Death has been sanitized in our culture. We’re rarely exposed to it. Most people, even if they wish to die at home, die in medical environments. Death is no longer treated as a natural experience, and physicians are not exempt from this perspective. It is not uncommon for physicians to feel as if a patient’s death is a personal failure on their part. My perspective is that it’s a continuum and there is plenty that doctors can do to help their patients beyond curative care.
Unless they are in specialized hospice training, most physicians are rarely taught about death and dying in their medical training – how to address it, how to handle it, how to have those hard conversations with patients, and how to support people through the dying process. We, as physicians, need to be able to initiate conversations with our patients about the inevitability of death and how they would like it to be.
We went through a phase where everyone wrote out their birth plans when they were having children. People should have death plans. I also encourage people to ask themselves, before they are in the midst of a medical crisis, “When is enough enough?” People should also know that it is much harder, emotionally, to turn off a machine than to never have it start. It may be worth considering not putting your loved one on a ventilator or starting some other intervention.
How do you know if medical aid in dying is even something that would interest you if you haven’t ever even had a conversation about end-of-life care? Every person has to decide what’s important to them. Not everybody wants the same thing. You can’t assume everyone wants to die at home. Some people are horrified by the idea of having a family member take care of them. Most of us, statistically, will have some sort of winding down process. The don’t ask, don’t tell, approach to dying doesn’t work. Decisions need to be made.
I experienced the hard reality of end-of-life decision making with my husband, Charles, who suffered from longstanding, significant cardiovascular disease, which we had dealt with for years. He started getting seriously ill in March 2010 and died the following year in April. The last year of his life was filled with multiple intensive care unit hospitalizations. He had a blocked artery in one leg and then the other. He suffered a series of heart attacks. Each event seemed to have significant complications and non-resolution of one thing leading to the next.
In October of 2010 I called a friend who was a hospice director, who I had worked with in the past, and asked him when would be the right time to get a palliative care consultation. Without any doubt in his voice he responded, “Now.” My intellectual brain knew that. My heart, however, did not want to hear that.
Starting the conversation about the option of palliative care and hospice was the best thing Charles and I ever did. He wasn’t ready to enroll in hospice initially, but we had multiple conversations about what was important to him. He got to the point where he didn’t want to keep going back to the hospital. Then, in January, while still in the hospital, his heart stopped in the middle of the night. Thankfully, it started itself again. The response from his physicians the next day was, “Let’s put in a pacemaker.” I responded, “Wait, let’s think about where this is going.” That’s when Charles decided he had had enough and he wanted to go home. He enrolled in hospice and that took us through the middle of April.
Before Charles died, he sat us down as a family and we had the “death breakfast talk.” He was very clear and concise about what he wanted and what he didn’t want to the point that, as a family, when he was in the act of dying, we never had to have another discussion about what we were and weren’t going to do. It’s nice that those things were able to be said. We had the gift of not having the elephant in the room.
I am the author of a new book, A Death Lived, which chronicles Charles’ final illness and death, as told through my dual vantage points as physician and wife. I know that we need to be more willing to have the big conversations about end-of-life care and our desires, and I know that it is important to have the conversations now, while there is still time.