Compassionate, informed advice about healthcare decision making

Archive for May, 2021

“If I had a daughter, I wouldn’t be in this nursing home!”

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The old lady was stuck with three sons. And because of this — in her mind — she was stuck in a nursing home.

Her sons visited. They met with the nursing home staff to make sure their mother’s needs were met. They were as good of family caregivers as I had ever seen in my years as a nursing home chaplain. But, more than once, she said, “If I had a daughter, I wouldn’t be in this nursing home.” The notion seems a bit old-fashioned in today’s world, where gender equality is such an important issue.

Well, it turns out she might have been correct.

A study reported in the current issue of the Journal of the American Geriatrics Society (JAGS) found that a patient was more likely to die at home (as opposed to in a hospital or nursing home) if you had more family members… especially more daughters.

The burdens of a family caregiver

Being a family caregiver at home is a tremendous burden. In the JAGS study, the average number of caregiving hours in the last month of life provided by the family to someone who dies at home is 210. For those who die in a nursing home or hospice inpatient unit, it is 81.

Interestingly, the emotional burden for families is highest when the patient dies in a hospital and lowest when they die at home. Perhaps the transfer to the hospital in itself is a great emotional strain. Guilt about NOT being able to take care of the patient at home must also be a factor. And though providing hands-on care can be a physical burden, it may give the caregiver the self-satisfaction that they are doing their best. The caregiver feels more in control.

What about the daughters? Why does having daughters make it more likely to die at home? Unfortunately, the study did not tease out why, but we can guess.

Right or wrong, the cultural norm in our society is that nurturing and caring for the young and elderly are duties more often performed by women. Yet, I have witnessed so many men who admirably performed caregiving duties to their elderly parents that I know men can be great caregivers. But in these cases, the men usually stepped in because there were no women available.

Who’s going to take care of mother?

Hank’s mother, Charlotte, after her move to Colorado, with her namesake great-granddaughter, Lia Charlotte

I saw this “Who’s-going-take-care-of-mother?” question play out in my own family. Mom had lived for years independently in a retirement facility in Tampa before moving into assisted living. My brother, sister, and I took turns visiting our mother. I like to think we each took about the same amount of time away from our work and families to serve as long-distance caregivers.

As our mother’s dementia progressed, it became clear that we needed to move her to a facility closer to one of us. We each visited memory care units near our homes in Tallahassee, Boulder, and Northern Virginia. Each of us was willing and able to become “the caregiver.” We weighed the quality and cost of the facilities we had found.

After we all had done our due diligence, my sister declared, “I want to do this. I want mom to come to Colorado.”

I called Janice last week to see if my memory of this decision-making process was the same as hers. “Yes,” she said. “I knew you and Dennis were quite capable of caring for our mother, but I was her daughter. There is a special bond between mothers and their daughters.”

And that was that.

“She would never want to be kept alive like this.” The Benefits of Time-Limited Trials

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The conversation started innocently enough. It was thirty years ago (in an age before cell phones) at the nursing home where I served as chaplain. The sister of one of our patients needed to use a phone. The Assistant Director of Nursing invited her into the office down the hall from the patient’s room. The frail old lady hung up the phone when she got a busy signal (this was also before call waiting and voicemail).

In the quiet, while she waited before dialing again, she told the nursing supervisor, with great sadness, “My sister would never want to be kept alive like this.” “Like this” meant in a nursing home, on a feeding tube, and nonresponsive. The wise and compassionate Assistant Director of Nursing responded, “You know, you can stop the tube feedings if you feel that would have been her wish.”

Over the next days, the patient’s sisters and son met with the doctor and our nursing home care team. The family decided to withdraw the feeding tube and let the patient have a peaceful and natural death — and so it was. But this painful decision – and the patient’s slow, prolonged death – could have been avoided.

It could have been done differently

The lady had a stroke, was unconscious, and couldn’t swallow. The hospital physician said she needed a feeding tube and that was that. What if that doctor had said, “We can try the tube feedings for a little while, say thirty days, and if she doesn’t improve, we can stop the artificial feeding and let her die peacefully.” So much suffering could have been avoided if a “time-limited trial” of the feeding tube had been offered to the family.

My mind went back to this experience after recently reading a great piece by Paula Span in The New York Times, “I Need to Know I Tried” in her ongoing series “The New Old Age.” Reporting on a research study conducted in Los Angeles, she explains how time-limited trials offered to families of critically ill I.C.U. patients had many benefits. The length of stay in the I.C.U. was shortened, fewer patients had prolonged deaths, and the families felt better about their decision-making.

This new research confirms what I have known all along. In my view, there is no downside to a time-limited trial.

Life at Fifteen Miles an Hour

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Last week, I whined about how having breaking news always at our fingertips has left little room to reflect on that news. This reminded me of a piece I wrote in 1993 for the newsletter at the nursing home where I worked. It was about riding my bicycle on the Outer Banks, slowing down, and discovering what I missed at sixty miles an hour.

“From the Chaplain: Life at Fifteen Miles an Hour,” July 1993

The rain started just as I set out on the first of four days of bicycling that would carry me 185 miles up and down North Carolina’s Outer Banks. I had driven my car from our rented house on the northern end to Avon — 33 bike-miles from Ocracoke at the southern terminus of the Outer Banks. Just as I was unloading my bike, the rain started.

It was 7:00 AM, and I had come too far not to ride. It was also July, so I wasn’t worried about being too cold. But, how often do I get to Cape Hatteras? If I didn’t start on that day, then my goal of riding the length of Outer Banks would be in jeopardy.

Let it go

I put on my rain gear and headed south. I fought the urge to turn around (“This is so stupid!”). Within fifteen minutes, I was soaked through and through, rain gear or not. I found I was much more comfortable being drenched than fighting to stay dry.

It was one of those “let it go” experiences. I figured I might as well give in and enjoy the scenery.

After an hour, I took off my parka and rain pants and peddled in what had become a light drizzle. By the time I reached the ferry bound for Ocracoke Island, the rain had ceased. I still had the bulk of that day’s ride ahead of me.

The distances between points on the map have a feel to them when you go by bike. Each day brought new stretches of highway. The old cottages at Nags Head and new resorts at Duck. The long distances of the Cape Hatteras National Seashore. On that day heading to Ocracoke, I got to know each village (Buxton, Frisco, Hatteras) as I passed through at fifteen miles an hour.

Are we really better going so fast?

I had vacationed several other times on these islands. But, I had never “experienced” them before like I did biking the entire length. You see and hear and feel a lot from riding a bicycle at fifteen miles an hour.

I could read historical markers that are only a blur from a car. (Did you know the first musical notes over the radio were broadcast on Cape Hatteras?) You can look pedestrians in the eye and say hello. Try that at sixty miles an hour.

What else do I miss by not slowing down?

Living in the D.C. suburbs of Northern Virginia sure makes a slower pace difficult. Are we really better because we pack so much into our days? My bike told me, “No, not necessarily.”

 

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