My Mother’s Choices

My mother usually reads these columns. The newspaper is delivered to her room at Jacksonville Skilled Nursing. She doesn’t comment on my work, but I think she’s proud of her son, the writer.

She won’t be reading this column. After two years of ups and downs at the nursing home, I think she’s finally dying. I say finally, because she told me long ago that she had had enough. Life held only the faintest of joys to balance her deep miseries: loss of memory, feelings of constant confusion, lack of ability to help herself. Then came incontinence and its attendant shame. Next her food had to be ground up.

Lately she is not interested in eating or drinking. She stays in bed with her eyes shut, sleeping most of the day. Nothing left to live for.

If she could take a pill and pass away, would she? I don’t know and won’t ask. Probably not, because she has always let others make the big decisions for her. So she’s waiting for natural processes to run their course.

But other people face much more difficult circumstances at the end of their lives. Some are in constant pain. Some know they will die very soon from incurable diseases. How much control should they be allowed to have over their own lives and deaths?

Christianity, Judaism and Islam all frown on suicide, but religious authorities have shifted their positions on whether it is prohibited. For example, the Catholic Church labels suicide as a sin. The Catechism of the Catholic Church says: “We are stewards, not owners, of the life God has entrusted to us. It is not ours to dispose of.” Further, “Voluntary co-operation in suicide is contrary to the moral law.” But Catholic views on suicide have changed: a funeral mass and burial are now allowed for suicides, and whether they must go to hell is left uncertain.

None of these religions accept suicide as a rational means of avoiding suffering at the end of life. Those religious prohibitions have until very recently determined laws about the possible role of physicians in helping patients end their lives. Just as the Catholic Church has shifted its position, so have lawmakers. Some European nations, like Switzerland, now allow assisted suicide. In 2011, 84% of voters in Zurich rejected a ban on assisted suicide.

Dr. Jack Kevorkian brought the issue of physician-assisted suicide to national attention in the 1990s. He helped 40 people in Michigan commit suicide. That prompted several ballot initiatives to allow this practice in other states. Such a vote narrowly failed in California in 1992, then barely passed in Oregon in 1994. A second vote in 1997 was not close, as Oregon voters confirmed the right to choose death. In the state of Washington, a ballot measure failed in 1991, but passed easily in 2008. Other states have recently had mixed outcomes. A ballot initiative was narrowly rejected in Massachusetts in 2012, while the Vermont legislature passed a law allowing patients to administer life-ending drugs to themselves.

Suicide, assisted or not, is an extreme response to a hopeless medical condition. Much more common is the attempt to insure that a dying person can have a “natural death”, meaning not being subjected to heroic medical measures to prolong life. The commonly used phrase is “do not resuscitate” (DNR). That is a medical order by a physician which excludes CPR or a tracheal tube in case a person’s heart stops or they stop breathing. Because the phrase implies that a procedure will be withheld, the words “allow natural death” (AND) are becoming more popular.

Patients do not create DNR’s, doctors do. A person may create an advance health care directive, sometimes called a living will, which specifies how they would like to be treated in a health crisis. Their purpose is to avoid situations where aggressive medical efforts to prolong life produce unwanted results. People who are kept alive through feeding tubes or, worse, in a vegetative state, generally would not have wished to survive that way. These medical practices are enormously expensive: families can lose their entire savings, even if they have insurance, keeping someone alive when they no longer want to live.

Yet it is difficult to write out a directive that adequately covers most likely medical situations. Living wills have become more complex to offer specific guidance to both family members and medical professionals.

What does this have to do with my mother, or with yours? I want my mother to have the best possible life. That doesn’t just mean a minimum of suffering, but also as much control as possible over the biggest decisions about life and death. But how do I know exactly what she wants? Will my feeling about what is right for her be colored by what I imagine I would want if I were near the end of my life?

I have no answers. Even thinking about these questions is painfully guilt-inducing.

I think my mother has made her choice. But what should I do? Prevent the nursing staff from feeding her? Encourage her to drink water, which will prolong her life, possibly by weeks?

What is right? I don’t know.

Steve Hochstadt

Jacksonville IL

Published in the Jacksonville Journal-Courier, March 18, 2014