By Alison van Diggelen, host of Fresh Dialogues

“Everyone deserves dignity at the end of life,” Isabel Stenzel Byrnes, bereavement counsellor and hospice care worker.

This week’s podcast is a deeply personal story of how the Covid-19 pandemic impacted my family. A shorter version aired this week on the BBC World Service program, Health Check. I dedicate it to my beloved mother, to those fearful for vulnerable family members, and to anyone who’s lost a loved one recently. And I offer sincere thanks to Isabel, Laura and Mary who shared their poignant and hard earned wisdom about dealing with death.

Listen to the BBC podcast (segment starts at 9:40)

Listen to the full story at the Fresh Dialogues podcast or below:

https://www.freshdialogues.com/wp-content/uploads/2020/06/Death-Dignity-FD-podcast-mp3.mp3

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The Covid-19 pandemic has forced me to have a deeply uncomfortable conversation with my sisters. The topic? Our mother’s death. Despite warnings not to visit the elderly, my younger sister drove 500 miles from Kent to Scotland to visit our mother. A puzzling phone conversation convinced her that our 88 year-old mum needed help, urgently. So we made a pact one night: if mum did catch Covid, we’d keep her at home, come hell or high water. The thought of our sociable mum lying alone in a hospital bed, struggling for breath with no one holding her hand, broke our hearts. 

Just a few hours later, I woke to the news that hell had arrived. Mum fell during the night and broke her pelvis. My sister watched, impotent, pleading as the ambulance crew ––  decked out in full body protection –– stretchered her away. Grimacing in pain, she grasped at my sister’s hand, “Don’t worry, I’ll be OK,” she said. “You know I’m a tough old woman.”

We feared that would be the last time we’d see her alive.

To make matters worse, I’m 5,000 miles away from Scotland, sheltering in California, where I’ve lived for more than two decades. 

Earlier this year, the BBC’s Health Check asked me to explore a watershed moment in American healthcare: For the first time since the 1970s more Americans are dying at home than in hospital. My first reaction was: Nope, I can’t go there. Like many of us, I feared facing death. 

But now it hit home for me, like an avalanche of mother-daughter worry. Witnessing the isolation of Covid hospital patients in painful technicolor online –– and the inability of loved ones to say goodbye –– has brought it all into sharp focus. 

So why are the majority of Americans now choosing to die at home, and not in hospital? Do they miss out on specialist care and pain relief? What is “a good death,” and what will be the lasting impact of Covid on all this?

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I spoke with Laura Carstensen who directs the Center for Longevity at Stanford University. She points out the mismatch between what the medical system traditionally offers and what people imagine at the end of life.

“Medicine historically has said: We’ll throw everything we can at a person to keep them alive and is not necessarily what people want,” she says.

Today about 80% of Americans say they want to die at home – or at least not in hospital. 

In response, hospice care has grown rapidly over the last 10 years. The modern-day hospice movement was started in the UK in the late 1960s by a former nurse, Dame Cicely Saunders, who wanted to focus on the relief of symptoms like pain, whilst attending to their emotional and spiritual needs away from a hospital environment. 

According to the National Hospice and Palliative Care Organization, the number of hospice patients on Medicare – the federal health insurance program for over 65 year-olds – has grown from 44% in 2012 to 50% in 2018. In the US, unlike the UK, in-facility hospice care is the exception, not the rule. So most American hospice workers provide care in patients’ homes. 

Isabel Stenzel Byrnes works for Mission Hospice, a nonprofit [...]