Springtime Blog, 2022.
Process based medicine in Family Practice.
Being Mortal Symposium, Beginning the Conversation about a Holistic Approach to End of Life Care at Whiting Community Church; Whiting, Vermont; March 19, 2022.
Below is a piece I wrote to open the discussion of a local symposium put on by the Whiting Community Church. The church had read the book Being Mortal, and the presenters were asked to respond or reflect on the book. Interestingly, I was six months into mourning my mother’s death as I wrote this. This is my reflection:
Being Mortal by Atul Gawande,MD is a lightning rod for discussion of how we approach death and dying in our culture. It is written from the point of view of a surgeon at a major Boston Medical Center, a place focused on being expert and “fixing” things. I was asked to come to speak to you as a physician, but I have to clarify that I come at this from a very different direction. First off, I come from a family where my sister died when I was almost two and she was 11, so I am from a family where death was not a stranger. The fourth of five children, I was also born to older parents and grew up in a tightly knit community with many members of my extended family around, spanning many generations. I also had two local grandparents who we saw many times a week who died in my adolescent years. I then attended a liberal arts college and Medical school at McGill University where they had a palliative care unit that was active in the late 80’s. I did a residency in Family Practice in Rochester NY at a time where every adult in NY state was expected to complete a full advance directive form at every physical. For me, death is not foreign or a topic to be avoided. And because of growing up in a strong faith community, death is also not something that I fear.
I work in Bristol, VT at my own independent direct primary care practice, Fiddlehead Family Health Care, (Fiddleheadmd.com) and have been a family physician in the town of Bristol since 1993. The newest incarnation of my practice, the direct primary care practice, is almost two years old. Family physicians follow the life cycle. I am a fan of saying we are cradle to grave, and for the first 10 years of my practice, I delivered babies, about four a month, in addition to having a busy family practice. Having been in the same community for almost 30 years, I will say that I am following the life cycle as in the last 2 years, I have had about 20 hospice deaths. If I was uncomfortable with the topic, I have been given ample opportunity to become comfortable with it.
Recently, one of my elderly patients followed up with me from a hospitalization for a stroke. She is 93 and remarkably independent. She had lost the ability to speak for a few days, but was clearly communicating with me when she came into my office. “That young hospitalist Doc gave me a death sentence!” she exclaimed plopping into a chair in my office. I chuckled, saying, “last I heard, none of us gets out of here alive. We all have a death sentence.” Her hospital based physician had reviewed her scans with her and told her that there was nothing he could do to change the course of her illness. She had “gotten a death sentence.” But really, in my way of seeing, she had gotten a reminder that now is the time to make any adjustments she wanted to make in her life. Now was the time to make sure her medical affairs were in order (blood thinners, blood pressure, blood sugar, all in control, exercise, diet, sleep and stress all managed as well as we could, and support in place for anything that she might be needing in the near future. NOW was the time to clarify a DNR or any other portion of her advance directive. NOW was the time to have clarifying discussions with her children about what would happen if she needed more support and what her priorities would be about being at home or in assisted care. This was a reminder and an OPPORTUNITY. This was the opposite of a death sentence.
By turning the table on the topic of dying and reminding ourselves that we are supposed to be doing our best at LIVING and asking clarifying questions about what makes life worth living for each separate individual, we cut to the most important topic. Dr. Gawande focuses on this beautifully in his book, and each of us gets to focus on this with our loved ones. Living longer has made this more of a topic of conversation, as in the past, more people died younger without much conversation or planning. Many of the patients of mine who have died recently were extremely well known to me; I had been their physician for over 25 years. For me those years helped me know what to expect and gave me years to hound them about thinking about their advance directives and end of life care plan. No matter what, that discussion still needed to happen formally at some point, and I would say that I have generally started the discussion more than 6 months ahead of the time of their death. Knowing their priorities especially concerning longevity vs capability helped make important medical discussions easier.
I recently had the opportunity to live this one out personally. My mother died in September of 2021. Mom was 95 and lived alone in the house my father had built for them in 1946 since his death in 2007. She was tough and independent, and last year had compression fractures that had made her a bit more frail. For a few months, she had to have help doing lifting and more aggressive house keeping, six hours a week of in-home care is all she could accept without becoming frustrated at the caregivers wasting her time. She had recovered from all this by summer and was fully independent again, but the memory of dependence was very fresh. ON August 31, I got the call that she was in need of hospitalization, as her oxygen saturation was very low, under 50%. She had gotten COVID 19 from someone who had come into her home to “help” her organize her pills. Because I am a physician, my home town hospital in Maine made special allowances for my youngest brother and I to spend many hours with her on the Covid ward. When she was not improving, after 4 days in the ICU, she asked to have a conversation with the hospitalist. He noted that her inflammatory markers were worsening, but her oxygen saturation was stable, and that she was still needing the high flow oxygen to maintain normal saturations, with her oxygen saturation plummeting into the 50’s if she removed the oxygen for a moment. She asked how long he thought she would be in the ICU, and he said at least 10 more days, followed by weeks on the floor and in patient rehab, and that she was likely looking at life with supplemental oxygen. She knew this meant she would never leave the hospital independently and asked that the physician call in her family. He offered to set up a hospice visit the next morning. She asked him to do it that night. She took off her high flow oxygen after an hour with each of her children (three of us were there) and had courage I cannot even imagine, as the hospice drug doses in Maine were far less generous than I am accustomed to, and she did suffer air hunger and anxiety. But she died by nightfall the next day with me holding her hand, singing and praying the prayers we said every night of my childhood, having chosen death over dependence. She did not want her children taking responsibility for caring for her at the expense of their own families. She had grown up on a farm and knew there was a rhythm of life, a cycle not to be tampered with. While none of her children were surprised, we did not know for certain she would make that choice until it was accomplished.
The key here was leaving room for the questions, allowing the answers to be unique and respecting them, giving autonomy in end-of -life to the individual. I think this is what is at the basis of Dr. Gawande’s book. Be curious. Ask the questions. Respect the answers. Consider quality of life as well as quantity, and focus on the living, because in the end, that is all that matters. Write your advance directive. You can do that for free on the VERMONT ETHICS NETWORK website. And in Vermont , we are blessed with wonderful hospice programs. USE THEM. Talk to your families about your needs for support and build community support into your life proactively, before there is an emergency. In the conversation and the planning, there will be much better understanding for all involved. And hopefully, there will be less fear. Yes, we are mortal, and life is always lethal. It is our job to accept that fact with grace and to be prepared to make it as peaceful as we can. The crux here is communication.