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Summer read sparks end-of-life discussion

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Photo by Iswanto Arif

Death.

It can mean a sense of peace for someone. For others, it can be a terrifying thought that should be fought with every piece of medical technology known to man.

WITF’s Summer Read, “Being Mortal” by Atul Gawande, attempts to carve out a path forward for all of us, by dealing honestly with end-of-life care in the United States: how it’s administered, the enormously complicated issues attached to it, and the emotions that we all try to prepare to take on.

We’ve already started the conversation about end-of-life or palliative care on WITF, whether it’s a HealthSmart special, a Smart Talk episode, or a Transforming Health feature during “Morning Edition”.
But discussions about how we want to live our final days are fraught with emotion, delicate discussions, and sometimes, guessing when plans don’t materialize as they were once envisioned.

Attitudes towards death are shifting, too. Many people who responded to a query on WITF’s Public Insight Network about their priorities if death was approaching placed dying at home near or at the top of the list.

William Anderson of Camp Hill laid it out starkly: “I don’t want to die in a hospital or in intensive care.”
Kelly Duck, also of Camp Hill, echoed William’s thoughts: “I would wish for comfort and peace for my family and friends. I would want to be at home with my family and to choose hospice.”

Others wrote of the painful experiences they’ve seen friends or family endure. One woman, whose name we are withholding to protect her privacy, described a “gruesome” experience for her neighbor, who didn’t have family in the area.

“Her doctor treated her horribly,” wrote the woman. “We only learned of hospice and got their help in her last hours. I wasn’t family, so I was completely powerless to help her. That horror also showed me that I need to have a living will.”

As a result, the woman says she now does have a living will in place, and has communicated her desires to her friends, since she also doesn’t have family in the area.

“It taught me to stay strong and physically balanced so I don’t fall and wind up in the typical ‘break-your-hip-end-up-with-pneumonia-and-die-in-the-hospital’ horror,” the woman says.

“I understand that some people want every bit of medical care they can get before their last breath, but I think if people had more information about what it’s like to die in a hospital and how horribly painful many interventions are, they’d fight for a better way.”

Only a couple of the respondents to the Public Insight Network query said they wanted to fight until the end. That stands in direct contrast to how many in the medical field view end-of-life care. More often than not, doctors, specialists, nurses, and other health care professionals do everything to delay death in the final days of a patient’s life.

But as illustrated by Gawande’s “Being Mortal”, the status quo is getting questioned, and doctors are learning that many aren’t anxious to engage is a series of battles with illnesses and infections that they know will eventually win the war.

However, the re-orientation of end-of-life care has happened in starts and stops, and is far from universal across the country.

Another issue is getting elevated, in the wake of the U.S. Supreme Court’s decision legalizing same-sex marriage in all 50 states: the legal rights of a same-sex partner in making end-of-life decisions.

“I have seen estranged siblings and other family members of the deceased swoop down on a surviving partner and destroy their lives,” writes John Folby of Harrisburg. He says he has witnessed surviving partners deprived of the ability to offer their thoughts on treatment while their partner is dying. And to compound matters, he says many have lost everything because they didn’t have proper legal documentation in place. Folby says he won’t let that happen to him; he’s already coordinated with his attorney and clinician, and have notified his siblings of his plans.

Join us for a discussion

WITF wants to open up the end-of-life discussion. As part of our Summer Read program, and in partnership with the non-profit Aligning Forces for Quality- South Central PA and Central PA library systems, we’ll be screening Frontline’s “Being Mortal” documentary, based on Atul Gawande’s book by the same name, in three different locations in September and October.

At each free screening, experts will also discuss end-of-life care and answer questions from the audience.

Join us September 28th at Penn Cinema in Lititz, October 8th at the WITF Public Media Center in Harrisburg, or October 12th at the Majestic Theater in Gettysburg.

All three screenings begin at 6 pm. We hope to meet you, learn about your experiences, and answer your questions.

Resources for palliative care:

Hospice of Central Pennsylvania offers a service, called Palliative Care of Central Pennsylvania, that can refer you to a palliative care physician and answer questions about it.

The major health systems in the region all have their own palliative care departments.
PinnacleHealth Palliative Medicine
Penn State Hershey Palliative Medicine
WellSpan Health Palliative Care
Hospice and Community Care (serving Lancaster General Health’s patients)

Want to learn more about palliative care?

spoke with some leaders in the field in March, after the Frontline documentary “Being Mortal” was released.

“Summer Read” is also additionally supported by Capital BlueCross, WellSpan Health, and Penn State Hershey Medical Center.