Too often, when an ambulance is called to a nursing home, the resident's wishes regarding end-of-life care aren't clear and the staff have differing opinions, leaving paramedics to navigate through the confusion, a new paper suggests.
"For a patient nearing the end of his or her life, transfer from a nursing home to the emergency department can be inappropriate, with potentially negative consequences, but transfer in these circumstances is, regrettably, all too common," UK researchers write in the Emergency Medical Journal.
"People are trained to call emergency services, we learn as children to call 911," said Nancy Berlinger of The Hastings Center, a bioethics research institute in Garrison, New York. But calling emergency services is often the worst medical option for nursing home residents, and antithetical to what they actually desire, said Berlinger, who wasn't involved in the study.
Yet, "without clear and authoritative instructions indicating an alternative, that is likely to happen," she told Reuters Health.
In those cases, first responders get little clarity from staff or medical records, she added.
For the new report, Georgina Murphy-Jones of the London Ambulance Service NHS Trust and Stephen Timmons of the University of Nottingham interviewed six London-based paramedics about challenges they face in nursing homes.
The paramedics often had trouble understanding nursing home residents' wishes, according to Murphy-Jones and Timmons. When a patient no longer had the capacity for decision-making, paramedics found it challenging to balance patients' best interests with pressure from nursing staff, patients' relatives and colleagues.
Records of patients' wishes were "rare" and generally restricted to resuscitation preferences. One paramedic reported, "The care notes would tell me what medication she's on and what type of cancer if you are lucky."
The paramedics wanted to act in patients' perceived best interests, but others' interests often come into play. One paramedic who arranged for a patient to be treated at the nursing home rather than transported to a hospital felt the "staff were unhappy because it meant they had to provide one-to-one care and actually look after someone dying."
Another recalled a typical scenario when relatives oppose the patient's preferences: "So if she's ill and she says she wants to stay at home and the family want her in and I think she's sick enough to go in, she goes in, even though she said she wants to stay."
Kevin Biese, who leads the American Geriatrics Society's emergency medicine collaborative, told Reuters Health that the choice to transport a nursing home resident to the hospital can be a "life and death" decision. Transfer increases the risk of delirium, functional decline and death, he said.
"The reason to go the hospital is to get a therapeutic intervention helpful to the patient and consistent with the patient's wishes," said Biese, of the University of North Carolina at Chapel Hill School of Medicine.
But Biese doesn't blame facility staff. "I am sympathetic to what a hard position they are put in," he said. "For cultural reasons, for liability reasons and for lack of resources, it is really hard for nurses at nursing homes in the U.S. to keep patients at the facility."
Biese and Berlinger both said Americans near the end of life have an advantage that the UK patients in this study did not. In most states, patients can have their doctors fill out a "POLST" form, for Physician Orders for Life Sustaining Treatment.
"For those who are seriously ill, advance directives are not enough," said Susan Tolle, director of the Oregon Health and Science University Center for Ethics in Health Care.
"Patients nearing the end of their lives who wish to set limits on treatments need to turn preferences into action with orders on a POLST," Tolle, who wasn't involved in the new study, told Reuters Health. Theresa Sanderson, administrator of the West Hartford Health and Rehabilitation Center, told Reuters Health that because the study involved just a few paramedics, it can't be considered "true evidence." At her 160-bed facility, "We do not have situations where paramedics are the decision-makers," said Sanderson, who is a member of the American College of Health Care Administrators.
"We have educated our staff about the very real impact of transfer trauma," she said. "We want patients to stay at home and be treated in place."
It's important for all nursing homes to clarify residents' preferences regarding resuscitation and intubation, Berlinger said. Even more important: a facilitated discussion of values and goals that can be transcribed into instructions for every employee. "It is owed to the patient, the family and to that aide at three o'clock in the morning," Berlinger said. "It is owed to the paramedic."
The authors of the study were unable to respond to a request for comment by deadline.