In July and August 2013, I supported my uncle, William Leo Pence, as he died. It was my chance to be there for a family member I loved. It was also an opportunity to put into practice my beliefs about human dignity, choice, and the power to make our own decisions and have them respected at the end of life. It was one of the most grueling things I’ve ever done.
Born November 19, 1928, my uncle was a veteran of the Korean War. He stood 6’6” tall and his personality matched his height. Eight years before his death, he’d had a kidney transplant, but aside from that, and low level medications for slightly elevated cholesterol and blood pressure, he was very healthy. He was bright, independent and active. And, as Frank Sinatra would say, he liked to do things his way.
Once he took himself off all his medications, including the anti-rejection drugs for his kidney, he thought he would die quickly and peacefully. He put his affairs in order and went home to wait. (If you are reading this blog for the first time, the introductory post to this story can be found here: https://dballardreisch.wordpress.com/2014/10/14/the-florence-journals-reflections-on-death-and-dying-the-beginning-of-the-end-sobs-story-sweet-old-bill/) Unfortunately, will is not always the same as outcome, and what my uncle thought would take days, took more than a month. During that time, he gave me his durable power of attorney and I became his health care surrogate. Technically, he shouldn’t have needed a health care surrogate. He had spelled everything out very clearly. His advanced directives were in order: No invasive measures. No lifesaving interventions or life extending treatments. He wanted to live as fully as possible for as long as he had. He just didn’t want anything to make that longer than it needed to be. He did want to continue speech, physical, and occupational therapy so that he could be independent as long as possible. He wanted to live the highest quality of life he could.
During this process, my uncle made a mistake that almost took choice out of his hands. It had been a long, trying day. He was tired. He was uncomfortable. He was bored. He was fed up. Taking himself off medications had not led to the quick, painless decline he had anticipated. He wanted to talk with someone he thought would understand what he was feeling, but who wasn’t personally invested in his situation. He called 911. He wanted to tell someone that would understand that he was ready to die.
My uncle lived in Florida and his admission to a health care professional that he was ready to die led to his emergency admission into the hospital under the Florida Mental Health Act of 1971, the Baker Act. The ambulance came to my uncle’s house, took him to the hospital, and kept him for the full 72 hours allowed by law. He was furious! Unbeknownst to him, in Florida, it is considered against the interests of the state for an individual to be ready to die. The powers that be see it as a small step from being “ready” to die to committing suicide. The Baker Act required that he be assessed by a psychiatrist to determine if he was potentially dangerous to himself, someone else, or whether he had a mental illness. The key question was whether he was a suicide risk. Had they seen him as suicidal, the doctors told me that would have overridden his advanced directives even if he had been considered sane when he made them.
At the hospital, he rallied and convinced the psychiatric staff that he was not suicidal. However, without consulting us, they put him on medications to stabilize his mood and treat what they saw as depression. Now that they were convinced that he was stable emotionally, the question became what to do with him. After the 72 hours, they had to commit him or release him. He could no longer walk unaided and had very little strength. His insurance didn’t cover 24 hour nursing care. His friends, who were in their 80s, couldn’t care for him now that he was largely immobile. I lived 1300 miles away. He couldn’t go home. The doctors told us that they could not send him to a rehabilitation hospital unless he showed them that he wanted to get better. Because his test results were still so good, they didn’t think his decline was steep enough to warrant hospice care. The idea that he wanted to be as healthy and capable as he could as long as he lived, yet refused to take medication was confusing for medical staff. After much discussion, his doctors decided to give him a physical therapy consultation which would determine whether or not he could be placed in a rehabilitation hospital. My uncle used every bit of strength he had and cooperated fully with the PT assessment. They found him compliant, cooperative, and committed to building his strength. They decided to send him to a rehabilitation facility. Now if was my job to find one.