Who among us likes to talk about dying?
In a recent blog “Taking Silence for Comprehension,” I talked about how patients may not understand the risks and benefits of treatment options and quality of life considerations and may not know what questions to ask. Similarly, when doctors bring up the subject of end of life care goals, it is not unusual for patients to be silent. I recall a patient saying to me, “I never died before, I don’t know what questions to ask. I really have to think about how I’m going to die.”
Her comment prompted me to suggest a writing exercise based upon the format of the Writing is Good Medicine program, which I created to help patients express their experience in facing illness. I instructed the patient to begin with the words “If I think about dying…” She wrote, “I think about where I’m going to die. Am I going to die at home or am I going to die at the hospital?”
She continued, “What drugs do I want or not want. I’ve had a horrible response to narcotics. Am I going to be able to talk with somebody about using something other than narcotics- a different drug? I know I want to go fast. How fast can they help me go? Can they say how fast they can help me go?”
The patient agreed to share the writing exercise with her oncologist, which led to a frank discussion about her end of life care goals. Although a new treatment stabilized the advance of her cancer at that time, this was one of many conversations about her preferences for care when treatments were no longer effective.
The working relationship between doctor and patient requires an understanding of the patient’s concerns at the time of diagnosis through the trajectory of illness. I have learned that there can be a seamless transition from curative to palliative care when end of life conversations occur within a patient-centered model, emphasizing a patient’s sense of control over their care.
Yet, more often than not, healthcare providers control the process of introducing the subject of end of life care goals and referrals to Hospice, which often takes place only a few weeks before death. When considering the question of who would be best at “controlling” communication about these sensitive issues, I found the results of a recent research project to be very telling. The study used the clinician driven Serious Illness Conversations checklist to compare what patients identified as end of life care goals with actual decisions made when treatments were no longer viable. Although the Serious Illness Conversations documentations indicated preferences for less invasive care (palliative/comfort), patients often chose aggressive treatments at the end of life. This raises the question as to why patients changed their minds, which I’m sure they will investigate.
This brings to mind the complicated process in which healthcare decisions are made, especially with a tough subject such as dying. Are patients aiming to please doctors by telling them what they think they’d like to hear? I can’t say for sure but I have observed that conversations about treatment effects and quality of life concerns that are driven by patients tend to result in more open and honest discussions about choices in end of life care. For me, I hope that whatever someone decides aligns with their needs, values and beliefs. It’s up to us to make that known.