Literature Review

5 books to make caregiving a little more manageable DNYUZ; 8/19/24Tina Sadarangani, a geriatric nurse practitioner in New York City, has spent years working with older adults and their families. She counsels patients on the medications they should take, the eating habits they should change and the specialists they should see. But it wasn’t until her own father became seriously ill — requiring a slew of medications, deliveries, physical therapy and more — that she understood the experience from what she calls “the other side of the table.” ... Here are five titles, recommended by health care providers and other experts, to help those who help others.

Symptom burden and quality of life among patient and family caregiver dyads in advanced cancerQuality of Life Research; by Katrina R Ellis, Allison Furgal, Feyisayo Wayas, Alexis Contreras, Carly Jones, Sierra Perez, Dolapo Raji, Madeline Smith, Charlotte Vincent, Lixin Song, Laurel Northouse, Aisha T Langford; 7/24Symptom management among patients diagnosed with advanced cancer is a high priority in clinical care that often involves the support of a family caregiver. This study seeks to identify patient and caregiver symptom clusters and investigate associations between identified clusters and demographic, clinical, and psychosocial factors (cognitive appraisals and [quality of life] QOL). The most prevalent symptom for patients was energy loss/fatigue and for caregivers, mental distress. Higher symptom burden was associated with more negative appraisals of the cancer and caregiving experience, and poorer QOL (physical, social, emotional, functional, and overall QOL). Dyads whose caregivers had more chronic conditions were more likely to be in the high symptom burden subgroup.

Person-centered, goal-oriented care helped my patients improve their quality of life Journal of the American Board of Family Medicine; by Lee A. Jennings and James W. Mold; orignially posted 5/24 issue, again on 8/15/24 When the goal is to help patients improve their quality of life, it makes sense to focus directly on the activities and relationships that are most important to each patient. This can be accomplished most effectively by following a three-step process that includes 1) connecting with the patient around what matters to them, 2) co-creating a goal-oriented plan, and 3) collaborating with patient, family, team members, and consultants to increase the probability of success. Once this approach has been mastered and the necessary systems, processes, and relationships are in place, this should not take more time than a problem-oriented approach, and it will almost certainly be more satisfying for both physician and patient. Editor's Note: Simple. Effective. Meaningful.

‘Good’ death different for everyone Altoona Mirror, Altoona, PA; 7/26/24 The social and economic inequities patients suffer in life often shapes their death” was a key point of a July 13-14 article in the Review section of the Wall Street Journal. ... In the article, which was written by Dr. Sunita Puri, a palliative care physician and the author of “That Good Night: Life and Medicine in the Eleventh Hour,” Puri focuses on the conundrum many families face when dealing with the question of where to spend the final days of life. ... “New research classifies the rise in home deaths as progress,” the message immediately under the article’s headline begins, “but we need to look more closely at what these deaths look like.” ... Puri, now 10 years into her physician career, says it is now clear to her that there is much more to a “good” death than where it occurs. “Presuming a home death is a success obscures important questions about the process,” she wrote. “Did this person die comfortably? Did their caregivers have the resources and guidance they needed? Was dying at home a choice or simply the only option?” 

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.