Inch Seventy-Four: The Hard Conversation

The surgeon and writer Atul Gawande gave me a beautiful gift when he brought out his latest work, Being Mortal. It is a book I have read twice now, it is a book I plan to have next to me as I navigate the dim path into the future.

The thrust of Being Mortal is that the medical profession (and we as a society) avoids discussing end of life decisions honestly and openly. Gawande calls for his colleagues to learn to have "the hard conversation" with their patients. He writes of his own shortcomings as a surgeon in having that talk and of learning to do so in part as a response to shepherding his father (also a doctor) through the final months of a terminal illness and realizing, now in the role of family member and not doctor, how the medical profession skirts the topic and how that complicates the ability of the patient to make meaningful personal choices about end of life issues.

As someone with a terminal illness that is increasingly unmanageable, I have taken his message to heart.

Gawande poses the hard conversation as a series of questions for the patient to reflect upon and discuss:

• Does the patient understand her prognosis?
• What fears and concerns does the patient have about the prognosis and disease?
• What goals or activities does the patient want to accomplish or do?
• What is the patient willing to do to achieve those goals?
• What is the patient unwilling to do?

By having an open and honest conversation about the answers to these questions, the patient (and the patient's family and supporters) and the doctor should be better equipped to map the medical way forward towards the inevitable end.

I heartily concur.

I have been off treatment since the third week of May. I will resume treatment, traditional chemotherapy using the drug carfilzomib, in mid-August. The delay has been due not to intransigence on my part. Rather, it took me, my Mayo oncologist, my local oncologist, and a gastroenterologist this long to sort out other medical issues before clearing the way for chemotherapy.

I have loved not being in treatment, despite the advance of the cancer. I am not looking forward to beginning a new line of treatment, but I am resigned to it at this point in my disease's progression. While I wait to start, though, I am being woken up regularly around 5:00 a.m. or so, rocked (albeit gently) awake by being sick. Not violently sick, not nauseated, but sick.

Sick as in "oh, yes, that's cancer."

This morning as I lay in bed, feeling the cancer rock in my body, my mind drifted to Gawande and the difficult conversation. I found myself starting to answer his questions in my head.

Do I understand my prognosis? Yes. I have a terminal illness, I have outlived the statistical prognosis, and while that has given me additional years, that has also put me in a minority class that gets smaller and smaller. Oncologists are not sure how treatment works on long-term patients. In real terms, that means that Death has moved considerably closer, from standing in the front hallway to strolling into the living room, where I am expected to serve him dessert and perhaps an after-dinner brandy.

What fears and concerns do I have? I fear pain. I fear not knowing whether my organs will start failing before the myeloma finishes its work and what that even means. I fear not being able to continue to be able to work to keep my Cadillac insurance in place. I fear the monetary costs. And I fear being at the mercy of other people's schedules and lives.

What goals do I have or what activities do I want to continue for as long as possible? Being with my husband. Being with my children and their families (2500 miles away). Being with those friends and other family members whom I cherish and love. Volunteering at the Legal Clinic. Reading. Writing. Finishing my novel. Walking. Serving my community. Baking. Savoring the change of seasons. Chocolate. Traveling to the extent affordable and physically possible. Continuing my job and seeing some new projects to fruition.

What am I willing to do to achieve/continue those goals and activities? I am willing to continue treatment for now, even though I resent going on traditional chemotherapy. I may be willing to participate in trials. I am more than willing to continue to eat more or less decently (but I am not giving up desserts), to walk as much as possible, to be conscientious of living a healthier lifestyle.

What am I not willing to do to achieve/continue those goals and activities? Another stem cell or bone marrow transplant. Dialysis if my kidneys start failing. Treatment for the sake of treatment if it will not extend my life and will cause my quality of life to deteriorate. In fact, just about anything that causes my quality of life to deteriorate. End of life medical intervention.

Those are my answers from where I stand now. They are not set in concrete, but they are not casual, spur of the moment answers either. My long-suffering oncologist, Tim, is very reluctant to hold any end of life discussions, but he knows with me that he has no choice. We had one earlier this week in which he (finally) admitted that quality of life is the trump card, but then he immediately looked at Warren and flung out, "Trust me. When she says 'I'm done,' I will still have treatment options available!"

I believe his heartfelt appeal fell on deaf ears, albeit ears accompanied by a loving and sad heart. Warren and I have already had some of the hard conversation. You cannot live with the person you love the most and not have it. I will have it with my children when I head west in September. And I will continue to have it with myself when I am awake at 5:00 a.m., when I am listening to the katydids rasp in the summer night and reflect on the coming fall, when I hold life close to my heart and know I have to open my hands and let it go.