A death in the family during the holidays invites questioning and reflection

A death in the family during the holidays invites questioning and reflection

It wasn’t the Thanksgiving holiday we were expecting.

Two weeks prior, my 94-year-old stepfather, Melvin Zax, suffered a stroke after receiving dialysis and was rushed to a hospital near his residence in western New York.

There he underwent a series of tests over the course of several days. With each test, Mel grew more agitated. His hearing aids weren’t working properly and he didn’t understand what was going on.

Amidst the hubbub of a busy hospital, Mel didn’t sleep at night. He became delusional, a frightening and all-too-common experience for hospitalized seniors.

For two days, Mel was housed in the emergency room; the hospital had no regular rooms available. Similar scenarios are playing out across the country, as hospitals reel under an increase in respiratory illnesses and cases fueled by covid-19 alongside severe staffing shortages. Older Americans are particularly at risk: About 1 in 5 emergency room visits are made by people 60 and older.

An ongoing crisis in long-term care options contributed to the bottleneck. Some elderly people occupy hospital rooms longer than necessary because they have nowhere to go. Many nursing homes and home care agencies are not accepting new patients because they simply don’t have enough workers.

Staffing problems at my father-in-law’s hospital were apparent. My husband, who was attending a conference in Montreal when his father was first hospitalized, called several times but could not reach a nurse or doctor for hours. As far as we know, Mel’s stroke was treated quickly, but the lack of clear communication left us with lingering doubts. How often did the nurses monitor him over the next few hours and days? How were decisions about testing made and what consideration was given to Mel’s advanced age?

Mel was a distinguished psychologist who worked part-time until he was 90 and remained mentally sharp. But he had suffered from diabetes for decades and since September 2020 he had been receiving dialysis three times a week, a grueling therapy for kidney failure. “I’m a wreck,” he would tell my husband on the phone after returning from a session.

I had written about dialysis for the elderly and I knew the statistics: Patients 85 and older live an average of two years after starting treatment. Mel had already beaten all predictions by surviving 26 months. Did the hospital staff realize how fragile he was and adjust their treatments and tests accordingly?

“Ask for a geriatric consultation,” I advised my husband, who has legal and medical power of attorney for his father and was now at his side.

I worried that nothing that was done at the hospital—EKGs, CT scans, attempted MRIs (Mel couldn’t tolerate it), orders to wear a heart monitor—would change Mel’s outlook. And he grew more and more agitated, moaning and throwing up his arms in apparent distress.

Some of the suggestions from the doctors at the hospital just didn’t make sense. Mel had stopped taking statins for high cholesterol within the past year; a doctor at the hospital gave him the drug, citing the risk of another stroke. Was there any chance it would really make a difference? (Statin therapy is not recommended for people at the end of life.)

Six days after his stroke, Mel was returned to the nursing home where he had been living for four months following a previous hospitalization. It is part of a well-run senior living complex with a top notch geriatrician who oversees medical care.

This geriatrician was the first to recognize that Mel might be dying. Kindly, he told my husband that Mel was exhausted from all the procedures he had received at the hospital and recommended that dialysis be stopped. Compassionately, he explained that Mel would probably spend a week or two after therapy ended.

Mel was barely conscious and unable to express what he wanted at this critical moment. But my husband knew the ferocity of his father’s desire to live. “Let’s try one more session of dialysis and see what happens,” he told the doctor.

It didn’t work: Mel’s circulatory system was too compromised for dialysis to continue. Over the next few days, Mel’s six grandchildren and three sons and their wives traveled to be by his side.

My husband realized it was time to organize palliative care, and a social worker met with us to describe what it would entail. An assistant visited Mel several times a week, she explained, but it would take a few days to set up due to staffing issues. During this time a nurse would visit in the following days and we could call the hospice 24/7 for help.

It turned out that an assistant never arrived, but access to the hospice’s medical staff proved essential. As he lay in bed, Mel’s breathing hitched and his chest heaved. With our encouragement, a nurse from the home called the hospice and the order was given to administer morphine every hour.

The next day, Mel seemed peaceful but more distant. There was a calm in the room that hadn’t been there the night before. The hospice nurse arrived and observed that Mel’s breathing had stopped for several seconds. Watch for those pauses and their lengthening, she tells us. A few hours later, there were four of us sitting next to Mel as her breathing slowed and then stopped.

It was four days before Thanksgiving.

How to continue his vacation in these circumstances? For one, the whole family was reunited for the first time in many years. And there was a lot to do: organize funerals, organize the week-long Jewish mourning period and prepare food for various occasions. Including Thanksgiving.

On the other hand, there was little time to reflect on what we had just witnessed or to process our emotions.

That’s what we’re doing now, as Christmas decorations go up in our neighborhoods and holiday songs fill the airwaves. In memory of Mel. To feel sad. Noticing the shadow of death right behind us. And resolve to have a good New Year, knowing that’s what Mel would want.

We look forward to hearing from readers about the questions you’d like answered, the issues you’ve had with your care, and the advice you need for dealing with the health care system. Visit khn.org/columnists to submit your requests or advice.

Kaiser Health NewsThis article was reprinted from khn.org with permission from the Henry J. Kaiser Family Foundation. Kaiser Health News, an editorially independent news service, is a program of the Kaiser Family Foundation, a nonpartisan health policy research organization not affiliated with Kaiser Permanente.

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