Sitting on the couch one evening, my husband turned to me and said, “when I die, I want to be cremated, OK?”
“I know, honey,” I said, “but what do you want me to do with your ashes?”
We are both in our 30s and healthy. However, these exchanges occur frequently, whenever something — a tragedy or simple introspection – prompts one of us to confirm that the other has a clear understanding of their wishes. So far neither of us has significantly altered our preferences, but we continue to check in to ensure that is the case.
After some thought, my husband decided that he would like his ashes scattered on the mountain in Vermont where he proposed and we later married. Then, we went back to reading or watching TV or whatever we were doing because it was just a typical Thursday night.
Maybe we talk about these topics so easily because I am trained as a hospice and palliative care physician. Helping families whose stress and sadness is compounded by having to make decisions without knowing what their loved one would want, might inspire most people to start talking. The paperwork part of end-of-life planning involves designating a power of attorney and, if appropriate, filling out a MOLST form. However, true planning involves topics that are broader and less well-defined. Where and how would you like to spend your final days if you knew you were dying? How aggressively would you want doctors to intervene if the possibility of survival were remote? Where do you want to be when you die? Where do you not want to be?
My mother took this several steps further. Watching her own mother desiccated by Alzheimer’s disease, she became an outspoken supporter of Dr. Kevorkian and physician-assisted suicide. She spoke in detail about her plans to take her own life if she ever showed signs of the disease. “I’ll run my car with the garage door closed,” she told me repeatedly, shaking her fist at the future she feared was inscribed in her genes.
I was 12 when she began describing her plans. I recall our discussions vividly, as I do the nightmares that followed. In the dreams, she would announce that she had decided to commit suicide before any symptoms of dementia arose. I begged her to reconsider, certain that she was cutting short what might be years of remaining good time. No matter what, I did not want to lose my mother. I especially did not want her taken from me earlier than necessary.
As it happened, she did develop Alzheimer’s. She is now 74 years old and in the moderate stages of dementia with the inability to perform complex tasks, unawareness of the date, time, or season, and increasing difficulty recognizing family members, including me. When her symptoms appeared, she underwent medical and neuropsychiatric testing. Then, on the day that she and my father were scheduled to receive the results, she decided not to go with him to the visit. It might have been denial, or it might have been her decision to proceed without dwelling on the facts. Either way, she never spoke of it again.
For a long time, I have been angry at the disease, at her (unfairly, but no less intensely) for developing it, and at her for exposing me to her horrific plans. However, I am beginning to realize that my mother gave me a gift. Though perhaps presented crudely, and earlier than appropriate, she shared with me her wishes about the end of life. She told me in no uncertain terms that she did not want to experience what her mother did. Now, when my father and I discuss how best to care for her – whether to discontinue the dementia medications that no longer confer benefit or the annual mammogram to screen for recurrence of the breast cancer she had 16 years ago – we have as our guide the sentiments she shared consistently and repeatedly years ago. In palliative care, when we talk with families who need to make decisions for incapacitated loved ones, we use the "empty chair" technique to help them understand that their decisions should be based on the wishes of the patient, not their own. "If your mother were sitting in this empty chair right now,” we say, “what would she choose?" I do not need to enact this scenario for my mother; she already told me.
My husband and I speak often about what we want out of life: our goals for ourselves and our family, our fears, how we would like to spend our last days, and how we want our bodies to be handled after death. We view this planning the same way we view buying our first home or saving for our children’s educations – they are difficult tasks, but ones that we hope will benefit our family. So we talk and we plan based on our current reality and hopes for the future, understanding that these can and will evolve over time.
I try to do the same with my patients. Whenever there is a change in clinical status or a new piece of information (such as evidence of recurrence or progression), I take the time to review with them and their families the course of their disease, including how this development might influence our next steps – how we treat and what we hope for. I even introduce these types of conversations during my initial meeting with families whose family member has received a diagnosis with an exceedingly poor prognosis. Decisions do not need to be made during each one of these discussions, and in many instances, the decision is to continue the same intensity of treatment with the same goals. However, that process of checking in ensures that everyone remains on the same page. If patients or families are unwilling to discuss their goals of care with me or another member of the team, I still encourage them to discuss them with one another.
In pediatrics, we know that parents often delay talking to their children about sex such that many teenagers have had their first sexual encounter before the topic – and the values and information that parents wish to impart – has been broached at home. So we counsel parents and guardians to begin the discussion earlier than they think they need to. If you wait until you feel ready, we tell them, it will be too late. The same, I believe, is true of talking about what we want at the end of life.
Rebecca MacDonell-Yilmaz, MD is a fellow in pediatric hematology/oncology at Hasbro Children's Hospital/Brown University and is board certified in hospice & palliative medicine. Her writing has appeared in Pediatrics, JAMA, Annals of Internal Medicine, Journal of the American Geriatrics Society, Ars Medica, and the Huffington Post. She lives in Rhode Island with her husband and two children.
