One day, each of us will die. I have come to believe that Dylan Thomas had it wrong when he argued that we should “Not go gentle into that good night”, that we should “Rage, rage against the dying of the light”. I now believe that going gentle into that good night is sometimes the definition of a good death. So many factors go into a good death, particularly in a culture as death averse as ours. I cannot say whether or not my uncle had a good death. I can say that he met death on his own terms. That, however, is a topic for another day. Today I want to talk about the people who made the role I played as his health care surrogate easier, because being a surrogate in the U.S. still often means dealing with a medical establishment bent on raging, on defeating death. As I helped my uncle navigate the end of his life, I was fortunate to have three strong advocates supporting me.
My maternal aunt (my uncle’s sister), a nurse, helped me stay clear when I doubted myself or my choices. She reinforced the importance of my role as my uncle’s health care surrogate, and commiserated with all the craziness I faced when dealing with insurance companies, medical providers, long-term care and rehabilitation facilities, our family, and my uncle’s friends. She let me rant. She let me cry. She listened and advised. To my aunt, I say “Thank you for your compassion, your calmness, your willingness to troubleshoot with me, your clarity, your unwavering confidence in me, and your kindness. Doing this without you would have been so much harder.”
My second support person was my friend Andrew who was there for me because he loved me. He asked the hard questions and supported me in making the tough decisions. He helped me stay clear, encouraging me to write things down, so that I would have my own words to help me sort through issues as they arose, so that when my decisions or motives were questioned, I would have clarity for myself. I wrote. Reading what I wrote at various points helped me to remain strong in supporting my uncle’s wishes. To Andrew I say, “Thank you for your insight, your intelligence, your compassion. Thank you for holding me as I cried, for driving me to the airport, for picking my up from the airport, for bringing me flowers, for loving me through this difficult time. You are a treasure.”
My third support person was the case oversight doctor at the rehabilitation hospital. He became my lifeline. He reinforced my uncle’s right to decide, made me aware of what I would face as I advocated for my uncle in the rehabilitation hospital, and helped me negotiate the care decisions we faced. To this physician, I say, “Thank you for helping me reach and maintain clarity, for helping me understand the mindset and motives of health care providers, for preparing me for all the challenges I would face, and for fortifying my commitment to “stay the course”, even when making a different choice would have been easier.”
As I’ve said, I’m a health communication scholar. My academic and personal work prepared me to serve as my uncle’s health care surrogate as he negotiated the end of his life. I had over two decades of my own research. I had my experiences with colleagues and friends from the Nevada Center for Ethics and Health Policy. I had tools others may not have as they take on this role. These resources didn’t change the fact that I continually and painfully second guessed myself throughout this process. They didn’t prepare me for who I was as a person, a niece, helping someone I loved in the process of dying. They didn’t prepare me to negotiate this process with health care providers, family, and friends. My second guessing came mostly from the reactions of my family, my uncle’s friends, and medical providers who disagreed with my uncle’s decisions or questioned my motives. I’m a conscientious person. If people question me or my motives, it kicks me into a process of self-reflection, looking for chinks in my commitment, in my motives. My support people made this process and all the decisions associated with it bearable.
I’m going to spend the rest of this entry talking about the case physician in the rehabilitation hospital. He and I never met in person. Through several phone calls, he understood that my uncle did not want to do anything to prolong his life: no medications, no surgeries, no hospitalizations, no invasive treatments. He also understood my uncle’s desire to be as healthy as he could for the time he had left. The doctor agreed that continuing to regain or at least maintain his strength and physical capacity through physical therapy and occupational therapy were appropriate. He also recommended speech therapy to assess whether there were any swallowing or food management issues that could be improved. He helped me stay logical and pragmatic in the face of significant resistance from health care providers.
I remember at the end of one conversation he told me that this was not going to be easy. He told me I would have to stay strong in the face of well-meaning health care providers who thought my uncle’s decisions were wrong. He told me that well-meaning health care providers would try to “gaslight” me. I asked what he meant. He said, “They will identify crises that will require more extensive medical procedures and hospitalizations. They will want to call ambulances and administer emergency treatments to save or prolong your uncle’s life. They will call you at all hours of the day and night with emergencies you need to make decisions about right then. They will not want you to take time to think”. He concluded, “No matter how they gaslight you and how urgent the emergency they present you with, you need to go down your decision tree. Given his decision and your commitment to advocating for it, except for keeping your uncle comfortable and pain free, you aren’t going to do anything else. Right?”. “No”, I answered, “Good”, he said. “You’re clear. Stay that way. Call me any time you if you need me. I’ll call you when I need you”.
He was right. Nurses called me at all hours of the day and night. The preferred time seemed to be 3 a.m. and each emergency required my approval of immediate hospitalization. Sometimes they called 911 in direct contradiction to the “no 911” directive. Twice they called to inform me that ambulances were on the way. In both cases, I refused them. The first time the nurse said, “That’s what your uncle said. We hoped you’d have more sense.” His advance directive paperwork was misplaced multiple times. The post-it notes the case physican left to reinforce the directives in his chart were either removed from the chart or the workstation, or accidentally covered up, leading to the ordering of multiple tests and procedures I had to then refuse. Late one night they called to tell me my uncle was having mini-seizures. They wanted to hospitalize him for tests. On another occasion, they thought he was throwing blood clots and that the circulation in his right leg had been cut off. On both occasions, I was lucky that the case physician was available to talk me through the crisis. He asked if I would allow surgery. He asked if I would allow any treatment beyond pain medication. My answer was “No”. The physician concluded, that it didn’t matter then if my uncle had had a stroke. Observation would confirm that diagnosis or not. It didn’t matter if he was throwing blood clots or if the circulation in his leg had been compromised. Again, observation would eventually confirm whether or not this was the case. Since we weren’t going to accept any kind of treatment, the diagnosis didn’t matter. Helping me work through the decision path, it became clear that to support my uncle’s wishes, all treatments had to be refused. He helped me understand that the health care providers in the rehabilitation hospital were only doing what they believed best, trying to prolong my uncle’s life.
These situations led me to repeatedly question my uncle’s desire to “let nature take its course” and my desire to support him in that decision. Was this the time? Could he still live a high quality life – if only we did this or that intervention? My experience as a health communication scholar and the support of my advocates allowed me to stay the course in each case, as did my uncle’s unwavering commitment to the path he’d chosen. As loved ones of those who are dying, our hope often leads us to accept medical intervention that will not prolong a quality of life and often only minimally lengthen the duration of life. Being a health care surrogate at end of life is not easy. It is, however, critically important in a culture that is death averse and within the context of a medical establishment that views death as a failure. Sometimes it is appropriate to rage against the dying of the light. At other times, it is a gift to allow a loved one to go gentle into that good night.