I expect this will be my last post for this blog. Thank you to Psychology Today for providing this small soapbox and to you for reading. I am planning to take my Death with Dignity medication soon, unless I die spontaneously before then. I have limited energy to write, so I am not going to spend it justifying my decision by describing how poor my quality of life has become. You'll just have to trust that my quality of life has become unacceptable to me and that I am a reasonable person. As I've said before, I am so glad that I happen to live in one of the two states that allows me to legally end my suffering (that was not on my list of considerations when I moved to Washington). Otherwise I guess they would just keep increasing my dosage of painkillers until I became comatose and then starved to death while someone else wiped my butt. I don't doubt that for some families that feels like meaningful time, but I would rather spare myself and my caregivers (and I would note that psychology research shows that people who make it through an unpleasant and unnecessary experience often feel that it would be valuable for others to go through it as well, hence the perseverance of hazing rituals, sleep deprivation in medical training, etc.).
Instead, I would like to talk about something else: the "dying well" movement and the analogy I see to the "natural childbirth" movement. Birth and death. Two important transitions in the lifespan. I teach lifespan developmental psychology, but before this past year I didn't feel like an expert on the topic of dying. I knew what the textbooks said, but that's about it. I did feel like an expert on the early part of the lifespan, having both read the literature and worked with children in a variety of roles, including camp counselor, Big Brother, researcher, preschool teacher, and parent.
So I knew about the "natural childbirth" movement, which began before my own birth (my mom tells of having to travel for my birth to the only hospital in our state of Maine that allowed Lamaze), but I only lately learned about the "dying well" movement, which is more recent. Some of the dying well movement centers around Dr. Ira Byock, who has a book and a website by that name (http://www.dyingwell.org/), but I see it as part of a broader and growing discussion of end-of-life issues in our society, driven by factors such as an aging population, advances in medical technology, and concerns about health care costs.
Birth and death. Two natural parts of the lifespan that people felt had been made artificial, that they wanted to reclaim from the medical monolith. In both cases, people wanted to pull back the Wizard's sterile curtain and give expectant mothers or dying patients more say over the process. In both cases, one basic decision was location: home or hospital? Another issue in both cases was painkilling drugs. Natural childbirth advocates encouraged women to not assume that they needed painkillers to get through labor. Advocates of dying well argued that physical pain could always be controlled (although perhaps at the cost of mental clarity) and that traditional medical concerns about addiction were inappropriate. Both movements encouraged people to discuss and document their wishes in advance (hence "birth plans," "living wills," etc.).
Overall, I think both of these movements are good things that have produced important reforms in medical practice. In both cases, however, I think there are potential pitfalls. In idealizing the "good birth" and the "good death," we risk setting people up for disappointment when the process does not go as planned. When a woman needs an epidural and a Cesarean to deliver a healthy baby, she should not be made to feel like a failure. We also sometimes take for granted the benefits of medical advancements - the fact that women and children are much less likely to die during childbirth now than in our "natural" past, or the fact that many medical conditions have gone from "typically terminal" to "typically curable."
One version of the idealization of the dying process are the stories in which someone confronts but conquers a terminal condition. Since I was diagnosed with terminal cancer, I have heard many stories of people who were given X months to live but lived much longer or haven't died yet. Often the miraculous recovery is attributed to a particular program (e.g., of nutritional supplements whose effectiveness has been suppressed by the medical establishment). Sometimes it is attributed to the person's personal qualities (e.g., his or her sunny attitude or strength of will).
But what about those of us, in fact the majority of us, who will not be miracle success stories? Should we feel guilty? Did we lack the right personal qualities (our attitudes weren't sunny enough, our wills weren't strong enough)? Were we fools to listen to our doctors and not the claims of the miracle cure purveyors? (It is tempting to believe that changing my diet could make the cancer disappear.)
My point is not that success stories are bad. They can provide hope when hope is hard to come by. My point is that we need to respect each person's particular path. Average survival time from my diagnosis is around two years. I will survive only about half of that. But I do not feel like a failure. I did the best I could with the time that I had. I may not look like a success as a dot on a graph, but I feel like one. Birth and death may not be pretty or pleasant, but we can still be proud of how we handle them.
Peace and love,