or the physician’s intention," Valente explains.
If patients want to talk about hastening death, nurses may feel unskilled or uncomfortable with this discussion. "Many nurses have no available consultation or counseling to help them sort out these dilemmas," says Valente.
Lack of nursing involvement is one of the main barriers to oncology patients arriving at an understanding of their diagnosis and making the transition from aggressive life-sustaining therapy to end-of-life therapy, says Paul Helft, MD, director of the Indiana University Health’s Fairbanks Center for Medical Ethics in Indianapolis.
"Clearly, nurses have a lot to offer," says Helft. "They are highly committed to advocating on behalf of patients, and are generally good at translating’ the things that doctors say." Here are some approaches to encourage nursing involvement in end-of-life care:
Post signs reminding providers to ask a nurse to come into the patient’s room during discussions of end-of-life care.
"There have been efforts to try to do this better," says Helft. Indiana University Health’s "Call a Nurse" program posts signs on exam room doors reminding medical staff on the oncology inpatient unit to pull a bedside nurse into the room if there is going to be a significant discussion about any aspect of care. While some physicians already did so routinely, the practice has become more widespread and consistent. "Everybody has seen the benefits, and it’s become a priority," says Helft.
Nurses provide "an extra set of eyes and ears" to help patients absorb information, says Helft. Patients sometimes need prompting to ask questions they’ve forgotten, such as side effects of treatment.
"I’ve seen skilled and experienced nurses head off conflict, when medical teams are not communicating effectively with a patient or their family," says Helft.
Ask nurses directly for their opinion.
When rounding on the intensive care unit, bioethicists can routinely ask nurses, "What do you think?" suggests Sulmasy.
Empower nurses to call consults.
At Indiana University Health, about half of ethics consults are initiated by bedside nurses; in some cases, this is due to a conflict between nursing staff and the attending physician.
"Nurses need to be aware that they can initiate an ethics consult if they see something that is troubling," says Sulmasy. "This needs to be made known by the ethics committee."