Just give 'em a few more years and they will.
Sort of lends a new meaning to the expressions "take a powder" or "oh, dry up."
Striving for a Gentle Farewell
By JANE GROSS
Paralyzed, unable to speak, losing the ability to swallow and yet totally aware of her plight, my mother had been telling us for weeks, one letter at a time on an alphabet board, that she was ready to die.
She knew, after many discussions with my brother and me, that the only way she could legally hasten the end of her life in a nursing home was to refuse food and hydration. Still she struggled to eat, not allowing anyone to feed her, and to drink, even when she was too weak to use a straw.
Then, on an otherwise ordinary morning in July, my mother, 88, decided she had had enough helplessness and humiliation. Emphatically, she spelled out N-O-W, first to me, then to a doctor and social worker.
We reminded her she could change her mind. We promised her death would be comfortable, eased by morphine. It was a promise easier to make than to keep in a nursing home, even one as determined to provide humane end-of-life care as the Hebrew Home for the Aged in Riverdale, where my mother died of dehydration 13 days later.
A recent study in The New England Journal of Medicine surveyed 102 hospice nurses in Oregon about the process of dying this way, an option taken by only 0.3 percent of hospice patients in that state. They were asked to characterize the dying patients' experience on a scale of 0 to 9, with 9 being "a very good death," with little pain and suffering. Overall, the nurses gave the deaths a median score of 8.
I wouldn't score my mother's that high. The first three days were so-so, maybe a 6. The last three days were peaceful, an undisputed 9. It was the week in the middle that was harrowing, at best a 3. And my mother's doctors and nurses, in an institutional setting, faced obstacles not found in hospice care, which usually takes place at home.
A nursing home is closely regulated by the state in its dispensing of narcotics and may be asked to defend the amount of morphine administered. It took an outside pain consultant, a specialist in palliative care, to persuade the staff physicians that they could raise the dosage without risking state sanction or legal liability. Only then did my mother stop pumping one arm frantically, clenching her jaw and staring wide-eyed at the ceiling. In addition, a nursing home is staffed by people with widely differing views about end-of-life issues, unlike a hospice program, which attracts like-minded professionals. Religion, race or personal experience made some of the nurses uneasy about giving the morphine injections. So did affection for someone they had gotten to know over the two years since she moved there, after she could no longer fend for herself in an assisted-living apartment.
Each nurse also drew her own conclusion about whether my mother was in pain, or enough pain to justify medication. My brother wondered if nursing home professionals grow so accustomed to the contorted faces of suffering that what looked unbearable to us was routine for them.
Often the nurses reported that my mother was resting comfortably, and I didn't doubt them. Then my brother or I would arrive to find her jumping out of her skin. We were told by my mother's doctors that ceasing food and drink is rare in people this alert and strong. Generally, a patient in the late stages of Alzheimer's disease or cancer will passively lose interest in nutrition and slide into the situation that my mother chose outright. Her condition made the ordeal both longer and harder.
For days, my brother and I badgered the doctors and nurses to medicate her sufficiently to stay ahead of the discomfort. We cried. We screamed. We threatened to take her home. We went ever higher in the home's hierarchy, risking insult to the people who had cared for her so tenderly. We beeped department heads at all hours, collected cellphone numbers from caller ID and shamelessly used them.
Outside her room, we huddled with the heads of all the relevant departments. Why did we promise her she would be comfortable if we couldn't deliver? What good was medication on demand if she had to suffer before she got it? And who gets to decide whether she is suffering, we or they?
My mother's pumping hand, for example, seemed to us a clear sign of physical pain. But arguably she could be signaling frustration that she could not "say" anything anymore, even on the alphabet board. Maybe it was a reflex, devoid of meaning. Possibly she was rowing herself across the river Styx. Who is to say?
Letting my brother and me answer these subjective questions carried its own risk for a nursing home. Unlike many families, we were more or less on the same page, supportive of my mother's decision and grateful she could make it herself. But in these litigious times, I would not blame the home's authorities if they were afraid we would later sue them, in the muddle of grief.
It helped that my mother's wishes were known. She had a living will and a "do not resuscitate" order, but understood that these documents would give her control at the end of her life only under limited circumstances — if her heart stopped, for example.
She also had a health care proxy, in the event she wasn't competent to make her own decisions — as do more than 80 percent of the residents at the Hebrew Home, far above average. But until her condition deteriorated, and we assembled at a family meeting to discuss her narrowing options, I doubt my brother or I would have been as aggressive as my mother was for herself.
Her precise wishes became clear when she enrolled in a "comfort care" program, which enabled her to decide which medical interventions she wanted and which she did not. Of the 784 residents at the Hebrew Home, 26 are on comfort care or a newer hospice program, where outside professionals take over a patient's care. My mother chose comfort care over hospice because she preferred the familiar nurses and social workers to strangers.
As a comfort care patient, my mother refused thickened liquids, which tasted awful, accepting the risk of aspiration pneumonia. She made clear she did not want to be hospitalized. There would be no antibiotics, no feeding tube. Her primary nurse guessed she might have lived for years in her helpless state had she not made these decisions.
My mother's nurses even stopped checking her vital signs. There was no need to know how she was doing if she wasn't going to do anything about it. The only treatment she accepted was designed to make her more comfortable. Wax was removed from her ears when it affected her hearing. A suction machine cleared her throat when she could no longer bring up phlegm.
Still she lingered, twice fighting off pneumonia without medication. She was lying in bed more often than up in her wheelchair. Some days she was too weak to use the alphabet board, except to point to "Yes" and "No." The strength she summoned to spell out "now" signaled her certainty.
Since my mother's funeral, my brother and I have discussed her last days with the care team — conducted our own post-mortem, if you will. Rage at their inability to make her comfortable from Day 1 has softened into an understanding of the challenges in dying this way in a nursing home.
And the wisdom of my mother's choice, however uneven its execution, is evident in photographs from July 4, a week before she started the final leg of her journey. This proud, independent woman looks like a rag doll in the wheelchair, her clothes askew and stained with puréed food from her latest attempt to feed herself. She would cry to return to bed moments after the photo was taken but have to wait until the end of a shift change.
I look at those last pictures now and my heart hurts. To keep them or to throw them away? That is not my mother. It is easier to remember her pumping her hand in pain or fear or fury. And easier still to remember her last quiet days.
"We are not at the point of saying this is a reasonable alternative for everyone," Ganzini told Reuters in an interview. "But it is a possibility for many more patients."
As a veteran, this is certainly comforting; I was planning on kicking and screaming, but I guess I won't have the strength for that, now.
This next line from one of the nurses deserves a place in the next Book of Malaprops:
8 percent of patients were thought to have had a relatively poor quality of death
"In the absence of definitive research in this area, the balance of the burdens and benefits of such treatment remains subjective."
There wasn't much point reading beyond this.
Terri is not terminally ill and she did not opt to end her life.
A court opted to end her life.