In Dr. Galvin’s December 16, 2021 column, he spoke on the topic of advanced directives. I would like to expand on this subject and reinforce the importance of speaking with those you trust to represent your preferences when you are no longer able to speak for yourself.
Dr. Galvin’s recommendation that every adult should complete an advanced directive is sound guidance and offers one a way to avoid unwanted care in the event of serious illness or incapacity. This approach is consistent with recommendations from the Institute of Medicine’s report, “Dying in America.” Despite this, only one in three U.S. adults completed any type of advance directives for end-of-life care. Many Americans remain without a completed advance directive even after thirty years of legislative and research initiatives. Why many Americans don’t take advantage of executing these documents remains elusive.
Sadly, all too often we find ourselves in circumstances we could not have predicated, and your treating physician looks to your family to help make clinical decisions when you are not able to speak for yourself. Your family, friends and trusted loved ones will then be faced with making healthcare decisions. These decisions should be guided by either substituted judgement or best interest standards. This is often not straightforward leaving them to rely on what they infer from your past statements or actions about what you would have reasonably chosen for yourself. In fact, a systematic review revealed that patient-selected, and next-of-kin surrogates incorrectly predict patients’ end-of-life treatment preferences in one third of cases.
Additionally, making treatment decisions can have a negative emotional effect on your surrogate, which can be substantial and last months, perhaps even years. This further supports the recommendation to have those critical conversations Dr. Galvin recommended with your family and loved ones. So, when the time comes, they have a level of confidence in the knowledge that the treatment decisions they make on your behalf are not truly theirs but based on your preferences. Knowing your values and preferences can help lessen the burden associated with making critical decisions, as well as, avoid the potential problem of injecting and prioritizing their own values and beliefs in the decision-making process.
Although healthy people often cannot accurately predict their preferences in the event of future illness having an advance directive can help guide clinicians and your family on care decision that will align with your values and preferences. Your clearly expressed prior preferences should have moral priority and avoid a potential disconnect between care desired and care received.
Joan M. Walker, MS, RN, HEC-C
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