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Posted By: Tracey M. Piparo, PA-C
July 26, 2022
Two months later, Adelaide is back in your primary care office for a routine visit. She has been compliant with all her medications and her heart failure with reduced ejection fraction (HFrEF) is fairly stable. She admits to some decreased activity with dyspnea on exertion and intermittent lower extremity swelling however, these symptoms seem to be controlled with diuretic management and are causing only a small impact on her overall quality of life (QoL). Adelaide mentions to you that she has been thinking about a healthcare proxy, since you mentioned it on her prior visit; she has told her son that she would like to name him as her proxy. Again, this is a great opening that Adelaide has given to you to be able to share some further concerns and continue conversations about goals of care (GOC). Have confidence and take advantage of this time.
Given Adelaide's age and comorbidities, you know that she is at risk for further decline in the future, affecting her overall QoL and ultimately leading to an end-of-life journey. Being able to explain this to her provides her with a gift of information, allowing her some time not only for preparation but for self-reflection and awareness. It is our responsibility as providers to guide patients and make recommendations based on our understanding of various disease processes. One way to encourage Adelaide to consider and begin self-reflection is to share the Five Wishes advance directive resources with her. This can add to future discussions and provide valuable information that can deepen a provider-patient relationship. Ultimately, you will need to discuss code status with Adelaide—and perhaps even with her son, who is now her healthcare proxy—and building a meaningful relationship will assist with this eventual conversation.
For many providers, sharing a POLST (portable medical orders) form with a patient is a bold, scary move. However, because you have fostered a relationship built on honesty, you are able to provide this to Adelaide with a commitment to reviewing it and assisting her with its completion. Again, do not expect these discussions to be completed in 1 visit, as time constraints and emotional reactions all contribute to the complexity of these conversations. However, don't allow time constraints to dissuade you from having these conversations—they are just as important as providing information and treatment for a diagnosed condition.
Death and the journey leading up to it are inevitable. For some, this illustrates a loss of control, but we can help patients and families regain that control by being honest communicators and providing pertinent information and prognostication. In Adelaide's case, honesty includes recognition of the chronic, progressive nature of HFrEF and discussions concerning the associated debility. Encouraging Adelaide to confront questions related to GOC/code status ultimately force her to acknowledge her own mortality, and we have an obligation to support patients in this journey—just as we do when treating any ailment. For many providers, having these conversations with patients means we must confront our own thoughts about mortality. We must recognize that care does not end when we cannot prevent the inevitable, the focus of our care simply changes.
- Aging with Dignity. Five wishes. www.fivewishes.org. Accessed July 26, 2022.
- National POLST. National POLST form: Portable medical order. polst.org/national-form. Accessed July 26, 2022.