I have had the privilege twice in my life of being at the bedside of loved ones as they drew their last breath. The journeys of these two people – one who died much too young and the other, who though old, died much too early – were examples of knowing that death was coming. The exact day and hour weren’t known of course, but both of them were fighting incurable diseases that would eventually take them to the end of life, allowing them to plan and prepare to a certain extent. For both of them, it was important to have some input over the circumstances of their final hours – to maintain a sense of dignity and choice. We often hear the term Death with Dignity – as a desire, as a movement, and as an organization focused on policy and legislation. This month’s wAGING change blog posts will focus on what it means to accomplish dignity not just at the moment of death, but in the process of dying.
The Death with Dignity National Center (deathwithdignity.org), based in Oregon, surveyed its social media followers in 2017 about the meaning of death with dignity. Of the responses I read, four main themes stood out: personal choice, avoidance of suffering, a sense of control, and quality of life over quantity of years. These same values hold true in many of the conversations I have had with older adults about dying, but more nuanced descriptions have been helpful to add to my understanding. I keep being revisited by the words of a wonderfully thoughtful woman who has spoken with my students on several occasions about end-of-life issues. “The thing is,” she told them “when I go into the hospital because of an injury or illness, I know that this is the best things are going to be when it’s over, and likely not even this good!” As she spoke, she gestured to her body, still strong and flexible in her late 70s, but marked by some of the typical signs of human aging. She was saying, in essence, that the view of death when one has experienced decline is different than when one views the world from a less experienced perspective. She went on to explain that it gives her pause to think that the aftermath of an illness or injury might be less mobility, more pain, less mental agility, or more of the daily struggles with functioning than she has already known. Her point is that she would like to choose, to the extent possible, what degree of those changes she accepts into her life going forward. And her perspective comes from being farther down that path already.
I think about these issues as dying with dignity as opposed to death with dignity because it is not in the moment that we pass from this existence that dignity is most invoked. It is instead, in the conversations with family and friends about our final wishes, in the ways we talk with our trusted healthcare providers, in the completion of our living wills, and most especially in the ways in which we live in order to bring dignity and meaning to our dying. We are all in different seasons of life, but all moving towards Winter at some point. Not a Winter that will once again give way to Spring, but instead a Winter that will conclude the cycle of life as we have known it, and as others have known us. Of course, we would seek dignity in that passage. To be able to choose, to avoid suffering, to maintain control, and to capture quality over quantity. For many, the options aren’t accessible or death comes unexpectedly, but for those of us who are farther down the path of seasons but still dying rather than at the point of death, we have now to prepare for the ultimate Winter. ©2020 WomackJL: Professor OS&OT/Allied Health Sciences/University of North Carolina at Chapel Hill