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Facing What's Ahead
By Karen Houppert
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When your parents move from the nursing home into the hospital, things get even more difficult. As end-of-life issues surface, most of us wish we had spoken frankly with our parents about their wishes. Even if we did, it's still a struggle to interpret those wishes correctly when the doctors come into the picture, presenting all their treatment options.
"I believe in euthanasia," says my grandmother, in her gravelly, years-of-smoking voice, "because I don't want what little money I have to all go into the doctors' and nursing homes' pockets." However, when my mother told the surgeon that my grandmother had a "do not resuscitate" order, he countered, "Nobody dies on my shift!"
"Someday I know that I'm probably going to have to really speak up for her, and let her die the way she wants," my mother says. The prospect of having to be so firm and so clear with the doctors worries her.
And rightly so, says Mary Meyer, vice president of special projects at Partnership for Caring: America's Voices for the Dying. This 50-year-old group has discovered that there is resistance among doctors to letting elderly people who are terminally ill die the way they want. According to Morris' book, 90 percent of people say they want to die at home. Yet 80 percent die in medical facilities, in pain and hooked up to tubes.
Palliative and hospice care are becoming more available across the country, but not on a large scale. "The most common scenario is a treatment issue," says Meyer, "where someone is a decision-maker for their aging parent and they're getting a lot of pressure from the nursing home to insert a feeding tube, for example."
Your parent might have expressed a clear wish, but he or she might now be in an advanced stage of dementia and might have stopped eating as the body shuts down in preparation for death, and the nursing home will probably plan to put in a feeding tube. The people pushing for this are most likely trying to do right by their patients. "Giving someone a feeding tube is translated, intentionally and unintentionally, as the same thing as eating and drinking," says Meyer. "But it's not. It's a medical procedure which may not even prolong life, and the patient may now have to be restrained to keep the tube in place, so it can actually make the quality of life worse."
In order to avoid increasing or prolonging your parent's suffering, you will need an advance directive. It must be drawn up before the time it is needed. And in order to get to that point, you will need to be persistent with your parent. Even if he or she is reluctant to talk, try to find a way to steer the conversation toward useful specifics. You might use a recent setback as an opening to ask, for example, if a recurrence were to be more serious, what would he or she want in terms of treatment, and what would be comforting, Morris says. "The death of a friend or acquaintance might be an opportunity for you to ask what your parent would want—'By the way, how about you, Mom?'"
As for you, be prepared to muster all your resources as a forceful advocate for your parents, right up until the end. "The truth is," says Morris, "medicine today always offers one more option. So if it's your mother lying there, could you say, 'No more treatment' if it's only a 30 percent chance of living three more months? You have to be prepared to respond to that kind of quandary, and remember your parent's wishes, which may be less about when life is viable and more about when it's desirable."
Morris describes pressure from nursing home and medical staff as probably the most difficult emotional issue we face. But sympathetic doctors have always been receptive to the signals from a patient's relatives. So find one who will give it to you straight and respect your parent's final wishes, hard as it may be for you to articulate them firmly. Caring for aging parents is a supreme challenge; letting them go is even harder. Especially when someone suggests that we—with all our easily tapped guilt—aren't doing all we should. "Sometimes people feel like the executioner when they let their parents go," Morris says. "But they didn't kill them; the disease killed the person. Their hand in it was only in helping to determine how peaceful and gentle that death would be."
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