On July 4, 2013, Bill declared his independence. In the early 2000s, he’d had a kidney transplant. Aside from that, he was an extremely healthy 84 year old. As with most older adults, in the United States, though, he was on multiple medications to manage multiple minor chronic issues. That’s really context for our story. Approximately a year and a half earlier, after his wife’s death, a series of minor mishaps, literally missteps, started the journey that would lead to his declaration. He needed to have several toes removed due to poor circulation, causing significant mobility issues. Recovering from this, he contracted a virus that put him to bed for several weeks. When he was well again, he was extremely weak and needed to build strength to walk again. He got to the point where he could use a walker or a cane to haul his 6 foot 6 inch frame around, and ultimately take several steps unaided. However, his strength and vigor did not return. This frustrated Bill, an extremely independent man.
One evening he stepped on something sharp. He couldn’t see or feel what it was, but his foot bled profusely. His neighbor and good friend Dino, who had been his support person, particularly with activities of daily living, would be over the next morning to assist him, so Bill just put on a Depends, wrapped his foot in a towel and went to bed. The following morning, Dino found him this way, blood soaked towel wrapped around his injured foot, soaked Depends, his friend needing assistance. Dino cleaned Bill up as best he could, washing him, slathering his foot with antibiotic ointment, and bandaging his foot. The bleeding had stopped by then. Dino made Bill breakfast. Bill, not being one to lie idly by, fussed and grumbled about not being able to get around, but Dino persuaded him to stay in bed that morning and give his foot a rest.
The next day, Bill was still in pain and couldn’t put weight on his foot; Dino cleaned and re-bandaged it for him. This happened the next day and the next and the next, until the fifth day when Bill awoke with a fever and Dino recognized that Bill’s foot was infected. Dino called an ambulance to take Bill to the hospital.
Whether the toe removal, the virus, the item Bill stepped on that led to the infection, or the spiral of medical issues set in motion at the hospital when Bill arrived for treatment for his foot were singularly or collectively the last straw, for those who knew him, Bill’s July 4 declaration of independence quickly became a predictable conclusion. Bill was a proud man, an independent man. He’d been in the medical corps during the Korean War. He was not comfortable relying on others.
At the hospital, an inexperienced physician disregarded the information that Bill had had a kidney transplant and prescribed an antibiotic that disrupted his kidney functioning. He told Bill he was sorry, but they would need to do minor surgery to repair the damage. Bill took matters into his own hands, requesting a psychiatric consultation. After a 45 minute consultation, Bill asked the psychiatrist if she thought he was competent to make his own medical decisions. She responded “Absolutely! I have no questions at all about your competence. Why do you ask?” Bill replied, “Because as of today I am taking myself off all my medications. I am also refusing this surgery to repair the damage caused to my kidney by the antibiotics and I don’t want anyone to be able to challenge this decision. Now, please get a piece of paper, we’ll write out each of my medications. I will sign that I refuse to continue them and you will sign that I am competent to do so”. Surprised, the psychiatrist did as Bill requested.
Bill remained calm and resolute as several medical professionals tried to talk him out of this decision. He was done with medical care. With signed paper in hand and fresh advanced directives and against his doctor’s advice, Bill was wheeled out of the hospital. His trusty friend Dino was there to take him home. Bill believed that he would die quickly as he thought that taking himself off the anti-rejection medication for his kidney would lead to his body rejecting the kidney, causing it to shut down. He believed he would die quickly and painlessly. That was not to be the case.
When Bill left the hospital, he believed he was going home to die. His two friends Dino and Kenny disagreed with Bill’s decision and it took him several days to bring them around to at least understanding his way of thinking. Once they were grudgingly on board, Bill called me, his niece, and told me of his decision. I listened quietly. We both shed a few tears. I told him I loved him and would miss him, but that I would fight for his right to decide. Neither of us knew what this would ultimately involve. But our trust and commitment to one another, and to Bill’s right to make this decision, strengthened our resolve to face whatever came next.
Bill got his affairs in and went to bed to wait.