Literature Review

The usage of family audiobooks as a legacy for grieving children — an exploratory quantitative analysis among terminally ill parents and close persons Springer Nature Link - Open Access; by Gülay Ate, Michaela Hesse and Henning Cuhls; 10/25/24Since 2017, terminally ill parents with dependent children under the age of 18 have been able to record an audiobook for their dependent children. This service allows them to narrate how they would like to be remembered in their voice. The family audiobook is a professionally supported, voluntary, free service that is unique in Germany. ... Conclusions: The family audiobook provides a valuable opportunity for terminally ill parents with dependent children under the age of 18 to tell their own biographical story, offer support to the bereaved in remembering, and preserve the voice of the deceased for the children. In addition, this approach could help healthcare professionals to reduce the stress associated with providing end-of-life care for terminally ill parents. Editor's note: While this service and this evaluation are located in Germany, it can be replicated easily with today's user-friendly technologies. First and foremost are patient empowerment, privacy, and ownership of these most personal messages. Examine using your spiritual care, social work, and/or grief counselors to facilitate this project.

Nonprofit organizes free home cleanings for cancer patients The Dallas Express, Dallas, TX; by Patti Villegas; 10/27/24 When facing a serious illness, even simple tasks can become overwhelming. However, one nonprofit organization is stepping in to help alleviate some of that burden for individuals with cancer. Cleaning for a Reason, founded in 2006, has facilitated free home cleaning services for more than 57,133 cancer patients in the U.S. and Canada, providing services valued at a total of more than $19 million. The non-profit organization partners with residential cleaning companies and community volunteers to “clean the homes of cancer patients to provide hope, relief, control, and cleanliness,” the group’s website states. The volunteers’ work not only enhances the patients’ physical environment but uplifts their spirits as well.

‘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.

Hospital teams up with 'Sesame Street': 6 things to know Becker's Health IT; by Giles Bruce; 10/23/24 A California hospital's work with "Sesame Street" is helping advance digital health. Here are six things to know:

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.

Farmer in hospice takes one last trip to the farm Sanford Health; by Mick Garry; 10/23/24 Marvin Miller grew up on a farm near Parker, South Dakota, and then farmed the land himself after his mother and father retired. ... He is being cared for at Sanford Health’s Ava’s House, an acute-level, inpatient hospice facility in Sioux Falls, that provides 24-hour nursing care to patients. When Marvin was asked if he had anything he wanted to see or to do before his health would not permit it, he admitted ... that he would like to see the farm and crops and get another chance to take a tour of Parker, a town of about 1,200, a half-hour southwest of Sioux Falls. ... The staff at Ava’s House quickly began finding a way to make it happen. With financial assistance from the Sanford Health Foundation, they were able to rent a wheelchair van that the Millers could use to make the trip. ... The Millers are grateful the Ava’s House staff made the effort to help Marvin at a difficult time. Just as farming goes outside the scope of a normal job, so does caring for people at Ava’s House. “We’re very appreciative of the staff at Ava’s House,” Paula said. “They’re wonderful people. They set it up and organized the whole trip for us. We got to share a day at the farm with our kids.”

Safety first: How to ward off health care facility violence SmartBrief; by Julia M. Johnson; 10/23/24Panelists on an American Hospital Association webinar highlight ways in which hospitals and practices can protect their patients and themselves. ... The American Hospital Association recently hosted a webinar about what hospitals and practices need to know to protect themselves, staff members and patients. “Understanding Origins of Violence in Health Care Facilities” featured Jason Grellner of Evolv Technology and Drew Neckar of Cosecure. Both panelists spoke candidly about technology, terminology and steps that can be taken to dial down the danger at health care facilities.  

Palliative care pharmacist discusses how building relationships with patients leads to rewarding career Drug Topics - Voice of the Pharmacist; by Killian Meara; 10/22/24 A discussion with Madison Irwin, PharmD, BCPS, clinical pharmacist specialist in palliative care at University of Michigan Health and clinical assistant professor at the University of Michigan College of Pharmacy. ... Irwin currently works as a clinical pharmacist specialist in palliative care in both inpatient and outpatient settings. She supports a palliative care consult team and outpatient palliative care clinics by seeing patients who are transitioning out of the hospital or patients who have more complex medication management needs. Although there are plenty of challenges that she faces in her practice, Irwin said that really getting to know patients through her work is extremely rewarding. ... In a conversation with Drug Topics, Irwin discussed how her career has unfolded, a program that she worked on that exemplifies the value of pharmacists in patient care, opportunities out there for pharmacists to expand their role, and how high rates of chronic pain will impact the pharmacy profession in the coming years.

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. 

A simple question changed how I saw my daughter’s life Newsweek Life; by Nikki Moberly; 10/20/24 When my daughter was born almost 24 years ago, not only did I begin my journey as a first-time parent, I embarked on an odyssey that nobody could have prepared me for. This little girl with the face and disposition of an angel was born with a devastating condition, diagnosed at two-and-a-half months old with Aicardi Syndrome. ...  The first years of her life were laser-focused on learning more about her rare condition, symptom stabilization, medication adjustments, therapists, and doctor's appointments. Erin was eligible for early intervention services allowing her to go to school at age three. ... For one of those interviews, the social worker came to my home for us to complete Erin's "student profile" card. I was about to learn the power of a well-placed question. She started by simply asking: "What are Erin's strengths?" ... [Click on the title's link to continue this mother's journey through her daughter's life and death.]

Poetry, again, confronts death JAMA; by Rafael CAmpo, MD, MA; 10/16/24Poetry can help physicians in many ways at the border between life and death. Though we might think first of the consoling power of elegy in confronting mortality, other poems, like “Again,” [referenced] aid us in wrestling with what death is in the first place—and are even more useful when research falls short in attempting to demystify it. One such scientific controversy surrounds in-hospital resuscitation, especially for older adults, with studies showing inconsistent rates of meaningful survival after these potentially life-saving interventions, confounded by the physical and emotional trauma that accompanies them, poor understanding of patients’ and families’ wishes, unclear definitions of “meaningful,” and varying patient selection criteria. [The poem titled] “Again” distills some sense out of this complexity as only poetry can, with the urgent repetition of “again” expressing the ingrained imperative to act when patients experience cardiac arrest while echoing both the many previous resuscitations hospital staff well remember, along with the 2-beat, up-down muscle memory of performing chest compressions. ... Thus, a reflexive, futile endeavor becomes a human being’s dying moment, allowing us to feel closure. Debates around in-hospital resuscitation suddenly quieted, we recognize life’s inevitable finality, underscored by the poem’s ironically dignified resignation in its concluding line: “Never again did you wake.”Editor's note: Click here to access the poem, "Again."

Communication gaps among clinicians may limit conversations about prognosis, hospice Healio - HemOncToday; by Jennifer Byrne; 10/16/24 Clinicians in acute or post-acute care settings may delay or avoid serious illness conversations with patients whose cancer prognoses are worsening out of deference to the patient’s oncologist, according to study findings. Researchers conducted 37 semi-structured interviews with physicians and leaders in hospital medicine, oncology, palliative care, home health care and hospice. Investigators coded and analyzed the interviews using thematic content analysis. Evaluation of the responses yielded insights into how care silos, lack of clear clinical roles and other factors may affect communication between oncologists and other clinicians. ... "We know that the 3-month window after an older adult with cancer is discharged to a skilled nursing facility can be comprised of complex medical decision making and changing preferences of care. Lack of appropriate serious illness communication during this time can result in unwanted hospitalizations and unwanted, aggressive care at the end of life."

Rosalynn Carter Institute redefines caregiving field with the launch of research informed profiles of experiences of caregiving© BusinessWire - Rosalynn Carter Institute for Caregivers, Americus, GA; by Ava Jafarmadar; 10/15/24 The Rosalynn Carter Institute for Caregivers (RCI) today announced the launch of the Profiles of Experiences of Caregiving© (Caregiver Profiles©), an innovative framework that leads within the caregiver field by reimagining and elevating family caregivers, so they are better seen, understood, and supported. Developed in partnership with Duke University through an extensive review of over 10,000 research papers and comprehensive caregiver focus groups, these profiles shift the focus from the care recipient’s diagnosis to the caregiver’s unique experience. This new approach aims to provide more tailored, holistic support to the over 105 million people in the United States who are actively engaged in family caregiving.