Literature Review

What adult children should know when discussing their parents’ end-of-life care StudyFinds; by StudyFindsStaff, reviewed by Christ Melore; 12/8/24 Talking about death can be difficult for anyone at any time. For adult children who need to know their parents’ final wishes, it can be excruciating. A new survey is revealing the stark disconnect between our beliefs and actions when it comes to end-of-life planning. While an overwhelming 90% of adults recognize the importance of these critical conversations, half have yet to take the first step with their closest loved ones. ... The numbers tell a revealing story. Twenty-six percent of respondents simply keep putting off the conversation, while 23% admit they don’t know how to approach the topic. Sixteen percent are outright scared to broach the subject, creating a wall of silence around a universal human experience. ... When people do open up, the conversations prove surprisingly rich and multifaceted.

Living and growing: Spiritual care at end of life Juenaeu Empire; by Claire Richardson; 12/7/24My favorite Gold Creek trail was damaged in one of the 2024 storms that swept through Juneau and altered the creek with a deluge of boulders, rocks and uprooted trees. You could only walk about 100 yards before the alders blocked the route. I didn’t venture there again until recently. Imagine my surprise when the dogs disappeared down the trail and this time, with wind blowing leaves to the ground, I could see clearly that the trail had been restored. Someone had cut off branches that impeded travel and without leaves to blur the way, I could easily find the new route. I felt a delightful sense of discovery, for here was an old, familiar trail now accessible on a frosty fall morning. Even though I knew where I was going, the newness of the path energized me. I moved forward with a smile. Spiritual care offered through hospice can be a lot like finding an old soul trail, but with new twists and turns. ...  Think of your hospice chaplain as a fellow hiker. While we can’t make the journey for you, we can listen carefully to your story of traveling through life. We can walk with you at your pace, perhaps pointing out a few game trails you could explore, but always following your lead.

Dr. James O’Connell on caring for the homeless in Boston Simmons University, Boston, MA; by Simmons University; 12/6/24 “A mile from here, people are experiencing the same health disparities as they have in Third World countries,” said Dr. James O’Connell, founder and president of Boston Health Care for the Homeless Program (BHCHP) and Assistant Professor of Medicine at Harvard Medical School. ... In 1985, O’Connell was the founding physician of a program to support the people experiencing homelessness in Boston. The program received funding through a four-year grant from the Robert Wood Johnson Foundation and the Pew Charitable Trust. ... [Story about getting a homeless man into hospice care at a nursing home.] When [O'Connell] questioned him about hospice, Santo shared his perspective. “He told me, ‘I appreciate all you’ve done, but I didn’t know anyone there. I don’t want to die there. I want to die with my friends.’” After that, they arranged end of life care for Santo at the shelter. “I had never thought to ask him what he wanted,” said O’Connell. “I have since learned that I have to listen to what people want.” 

Focusing on life rather than illness: the lived experience of children with life-threatening and life-limiting conditions-a qualitative study Palliative Care and Social Practice; by Trine Brun Kittelsen, Charlotte Castor, Anja Lee, Lisbeth Gravdal Kvarme, Anette Winger; 11/29/24 This study seeks to address gaps in existing knowledge, especially the limited inclusion of children's perspectives and the exclusion of children with communicative and cognitive disabilities. The aim of this study was to explore the lived experiences of children living with LT/LL conditions. ... The findings showed that the children's attention revolved around life rather than illness. The analysis revealed the presence of three themes: wanting to engage in life, being dependent on familiar relations, and the importance of cherished items.

No One Dies Alone: new Parker hospital program offers companionship to those at the end of life Parker Chronicle; by Haley Lena; 11/27/24 Katherine Wiley, a volunteer at AdventHealth Parker, was in the hospital’s emergency department when she saw first-hand how being alongside a stranger during their final moments of life can have a profound impact on those around them. Wiley sat with an elderly woman who was dying with no one around. The patient’s sons were trying to get to the hospital from Colorado Springs but didn’t make it in time. “When they got there, I told them that I had been with their mom so she was not alone and they were very grateful,” said Wiley. Wiley shared this story with the CEO of the hospital, Michael Goebel, at the annual volunteer luncheon last year, and the following week, the No One Dies Alone program was being set up. “We can provide companionship to patients in the dying process who are truly alone,” said Wiley. “In doing so, (it) provides a gift of respect and dignity to another human being at the end of life.” The volunteers of the program are called “compassionate companions.” They do not provide medical care, but they assist with comfort care measures – they sit beside the patient, hold their hands, play soothing music or read to the patients. For as many circumstances there are that lead a person to be hospitalized, there are also as many reasons why a patient is alone. The patient could have outlived other family members and friends, said Wiley, or are estranged from their family. It could be because the patients themselves don’t want to have their family see them die, but don’t want to be alone. Or they could be a John/Jane Doe who was in an accident. “We want to be there for them, whatever those reasons are,” said Wiley. “This sort of thing feeds my soul.”

Pet Peace of Mind program alleviates stress for hospice patients Poteau Daily News; by Ashley Torres; 11/26/24 Heart of Hospice in Poteau has announced a new program that will be helping with pet care while patients are on hospice care. The Pet Peace of Mind program, which began at Heart of Hospice Poteau on Nov. 15, aims to support the bond between pets and hospice patients during their final days. According to Heart of Hospice, the Pet Peace of Mind program “recognizes and actively supports the unique bond between hospice patients and their pet,” and “aligns with the Heart of Hospice mission to provide exceptional care and unparalleled service to the patients and families who have placed their trust in us.” The program is funded through donations, and the work is done by volunteers.  ... The Pet Peace of Mind program is aptly named, because it is all truly done to alleviate the anxiety and stress that hospice patients often feel while worrying about what will happen to their beloved pets when they are gone. Knowing that their pet’s needs are being met while they are on hospice care, and knowing that their pet will be taken care of even afterwards, allows the patient to focus on their own comfort during their last days.

Education, telehealth, and access initiatives aim to improve cancer care for veteransOncLive; by Kyle Doherty; 11/26/24 Manali I. Patel, MD, MPH, MS, details several interventions developed to better serve veterans with cancer who are experiencing economic, social, and geographic barriers to care. Despite having the option of cancer care through the Veterans Affairs (VA) health network, veterans with cancer still experience economic, social, and geographic barriers to receiving high-quality care. This has prompted investigators to develop several interventions to better serve these patients. “Veterans have higher rates of lung cancer [compared with] civilian populations; prostate and bladder cancer [rates] are also pronounced [among] veterans, [and we also see] higher rates of melanoma, [all] largely due to exogenous exposure risk,” Manali I. Patel, MD, MPH, MS, said in an interview with Oncology Live. “One of the biggest barriers [to cancer care] for veterans is the lack of system level resources that can ensure veterans understand the diagnosis and treatment options, such that veterans receive care that is concordant with their goals, preferences, and values. Cancer care is quite complex and trying to not only coordinate care but explain the nuances in plain language is challenging. Having resources [available] that proactively assist veterans in their understanding and support them through cancer care is what is most needed to improve patient outcomes.”

Addressing barriers to advance care planning by adults with advanced cancers Regenstrief Institute, Indianapolis, IN; by Shelley Johns, PsyD and Susan Hickman, PhD; 11/25/24 In one of the first studies to test the utility of mindfulness to support advance care planning by adult cancer patients and their family caregivers, researchers from Regenstrief Institute and Indiana University have found that mindfulness showed promise in improving quality of life and advance care planning outcomes in patients and their family caregivers coping with advanced cancer. ... Mindfulness emphasizes paying attention to the present moment with an attitude of openness, compassion and interested curiosity accomplished through meditation and other exercises to manage stress. “Mindfulness is about noticing what’s here so we can choose the wisest response and hopefully be less emotionally reactive,” said Dr. Johns. “Mindfulness practices help individuals increase their mindfulness muscle, so to speak. Anything that we do in our life ... can be done with mindful focus, with mindful attention."

Early palliative care linked to better end-of-life outcomes in ovarian cancer AJMC - The American Journal of Managed Care, Cranbury, NJ; by Brooke McCormick; 11/22/24 Initiating palliative care (PC) more than 3 months before death was associated with improved quality of care and reduced care intensity at the end of life (EOL) for decedents with ovarian cancer, according to a study published in JAMA Network Open. Alongside oncologic treatment, the American Society of Clinical Oncology recommends all patients with advanced cancer receive early, dedicated PC within 8 weeks of diagnosis. PC benefits include prolonged survival, enhanced quality of EOL care, and improved patient and caregiver quality of life (QOL). Early referral to specialist PC is also linked to less aggressive EOL care. 

Rise in pancreatic cancer tied to better detection, study suggests Becker's Hospital Review; by Elizabeth Gregerson; 11/19/24 The rise in pancreatic cancer diagnoses can be attributed to previously undetected disease and not a rise in cancer occurrence, according to a study published Nov. 19 in the Annals of Internal Medicine. Researchers from Boston-based Brigham and Woman's Hospital and Austin, Texas-based Dell Medical School analyzed U.S. Cancer Statistics and National Vital Statistics System data of adults aged 15-39 from between 2001 and 2019 for the study. Here are five notes from their findings:

Walking pneumonia is booming − and targeting the young and the poor USA Today, Arlington, VA; by John Bacon; 11/20/24 Infections of the bacteria that cause walking pneumonia, a lesser evil of the more serious illness of pneumonia, is seeing a dramatic jump after a lengthy decline that came with the start of the COVID-19 pandemic, health officials say. Most alarming is the sharp increase in children infected with the disease. And, as with COVID-19, the impact of the disease can hit low-income Americans the hardest. The Centers for Disease Control and Prevention said infections from the bacteria that can cause walking pneumonia are common: An estimated 2 million infections occur each year in the United States. However, the true number isn't known, in part because so many people get it without seeking medical help and in part because there is no nationwide reporting system. The infections dropped off during the COVID pandemic but are now booming. Hospital emergency department discharge data from April to October showed an increase in infections of the bacteria among all age groups, according to the CDC.

Is your doctor using ‘never words’ that make you feel worse? Everyday Health; by Lisa Rapaport; 11/19/24 Words matter — especially when it comes to how doctors speak to patients and families facing a scary medical diagnosis. That’s because the exact words doctors use to explain complex health situations can make or break whether people feel heard and respected during appointments — and influence whether they follow doctors’ orders afterwards, according to a new survey published in Mayo Clinic Proceedings. Key Takeaways: