I have found that many patients feel the need to protect their loved ones from hearing about the physical and emotional ordeal of living with serious illness. An example of this dynamic emerged in the video that accompanies SpeakSooner: A Patient’s Guide to Difficult Conversations where Laura Byrne tells us, “I don’t want anyone to think that I gave up. And, I have that fear because I have a choice to make.”
To appreciate the meaning of that disclosure, let me take you into Laura’s home on the day of the interview. When we arrived, she introduced us to her father and explained that he was staying with her to help with caregiving. As we were about to start filming, I asked Laura if she would prefer her father to leave the room or stay for the interview. She said that he could listen but not in her line of sight.
Laura described a series of unsuccessful surgeries, long-term hospitalizations and debilitating treatments dating back many years, noting the sad realization that she had a poor prognosis. She was no longer in active treatment and was now under the care of a palliative care physician to help with managing breathing problems, nutrition, hydration and pain. In tears, she explained that there was no prospect of an improved quality of life. Understanding what the future would look like, she talked openly about not wanting to continue living in this compromised physical and emotional state but worried that her father and son would interpret this as a sign that they were not worth living for. Laura’s father heard everything. However, being out of her line of sight she could not see his reaction.
As the video team was packing the equipment for the ride back to Bennington, her father asked if he could walk with me to my car. He told me that Laura had never spoken with him about the emotional anguish she was experiencing over declining health and poor quality of life. Her father was visibly troubled. Until that day, he had not understood his daughter’s reasoning to tolerate her agonizing condition. He thanked me for bringing this revelation to his attention.
A few weeks later I received an email from the palliative care doctor explaining that Laura had spoken with her father and son and how they understood and accepted her wish not to “live” in a deeply compromised physical and emotional state with no prospect of an improved quality of life. With their loving support, she entered a residential Hospice program. I called Laura to lend my support and she invited me to visit at the facility. I sat by the bedside as she talked about the conversation with her family, which brought closure to her fear of disappointing them. As I was about to leave she handed me her diary, expressing the hope it could be useful in educating other patients. Laura died 2 weeks later.
To hear Laura talk about “not wanting anyone to think that she gave up,” view the video that accompanies the “Understanding Your Choices” chapter in SpeakSooner: A Patient’s Guide to Difficult Conversations. What she discloses about her need to protect family is a powerful lesson on how open and honest communication can lead to decisions about care that could lessen physical and emotional suffering for patients and minimize regrets for loved ones.
Laura’s candor still takes my breath away.