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When the patient wants to go home to die
Respecting patient autonomy safely
It's not unusual for a patient to express a desire to go home when facing the end of life, say two experts interviewed by Medical Ethics Advisor. But the decision-making to allow this can be fraught with complexity, depending on the patient's medical condition and needs.
"I think if people know they're facing the very end, and they know that [for] whatever condition or disease they have . . .the treatment approaches have been exhausted . . . I think it is pretty common for people to prefer to be at their home, with their loved ones, and not having an end-of-life experience that is very technological and involving, for example, being in an intensive care unit with feeding tubes and ventilators and blood draws and limitations on when your family can be with you," says Joseph A. Carrese, MD, MPH, associate professor of medicine at Johns Hopkins University School of Medicine; chair of the ethics committee for Johns Hopkins Bayview Medical Center; as well as a core faculty member for the Johns Hopkins Berman Institute of Bioethics, in Baltimore.
If the patient has the support of family members and services like hospice, being at home to face death "can be really facilitated and managed quite effectively," Carrese says.
J. Vincent Guss, Jr., BCC, D.Min., chaplain of Falcons Landing Air Force Retired Officers Community in Potomac Falls, VA, suggests there are "clear bioethical dimensions around end-of-life decision-making in regard to the disposition and location of these patients."
"All of the major bioethical principles are involved, specifically: autonomy, or the right to self-determination of a patient who has the capacity to make decisions; non-maleficence, or considering the possible medical/emotional/spiritual harm to the patient by agreeing or not agreeing to discharge; beneficence, or the best interest of the patient [as] met by remaining in the hospital to better manage pain relief or by discharging to the patient's own place of security and comfort with family and justice, or utilization of health care resources when lengthening life is not possible and yet denied to others who can benefit from those resources where life and health can be restored," Guss explains.
"In general, most hospitals with which I have been associated will try to honor a dying patient's wishes to discharge home, referring the patient to hospice or palliative care normally offered in the home setting," notes Guss.
Carrese indicates that in his own practice as a primary care physician, "for the past several years, more of my patients have died in their home, with family under home hospice than in the hospital."
A complex case
There are cases when the decision is not made easily, depending on circumstances of the patient's health needs and lack of family support or adequate resources for home health care or hospice.
Carrese explains such a difficult case "a chronically debilitated and bed-bound 86-year-old woman," who despite having no family or financial resources, wished above all considerations to return home. Carrese describes the case in his paper, "Refusal of Care: Patients' Well-being and Physicians' Ethical Obligations," published in JAMA in 2006.1
In the paper, he writes, "Honoring patients' wishes becomes difficult when doing so threatens their well-being."
After being admitted to the hospital "with an acute change of mental status," the woman was ultimately stabilized. The patient wanted at all costs to go directly home from the hospital. A representative of Adult Protective Services, who was involved, felt that from a safety perspective, "the patient should not be at home in her current state," according to the paper.
However, the patient had been determined to be capable of making her own decisions.
"A major challenge in this case is reconciling [two] fundamental ethical obligations that appear to be in direct conflict: 1) the duty to promote a patient's well-being and protect the patient from harm and 2) the duty to respect the wishes of a competent patient," Carrese explains in the discussion in the paper.
"Everyone involved in the patient's care was concerned that her well-being would be threatened and that the potential for harm was great if she returned directly home from her hospitalization," according to the discussion. "At the same time, all involved were troubled by the prospect of overriding her wishes."
This case was "challenging," Carrese says, because his approach to patient decision-making is based on a "shared model that we're both engaged [and] that we're both actively participating."
For cases where a patient is refusing care, Carrese outlines a "systematic" approach that he shares with his medical students, interns, and residents to try to determine, "Well, what's going on here; why is somebody refusing something that we think is going to help them, or protect them from harm? And if we can figure out what that is, sometimes we can come up with a solution that's mutually acceptable."
Avoiding unsafe discharges
Carrese suggests that everyone involved with the health care team "wants to prevent an unsafe discharge, and that was sort of a major stumbling block in this case."
"Everybody was terrified that this woman was going to go home and bad things were going to happen . . . and at our hospital, we work really hard to address this in a team, interdisciplinary fashion," he explains.
Had the patient not had decision-making capacity, the scenario would have been entirely different, and the medical team could have made the decision to keep the patient hospitalized or discharged to a lower-level health care facility.
"Assessing decision-making capacity is an important part of approaching decision-making making sure, in fact, that patients have that ability," he says.
According to Guss, the hospital is in danger of liability if it makes an unsafe discharge.
"It is absolved of liability if it clearly and carefully documents that the patient chooses to leave 'against medical advice,'" Guss notes.