New recommendations for palliative and end-of-life stroke care
Executive Summary
A 2014 statement from the American Heart Association/American Stroke Association gives guidance to providers for how to incorporate good palliative care into their practice, including:
• Addressing uncertainties of prognosis in stroke patients;
• Resolving conflicts involving feeding and artificial nutrition; and
• Transitioning patients to palliative care and/or hospice referrals.
"Profound implications for patients"
The palliative care needs of patients with serious or life-threatening stroke and their families are "enormous," according to a 2014 statement from the American Heart Association/American Stroke Association on palliative and end-of-life care in stroke.1
The statement is "a recognition that there is a lot of palliative care need, but not a lot of explicit guidance from the broader field," says Robert G. Holloway, Jr., MD, MPH, the statement’s lead author. Holloway is professor and chair of University of Rochester (NY)’s Department of Neurology.
The statement gives physicians, nurses, and social workers who care for stroke patients "a road map" on how to incorporate good palliative care into their practice, he says.
"The statement is incredibly comprehensive, relevant, and timely. It should be viewed as a declaration and call to action more than a mere statement," says John G. Carney, MEd, president and CEO of the Center for Practical Bioethics in Kansas City, MO. He says "the implications are huge" for both acute and palliative care providers.
"By and large, the neurological community has good stroke teams in place, but these tend to focus on acute management," says Holloway. "This shines a light on areas of practice that we may not have paid as much attention to."
Here are some specific ethical considerations the statement addresses:
• Methods to address uncertainties of prognosis in stroke patients.
For example, providers may have to explain risk factors involving recovery of swallow after a stroke, or risks and benefits of surgical options, such as a cranioectomy.
• How to build trust in a crisis situation when time is of the essence, and how to interact with surrogate decision makers.
"This happens in other palliative care situations as well. But the stroke population is one of the most ethically complex situations that confront families," Holloway says. Providers may have to resolve conflicts with family members over whether artificial nutrition is the best approach in an elder stroke patient, for example.
• Approaches for the decision-making process involving discontinuing life-sustaining interventions and transitioning patients and families to palliative care and/or hospice referrals.
• Management of specific pain syndromes unique to stroke patients, as well as symptoms such as delirium, anxiety, and cognitive dysfunction that commonly occur after stroke.
"That is probably the most unique element in the statement. It is something that is not found in other palliative care guidelines," Holloway says.
• Interacting with organ procurement organizations.
The guidelines can also help bioethicists who do clinical ethics consultations involving stroke patients, says Holloway. "Ethics consultants deal with these situations all the time, but this provides some details specific to the stroke population," he explains. "This can help them when they talk through these issues, mostly with surrogates."
Palliative care "sorely lacking"
Stroke patients traditionally receive aggressive acute interventions, but many fail to receive palliative care. "The capacity of the vast majority of palliative care programs and hospices to respond to the needs of these patients is sorely lacking," says Carney.
These skill sets are not readily available in community-based settings. "When you examine the outcomes for these patients, the ought’ of embracing these recommendations is clearly evident," says Carney.
There is a need to build the competencies of palliative care providers, he argues, to support stroke patients in non-acute settings. "We have to accept the significant investment that it will take to wed the clinical ethical concerns with common practice," says Carney.
Impact on patients
Carney says that the recommendations could have "profound implications for the care of stroke patients," and that disease burden, high mortality and morbidity, and significant symptomatology should make a palliative care consult automatic rather than optional.
"We should be able to achieve the outcomes expressed by the overwhelming majority of patients — to die at home, untethered, surrounded by family and loved ones," he says.
Hospices are typically well-equipped to provide standard comfort measures for those living with anticipated trajectories of progressive of illness over a predictable period of time. "While they may be good at providing supportive care for those patients, they may be less proficient at providing intensive and aggressive palliative care interventions," says Carney.
Carney points to the use of the terms "intractable" and "refractory" in the statement, which underscores the intensity of palliative care services for this patient population.
"These kinds of high-intensity services may be difficult for many hospices to provide due to limitations they have in resources — and, unfortunately, in skill sets as well," he says, adding that there is a need for excellent hospice and palliative care in the acute care setting.
"Direct admission to hospice inpatient care for highly complex patients in the final stages of dying should not be discounted because it is hard to do," says Carney.
- Holloway RG, Arnold RM, Creutzfeldt CJ, et al. Palliative and end-of-life care in stroke: A statement for healthcare professionals from the American Heart Association/American Stroke Association. Stroke 2014 Mar 27. [Epub ahead of print]
- John G. Carney, MEd, President and CEO, Center for Practical Bioethics, Kansas City, MO. Phone: (816) 979-1353. Fax: (816) 221-2002. E-mail: [email protected].
- Robert G. Holloway, Jr., MD, MPH, Professor and Chair of the Department of Neurology, University of Rochester (NY). Phone: (585) 275-1200.
