Throughout the cancer journey, conversations between patients and oncologists typically focus on treatment and the hope for cure, or a meaningful prolongation of life, and the relief of symptoms. Broaching difficult topics, such as the possibility of a recurrence or the failure of treatment to control the disease, is often postponed because it is uncomfortable for both the patient and the doctor.
I experienced this discomfort acutely earlier this week in my oncology clinic. I was meeting with a patient and her sister for the second time, as she had previously been under the care of a colleague. We immersed ourselves in talking about the immediate problems caused by her metastatic cancer, without stopping for a moment to consider the bigger picture.
We dealt efficiently with symptoms, completed forms for her employer, ordered her next cycle of oral chemotherapy, and made plans for a follow-up visit. And then, as she was packing up her things to leave, she asked if I had a few minutes to speak privately with her sister. As soon as she left the room, her sister asked all of the questions we had expertly avoided during the preceding 20-minute visit: “How long does she have? What can we expect? How can we start the conversation about her prognosis and wishes within our family? Who will guide us when things get worse?” Tears flowed as we talked about how she could help her sister and how we, her sister’s professional oncology team, could best provide support and guidance.
Health-related planning, such as designating a health care proxy or establishing a durable power of attorney, is not really very different from buying insurance to protect our homes and our investments. And yet, many of us ignore or avoid it for as long as we can.
A recent survey asked American adults of all ages whether they had spoken with a loved one about their wishes for end-of-life medical treatment. Among those who had not, the most important reasons were: “don’t want to think about it” or “family members don’t want to discuss.”
There are many reasons for avoiding difficult conversations, the most common is that people don’t feel ready or know how to get started. Or they may feel it is too depressing or not the right time. Yet everyone has a story about losing someone, and too many people regret not having talked about what’s important in life while they still had a chance.
Most people say that they want to talk with their doctor about their wishes for medical treatment toward the end of life, but very few report actually having this conversation. It is typically a change in a person’s condition or a medical crisis (such as an accident or deterioration in the case of a person living with a chronic illness) that forces everybody to start talking and planning. Talking sooner has the advantage of allowing everyone involved to explore different ideas without feeling pressured to make a decision.
Planning for end-of-life care is an iterative process, a series of linked conversations that ideally take place over many months and years, perhaps decades. This process brings family members, friends, and their respective doctors together in a way that honors life and allows individuals to preserve their dignity until they take their last breath.