Literature Review

Family members' health can suffer when relative has cancer: Study Becker's Hospital Review; by Elizabeth Gregerson; 9/13/24 Individuals are at an increased risk of cardiovascular disease and psychological illness after a family member is diagnosed with cancer, according to a study published Sept. 9 in Cancer. Researchers from institutions across the U.S. analyzed data of patients diagnosed with genitourinary cancer between 1990 and 2015 who had first-degree relatives or spouses, from the Utah Population Database. The cohort of 49,284 patients and 77,938 relatives was matched with a similar control group and followed up within one-, three- and five-year periods. Among patients with genitourinary cancer, their family members had a "10% increased risk of developing a psychological illness and a 28% increased risk of developing cardiovascular disease" one year after diagnosis, according to the study. "This study provides population-level evidence to support the hypothesis that cancer diagnoses will lead to adverse health outcomes for family members of patients with cancer," the study authors wrote.

[Norway] Quality of life and relationships in caregivers of people with dementia. A gender perspectiveAmerican Journal of Alzheimer's Disease and Other Dementias; Heidi Bjørge, Kari Kvaal, Ingun Ulstein; Jan-Dec 2024Home-dwelling people with dementia rely on their family members to be able to stay at home. This affects the family caregivers' quality of life (QoL). Both male and female caregivers' depression influenced their QoL. For females, their own social distress influenced their QoL, and for males, their experience of their care receivers' overemotional attitude influenced their QoL. Significant gender-specific differences were found, indicating that gender must be considered when approving caregivers' needs and planning interventions for caregivers.

Grief redoubled by a death certificate delayed: A seven-week odyssey in search of a vital record The Provincetown Independent; by Aden Choate; 9/4/24 Richard Pask, 72, came to the select board on Aug. 27 distraught. His wife, Carol Harris, 69, who had ALS, had died at home in hospice care on July 18, he said, and the town had still not issued a death certificate. Without the certificate, Pask could not access his late wife’s pension payments, manage their mutual assets, update annuity contracts, or cancel service accounts in her name. The Social Security Administration, which has continued to issue payments to Harris — a death certificate is required to stop them — had launched an investigation into possible fraud, ...Editor's note: Root causes from this complex case study relate to the family having used a "green burial" which is becoming more common, where permitted. This case study represents a gap in collaboration between typical systems. Hospice personnel who have any 'touch-points" with the death certificate process must know and adhere to federal, state, and local policies and procedures, especially when variables occur (such as green burials). 

Patients are everyday heroes The Andalusia Star News, Andalusia, AL; by Vickie C. Waster; 9/2/24 One of my favorite songs is by Mariah Carey. The communication of the chorus speaks to what we in hospice and other areas of healthcare experience every day. This song always invokes empathy in my heart, and I believe many of you can truly resonate with the lyrics, as we share a common experience in our roles in healthcare. ... The heroes we encounter are our patients, families, and their caregivers. They show heroism in their resilience, their ability to find hope in difficult circumstances, and their unwavering support for each other. As hospice professionals, we acknowledge that we are entrusted to provide medical, spiritual, and emotional support to those in our care. We do this with a deep sense of humility and humbleness, always mindful of the respect our heroes deserve.  “A hero is an ordinary individual who finds the strength to persevere and endure despite overwhelming obstacles.” Christopher Reeve

Avoid these mistakes in palliative care to enhance your loved one's well-being Leesville Leader, Lake Charles, LA; by Evertise Digital; 8/26/24 For people with life-threatening diseases, palliative care is crucial in providing comfort and improving quality of life. It’s essential to focus on the details and avoid common mistakes in order to deliver good treatment. Mistakes in palliative care can inadvertently cause discomfort or diminish the quality of the support provided. It’s critical to recognize and steer clear of certain mistakes to guarantee that your loved one receives the finest treatment possible. By focusing on these key areas, you can enhance their well-being and provide the compassionate, attentive care they need during this challenging time.

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.