Stories have lives that go far beyond the lifetime of any of us who listen to them or retell them. As a child, I remember loving to hear stories told by my family members. My parents used to spend time reading to me before bed, and I remember that I loved to hear the words my father or mother would read to because I would imagine what was happening as pictures in my mind. Green Eggs and Ham still evokes memories of looking at the pictures that Dr. Seuss drew of Sam I Am using all his persuasive power to convince his naysaying friend of how good green eggs and harm really are.
We walk into stories as we become the people we are meant to be, and stories have tremendous power to teach us who we are. In the clinical space, stories also shape how we see ourselves, others, and the care we practice. Stories can be used skillfully to expose our blindspots so that we can improve as caregivers and make the world a more loving and caring place. The stories we walk into teach us how we might see and feel in relation to so many things that are important and vital in our lives. And yet, one question keeps coming up for me, how can we see beyond the ways that the stories we walk into teach us to see and feel? How can we practice compassion that connects with others and goes beyond who we see ourselves to be?
For instance, my group of chaplains in training is reading a book about Nancy Cruzan. Cruzan lost her ability to think in a tragic auto accident that caused severe damage to her neocortex. She was left in a contractured state with minimal reflexes and no ability to respond to her environment. After a period of several years of tending to her, the Cruzan family decided that they no longer wanted to keep her alive with a feeding tube. Her father Joe learned as much as he could about legal policy in Missouri, where Nancy and her family lived. Joe and Joyce Cruzan, Nancy’s mother, undertook the grave responsibility of battling a legal and medical system with an array of legal and medical experts who thought they knew the moral ground over which the Cruzans journeyed. These experts disallowed removing the gastronomy tube because the State of Missouri did not allow starving a person to death.
The most fascinating thing about this story to me is how powerful actors like politicians, medical experts, legal experts, lawyers, and judges impose the politics of the morality of life and death on this family’s ability to choose when artificial means to nourish the body should be removed. Missouri’s living will statute at the time considered gastronomy tubes as separate from artificial ventilation, despite the fact that both types of treatment involved medical procedures to initiate. Starving a person by removing the feeding tube was inconsistent with the state’s stance on a family’s right to remove life sustaining measures. Nancy Cruzan was unable to do anything in response to her environment and was “gone” in the view of all her family. Moreover, it was inconsistent with her personality, according to her family, to want to be kept in this state. And yet it took many years of legal process to remove the feeding tube.
It may seem odd to find this kind of reflection on a website devoted to mindful dementia care. I want to say it here now to be clear, when we come to this work mindfully, we will find that our ability to feel intuitively what is skillful in each circumstance will depend less and less on the big stories of “right” and “wrong” we walk into and more and more on the needs of the sentient beings in the moment in which we find ourselves. We might see the limits of the stories we tell ourselves in myriad ways. From this point of seeing ourselves and our stories in a compassionate and self-reflexive light, we might ask simple questions. What did Nancy Cruzan need? I can’t hope to really know, but I trust Joe Cruzan and his family did. They knew the woman beyond the words that could be narrated to describe her. They were in touch with her spirit, and they knew when to let her go.
One last practical thing is worth bringing up here. You might consider making a living will for yourself and those that you love. I have one, though it needs to be updated. The benefit of having a living will or advance care planning of some form is that it expresses your wishes directly so that the legal system knows what to do when you cannot speak for yourself. And a living will takes the burden of choosing to remove life support, even when your health care surrogate knows it is what you want, for the particular individual making decisions for you. Because even when we know someone doesn’t want to go on living on life support, it often brings up guilt in us when we remove such support as the most compassionate action given the circumstances.
