Literature Review

The work of hospicing Stanford Social Innovation Review; by Vanessa Andreotti and Habib Nabatu; Winter 2025 issue, 11/20/24As we stand at the precipice of endings—of species, ecosystems, organizations, and systems themselves—the work of hospicing is to move beyond fear and embrace the deep transitions ahead with wisdom. To be stewards of this time, we must develop the practices and capacities to tend to these endings, not with urgency or control, but with a kind of stillness that invites the birth of new ways of being. Endings are not failures; they are part of a cycle that requires presence, reverence, and humility. Our hyperfocus on growth and expansion has left us ill-prepared to sit with death—whether it be the death of industries or the biosphere—and this discomfort with grief prevents us from being fully alive in the present. How might we allow the crumbling of outdated structures without rushing to rebuild too quickly? How might we hold space for what is irreversibly changing, without rushing to save or fix it? ...

Educating patients and clinicians on end-of-life care and discussions CancerNetwork - home of the journal Oncology; by Kelley A. Rone, DNP, RN, AGNP-c CancerNetwork® sat down with Kelley A. Rone, DNP, RN, AGNP-c, to discuss the importance of speaking compassionately and ensuring patient awareness when leading end-of-life discussions among those with gastrointestinal (GI) cancers. The discussion also focused on combating burnout in the clinic, using opioids to help manage pain and other symptoms, and educating all members of a multidisciplinary team on initiating end-of-life conversations with their patients. ... As part of leading these end-of-life conversations, Rone emphasized the necessity of addressing the discomfort patients tend to feel when talking about the fact that they may die from their cancer. ... When working with other members of a multidisciplinary care team, Rone illustrated the challenge of having physicians understand that their treatments may fail in younger patients and helping other oncologists become more experienced in speaking about death with patients. ...

The dozen phrases doctors warned never say to patients, including ‘everything is going to be fine’ What's New 2Day; by Alexander; 11/8/24 “Everything is going to be okay.” No doubt you or someone you know has heard those words from a doctor, but doctors are now being warned to stop doing so because it could raise false hope. A new report has identified 12 “never phrases” that doctors should never use with patients with serious illnesses, such as heart failure, cancer and lung disease. They explain that these “isolated words or phrases not only lack benefits but can also cause emotional harm and accentuate power differences.” If a patient is seriously ill, for example, a doctor should never mention the words “withdraw care,” as this implies that the medical team is “giving up.” While “everything will be okay” may seem like a comforting phrase, researchers say this could offer false hope when dealing with a serious illness and a better expression might be “I’m here to support you through this whole process.” [Click on the title's link for the dozen phrases they identify, with alternative language and rationale.]

CNY Inspirations: Caregiving is redemptive Syracuse.com, Syracuse, NY; by InterFaith Works of Central New York; 11/3/24 I will carry him with me for my life as one of the greatest examples of caring that I ever met. I will be obscure on the details, but he cared for his wife, who was completely immobilized, with a degree of fidelity, creativity, and painstaking love that I have rarely seen and could only hope to imitate. He lived what Arthur Kleinman calls in his book of the same title, The Soul of Care. ... He says, “Caregiving, for me, at its deepest was redemptive. It redeemed me…. in caregiving, there is a common tug of war between the sometimes-bitter feelings that care is a burden and the more heartening certainty that no matter how burdensome, it is ultimately rewarding.” ... My friend never expressed that verbally, but I saw it lived as I watched him over the years through periods of anxiety, weariness, anger, hurt, despair, and through it all, intense, personal demanding caregiving. “And so, in the end, the soul of care pivots to care of the soul.” Inauspiciously, my friend took good care of his soul…and certainly helped mine.

We invite you to listen to our latest podcast: Imagine Heaven, with John Burke TCN Talks (Teleios Collaborative Network); podcast by Chris Comeaux; 10/30/24 In this inspiring episode of TCNtalks, Chris Comeaux sits down with John Burke, New York Times bestselling author of Imagine Heaven and Imagine the God of Heaven, for a soul-stirring conversation on near-death experiences (NDEs) and their profound implications. John shares the overwhelming evidence of the commonalities of near-death experiences (NDEs) and the evidence that supports their validity from across the world and from across many different cultures.  Chris begins by recounting his own transformative experience reading Imagine Heaven over his summer sabbatical, describing it as a refreshing oasis for the parched soul. John delves into the fascinating and consistent patterns found in NDEs worldwide, revealing how people from vastly different backgrounds describe similar encounters of leaving their bodies, seeing with a spiritual clarity—even those blind from birth—and entering realms filled with light, love, and peace. 

Guidelines vary when surrogates with power of attorney disagree with advance directives  Healio, Boston, MA; by Richard Gawel; 10/30/24 Inconsistent guidelines can lead to conflicts when surrogates with powers of attorney disagree with what may be described in a patient’s advance directive, according to a poster presented at the CHEST Annual Meeting. ... Key takeaways:

‘Let patients lead the way’: Hospice veterans’ advice for new nurses Hospice News; by Jim Parker; 10/25/24 ... A key barrier to building [the hospice and palliative care] workforce is that, with some exceptions, most clinicians receive little to no exposure to those types of care during their training. Nurses who are new to the hospice space often face a learning curve, according to Briana Hilmer, an Iowa-based admissions nurse for St. Croix Hospice.

The ever-rising importance of hospital chaplains RNS; by Robert L. Klitzman; 10/24/24 Frequently, chaplains are the only hospital staff member who has time to sit and speak with patients and families. ... “My religion is watching CNN,” a feisty elderly woman with cancer recently told a hospital chaplain who had knocked on the patient’s door to introduce himself. ...  [After initial resistance, they] developed a rapport, and she described her deep loneliness and terror of dying. At the end of their conversation, she felt better, grasped the chaplain’s hand firmly and said, “Thank you!” ... In recent decades, the proportion of Americans who are “religiously unaffiliated” has risen sixfold, and the percentage of “Christian” individuals has dropped about a third. Partly as a result, chaplains have, at the same time, increasingly gained training in interfaith and nondenominational approaches, and frequently see their profession as “post-religious” — extending beyond the boundaries of any one particular faith; taking nondenominational, multifaith and humanistic approaches; and commonly receiving training in counseling. With these skills they aid patients, from evangelical to agnostic, atheist and “nothing in particular,” in resetting priorities and finding sources of connection, meaning, purpose and hope. Strongly committed to aiding vulnerable and underserved populations, chaplains remind doctors to uphold the dignity of every patient.

Research synthesis related to oncology family caregiver spirituality in palliative care Journal of Palliative Medicine; by Betty R. Ferrell, Tami Borneman, Marianna Koczywas, and Paul Galchutt;  10/21/24 online ahead of print Family caregivers are central to the delivery of serious illness care and also have needs related to their role and experience. One aspect of the family caregiver quality of life (QOL) that has received less attention is caregiver spirituality. The research objectives for this analysis were (1) Describe spirituality in oncology family caregivers. (2) Determine the impact of palliative care interventions on spirituality and related variables in oncology family caregivers. (3) Describe findings from the research literature related to spirituality in family caregivers. The authors include two nurse researchers (BF, TB) and a physician (MK) who conducted these studies and a board-certified chaplain (PG) who contributed his expertise in chaplaincy.  ... The authors' research synthesis and the literature support the importance of additional research and clinical focus in family caregiver spirituality in serious illness care. 

Hospice Sabbath Progressive Journal; by Hospice of Chesterfield County Foundation; 10/14/24 As you attend your place of worship the weekend of November 1-3, 2024, you may see a single white carnation displayed in a prominent location. Hospice of Chesterfield County Foundation has chosen the white carnation as a symbol for the observance of Hospice Sabbath. Churches are being asked to participate by displaying a white carnation in memory of all who have received Hospice services. ... These individuals were significant to their families and to our community. They were our neighbors, our co-workers, our friends, and our loved ones. ... In its simple elegance, the white carnation symbolizes the hope and dignity which Hospice helped to ensure for these individuals and for their families. In its fragile beauty, the carnation reminds us of the sacredness of life and the mystery of death. Hospice recognizes that endings are inevitable; yet, life is affirmed as persons are encouraged to live each moment to its greatest capacity.

Death cafes: Demystifying the inevitable over tea and cookies MD edge - Internal Medicine News; by Megan Brooks; 10/15/24 “Death cafes” — where people gather to discuss death and dying over tea and cookies — have gained momentum in recent years offering a unique way for people to come together and discuss a topic that is often shrouded in discomfort and avoidance. It’s estimated that there are now about 18,900 death cafes in 90 countries, with the United States hosting more than 9300 on a regular basis. This trend reflects a growing desire to break the taboo surrounding discussions of death and dying. But these casual get-togethers may not be for everyone, and their potential benefits and harms may depend on who attends and who facilitates the discussion. ... [Click on the title's link to continue reading these significant cautions.]

The death issue: Austin’s Children’s hospice professionals advocate for honesty The Austin Chronicle; by Maggie Quinlan; 10/11/24 Sometimes parents wait too long to tell their sick children that they will die. Sometimes, by the point of disclosure, their child can no longer speak. ... She said often the dying child will become an “emotional caretaker” in the hospital room where they’ve just learned that their illness will kill them. “Even though it’s happening to them, they tend to really want to protect their family.” It doesn’t have to be that way. Cosby says a lot of the job is beautiful, even fun. Families make memories, and child life specialists help make it happen. They go to see the ocean. They throw private proms and graduation ceremonies. They finger paint. They crack jokes. They decide to make the most of precious little time. ... “Grief is the price of love, and there’s so much love in there,” says Heather Eppelheimer, another Dell Children’s child life specialist. “We have to be able to love fully in order to also grieve fully.” Child life specialists respect family wishes and also advocate for honest, clear language about death. They say to use that word – death, dying, die – and avoid “passing away” (“To where?” Cosby asks). That kind of straightforward communication isn’t part of our cultural hardwiring, Cosby says, but it makes everything easier. In her life, when people aren’t comfortable talking about death, she asks why. What are they afraid of? ...

How 300 terminally ill couples had their ‘perfect’ weddings thanks to this nonprofit (Exclusive) People Magazine; by Johnny Dodd; 9/28/24 "We're in the business of hope," says Wish Upon a Wedding's executive director, Lacey Wicksall. On any given day, Lacey Wicksall can be found fielding phone calls from couples across the nation who are deeply in love but are running out of time. And that’s exactly why Wicksall is talking to them. As the executive director with the Chicago-based nonprofit Wish Upon a Wedding, the 43-year-old mother of two helps provide free weddings and vow renewals to couples who are facing a terminal illness or a life-altering health circumstance. “I just got off the phone with a couple a few hours ago and I still have tears in my eyes,” says Wicksall of a recent phone call, vetting a couple who were in the process of applying for one of the nonprofit’s weddings. “We were all in tears. It’s hard.” ... Since 2009, the organization has provided nearly 300 ceremonies by working with wedding industry professionals who donate everything from catered food and wedding attire to a venue, videographers and DJs. ... Before being selected for an interview by Wicksall and “wish coordinator” Megan Biehl, they verify the applicant’s health status through their physician or hospice worker, then go to work learning more about the couple and what they envision for their special day. ...