Literature Review

‘We don’t talk about death’: Winston-Salem journalist seeks to help people understand dying, deathbed visions Fox 8 WGHP - High Point, NC; by Bob Buckley; 5/29/24 There may not be anything that fascinates people more than death. It may be the thing many people avoid confronting the most. “In our culture, we’re pretty separated from death. And I don’t know the figures, but the vast majority … take place in hospitals. We don’t talk about death a lot in our culture,” said Phoebe Zerwick, a journalist based in Winston-Salem who recently wrote about deathbed visions for the New York Times Magazine. ... Zerwick became aware of the work of Dr. Christopher Kerr. ... “The biggest difference between hallucinations and these experiences is how the person is made to feel,” Dr. Kerr said. “Most hallucinations leave the person distressed and agitated and would be further confused. These experiences bring comfort. They bring meaning. They’re drawn from life. They really validate the life.” ... “I think the moral of the story is to be present and to be present with people when they are terminally ill. Be present when they’re dying,” Zerwick said.

56 percent willing to dip into retirement savings to be family caregiver: surveyMcKnights Senior Living; by Kathleen Steele Gaivin; 5/23/24 Fifty-six percent of Americans participating in a new survey said they would be willing to take a loan from their own retirement fund to become a caregiver for someone else. Results of the Nationwide Retirement Institute 2024 Long-Term Care Survey were released Tuesday. The research, conducted online March 12 through April 2 by The Harris Poll on behalf of Nationwide, surveyed 1,334 adults aged 28 or more years who had household incomes of at least $75,000. Dipping into retirement savings can make a serious dent into long-term finances. Forty-two percent of the respondents said they believe that being a family caregiver likely will use up the money they had planned for the future, and 43% of the total said that they are afraid that caregiving expenses will keep them from ever retiring.Editor's Note: Pair this with another article in today's newsletter, "The real cost of cancer: 49% of patients carry $5K+ in medical debt." 

Bereavement care, often an ‘afterthought,’ should be public health priority Healio; by Jennifer Byrne; 5/26/24 Health care institutions and their staffs must take action to ensure bereavement care shifts from “an afterthought to a public health priority,” according to a position paper published in The Lancet Public Health. Bereavement support often is considered part of palliative care; however, there often is a lack of continuity of care for bereaved individuals after a person dies in palliative or end-of-life care settings, the paper’s authors contend. Healio spoke with [co-author Wendy G. Lichtenthal,PhD] about what bereavement care encompasses, why it should be prioritized and how institutions can support grieving individuals who may require assistance.

Oncologists should 'revisit' end-of-life care goals: Yale, MD Anderson studyBecker's Hospital Review; by Ashleigh Hollowell; 5/22/24Administering more treatments to advanced, end-of-life cancer patients did not increase their length of survival, according to a joint study from researchers at Yale Cancer Center in New Haven, Conn., and the University of Texas MD Anderson Cancer Center in Houston. Both the American Society of Clinical Oncology and the National Quality Forum have previously recommended a cancer quality metric aimed at reducing these therapies at the end of life, according to the study, which was published May 16 in JAMA Oncology.Publisher's Note: See Systemic Anticancer Therapy and Overall Survival in Patients With Very Advanced Solid Tumors for the JAMA Oncology article.

From caregiving to mourning: Navigating the end of the road as a family caregiver The San Diego Union-Tribune; by Lauren J. Mapp; 5/21/24 ... Losing a loved one is universally challenging, but for family caregivers who dedicated themselves to their care, the loss can be especially complicated. When a loved one dies, family caregivers often find themselves grappling with a whirlwind of emotions, from sorrow and grief to relief and sometimes guilt. This emotional roller coaster is compounded by the physical and emotional toll of providing round-the-clock care. ... A significant aspect of the grieving process for family caregivers is the transition from the role of caregiver to that of mourner. This shift can be jarring for many, as their identity may have been closely tied to their caregiving responsibilities. ... Editor's Note: For 24/7 online education for family caregivers throughout their trajectory of serious illness thorhrough hospice care and their bereavement journey, visit our sponsor Composing Life Out of Loss's Video Libraries. 

Life support decisions are usually made within 72 hours. Is that too soon? Advisory Board; by Daily Briefing; 5/21/24After a patient suffers a traumatic brain injury (TBI) and is on a ventilator, when is the right time to withdraw life support? A new study published in the Journal of Neurotrauma suggests that doctors and patient family members should wait a bit longer than usual. ... The researchers found that the majority of patients whose life support wasn't withdrawn ended up dying in the hospital anyways within about six days. However, 42% of patients who continued life support recovered enough within the following year to have some level of independence, and a few even returned to their former lives.

Have a heart – caregivers need care, tooAmerican Heart Association; 5/14/24Living with a chronic medical condition after surviving a heart attack or stroke may come with additional health and personal care needs. Often survivors must rely on a family member or close friend to help. However, there’s a growing body of scientific research that shows people who serve as unpaid caregivers may not be getting the care they need to live longer, healthier lives, according to the American Heart Association.

Nurse resilience, decompression off balance: Press GaneyBecker's Clinical Leadership; by Erica Carbajal; 5/14/24Nurses have a hard time disconnecting from work, and may benefit from additional workplace resources that support them in doing so, according to findings from a new Press Ganey report on nurse resiliency. ... Below are four key findings from the report:

Providing culturally sensitive palliative care to children with cancer: A conversation with Justin Baker, MDThe ASCO Post; by Rikki Camarillo; 5/16/24In the fall of 2023, Justin Baker, MD, took on the role of Chief of the Division of Quality of Life and Pediatric Palliative Care and Director of the Quality of Life for All Program, Stanford Medicine Children’s Health, Stanford, California. He formerly worked at St. Jude Children’s Research Hospital, Memphis, as Chief of the Quality of Life and Palliative Care Division. The ASCO Post recently spoke with Dr. Baker about his new role in palliative care for the treatment of children with cancer at Stanford Children’s and the importance of culturally sensitive care for patients and their families.

Industry professionals reflect on five years of medical marijuana in Arkansas Arkansas Advocate; by Mary Hennigan; 5/13/24Since the launch of medical marijuana in Arkansas in 2019, more than three dozen storefronts have opened, at least 102,000 residents have registered for patient cards and revenue has topped $1.1 billion. The latest card count exceeds 102,000, and there’s no indication of a letup in new applications,  ... As of June 2023, one in three Arkansans with a patient card listed post-traumatic stress disorder as their qualifying condition, ... The next highest qualifying condition was intractable pain, or pain that has not responded to ordinary medications for more than six months, at nearly 30%. 

End-of-life doulas’ growing value proposition in hospice Hospice News; by Holly Vossel; 5/14/24 Hospices and other health care providers are increasingly recognizing the value proposition of end-of-life doulas. Organizations are taking varied routes to leverage doula’s skills to improve quality. End-of-life doulas support patients and their families in a number of broad and diverse ways, according to Erin Collins, program director of The Peaceful Presence Project. Collins is also a certified hospice and palliative care nurse and end-of-life doula. She serves as vice-chair of the National Hospice and Palliative Care Organization’s (NHPCO) End-of-Life Doula Advisory Council. Editor's Note: Caution. What training, professional experience, credentials, referrals, and other qualifications does the individual, end-of-life care doula bring? Not bring? What gaps in your services (for which a doula might be called) indicate that your organization needs to "step up" your community education, caregiver/family resources, psychosocial support, and volunteer presence?

Early palliative care perceptions by patients with cancer and primary caregivers: metaphorical languageBMJ Supportive & Palliative Care; by Elena Bandieri, Sarah Bigi, Melissa Nava, Eleonora Borelli, Carlo Adolfo Porro, Erio Castellucci, Fabio Efficace, Eduardo Bruera, Oreofe Odejide, Camilla Zimmermann, Leonardo Potenza, Mario Luppi; 5/13/24Methods: Data were collected through a pen-and-paper questionnaire on respondents’ perceptions of the disease, its treatment and their idea of death, before and after receiving EPC [early palliative care]. The data were analysed by identifying all metaphorical uses of language, following the ‘metaphor identification procedure’ proposed by the Praggjelaz Group.Results: Metaphors were used from a variety of semantic fields. EPC was described using spiritual terms, to indicate that this approach was instrumental in ‘restoring life’, ‘producing hope’ and making patients feel ‘accompanied’. The most recurrent metaphors were those referring to light and salvation; spatial metaphors were used to describe the treatment and the hospital as a ‘safe haven’ and ‘an oasis of peace’. 

“Mental wellbeing is as important as physical wellbeing – both are interconnected” Marie Curie Hospice; by Anne Finucane, Marie Curie Senior Research Fellow, and David Gillanders, Senior Lecturer, Clinical Psychology, The University of Edinburgh, United Kingdom; 5/13/24 At least one in every four people living with a terminal diagnosis will experience depression, anxiety, adjustment disorder or low mood. Many more will experience distress because of deteriorating health and related uncertainty. Feelings of hopelessness, discouragement and even a desire for hastened death can occur. People have reported that psychological support helps them develop better coping strategies, helps them be more open to their situation and improves communication with their families and those involved in their care.Editor's Note: Executive leaders, what value do you give to your interdisciplinary team members and their contributions to patients' mental/emotional care? What advocacy, support and recognition do you have for your social workers, chaplains, counselors? What mental wellbeing measures do your employees experiences throughout your organization--and more directly--from your leadership with them? Perhaps it's time to "take the pulse" of your culture's mental wellbeing.