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We kids were born to old parents: a mother in her forties, a father in his sixties. Our father had already lived a full life — full in all senses, including tragedy — before we were born. Despite his relative age, Dad long remained healthier than the rest of us. Sure, he worried plenty about dying of a heart attack or cancer. He threatened to have an ulcer whenever something upset him. And he took several drugs to lower cholesterol and blood pressure. But, aside from a yearly bout of man flu, his health remained almost miraculously untroubled, especially compared to the rest of his family’s.
Nonetheless, Dad feared death. I never knew another person who feared death the way Dad did. Perhaps it was because of the tragedies in his past. He worried about life-threatening illness constantly. Yet he could not bear to hear about death. He could not bear to hear family members acknowledge their own (or his) mortality. He especially could not bear to hear anyone he cared about mention that — in some circumstances — it might be better to die than live.
Then a strange things happened. Dad’s kidneys began to fail. Perhaps it was because of the combination of cardiovascular drugs he took, nicknamed “the triple whammy” by kidney doctors. Perhaps it was for some other reason. Though he had been a hard-drinking, salt-loving man all his life, he meekly obeyed the low-sodium, low-alcohol diet he was put on. No salt. No salt substitute. One glass of white wine allowed per day. This clearly was the behavior of a man who did not want to die.
The diet, though, was not enough. Not even with drugs, whether swallowed or injected. Gradually, Dad lost his appetite for the wine. He was gradually losing his appetite for the rest of life, too. It became clear that no intervention short of dialysis could save him.
Imagine our surprise when Dad — the man who could not bear to think of death — refused dialysis.
None of us had expected him to make this decision, even in his diminished state. We did our duty in trying to talk him out of his refusal, but we also couldn’t help being somewhat relieved by his decision.
Dad was already suffering more than he had probably ever imagined was possible, and dialysis, while it promised to keep him alive indefinitely, held out no hope of restoring him to his old self. His frailty and dementia were too far advanced to expect much improvement. In many ways, the Dad we knew was already dead. Perhaps he refused dialysis because he, too, sensed the same loss.
Moreover, in refusing dialysis, it seemed to us that Dad had finally beaten the cowardice surrounding death that had dogged him, if not for his whole life, then for all the many years we had known him. In his weakness, he appeared to be finally manning-up, accepting his full humanity, including its mortality. This, too, was a relief to us.
Despite his clearly stated refusal of life-saving treatment, we had to fight the system to get him into hospice care. We especially had to fight to get him hospiced at home, where he could be comfortable, instead of in some strange, disorienting institution, where he would most likely remain miserable for as long as his awareness lasted. As Dad had grown frailer and fallen more often, we had learned that he really, really hated hospitals and nursing facilities. At first, he tried to sneak out of them, though he was usually in no condition to make a successful escape. When he stopped even trying to escape, we knew his old fight was gone.
Well, we won that fight, and Dad died a natural death at home. He couldn’t talk much by the time the home-hospice arrangements were finalized, but when, at last, we could honestly tell him he’d never have to be dragged from his home to the hospital again, he smiled. Broadly; more broadly than I had ever seen him smile when his health was good. In home hospice, Dad was neither refused food nor drink whenever he wanted them. We’d cajole him into eating and drinking – and into getting up once a day for as long as he could – but his refusal had ultimate say. And why shouldn’t it? He was the one facing death, not us.
Hospice is both praised and maligned by conservatives – praised as pro-life when it’s an alternative to assisted suicide, maligned as anti-life in other cases. And indeed, some hospice workers do seem to see their role as hastening their patients’ demise rather than keeping them comfortable while nature takes its course (one nurse assigned to help us with Dad really did seem over-eager for him to die; we got rid of her). But overall, hospice strikes me as a natural, reasonably humane way to die. Certainly more humane and natural than forced survival as non-sentient meat stuffed with tubes and wires in some lonely hospital bed.
But what do you think? What have your experiences with hospice been? Good or bad?