COVID-19 LEADS TO INCREASE IN DEATH DOULAS
AND GREATER FOCUS ON END OF LIFE
An article in Time magazine says hundreds of people in the United States have joined the ranks of death doulas during the pandemic. The National End-of-Life Doula Alliance, says the article, “grew to more than 1,000 members in 2021, from just 200 in 2019.” And the University of Vermont’s doula program, which had fewer than 200 students in 2017, had more than 600 in 2021. More doulas are training and already prepared, and more persons are seeking the help of these end-of-life doulas—either for themselves or for loved ones. The article, “Death Doulas Used to Be Rare. The COVID-19 Pandemic Changed That,” takes a broad look at the impact the pandemic has had on the way we die. The article shares about the work of doulas and their training, and offers insight into some of their experiences.
With the presence of the pandemic, says Suzanne O’Brien, “‘the awareness of death was in all of our faces.’” O’Brien’s group is called Doulagivers. The group grew from training fewer than 400 people in 2019 to more than 1,000 in 2021. People have been forced, says O’Brien, to face the realities of death—including their own mortality.
A growing number of younger people are creating end-of-life documents. While a 2020 Gallup poll revealed that the number of Americans with wills “increased only to 45% from 40% in 2005.” A more recent survey, completed by Caring.com, revealed that, for the very first time ever, adults “ages 18 to 34 were more likely in 2021 to have a will than those ages 35 to 64.” These younger adults say the pandemic had a significant impact on their decision to complete a will.
The article shares experiences of Tracy Yost, who was furloughed in 2020 from her job as a fitness manager in a retirement community. Yost called to check in on about 100 residents per week, and consistently heard how “‘wildly isolated’” they sounded. Yost’s friends shared with her about the “final goodbyes to their dying parents through video calls.” From these experiences during the pandemic, Yost became a death doula.
The article examines what it means to be a death doula. The most significant and over-riding qualities are those of compassion and time. “The industry is unregulated and does not require a license. Programs that train doulas cost “as little as $40 up to $1,000.” The courses, which may take weeks, include understanding the end-of-life stages. Students research the most common terminal illnesses, and learn about how the human body works. Doulas, says the article, often work “in tandem with hospice workers.”
Doulas spend time with their patients, learning more about their lives, and helping them identify and engage in those things that bring most meaning to them as they near life’s end. Pay from doulas range from no cost to $45 to $100 per hour. “Many doulas offer packaged rates” that range from “$500 to $5,000.” And there are no health-insurance plans for the services.
Two doulas that are profiled are Patty and Greg Howe, who are both terminally ill themselves. The article shares the joy and liberation the couple say they live with. They are deeply engaged in doula work in hopes to help others find the peace that they themselves feel.
The article closes with a look at how we die—and how that has changed over the years. Doulas, using their gifts of compassion and presence, seek every way they know to help patients face death with presence. One doula, Angela Shook, tells of ways she helps patients to meet their needs. One example is a dying patient in the winter in Michigan. He wanted to be back on the beach, but was too sick to do so. Shook lit citrus candles, warmed him with a sunlamp, put his hand in sand, and played the sounds of ocean waves crashing. “‘Death doesn’t have to be this medical event,’” says Shook. “‘There’s a lot of beauty.’” (Time, 1/26, https://time.com/6128469/death-doulas-covid-19-pandemic/?utm_medium=email&utm_source=sfmc&utm_campaign=newsletter+brief-pm+default+ac&utm_content=+++20220126+++body&et_rid=21713611&lctg=21713611)
* “Local hospice found resusing dead patients’ medications” appears in Indiana’s Chronicle-Tribune. The article says that Marion’s Heart to Heart Hospice has been inspected by the Indiana State Department of Health. The report says, “a cabinet of medications found on site contained multiple medications, including controlled substances, of both patients on service and other patients that had expired, as well as medications that were found to be relabeled and reused by the hospice.” Heart to Heart says they understand the report and have cooperated with the Department of Health. Heart to Heart also confirms its commitment to serve patients well and to make needed improvements. Heart to Heart have made several staff changes due to these issues. Heart to Heart also notes that “no patient was harmed by the deficiencies.” (Chronicle-Tribune, 1/25,
* The National Rural Health Resource Center will offer a webinar title “Rural Tele-Palliative Care and Tele-Hospice” on February 17. The webinar is part three of a “six-part series focused on rural telehealth topics.” The webinar will explore both opportunities and challenges for “critical access hospitals to provide palliative and hospice care.” The webinar is online on 2/17 from 2 – 3 CST. Details are provided at the link below. (National Rural Health Resource Center, https://www.ruralcenter.org/tasc/events/flex-program-telehealth-webinars/rural-tele-palliative-care-and-tele-hospice)
* An Op-Ed in West Virginia’s Parkersburg News and Sentinel is titled “Eliminating Certificate of Need would devastate West Virginia hospices.” The opinion is written by Janette Green, CEO of Hospice of Southern West Virginia, and secretary of the Hospice Council of West Virginia. Green maintains that West Virginia’s certificate of need (CON), in effect since 1977, has served West Virginians well. She examines what she sees as problems of promoting increased competition, the lack of benefit of such action, and the possible harm to the patients that hospices serve. She notes California’s negative experiences after dropping CON, and she lauds of the current system. (News and Sentinel,1/20, https://www.newsandsentinel.com/opinion/local-columns/2022/01/op-ed-eliminating-certificate-of-need-would-devastate-west-virginia-hospices/)
PALLIATIVE CARE NOTES
* Journal of Palliative Medicine shares an examination of the role of primary care physicians (PCPs) in improving advance care planning (ACP). The authors of the article reviewed charts of deceased patients, exploring their completion of advance care planning in any form. The study “suggest that PCP involvement in ACP correlates with earlier completion” of advance care documents. The authors says PCPs should be educated and encouraged to work with patients to complete ACPs. (Journal of Palliative Medicine, 12/20/21 (online), https://doi.org/10.1089/jpm.2021.0069)
* “Palliative care: An essential resource in caring for those with advanced illness” appears in MedCityNews. The article asserts that palliative care “must be the standard of care for all who have been diagnosed with progressive, advanced, and terminal illnesses.” Dr. John Mulder explores the history of palliative care, the reluctance of doctors to refer patients, and the value of early palliative care. (MedCityNews, 1/27, https://medcitynews.com/2022/01/palliative-care-an-essential-resource-in-caring-for-those-with-advanced-illness/)
* End of Life University offers a podcast about the Death Café. Megan Mooney, experienced in hospice and director of social services for a long-term care center, also runs a Death Café in Missouri and works on the international Death Café Facebook page. The podcast shares the history and work of the Death Café. (End of Life University, 1/24, https://eolupodcast.com/2022/01/24/ep-335-death-cafe-cake-coffee-and-talking-about-death-with-megan-mooney/?mc_cid=614013b72a&mc_eid=d0771da91c)
* Palliative Medicine reports on a Japanese study on the impact of “continuous deep sedation on survival in the last days of life of cancer patients.” The study authors compared the survival rates between patients who did and did not receive continuous deep sedation. Researchers conclude, “Continuous deep sedation with careful dose adjustment was not associated with shorter survival in the last days of life in patients with advanced cancer.” (Palliative Medicine, 1/23, https://pubmed.ncbi.nlm.nih.gov/35067124/)
* In 2019, New York Times shared “The Champion Who Picked a Date to Die.” The article was written by Andrew Keh, with input and photographs by Lynsey Addario. Photojournalist Lynsey Addario followed Belgium Paralympic champion Marieke Vervoot for three years as she lived during her decision to die by euthanasia. Recently, on 1/24, New York Times shared “Documenting a Death by Euthanasia,” a podcast about Marieke’s journey and Addario’s experience with her. And, on 1/28, New York Times published “The Right to Die: Dying with dignity raises tricky ethical questions and special reflections by Lynsey Addario over those years with Marieke. The links below lead to the two recent New York Times stories, and the third link is to the 2019 photojournalist story. (New York Times, 1/24, https://www.nytimes.com/2022/01/24/podcasts/the-daily/marieke-vervoort-euthanasia-belgium.html; New York Times, 1/28, https://www.nytimes.com/2022/01/28/podcasts/the-daily-newsletter-euthanasia-athlete.html; New York Times, 12/5/2019, https://www.nytimes.com/interactive/2019/12/05/sports/euthanasia-athlete.html)
* Colorado Public Radio shared “5 years into Colorado’s medical aid-in-dying programs, access is still an issue and researchers say educating doctors could help.” A live program is online, followed by a longer transcript about the issues Colorado has faced. Featured in the radio audio is Skye O’Neal, who shares about the deaths of her husband and father. She has worked as a hospice nurse and a physician’s assistant. She now works with Denver Health’s Medical aid in dying program. Eric Campbell, a researcher at the University of Colorado Hospital, shares more about the challenges being faced in Colorado. (Colorado Public Radio, 1/28, https://www.cpr.org/2022/01/28/5-years-into-colorados-medical-aid-in-dying-programs-access-is-still-an-issue-and-researchers-say-educating-doctors-could-help/)
* “My Turn: Doctors support End of Life Options Act,” is an opinion column in New England’s Greenfield Recorder. Physicians Shelly Berkowitz and Kate Atkinson oppose Dr. Mark Rollo’s comments in a 1/15 letter opposing Medical Aid in Dying —saying it is misleading. They elaborate on their concerns and state their support of Medical Aid In Dying (MAID). (Greenfield Recorder, 1/27, https://www.recorder.com/Letter-Shelly-Berkowitz-MD-447455070)
GRIEF AND ADVANCE CARE PLANNING NOTES
* In C-TAC’s “Policy Avenues for Increasing Access to Advance Care Planning,” (ACP), C-TAC shares about their commitment to ACP, policy implications, and ACP billing codes. The article shares links to more C-TAC information. (C-TAC, 1/26, https://www.thectac.org/2022/01/policy-avenues-for-increasing-access-to-advance-care-planning/)
* A podcast on Sounds True features David Kessler, author of “Finding Meaning: The Sixth Stage of Grief.” “People often think there’s no way to heal from severe loss. I believe that’s not true,” says Kessler. “You heal when you can remember those who have died with more love than pain, when you find a way to create meaning in your own life in a way that will honor theirs. It requires a decision and a desire to do this, but finding meaning is not extraordinary. It’s ordinary. It happens all the time, all over the world.” The first link below is to the podcast, and the second link to a transcript of the podcast. (Sounds True, 1/11, https://resources.soundstrue.com/podcast/finding-meaning-in-our-grief/; Sounds True, 1/11, https://resources.soundstrue.com/transcript/finding-meaning-in-our-grief/)
* C-TAC will host “Psilocybin Therapy and the Future of Care for Those with Serious Illness” on 2/25 from 11:00-12:55 ET. Leaders will examine latest research on psilocybin therapy and the use of psilocybin with seriously ill patients. Registration at no cost is available at the link below. (C-TAC, https://www.hectac.org/event/psilocybin-therapy-and-the-future-of-care-for-those-with-serious-illness/)
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