Dying is one of the most difficult subjects for patients and loved ones to talk about. It can also be uncomfortable for healthcare providers who may not be able to evaluate a patient’s willingness to face end-of-life care decisions. In a series of video interviews, I asked patients their thoughts about dying.
Adrienne tells us, “The hard part is that I have the most incredible supportive family but I still have to do this by myself. I wish there was someone out there who had done it, so I can say–come over here and tell me how to do it.”
We hear Fritz say, “I worry more about death” and then quickly corrects himself, “I got it wrong. I worry more about dying than death.”
Pat confides, “I really have to think about how I’m going to die. I’m trying to figure out how I’m going to work that out.”
In my role of medical humanist, I’ve talked with many patients who were transitioning to end-of-life care. These were difficult conversations for patients, their loved ones and the doctors who had to deliver this news. One of the patients was Tom. I had known him from the time of diagnosis and was in the room when his doctor told him that continuing cancer treatments would cause more suffering and not improve his prognosis. The doctor suggested it was time to consider Hospice. We talked afterwards and he seemed to accept that he would soon be facing the end of life.
Since Tom was no longer being scheduled for appointments at the cancer center, I spoke with him on occasion by phone. Then, one day he called and asked if I would come to see him at his home. Upon entering his bedroom, he opened his eyes and said, “Goodbye.” I wasn’t sure if he wanted me to leave or was telling me that he was leaving this world. He explained that he was getting closer to the end of his life and wanted to thank me for helping him navigate his cancer journey. At the conclusion of our conversation, he asked if I could do one more thing—would I communicate to his family he was ready to say goodbye to each of them.
There is no “one size fits all” formula for how one approaches dying. Adrienne is seeking a guide to tell her how to do it. Fritz and Pat are struggling to find peace knowing they are going to die sooner than they expected. Tom has come to accept that he is dying.
In developing materials for SpeakSooner: A Patient’s Guide to Difficult Conversations, it was important to include issues surrounding end-of-life care. The chapter “Courage to Talk About a Tough Subject” is aimed at helping patients identify and communicate preferences to the healthcare team and loved ones. So, when that time comes, patients understand their health status and are better prepared to make end-of-life care decisions that align with their personal values.
In my work as a medical humanist, I have observed that a thoughtful end-of-life communication process can lessen a patient’s physical and emotional suffering and minimize regrets for loved ones. However, making the “right” decision can’t take away the sadness associated with loss.