A Member of the Family Dying During the Festive Season Prompts Questions and Thinking

It wasn’t the Thanksgiving holiday any of us had expected.

Two weeks before, my 94-year-old father-in-law, 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 became more agitated. His hearing aids weren’t working right, and he didn’t understand what was happening.

Amid the hubbub of a busy hospital, Mel wasn’t sleeping at night. He became delirious, a frightening and all-too-common experience for older adults who are hospitalized.

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

An ongoing crisis in long-term care options has contributed to the bottleneck. Some seniors are occupying hospital rooms longer than necessary because there’s no place else for them to go. Many nursing homes and home care agencies aren’t accepting new patients because they simply don’t have enough workers.

Staffing issues at my father-in-law’s hospital were apparent. My husband, who was at a conference in Montreal when his dad was first hospitalized, called repeatedly but couldn’t get through to a nurse or a doctor for hours. As far as we knew, Mel’s stroke was tended to promptly, but the lack of clear communication left us with lingering doubts. How often did nurses check on him in the subsequent 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’d worked part time until age 90 and remained mentally sharp. But he’d had diabetes for decades and since September 2020 had been getting dialysis three times a week, a grueling therapy for kidney failure. “I’m a wreck,” he would tell my husband over the phone after returning from a session.

I’d written about dialysis for the elderly, and I knew the statistics: Patients 85 and older live, on average, two years after beginning treatment. Mel had already beaten the odds by surviving 26 months. Did the hospital staff realize how frail he was and adjust their treatment and testing regimens accordingly?

“Ask for a geriatrician 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 being done at the hospital — electrocardiograms, CT scans, an attempted MRI scan (Mel couldn’t tolerate that), an order to wear a heart monitor — would change Mel’s prospects. And he was increasingly agitated, groaning and throwing his arms out in seeming distress.

Some of what hospital doctors suggested simply didn’t make sense. Mel had been taken off statins for high cholesterol in the past year; a hospital physician put him back on the medication, citing the risk of another stroke. Was there any chance it would really make a difference? (Statin therapy is not recommended for people near the end of life.)

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

That geriatrician was the first to acknowledge that Mel might be dying. Gently, he told my husband that Mel had been depleted by all the interventions he’d received in the hospital and recommended that dialysis be stopped. Compassionately, he explained that Mel would probably pass within a week or two of ending the therapy.

Mel was barely conscious and unable to express what he wanted at this critical juncture. 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 proceed. Over the next few days, Mel’s six grandchildren and three sons and their wives traveled to be at his side.

My husband realized it was time to arrange hospice care, and a social worker met with us to describe what that would entail. An aide would visit Mel several times a week, she explained, but that would take a few days to set up because of staffing issues. Meanwhile, a nurse would visit in the following days and we could call the hospice 24/7 for help.

As it turned out, an aide never arrived, but access to the hospice’s medical staff proved essential. As he lay in bed, Mel’s breathing became ragged and his chest heaved. With our encouragement, a nurse at the home called hospice, and orders were given to administer morphine every hour.

The next day, Mel seemed peaceful but more distant. There was a quiet in the room that hadn’t been there the day before. The hospice nurse arrived and observed that Mel’s breathing was halting for several seconds. Watch for these pauses and their lengthening, she told us. A few hours later, four of us sat at Mel’s side as his breathing slowed and then stopped.

That was four days before Thanksgiving.

How does one go on with a holiday under these circumstances? On the one hand, the entire family was together for the first time in many years. And there was lots to do: host a funeral, arrange for the weeklong Jewish mourning period, and prepare food for various occasions. Including Thanksgiving.

On the other hand, there was little time to think about what we’d just witnessed or process our emotions.

That’s what we’re doing now, as Christmas decorations go up in our neighborhoods and holiday songs fill the airwaves. Remembering Mel. Feeling sad. Noticing the shadow of death just behind us. And resolving to live well in the new year, knowing this is what Mel would want.

We’re eager to hear from readers about questions you’d like answered, problems you’ve been having with your care, and advice you need in dealing with the health care system. Visit khn.org/columnists to submit your requests or tips.

Judith Graham:
[email protected],
@judith_graham