As more people are hospitalized due to COVID-19, are health care systems, patients, and families prepared for tough conversations and decisions about health care preferences and medical interventions? Now more than ever, it is important for providers to tap into the core tenets of palliative care to guide patients and their families through uncharted waters.
Palliative care is a medical specialty focused on alleviating stress and suffering for people with serious illness, and it is often provided alongside curative care as an extra layer of support. Some experts worry that a longstanding shortage of palliative care specialists “could leave many COVID-19 patients in distress,” Liz Szabo reported in Kaiser Health News.
“This pandemic means that we will be drawn into countless conversations with families who are suddenly having to make difficult decisions about life and death,” Nathan Gray, MD, a palliative care specialist at Duke University Hospital, wrote in a comic book–style story that he illustrated. “As we take stock of masks, gloves, and ventilators, we must also be ready to dig deep into our reserves of patience, communication, and compassion.”
In a Washington Post commentary, Emily Aaronson, MD, an emergency physician and assistant chief quality officer at Massachusetts General Hospital, encouraged families to engage in conversations about end-of-life wishes now. “It’s important that you understand what would be most important to them if they were in the last phase of their life — and what steps you and others will have to take to ensure those needs are met,” Aaronson wrote. “These are conversations designed to guard against regrets.”
Many resources are available to help families and health care providers alike. Aaronson recommended the Conversation Project … to facilitate conversations. (Look for a Pennsylvania Link to Aging and Disability Resources Death Cafe to to have those conversations, too.)
The Center to Advance Palliative Care organized a COVID-19 toolkit for clinicians, and VitalTalk, a nonprofit organization dedicated to helping clinicians develop communication skills for serious illness, published a guide to difficult conversations about care of COVID-19 patients.
SOURCE: California Health Care Foundation
“Op-Ed: Think you want to die at home? You might want to think twice about that” – The Los Angeles Times
by Nathan Gray
“Gray is an assistant professor of medicine and palliative care at Duke University School of Medicine and an artist who draws comics on medical topics.” And this is an interesting way to get information on the subject of end of life care.
by Nicki Gorny | The Blade, Toledo, OH
“Where would you like to die?
“In a hospital or at home? Perhaps in the course of doing something you love?
“And what do you think happens when you die? Angel choirs or a great big nothing?
“How do you feel about hospice? About social media announcements of a loved one’s death? Would you want someone to eulogize you on Facebook or Twitter? Would you want them to keep it off the Internet? Or would it not matter to you at all because … well, you’re dead?”
Discover what Death Cafes are all about. The Pennsylvania Link to Aging and Disability Resources | Berks-Lancaster-Lebanon Service Area has Death Cafes scheduled for each of our counties for early 2020.
Come out to a Death Cafe near you to learn more about living and dying. And why Death Cafes have become such popular events.
OPINION: “The Trick to Life Is to Keep Moving | What my friendship with a woman 51 years my senior taught me about growing up.” – The New York Times
“Cora taught me that there are worse things than dying — that getting older is a process of losing your children to distance and coping with incontinence and memory loss, yes, but also of becoming more unapologetically yourself.”
“For many people, roommates and romances are the most important relationships of their late teens and early 20s. For me it was Cora Brooks, a poet and activist 51 years my senior. She taught me how to make bread without measuring the flour or water or yeast, to not fear improvising. Through Cora I learned slowness and grace.
“Cora taught me that there are worse things than dying — that getting older is a process of losing your children to distance and coping with incontinence and memory loss, yes, but also of becoming more unapologetically yourself. She got angry at the government, at the Vermont Yankee Nuclear Power Station, at her body’s failings, at her family. Her secret to recovering from multiple strokes? Turn on the radio and teach herself to dance, step by wobbly step. ‘The trick is to keep moving,’ she told me.”
Increasingly popular | “Deathwives, Death Cafes And Death Doulas. Learning To Live By Talking About Death. – Forbes Magazine
“Whatever the reason, a reluctance to face or even talk about dying is largely an American phenomenon.”
by Robin Seaton Jefferson
“‘To die will be an awfully big adventure.’ Even Peter Pan, the mischievous little boy who refuses to grow up but rather spends his never-ending childhood adventuring on the island of Neverland, attempted to see death in a positive light.
“But things were different in 1902 when Peter Pan first appeared in the book ‘The Little White Bird.’ We saw death differently then and treated it more as a part of life. Is it because we believe we’re more likely to avoid it for longer in the 21st century that we seem to shy away from talking about it? Or is it because we have removed ourselves so far from the reality of physically dealing with the dead.
“Whatever the reason, a reluctance to face or even talk about dying is largely an American phenomenon. And though there are many and varied ways for families and friends to honor their dead, we don’t seem to want to talk about it until it’s too late. And then we pay others to handle most of it.”
THREE DEATH CAFES ARE SCHEDULED FOR Lancaster County in the next few weeks. RSVP for one that fits your schedule; find out why Death Cafes have become so popular. All Death Cafes are FREE to attend, but you must RSVP.
by Robert Weisman
“WOBURN — Scanning recent police reports from the Massachusetts communities under her jurisdiction, Middlesex District Attorney Marian Ryan was alarmed to spot what she called a ‘tragic spike’ in suicides.
“Fifty-two county residents had taken their lives in the first half of this year, a toll up almost two-thirds from last year. She knew that plenty of young people battle anxiety but was surprised to learn the residents’ average age was 46. A quarter were over 60.
“‘The numbers are dramatically higher than we’ve seen in the past,’ Ryan said. Although it’s impossible to pinpoint one cause, ‘loneliness is definitely a factor,’ she said. ‘“Many older people are feeling disconnected from other folks in their communities.’”
by Josh Axelrod, Samantha Balaban and Scott Simon
“Dr. Julie Rickard thought her visit to Wisconsin over the Christmas holiday would bring a break from her day job working in suicide prevention in Wenatchee, Wash.
“The visit didn’t go as planned. After a tense fight broke out between her mother and another family member, everyone dispersed. Rickard readied herself for the trip back to the Pacific Northwest.
“At the airport, she received a call from her mother, Sheri Adler. This was not out of the ordinary — Adler, like many adoring mothers, always calls her daughter after parting ways.
On the phone, Adler wanted to tell her daughter how much she loved and appreciated her.
“‘Normally I would think, “Oh that’s a sign of suicide … ”’”
Continue reading this article at NPR.org.
“‘It’s sad he was feeling in such a desperate place in the end,’ says Lorie Juno of her father, Larry Anders.” / DARREN HAUCK / KAISER HEALTH NEWS
by Melissa Bailey and Jonel Aleccia – KAISER HEALTH NEWS
“When Larry Anders moved into the Bay at Burlington nursing home in late 2017, he wasn’t supposed to be there long. At 77, the stoic Wisconsin machinist had just endured the death of his wife of 51 years and a grim new diagnosis: throat cancer, stage 4.
“His son and daughter expected him to stay two weeks, tops, before going home to begin chemotherapy. From the start, they were alarmed by the lack of care at the center, where, they said, staff seemed indifferent, if not incompetent — failing to check on him promptly, handing pills to a man who couldn’t swallow.
“Anders never mentioned suicide to his children, who camped out day and night by his bedside to monitor his care.
“But two days after Christmas, alone in his nursing home room, Anders killed himself. He didn’t leave a note.”
Several weeks ago, a Link to Aging and Disability Resources partner (Thank you Link partner, you know who you are!) gave us this page from the February 9/10 Weekend edition of the Wall Street Journal. Here’s a link to the Wall Street Journal article, but you’ll have to sign in or subscribe to read it in full.
We’ve reproduced it below; admittedly it’s a scan and hard to read. Here’s another link to an article about the article at the John A. Hartman Foundation.
Click here to open a .pdf file of a home-made scan of part of the article that may (largely) be readable because you can enlarge it.
National Healthcare Decisions Day is April 16 | it’s about the importance of advance care planning … for everyone!
“National Healthcare Decisions Day (NHDD) exists to inspire, educate and empower the public and providers about the importance of advance care planning. NHDD is an initiative to encourage patients to express their wishes regarding healthcare and for providers and facilities to respect those wishes, whatever they may be.”
“Across the country, every healthcare facility will participate as the flagship venues for the public engagement. Other participating organizations/facilities that have their own physical spaces will engage in activities as well. Those organizations that lack physical spaces will work in conjunction with others or at non-healthcare venues (libraries, grocery stores, drug stores, etc.) to support the initiative. A variety of churches, synagogues, and mosques around the country will also support the effort by highlighting the importance of advance care planning with their congregations.”
Why do we need a National Healthcare Decisions Day?