By Heather Millar
I’ve been thinking a lot about when and how we patients and families decide to stop gunning for a cure, and to begin to emphasize the treatment of symptoms, to making the best of the time that is left.
As I bustled and cooked and decorated for the holidays, I listened to a book by a professional acquaintance, Knocking on Heaven’s Door: The Path to a Better Way of Death. In it, author Katy Butler describes her father’s excruciatingly slow decline: about eight years during which he lost just about everything that had made his life worth living—his academic work, exercise, social life, and finally, his ability to name all his children or even to remember the purpose of a napkin. Meanwhile, a pacemaker kept his heart beating and artificially lengthened his life long beyond the time that life was enjoyable to him, or manageable for his exhausted and over-stretched family.
Butler’s mother grew seriously ill a couple years after her husband died. After the long nightmare of her husband’s decline, Butler’s mother opted not to have more treatment for her heart condition. She faced death on her own terms and in her own way.
This is only the slimmest summary of Butler’s book, which is a well-reported and passionate call for a more sane way of approaching death in this country. I highly recommend reading the whole thing. Even if you are not at a treatment crossroads, even if you have years, even many years, of life yet to expect, the book will get you thinking about things that Americans generally don’t like to acknowledge: the pros and cons of invasive and/or uncomfortable treatments toward the end of life, when and if you’d like to say “No” to more treatment, how and where you’d like to spend your final days, what sorts of documents you’ll need to make sure your wishes are honored.
I finished the book just a couple days before Christmas, and strangely enough, my own mother took a turn for the worse at just that time. She got an upper respiratory infection that she couldn’t seem to shake. She stopped eating and drinking. She became vanishingly weak.
My mother has been declining for even longer than Butler’s father did. For ten years we’ve been watching the medical problems pile up: liver disease, diabetes, heart disease, kidney failure, frontal dementia (caused by tiny strokes in the brain), alcoholic dementia (caused by decades of too much booze), endless outbreaks of fungal problems and minor infections as her immune system weakens. At the same time, we’ve watched her abilities dwindle: First driving went, then cooking, then socializing, then reading, then dressing or toileting, then walking, then talking. (She has “aphasia.” That is, she still has ideas, but she can’t find the words to express them.) She used to be a whiz at bridge. Now she can barely tell the spades from the clubs. She used to be a formal and elegant dresser. Now she spends her days in a hospital bed in t-shirts and diapers.
She has been at this low point for more than three years. My values differ from my mother’s and I wouldn’t want to endure what she has endured during these last few years.
But my Mom has always been a tough fighter, crazy and determined enough to ignore unpleasant realities. She was the only woman in her law school class in 1953. She does not give up. She never lets anyone see her cry. She always made it clear that if something could be done, she wanted it done.
Except for one thing: My mother never wants to go back to the hospital. She hates the hospital: the noisiness, the generally icky food, the lack of control, the endless prodding and poking. When she still had the capacity to make decisions, her doctor managed to get her to talk about her end-of-life wishes, and she was adamant: “No more hospital!”
So here we are: My Mom has had respiratory congestion for nearly three weeks; it’s not getting better. We enrolled her in hospice care a couple days after Christmas. If we could get her to hospital, maybe more intense care would help. But maybe it wouldn’t.
As of this writing, I have no idea what’s going to happen. But because we talked it out beforehand, I do have faith that I’m following my mother’s wishes: “Do everything you can; but keep me out of the hospital.”
A couple days ago, my Mom’s beloved caregiver came downstairs stricken. “It so hard today,” she sighed. “She wants me to do more. She keeps saying, “Do more!” But we’re doing all that’s possible in a home setting.”
We’re doing all we can under the parameters that my mother chose. It doesn’t make it easy, but it does make things more clear. Now, hospice is the right choice for my Mom.
One of the major points of the book, Knocking on Heaven’s Gate is that we need to be more pro-active about the end of life. We need to think about it. We need to talk about it. We need to look hard at whether complicated treatments are worth the cost and suffering. We need to think about whether we want the latest gadget or experimental drug, or whether we’d rather opt for hospice, and peaceful last days far from the hustle-bustle of the hospital. The answers will be different for everyone.
But we need to make the effort. As a society, we’ve largely lost the framework for this universal experience—end of life—so we need to craft an approach that works for each patient, and that’s clear for each family. I’m so grateful that my mother’s doctor forced her to make her wishes known before her mental abilities slipped too far.
Have you talked things out with your family? How did it go? Let us know here.