What an End-of-Life Adviser Could Have Told MeBy Jane Gross
If only I’d had the 800 number for Compassion & Choices in the last difficult months of my mother’s life. She was paralyzed, incontinent and unable to speak. I watched the light leave her eyes and her body crumple like a rag doll’s, and I knew that one day soon she would say, “Enough.”
During this period, my mother and I talked and talked and talked about her end-of-life choices, as we had for many years. A decade earlier the conversation had seemed totally academic, even a bit weird. But now we were both grateful that this was familiar territory. At regular family meetings at the nursing home where she lived, the social workers, nurses and doctors joined what had been our private dialog. Our willingness to look my mother’s certain death squarely in the eye, they said, was both unusual in families and beneficial to her quality of life.
Despite my mother’s helplessness and misery those last months, she wasn’t dying of anything. She had a garden-variety set of ailments for an 87-year-old woman: high blood pressure, diabetes, arthritis, an inner-ear disturbance. A series of imperceptible strokes, known as T.I.A.’s, had left her body useless. But they didn’t necessarily portend a deadly event. She’d dodged the bullets of cancer, serious heart or pulmonary disease, and dementia. It is not uncommon, having lived past 85, to keep on living for a very long time — “healthy” in the narrow sense of the word, but increasingly incapacitated. That, alas, was my mother’s fate.
She often longed for the oblivion of Alzheimer’s disease. But her sharp mind — she never skipped a beat — entitled her to organize her own death, within legal limits, which she did by deciding to stop food and hydration. We had discussed and researched this option, and we had read enough to be reasonably confident this manner of dying was not a frightful ordeal but rather a gentle death. We trusted that an enlightened nursing home like the one she was in wouldn’t force her to eat and drink. They had readily accepted earlier decisions to forgo diagnostic tests or hospitalizations, and later antibiotics for pneumonia.
Our study of what is known as V.S.E.D., or “voluntarily stopping eating and drinking,” was impressive for amateurs, if I do say so myself. My mother had a pretty good death, on her own terms, and we had the nursing home’s full support. I’m proud and grateful to have been able to advocate for her and to have been by her side. That said, there were several rough patches. And after recently meeting Judy Schwarz, the patient support coordinator for Compassion & Choices in New York, I now can see we’d have had an easier time of it had she been along for the ride.
What follows are a few of the bumps in the road that I bet would have been smoothed with her expert guidance.
* Medical professionals can only guess how long it takes to die of dehydration. (Merely refusing food is a bad idea, as many people who have gone on long hunger strikes can surely attest.) My mother’s nurses and doctors said she’d likely last four, five, six days — a week at most. With that in mind, I settled into a recliner in her room with books, music, snacks and a few changes of clothes, and I intended to stay by her side, as promised, for the duration.
In fact, she lived for 13 days, alert and communicative for about a week and manifesting none of the signs of impending death until the last 36 to 48 hours. Why the discrepancy? People in my mother’s robust condition rarely make this choice. It is typically how people die in the end stages of cancer or Alzheimer’s disease, following a progressive loss of interest or ability to eat and drink — not an abrupt dinner-yesterday-but-no-breakfast-today-thank-you-very-much announcement. I don’t know if my mother experienced time as I did, but to me it felt interminable. To my shame, I did a lot of clock-watching. Eventually I went home at night, leaving behind a private-duty aide.
I doubt I’d have twitched with impatience, just wanting for it to be over, had I known that the average dying time is two to three weeks, as the scientific literature says. Judy Schwarz would have told me that. I think the days would have been more peaceful and contemplative had I not been surprised by how long it took.
* Several of my mother’s caregivers, both nurses and aides, had moral or religious reservations about her decision. To their credit, they didn’t just switch to the other side of the floor. They came to me, in tears, to say this was something their consciences would not permit. They visited her several times a day, but delegated the hands-on responsibilities to others. At the time, I admired their honesty and felt their hurt and love, but I wondered if this behavior was appropriate. Shouldn’t they be able to leave their personal convictions at home?
The answer, I now know, is that they followed the canons of their profession perfectly: no health professional is required to participate if that violates a personal belief system. What they are required to do is ensure a smooth hand-off to someone equally qualified.
* During and after my mother’s death, I was often stung by the implied or expressed judgments of friends, colleagues and even strangers after I wrote about the experience. “You let your mother do that?,” I was frequently asked, with the word “let” heavy with opprobrium. My answer, generally, was that it wasn’t up to me. She was mentally competent and entitled to do as she pleased. My job as her daughter was to be supportive. Left unsaid, once I’d experienced the first episodes of shock and disapproval, was that I totally agreed with her. Expecting the reaction of others would have helped.
* Once my mother began her fast, the nursing home offered two ways to ensure her comfort. The regular staff could stay in place, keeping her mouth from getting too dry and administering sedatives as needed under the supervision of a palliative care physician. Or a team of hospice professionals, part of what was then a new collaboration with the nursing home, could take their places at the bedside. I opted for the familiar. My mother didn’t warm easily to strangers, and I thought she would need the comfort of people she knew well.
A counselor like Ms. Schwarz would have told me that the regulars might ask to be taken off the case, which might have changed my mind. She also would have told me that a hospice team likely would medicate my mother more aggressively, given their training in cutting-edge comfort care. Even if I’d stuck to my plan and later wished I’d chosen hospice, Ms. Schwarz would have suggested a change of course. It never occurred to me that was possible. I was too tired to think straight.
* I have always assumed that what my mother chose to do herself, I could have insisted upon for her, as her health care proxy. In other words, if she were no longer “decisionally capable,” though not on the brink of death, I could have told the staff to stop spooning food into her mouth or bringing the straw to her lips, and they would have listened to me as her surrogate. Ms. Schwarz would have told me this isn’t so. Other end-of-life experts are less certain but know of no test cases. From that I conclude that V.S.E.D. should be considered a viable option only for cognitively intact men and women. Maybe that’s why it’s called “voluntarily stopping eating and drinking.”
To arrange for an end-of-life consultation with Compassion & Choices, with chapters nationwide, call 800-247-7421.