Educate long-term care providers on end-of-life issues
Go outside the walls of hospital or academic setting
EXECUTIVE SUMMARY
There is a need for bioethicists to educate patients and providers at extended care homes on end-of-life issues.
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Families overestimate the success of cardiopulmonary resuscitation.
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Families are often unaware that feeding and swallowing difficulties are a normal part of the dementia trajectory.
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Residents lack information on advance care planning.
At a family council meeting at an long-term care meeting, Bob Parke, BA, BSW, MSW, MHSc, a bioethicist at Toronto's Humber River Hospital, asked the question, "How successful do you think CPR [cardiopulmonary resuscitation] is?" He defined success as the person remaining at the present functional level.
"One spouse put up their hand and stated boldly, 'Eighty percent successful.' It was then I learned that we have a lot of work to do upstream; not in the hospital emergency or later in the ICU [intensive care unit]," says Parke.
With some education and discussion, Parke typically finds families come to understand the actual poor success rate of CPR, and that it is not a therapy for a disease.
Bioethicists should strongly consider "going outside the walls" of the hospital or academic setting to educate patients, providers, and family on end-of-life issues, urges Parke.
He suggests incorporating community care into the rotation of bioethics fellows and students. This can help proactively address resuscitation status, feeding problems or other anticipated health care decisions where a crisis decision could be avoided.
"The vast majority of health care occurs in the community," says Parke. "It is in places such as extended care homes, such as nursing homes, where a lot of work has to be done."
Misconceptions on dementia
Parke often finds that families aren't aware that feeding and swallowing difficulties are a normal part of the dementia trajectory.
"Families know and experience the memory loss, behavior change and increasing frailty; but don't know about feeding and swallowing problems," he explains. Bioethicists can encourage earlier discussion about this, says Parke, so individuals can make an informed decision for their incapable loved ones before a crisis occurs.
During a meeting at one extended care home, the staff acknowledged to Parke that discussions about swallowing and feeding problems at the end stages of dementia did not routinely take place. The physician who oversaw medical care at the home committed to making a focused effort to talk to the families of residents in the home or his practice about the issue.
"In a subsequent meeting, this home reported fewer crisis decisions for feeding tubes being made," says Parke. "Additionally, when a decision is made for a feeding tube insertion, it is a better informed decision."
In this case, a short time spent in a productive meeting led to a change in practice. There was a positive outcome for the person affected by dementia, the family and the health care team.
"Arguably, spending some money upfront on the bioethicist's time saved on the use of emergency departments and other acute care resources required to assess and do a feeding tube insertion," says Parke.
Providers in extended care homes often have misconceptions about the decisionmaking capability of patients with dementia, says Amy M. Corcoran, MD, CMD, FAAHPM, assistant professor of clinical medicine at University of Pennsylvania's Perelman School of Medicine.
"Just because someone has dementia doesn't mean that they cannot be involved in the decision-making, " she says. "Unless it's the very end-stage of dementia, they might be able to have some understanding and participate in the decision-making process."
In-person education rarely occurs
Bioethicists don't typically reach out to provide this type of education in person due in part to the number of extended care homes and lack of time, says Corcoran. She suggests these approaches:
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Reach out to local, regional, and national organizations for long-term care, including the American Medical Directors Association and the American Geriatrics Society;
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Contact administrators and medical directors of extended care homes;
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Invite staff to the hospital for educational inservices;
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Provide inservices that offer nursing or social worker education credits onsite to providers;
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Offer to provide education to surrogate decision-makers of individuals who reside in nursing homes.
Keith M. Swetz, MD, MA, associate professor of medicine at Mayo Clinic in Rochester, MN, recommends identifying frequently encountered ethical dilemmas in local long-term care facilities. Then, make them part of continuous education and improvement.
Staff members at a religious-affiliated extended care facility in the community reported to Swetz that residents lacked information on advance care planning, and had misconceptions about the perceived benefit of dialysis or nutrition. Swetz notes this is one strong example of preventative ethics. Unfortunately, he believes this type of proactive approach doesn't happen as much as it possibly could between bioethicists and extended care facilities.
"We did an inservice, not only with the workers but also the residents of the facility," says Swetz. "We talked about some of the challenges with surrogate decision-making and advance care planning so they could bring up the issue with their individual clinician."
Bioethicists encouraged providers to engage with patients with recurrent hospitalizations, advanced cancer or dementia earlier in the process.
"Then, when the time comes to make the decision, it's not new information," he says. "Even if people's goals change over time, having a discussion you can reference back to is often helpful."
SOURCES
- Amy M. Corcoran, MD, CMD, FAAHPM, Assistant Professor of Clinical Medicine, Perelman School of Medicine, University of Pennsylvania, Philadelphia. E-mail: [email protected].
- Bob Parke, BA, BSW, MSW, MHSc Bioethics, Humber River Hospital, Toronto, Ontario, Canada. E-mail: [email protected].
- Keith M. Swetz, MD, MA, Section of Palliative Medicine, Division of General Internal Medicine, Mayo Clinic, Rochester, MN. Phone: (507) 284-9039. E-mail: [email protected].
