Through a research project with the Harvard Center for Primary Care's Innovation Fellows Program, this nurse practitioner student discovered that patients look to their primary care providers for guidance with end-of-life planning.
By Abby Frydryk
“Peter” recently shared his fears and doubts about end-of-life care
for his mother during a discussion at the primary care practice where I work as a research assistant . He said his mother, who had already passed away by the time our discussion took place, had been in denial that the end was approaching. Any time he and his wife tried to talk with her about it, she quickly changed the subject. They wanted to honor her fear but also respect whatever her end-of-life wishes might be. Peter wondered whether denial was common among those close to death.
Peter is a participant in a pilot study taking place at Dr. Nathalie Bloch’s practice and run through the Harvard Medical School Center for Primary Care's Innovation Fellows Program
. The study, led by Dr. Bloch and a team of students and residents, consists of a series of group discussions with patients and their family members regarding death and end-of-life care. The purpose of the study is to create a tailored approach to end-of-life conversations in the primary care setting in order to (1) increase Patient Activation Measure (PAM) scores
; (2) increase patient satisfaction regarding end-of-life conversations; (3) increase patient knowledge and readiness to have end-of-life conversations; and (4) increase the percentage of patients who sign advance directive
and health care proxy
Our first group was diverse — Peter, who is a journalist, and his wife; a retired, single man in his mid-80s; and a reverend and his daughter. Following a quick introduction, we showed a video that detailed one family’s experience with end-of-life planning. We then had patients fill out a values survey, adapted from The Conversation Project
, with their health care proxies. The survey explored issues including quality of life, involvement of loved ones, and independence. We ended by discussing health care proxies, life-sustaining measures
, and advance directives. We encouraged and helped facilitate an active and open discussion throughout the entire session.
Peter’s experience with his mother’s passing was burdensome and motivated him to participate in this study and talk about what a “good death” would mean to him. Another member of the group shared a similar experience — her mother had passed years ago and refused to allow her daughter to see her when the end was near. It was clear that this lack of closure was emotionally taxing and left the daughter confused. She was puzzled by her mother’s request.
Our team noticed that as Peter told his story, he addressed Dr. Bloch. He wanted affirmation from his physician. Peter felt comfortable enough to share this personal experience with Dr. Bloch, likely because they have an established, trustworthy relationship. This encounter confirmed that there is a place for this conversation in primary care. Patients look to their primary care physicians, with whom they have developed a relationship, for guidance through these tough situations.
As we concluded our session, the team perceived that the study participants felt more at ease and grateful for the opportunity to discuss this difficult subject. There was certainly still hesitancy and fear, but there had been a shift. This small group discussion had inspired participants to have the conversation with their loved ones, even those who expressed great intent to avoid it. It was evident that patients left sharing feelings of empowerment and relief.
So why don’t we have these conversations early so that family members can express their end-of-life wishes to their loved ones? Preferably in a comfortable and familiar setting like the primary care doctor’s office. Of course these choices are difficult to make, but they are considerably more stressful when family members have to make them in the intensive care unit or emergency room. In our discussion group, those who had known the wishes of their loved ones prior to their death felt more at peace with their passing. Family physicians and primary care physicians, with their relationships with patients and their families and their knowledge of patients’ medical histories, are in the position to facilitate these conversations. This unique perspective allows the primary care physician to tailor each conversation to the individual patient. And most importantly, it allows them to see that patients’ treatment wishes are honored. By breaking the silence in primary care, we as providers can lift some of the burden before it is too late.
Abby Frydryk is a second-year nurse practitioner student at the MGH Institute of Health Professions in Boston. She is interested in both internal medicine and primary care.
Coordinating care from office to hospital by H. Andrew Selinger, M.D.