How do we bring true compassion into elder care?

by Amy Cameron O’Rourke, author of The Fragile Years

A 78-year-old man had a stroke on the golf course. His partners called 911 and he was rushed to the ER, but the poor guy never regained full consciousness. The COVID-19 pandemic added another level of stress and heartache to the matter, with ventilators in short supply and hospital protocols changing by the minute. That’s where I came in. As an advocate for the man’s family, I organized an emotional Zoom meeting with his wife and grown children.

When his wife learned of the failing condition of his lungs, heart and other major organs, she knew. “I’m losing him, aren’t I? Why didn’t the hospital tell me this?” It was a question I could not answer, despite my suspicions. It happens all too often with clients in the fragile years. Families are left in the dark and not given the information they need to make critical decisions.

Hospitals and nursing homes should absolutely take every measure possible to keep older patients alive while at the same time being mindful that compassion is about quality of life – not saving lives at all costs.

When well-intentioned but unnecessary medical procedures prolong the lives of older adults, the suffering they cause is rarely worth it.

It’s time to hit the reset button and end the culture of treatment that causes more harm than benefit. What can you do to ensure your loved one receives compassionate elder care? In my book, The Fragile Years, I outline some key action steps families can take in this tender chapter of life:

Arm yourself with the tools to make informed, compassionate decisions about quality of life well in advance of a medical crisis. Ask your loved one what their preferences are in different scenarios.

Get to know your older loved one’s values around end-of-life events – and respect them when the time comes.

Before life-prolonging steps are taken, ask your older loved one what they would like.

Remember to put your loved one’s desires first. Allow them a more natural and peaceful end of life if that is what they want.

Have the courage to make decisions that may appear contrary to the medical profession’s opinions.

If your loved one is experiencing cognitive decline, be prepared to be their compassionate spokesperson. Firmly demand the care they would want if they were making the decision themselves.

It’s never too early to become familiar with the many legal, business and staffing considerations that shape nursing homes’ decisions, where everything from fear of lawsuits to fatigue come into play. Communicate with them accordingly.

After that revelatory Zoom meeting, the difficult next step was to determine where his family wanted him to spend his final hours.“Home,” his wife said. “With me and the kids.”

We arranged to have him discharged from the hospital and taken home, where hospice care had already been set up. He died 36 hours after coming home, surrounded by his loved ones. His widow called a few days later and expressed her gratitude. “I am at peace,” she said. “I am sad he is gone, but I am at peace.”

It’s not easy, helping someone through end-of-life decisions, especially if you don’t agree with all of them. I tell family members and friends to let go of who the loved one was, and also let go of your need for them to change. Give them the final gift of your understanding, compassion and generosity of spirit.

Amy Cameron O’Rourke is a nationally-known pioneer and advocate for senior care in the U.S.

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