When does life end? A multiple choice test.

I've had a series of conversations lately about my mother and other residents of her Alzheimer's home. Politics and dysfunction are not the sole province of English departments, soccer clubs, or the U.S. Senate. Her home, too, is going through a period of turmoil, which I sensed when I last visited in late May. So "Corporate" (as everyone calls it, which means ManorCare, which means Carlyle) has stepped in, replaced the Director of her home, and we hope for the best.

We hope for the best. In my mother's case, I no longer know what the best is. As my conversation with her current social worker ended this morning, she told me, almost as afterthought, that an orthopedic surgeon reported that she has several breaks in her elbow, but is not a candidate for surgery. That they should watch for symptoms of pain. That she is not exhibiting them now. (Not in pain from a severely and multiply fractured elbow?)

So I told the social worker about the problems I'd noticed--too few staff to cover dinnertime and sundowning chaos at the same time; overheard complaints about management, and so on. But I added that, while my mother had had a couple of years in which a flower could bring her joy ten times in five minutes, she does not seem to feel that now. That I hope for release. It felt odd, even dangerous, to say that.

Later in the day I found Atul Gawande's essay in The New Yorker via Daily Kos. It's titled, "Letting Go: What should medicine do when it can't save your life?" He writes about how hard it is for him--a surgeon--to know what the term "dying" means, since medical interventions keep people alive so long past the point they would have died a century ago. Some quotations from the piece resonate for me:

For all but our most recent history, dying was typically a brief process. Whether the cause was childhood infection, difficult childbirth, heart attack, or pneumonia, the interval between recognizing that you had a life-threatening ailment and death was often just a matter of days or weeks.

Later:

Dying used to be accompanied by a prescribed set of customs. . . Reaffirming one's faith, repenting one's sins, and letting go of one's worldly possessions and desires were crucial, and the guides provided families with prayers and questions for the dying in order to put them in the right frame of mind during their final hours. Last words came to hold a particular place of reverence.

Generally speaking, lastness is akin to firstness in lack of reliability or even interest. But as a formalist measure of dying, last words put an end to a story that can then be told from beginning, middle, end, or some usual crazy patchwork of all three. Hence:

"Is she dying?" one of the sisters [of a terminally ill woman] asked me. I didn't know how to answer the question. I wasn't even sure what the word "dying" meant anymore. In the past few decades, medical science has rendered obsolete centuries of experience, tradition, and language about our mortality, and created a new difficulty for mankind: how to die.

Gawanda writes about a woman, a specialist in end of life issues, who went back to her father's sickbed to ask him questions that she herself wanted to avoid. When asked what quality of life meant to him, he responded that he wanted to be able to eat chocolate and watch a football game. When called upon to decide if the next treatment was worth the risk or not (in their case, it was, and it worked), that was all she needed to know. Many cases do not have that ending, which is the lack of an ending--for now.

In 1991, according to the article, medical leaders came up with questions for the very ill. They were:

1. Do you want to be resuscitated if your heart stops?
2. Do you want aggressive treatments such as intubation and mechanical ventilation?
3. Do you want antibiotics?
4. Do you want tube or intravenous feeding if you can't eat on your own?

But even these simple questions elicit complicated answers. My mother gets antibiotics for her occasional pneumonias. She is not dying, she has dementia, the logic goes (I guess). While she has often failed to feed herself, she does not get fed by a tube, but by a caregiver bearing a spoon or fork. Often the "feeding supply," as it's called on the records I receive in the mail, is Ensure, which she drinks through a straw.

Would she want these interventions? Food, medicine, for the body that still ticks, despite her mind's vanishing? I believe not. But what can I do? What can I (effectively) not do?

Are these the questions to ask? Yes, but. Multiple choice can't cover the range of issues medicine permits us to avoid. In a culture saturated in violence and death, we cannot bear it when we most should, if not welcome death, think it inevitable, natural. Yet multiple choice is what we get, time after time. Do you want this or this or this? Not: would you prefer if we lay off, give you palliative care, stop prolonging life in the interest of--what? Here's a form I recently filled out for Corporate about my mother's care. The issues not raised leap from between the circles to be blocked in with black pen. Is it for this we learned to fill in the bubbles with our #2 pencils in elementary school? Click the image to expand it.


I can answer the question about my mother's room; it is clean. I can answer the question about variety in the meals; they are various. I cannot answer the questions about friendships with peers or staff; I cannot answer the questions about spiritual and religious life; I cannot answer the question about staff responsiveness to my mother's concerns. She cannot have them; she cannot voice them. (They now look to physical symptoms of pain rather than to verbal expressions of it--which she made when she first broke her elbow in pieces.) I can't answer them in multiple choice fashion. Nor can I answer them here, where words spool out month after month, year after year, if you include the book I adapted from a previous blog. In good passive voice fashion, they are "simply" not to be answered. Or, in Dr. Seuss's lingo: I cannot answer them, Sue I am.

I am not a Catholic, but I prefer "Father, Son and Holy Ghost" as multiple choice options to those listed on the form above. I'll give up the ghost and take the Father and the Son. And then in words my former student Father Bob says on that significant occasion, "Through this holy anointing may the Lord in his love and mercy help you with the grace of the Holy Spirit. May the Lord who frees you from sin save you and raise you up." I'll take the multiple choice that includes a raising up. But where do I find it? I can repeat words from the Chanrezig puja here at home. But what is there for my mother? Ensure does not live up to its name. (Last) words fail us, yet again. I'll keep saying them for her.