This is an excerpt of a post recently published on the Society for PSP’s Forum, an online discussion group. The author is my online friend Ed Plowman. Though he writes about his wife Rose with progressive supranuclear palsy, his comments apply to those nearing the end with any disorder. Ed addresses whether those nearing the end suffer from starvation or thirst.
Robin
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Excerpt of a post by Ed Plowman
Society for PSP Forum
Mon May 05, 2008 11:05 pm
Two hospice doctors and a hospice nurse explained to me what the final days for Rose will be like if she no longer can swallow or take fluid, and remains adamant about no feeding tube or IV hydration. Morphine likely will be administered. (I was with a dying friend recently who was on morphine; he seemed completely normal, not in a “drugged stupor” — a common misconception about the effects of morphine, as I understand it — and we conversed normally for hours with each other and members of his family. He knew the end was near, he seemed relaxed and calm.)
My youngest daughter said she could not stand by while her mother starves to death or dies of thirst. The hospice docs explained that with morphine, that doesn’t happen. The patient has no desire to eat, and often has no sensation of thirst. Moistening the lips and mouth will alleviate discomfort from “dryness.” After the patient stops eating, the body normally will begin the shutdown process; it will produce and release from the pituitary gland endorphins, or endomorphines — a natural form of morphine. These biochemicals give the patient a calming sense of wellbeing. Eventually, in many cases, when the respiratory system begins to shut down, the patient falls asleep, breathing becomes shallow, and the end is peaceful. (That’s how it was with the dying friend I mentioned above.)
The end script is not exactly the same for everyone, of course. But the hospice staff said they’ve not seen any of their patients, many of whom could not eat or drink at the end, die of hunger or thirst as many people commonly envision.
I think it’s important that the family gather together in harmony, compassion, and loving appreciation as the end nears. It wouldn’t hurt to recount a few unforgettable positive memories involving the loved one. Some families sing favorite hymns; someone may feel led to say a prayer of thankfulness for what the loved one has meant in the lives of family members. The loved one with PSP may not be able to speak or even move. But he or she will hear and understand all that is said and done. This can be a precious, joyful time for him or her.
I believe we are fast approaching this time of transition at our house.
ed p.