To the Editor
We appreciate Dr Ioannou’s interest in our recent editorial in which we outlined a model for surrogate decision-making that emphasizes autonomy when considering withdrawal of treatment and beneficence when asked to prolong care. However, as Dr Ioannou thoughtfully highlighted, there are global differences in bereavement practices and beliefs about death which make it challenging to create a uniform paradigm.
One solution that Dr Inannou provided is to require patients to complete an advance directive upon admission to a hospital. While this requirement could certainly help some patients, many patients admitted to the hospital with neurological problems are unable to participate in goals-of-care discussions due to an altered level of consciousness, cognitive and decision-making deficits, or aphasia. In these instances, a surrogate would still be required to make decisions. Interventions to create advance directives at an earlier stage, prior to admission to a hospital, are being implemented in many countries. For example, Australia has launched the Advance Care Planning Australia program to encourage these discussions in the primary care setting. 1 If more patients had advance directives, there would be fewer conflicts related to surrogate decision-making. However, it would still be possible that directives could be vague, as it is impossible to predict every scenario when writing advance directives, or conflict with what clinicians or surrogates view is in the patient's best interest. In these instances, open communication remains the best strategy and the principles of autonomy and beneficence can provide the framework for these discussions.
The international cultural differences that Dr Inannou highlighted exist even between groups in the United States. For example, in focus groups done in the United States, older Black adults had lower rates of advance directives completion than older White adults. 2 Black participants were more present oriented, feared completion of an advance directive could result in withdrawal or withholding of treatment at times when it was not their wish or desire, and saw transitioning to comfort care as giving up. However, research has shown that the clinician’s communication style often has a more powerful influence than individual or class variables. 3 It is important to elicit a patient’s values, beliefs and preferred role in decision-making to navigate these conversations thoughtfully and effectively.
Neurology trainees should be taught about cultural competence, communication, shared decision-making and the need for early discussion of advance directives and end-of-life planning, particularly in patients with neurological disease that are at high risk for deterioration and loss of decision-making capacity.
Footnotes
Author Contributor: Levi Dygert was responsible for drafting the manuscript and final approval of the manuscript. Ariane Lewis was responsible for critical revisions, final approval of the manuscript, and supervision.
Declaration of Conflicting Interests: The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding: The author(s) received no financial support for the research, authorship, and/or publication of this article.
ORCID iDs
Levi Dygert, MD https://orcid.org/0000-0002-7927-3217
Ariane Lewis, MD https://orcid.org/0000-0002-0756-7320
References
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