Literature Review

Caregivers of end-of-life patients reveal the last words they hear most often and the most common regrets from patients WhatsNew2Day; by Alexander; 7/27/24... While each person’s final moments are different, chaplains and palliative care nurses have said most people approach their death with “radical acceptance.” People who are actively dying also often have a new sense of clarity about the universe and may even have a temporary burst of energy or sudden moments of clarity if they have dementia. The last words patients usually say to their families are to tell them they love them... [Often, people] who are in the midst of dying want to be surrounded by their loved ones and pets. Their final words are often words of love and pleas for forgiveness, as well as expressions of regret, ... [Another described that people show] "a desire for connection" with loved ones and faith. Editor's Note: This article provides a balanced scope of descriptions from several professionals, notably Catherine Duncan, Annemarie Switchulis, Neal Shah, and Zackary Price. In this day of social media, some hospice professionals (past or present) tout definitive, authoritative descriptions of what all dying persons experience, with too many assumptions and generalizations. Beware what you read and distribute, especially if the tone and language (of other articles) are sensationalized in a way to garner social media "expertise," followers and Shares--at the expense of more balanced, sensitive, diverse, personalized experiences.

Can Artificial Intelligence speak for incapacitated patients at the end of life? JAMA Internal Medicine; by Teva D. Brender, MD; Alexander K. Smith, MD; Brian L. Block, MD; 7/22/24 Viewpoint: Imagine meeting with the daughter of a critically ill patient. The patient (her mother) had a cardiac arrest, is in multiorgan failure, and cannot communicate. The daughter is uncomfortable making decisions because they are estranged and never discussed what her mother would want in this type of situation. The patient has no advance directive or alternative surrogate. Now imagine this meeting taking place in a future where the mother’s medical visits have been audio recorded. Furthermore, you have access to an artificial intelligence (AI) algorithm that can identify and play excerpts of the mother talking about what mattered most to her. You and the daughter listen to these recordings together. Then you share that another algorithm, trained on 7 million patient records, predicts that the mother’s chance of walking again is less than 5%. ...

5 evolving trends on end-of-life matters The Leavenworth Echo, Wenatchee, WA; 7/21/24 One of the most difficult conversations many people have in their lives involves the end of life. While often uncomfortable to think about or discuss with others, talking about and sharing end-of-life wishes should be a common occurrence. In fact, 91% of Americans believe talking about death and dying is healthy and normal, but 1 in 4 (27%) are uncomfortable actually doing it, according to a first-of-its-kind survey commissioned by the National Funeral Directors Association (NFDA), the world’s leading and largest funeral service association. With nearly one-third (31%) of survey respondents admitting they’re uncomfortable thinking about their own mortality, Remembering A Life, the organization’s online resource for accessing grief resources and funeral planning information, is offering a free downloadable guide, Start the Conversation, to help family and friends have meaningful conversations about loved ones and how they’d like to be remembered.

How to advocate for an older loved one in the ER or hospital US News & World Report - Health; by Christine Comizio; 7/17/24 Picture your 80-year-old father in the intensive care unit needing dialysis or your 76-year-old mother with severe dementia facing emergency surgery. These scenarios are becoming increasingly common as 1 in 6 adults in the U.S. are now over 65, a number steadily rising with the aging baby boomer generation. And as our population ages, the likelihood of an older family member becoming hospitalized grows. Many of us will inevitably confront the challenges of hospitalization – oftentimes due to a medical emergency when we least expect it. The critical question is: Are you prepared? ... Editor's Note: For hospice and palliative care professionals who have not yet experienced the serious illness needs of an "older loved one in the ER or hospital," know that personally dealing with needs requires different roles, skill sets, presence, actions, and advocacy than those in your professional role. Be true to your relationship and role with the person needing care. This practical article can be a great resource for your organization's employees, volunteers, and community education. 

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."