The loss of control over so many aspects of our lives can be daunting as we age. What seemed unlimited, like time and energy, begins to ebb away, and our bodies don't always preform like we want. Something that used to be so simple, now takes effort and at times causes discomfort. The idea of running errands or fixing a meal can feel like an insurmountable task.
It is no wonder that as we near the end of our lives, this loss of strength and energy to do daily things, ultimately affects our very interest in these tasks, leaving us often homebound and isolated. To survive, we must rely on others to begin to fill in the gaps. One by one roles and autonomy are stripped away.
As if this weren't hard enough, much of our identity is based on objective things like what job we have, or what tasks we perform. Over a lifetime these roles solidify, becoming like a second skin. This important sense of self, amidst our environment is a compass really, helping to direct our lives. To lose that can feel like being dropped in a foreign land with an illegible map.
The point of this isn't meant to be bleak, but to first and foremost inspire compassion for those who are struggling with end of life issues around loss of control and identity, and secondly to offer a way to help.
There is a tool we use in hospice that is meant to directly counteract the downward depressive slide that comes from the loss of sense of self. Officially it is known as dignity therapy, and it has been shown in research studies to increase dignity, sense of purpose, sense of meaning and will to live. It has also been shown to decrease suffering and depression.
At its core, dignity therapy really is looking back at life in a narrative way. It gives people the ability to tell their story through directed questioning. When facing death, the time spent reflecting on the past allows a chance to reinterpret and reframe things.
In true dignity therapy, the narrative is recorded and transcribed through a series of encounters, creating a document to serve as a legacy that can be passed on and shared with whomever that patient wants. The benefits then are two fold, the patient has a chance to look back at the important events of their life, which inherently adds meaning and dignity, but also creates something that will outlast themselves, thus easing the existential stress of non -existence.
Some examples of dignity therapy questions are, "What are the most important roles you have played in life?" "What are your most important accomplishments, and what do you feel most proud of?", or "What have you learned about life that you would want to pass along to others?"
Although dignity therapy is a formal therapy, there is a message here for us all; telling the story of our lives, especially near the end is healing. As family and friends of people who might be nearing the end of life, we can be empowered to informally do dignity therapy. Our job is simple; show up, ask questions, and of course, listen.
Dr. Amy Clarkson is the medical director for South Wind Hospice.