This post first appeared in The Finger Lakes Times series, (New York) “DenimSpirit”:
My father was a small city, solo attorney who practiced the law for nearly sixty years in the same town his father practiced dentistry for his entire career. He outlived his wife, my mother, who died when she was eighty-three. Sometime after her death he renewed his health care proxy and made even more explicit his end-of-life wishes.
Late in his eighties he went to a young attorney and asked for help drafting a statement so clear and precise that none of his five children could be confused about his choices. Just shy of his ninety-third birthday his wishes were granted.
My dad fell one morning on his front porch when he went out to pick up the daily newspaper. A resident of a house for mentally disabled adults across the street saw him fall and raised cane until someone called an ambulance. The fall caused an acute subdural hematoma or hemorrhage that incapacitated him and would eventually bring about his death. It was the “eventually” that made his wishes so difficult to fulfill.
In my profession there is no escaping the presence of death. In addition to my own mother’s long and steady decline unto death, I have had the privilege of being present to families as their loved one is dying, and too many times to count, have held the hands of the dying and kissed the foreheads of the dead. The experience of my dad’s dying was different.
According to the very clear wishes when he was of sound mind, in the event he was no longer mentally aware and capable of feeding himself, and with no possibility of recovery, he wanted us to withhold food and water until he died. That kind of death can take up to three weeks, even more for some people. We starved my dad for ten days before the end came.
He was at home, and surrounded by his five children; and we were supported by hospice care. It was a good as it could be. He came in and out of consciousness though never fully coherent. We wet his lips but did not give him anything to drink, even though sometimes it seemed he was asking for it. The professionals assured us that he was not suffering pain as a result of withholding food and water, and he was given morphine regularly. Even so, it felt like we were starving our dad to death.
Fidelity and trust are not the easy feel-good words we often make them out to be.
Our father trusted us to carry out his wishes, no matter how emotionally painful it was for us. We remained faithful to his wishes because they were his wishes, even when we had questions about them. Among the five of his children there were differences of opinion and ethics and faith, but we kept faith with his values and wishes unto his death.
Both of my parents died at home with their children caring for them, supported by home health care and hospice teams. That seems to be the great storybook ending for many people these days, and something I suspect the health care funding system would like to encourage. When my turn comes, I will have made clear that I do not want to die at home. I want my family to be present, grieve, and care for one another rather than be absorbed and burdened by providing for the physical care and comfort of my dying body.
I mention it as something to think about, ahead of time. What we imagine may be best for us, may not be best for those we leave behind.
R. Sue Rhodes says
Thanks for sharing this very personal piece of life. It helps some of us to hear other ways and to feel ok about choosing them, if it becomes possible for us.
Cam Miller says
We may not have control when the time comes but if so, better that we felt the freedom to make choices. Thanks for the reply.
Diane Donato says
I completely agree. My sister chose to not die at home, but rather a hospice. We could spend time with her while others took care of her physical needs, including constant pain management. She knew being at home would be a huge burden for her family.
Cam Miller says
People may make other and, for them, better choices, but it is important that we consider it from many angles ahead of time. Thanks.
Christopher Schaeffer says
Plenty of places to die – the good death at home is not for everyone. I often describe three places to die — home, home-like and hospital. You can make choices some of the time, but not always.
The physical burden of caretaking can be a relief (it’s something to do) and it can be outsourced while getting the benefits of having the dying at home (less travel time). On the other hand, having a husband/father die in your living room is just not right for some families. Ultimately, about a 1/3 of us will have a quick and unexpected death, but the rest will have some choice in the matter.
Cam Miller says
Yes, to each and every point you make. Not sure whether I would choose to go quickly or fade out, but it probably isn’t a choice I would or get to make. Thanks!
Sylvia H Nadler says
Cam this is something that I have spent a lot of time thinking about. I feel as strongly as your dad did about not wanting to be kept alive without the capacity to have a quality of life. Bless you for honoring your father’s wishes. I love and miss you.
Cam Miller says
Love you, and miss you too! I know this topic is close to your heart after what you have been through; and it seems to be near to many folks these days. Peace, and thanks for chiming in!