Literature Review

Study finds new program streamlined hospice transitions from the emergency department Medical Xpress; by Brigham and Women's Hospital; 7/8/24 For patients who are in the final stages of both gradual and sudden terminal illnesses, hospice care can provide safe, comfortable, and dignified care at the end of life. However, many patients, especially those with complex diseases and treatments, may end up in an emergency department (ED) and either die there or die shortly after being admitted into inpatient care at a hospital, despite their goals of care being better aligned with hospice care.

Being present is one way to help dying friendAsk the Doctors; by Elizabeth Ko, MD and Eve Glazier, MD; 7/5/24Dear Doctors: My friend was diagnosed with multiple myeloma 10 years ago. His chemo is no longer working, and his doctors say there’s nothing else to be done. He has accepted whatever is coming. He has lost weight, and sometimes the pain is bad. How can I help him?Dear Reader: No matter how long someone has been dealing with a serious illness, the cessation of active treatment can be devastating. This is true not only for the person approaching the end of their life, but also for family and friends. The response to this transition often includes a rotating mix of grief, sorrow, fear, anxiety, dread and anger. However, people also often feel acceptance, peace, hope and even relief. Again, these are experienced not only by the individual who is ill, but also by the people around them. When spending time with someone with a terminal illness, you are looking for balance. That is, you want to be supportive and helpful, but not overwhelm them with your attentions. Hospice care professionals say this can be achieved by asking the person what they need. ... Always check with the person before starting a new task or a project. This keeps them in control of the events around them, which bolsters mental and emotional well-being. [Italics and bold are from this newsletter's editor.]Editor's Note: Calling all hospice and palliative leaders, in the midst of carrying out our professional roles most of us experience the dying and deaths of family, friends, and acquaintances. This article gives meaningful, practical ways to both be present and do simple things that can empower and support the person who is dying. We invite you to pair this article with our newsletter's "Today's Encouragement: We are human beings ..."

Empowering ‘deeply undervalued’ caregivers would improve ‘lifeline for older adults’ McKnights Senior Living; by Kimberly Bonvissuto; 6/28/24 Direct care workers and family caregivers remain “deeply undervalued” and often overlooked despite calls for investment in the care economy, according to the authors of a new report. “These caregivers provide a lifeline for older adults, people with disabilities, and people living with chronic conditions,” PHI and the National Alliance for Caregiving said in an issue brief released Wednesday. “Empowering them in their roles will help to ensure high quality, responsive care to meet the needs and preferences of millions of Americans now and in the future.” The organizations called on providers, Congress, the Department of Labor, the Centers for Medicare & Medicaid Services, the federal Health Resources and Services Administration, states, managed care plans and advocates to invest in the “essential partnership” between direct care workers and family caregivers. The new brief includes insights from a variety of stakeholders ...  The result is a list of recommendations that prioritize improvements to direct care jobs.Editor's Note: Our sponsor, Composing Life Out of Loss, equips hospice and palliative care organizations with caregiver education and support video libraries to strengthen relationships between the direct care professional and the family caregiver, with timely information for the entire family. Contents are written to CMS CoPs, CAHPS, and contemporary grief research; English and Spanish.

Supporting the Sandwich Generation: Taking care of the caregiver The Examiner News, Mount Kisco, NY; by Mary K. Spengler; 6/25/24 Many Westchester residents struggle to find a balance between work and home responsibilities. Those who fall in the “sandwich generation,” typically qualified as those in their 30s or 40s, can find themselves with the unique role of bringing up their dependent children while also caring for their aging parents, all while juggling their careers. Multigenerational needs became even more pressing during the pandemic, with record numbers of adult children moving back home, younger children having to switch to virtual or hybrid learning and elderly parents needing new forms of care. Sandwich generation caregivers provide an important source of support and love to family members, and often experience feelings of satisfaction and meaning in their lives from being in this role. However, many also feel highly strained and overwhelmed due to the emotional, physical and financial burden weighing on them. Implementing positive strategies to better care for themselves while they care for others is imperative to combating caregiver burnout. ... Editor's Note: Mary K. Spengler is a registered nurse and social worker and serves as CEO of Hospice of Westchester.

Children’s Healing Center opens in Ypsilanti Township in July DBusiness Magazine, Detroit, MI; by R. J. King; 6/24/24 The Children’s Healing Center will open its doors in Ypsilanti Township on July 8, offering children with weakened immune systems and their families a safe and clean place to play. ... The facility is the Children’s Healing Center’s second location after first opening its doors in Grand Rapids in 2015. The new state-of-the-art 11,000-square-foot facility features a hospital-grade environment where families can engage in a diverse range of innovative programming free of charge. “It has always been our goal to open a second location of the Children’s Healing Center,” says Amanda Barbour, founder and CEO of Children’s Healing Center. “The kids, young adults, and families who rely on us have very few options for social interaction, so we provide an invaluable outlet to build friendships and fight the effects of isolation and loneliness. The Children’s Healing Center states it is a first-of-its-kind year-round recreational facility for kids and young adults aged 0-26 with weakened immune systems and their families that provides opportunities for play, programming, education, and socialization. 

‘I tried to get into their shoes and their culture’. Care worker experiences in cultural end-of-life care: Interpretative phenomenological analysis Journal of Clinical Nursing / Early View; by Elizabeth Lambert RN, BN (Hons), Jo Gibson RN, BN, PhD, MAdvNsgPrac, Kasia Bail RN, BN(Hons), GCHE, PhD Aim: What are care workers' lived experiences caring for people of culturally and linguistically diverse backgrounds during end-of-life care?What does this paper contribute to the wider global community? This study highlights the importance of understanding care workers’ experiences in providing culturally appropriate end-of-life care.

They sacrificed to care for family and ended up on the street Wisconsin Public Radio; by Kat McGowan; 5/29/24 ... A son or sibling or niece gives up their own apartment or full-time job to look after a relative who needs help. They share expenses, maybe living off of a benefits check. But when that family member passes away or moves to a nursing home, the social security or housing subsidy stops coming. The caregiver is in mourning, out of a job and out of a place to live. “These were folks who had left behind something to go care for mom, and then the bottom falls out,” says Margot Kushel, a homelessness researcher and professor of medicine at University of California, San Francisco. Her team documented this pattern in their intensive surveys and in-depth interviews of older homeless Californians. ... Kushel envisions one brighter possibility. Given the extreme shortage of capable home caregivers, both in California and nationwide, people who have played that role for family could be recruited to do the same job for others, helping to build this essential workforce. “If you’re caregiving for 15 months for your mom, for instance you probably have transferrable skills,” she says.Editor's Note: Pair this with recent articles we posted on 5/30/24, "The real cost of cancer: 49% of patients carry $5K+ in medical debt" and "56 percent willing to dip into retirement savings to be family caregiver: survey."

‘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.

The real cost of cancer: 49% of patients carry $5K+ in medical debt Becker's Hospital Review; by Ashleigh Hollowell; 5/28/24 ... Now, 47% of cancer patients accumulate debt as a result of their medical needs, The Wall Street Journal reported May 28. ... Some Americans are facing $38,000 or even more in medical debt, the Journal found. Additionally, more cancer patients are filing for bankruptcy, which one study linked to an 80% increased risk of dying. ... A 2024 survey of 1,284 cancer patients and survivors led by the American Cancer Society Cancer Action Network also found that: ...

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.

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’.