Life's End: Little Help, No Dignity

By: GAYLE FELDMAN
January 10, 2001

Much of the past year, I have felt like a foreign correspondent in the land of the old, in the nursing home and assisted living and hospital rooms most of us omit from our travels for as long as we can. As a boomer, my assignment came by virtue of birthright and timing as well as choice. Two months ago, it ended when my 85-year-old father died.

Congressional investigators recently issued a report finding widespread violations of federal health and safety standards in nursing homes in five states. To those who live inside many such places, it comes as no surprise. When aged people are dying it is not always "Tuesdays With Morrie," nor does it always involve the exceptional care Bill Moyers portrayed in his PBS series about death.

About 15 months ago, my father was found to have advanced colon cancer. After his operation, he moved from his apartment to the best assisted living center we could find. It was run, as many are, by a large corporation.

There are some extraordinarily dedicated people working where he lived. The problem is, to keep costs down, there just are not enough to go around.

Weekends are the worst. The housekeeping staff is minimal then and often nowhere to be found. When a resident has an accident — and incontinence is a common enough problem — the unnecessarily long wait for a cleanup can make an old person's sense of dignity completely disappear. On one occasion, my father's calls to housekeeping went unanswered for hours. In the end, it was the residential manager herself, in her business attire, who got down on her hands and knees to clean up the mess on his floor before she left for home that night, because housekeeping never came.

On Saturdays and Sundays, from early in the morning until late in the afternoon, only one nurse was on duty to serve hundreds of old people. One Sunday, I had to search for more than a half hour for somebody to unlock a controlled-substances closet when my father needed his morphine. The few staff members at work were all attending to other residents' needs.

The bill, on average, was $3,400 a month. The turnover in older, full-time workers was high: for often unpleasant and necessary work, the pay was not terribly good. Many of the dining staff were 15-year-olds on shifts after school.

My father lived in Philadelphia. In that whole metropolitan region, there are only two in-patient hospices, both not-for- profit. One has 17 beds, the other 8. A lot of for-profits closed, I was told, because of finances.

During the last month of my father's life, his care was managed by one of the many outpatient hospice teams that have sprung up in hospitals across the country. They, too, are sometimes regarded by their institutions as profit centers, for financing is guaranteed by Medicare. Three times a week, for perhaps an hour each time, one of two hospice nurses, also available at other times by phone, visited him in his room. It was on that basis that his pain was managed. No wonder it was not managed terribly well.

The whole time that he was on hospice, my father was never visited by his doctor, an oncologist. Nevertheless, it was the oncologist to whom the hospice nurses reported, and the oncologist who directed his care. No matter that the occasional presence of a physician during those final weeks could have brought real comfort even if no cure. Oncologists are trained to direct the battle against disease, not to provide end-of-life support.

At two junctures in his final weeks, it became alarmingly clear that my father's pain was out of control. He had enjoyed exceptional physical strength for eight decades, had been raised to believe manliness meant not complaining about pain and was suspicious about drugs. He became angry and noncommunicative. The senior hospice nurse, on her brief visits, misinterpreted the signs.

At that time my father was on a relatively small amount of narcotics for pain control. The nurse said he was being difficult and unpleasant, either not talking to her at all or else shouting and complaining about everything under the sun. Oddly, the one thing he did not complain about was pain. She was not spending enough time with him to realize that was what all the acting out was really about.

It took urgent faxes and calls from a daughter in New York to the oncologist in Philadelphia for the medication to be increased. This is not atypical.

"I used to raise Cain, but I use a cane now," is what my father said some weeks before he died. In fact, he continued to raise Cain almost to the end.

Unfortunately, the voices of so many I saw living around him were no longer as strong as his was, or so easily heard.