Literature Review

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.”

Hospice of the Chesapeake launches new dementia program amid ‘urgent, significant’ need Hospice News; by Holly Vossel; 11/25/24 Hospice of the Chesapeake has unfurled a new dementia care program aimed at providing improved emotional, educational and practical support for patients and their caregivers as their conditions progress. Demographic trends were among the key factors that drove the program forward, said Monica Escalante, chief strategy and information officer at Hospice of the Chesapeake. The Maryland-based hospice and palliative care provider has seen a significant increase in demand for dementia care amid a growing population of seniors with Alzheimer’s disease and related conditions across its service region, which spans four counties in the state.

Disclosure practices in Muslim patients and the impact on end-of-life care: A narrative review American Journal of Hospice and Palliative Care; by Mona Tereen; 11/26/24 ... Non-disclosure practices hold significant weight in end-of-life care for Muslim communities, where cultural and religious beliefs are deeply intertwined with healthcare decision-making. This narrative review explores the complexities of medical decision-making and disclosure practices among terminally ill Muslim patients, examining how these factors shape palliative care delivery. Conclusion: Non-disclosure practices present significant barriers to effective palliative care in Muslim communities. To improve care outcomes, culturally competent communication strategies and family-centered decision-making models are crucial.

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:

People with Parkinson’s Disease (PD) face disproportionate rates of harm in hospital setting  Parkinson's Foundation, New York and Miami; Press Release; 11/18/24 The Parkinson’s Foundation published a new article in the December issue of The Joint Commission Journal on Quality and Patient Safety titled “Protecting Parkinson’s Patients: Hospital Care Standards to Avoid Preventable Harm.” The article identifies sustainable solutions to improve care in the hospital for people with Parkinson’s disease (PD) and details how these solutions may be generalized to develop a practical, disease-agnostic care model for all hospital and health systems that wish to avoid preventable harm. ... People with PD are at increased risk of hospitalization, with more than 300,000 people with PD hospitalized each year. While hospitalized, people with PD face increased risk of preventable harm, including longer hospital stays and deterioration of PD symptoms. Adverse outcomes range from temporary, such as higher rates of delirium, to permanent damage, including higher mortality.

'Art helps me deal with my cancer diagnosis' BBC News, West Midlands, United Kingdom; by Sophie Madden; 11/18/24 After being diagnosed with pancreatic cancer, Wendy Brookfield said she had lots of emotions. But a referral to art therapy through the Severn Hospice, based in Shrewsbury, Shropshire, helped her deal with what she was going through. "There is so much going on in your mind that being able to go along to art therapy, I could just get it out and get it down on paper," she said. "It just such a good outlet for me." Her therapy sessions led to her starting a book of sketches which she regularly filled in, sometimes during her treatment sessions. They inspired the hospice to host its own art exhibition, built around Ms Brookfield's work and with other pieces created by patients. 

Facing the tomorrows: Finding comfort, care and courage in hospice Concord Monitor, Concord, NH; by Rachel Wachman; 11/16/24 Yvette Lascelle has a favorite saying: “It is what it is.” “Whatever happens, happens,” Lascelle said with a faint smile. “They try to prevent it, but you can’t always prevent it.” The 81-year-old has been fighting multiple myeloma, or plasma cell cancer, for over a year and a half. In the past month, however, her condition has rapidly declined. Not knowing how many days she has left, she takes each one as it comes and savors the small moments – sitting with her brothers in the morning or sipping on eggnog in the afternoon. Her room at the hospice house in Concord is rarely quiet. Nurses check on her frequently and help maintain her comfort. Her priest comes by to guide her in prayer. Family and friends fill the space. Her daughter, Karen, sometimes sets up a small makeshift office and works remotely from the red chair by the window. Her son, Dan, visits after work with his wife and son. Lascelle lays underneath her lilac quilt, watching the world unfold from her bed and cherishing this time with her loved ones while it lasts. “Every day I’m happy to wake up,” the grandmother of four said. “You face the tomorrows. That’s it. It’s better than what I expected.” ...

Hazel Dell couple face manslaughter charges in death of relative, 87, in their care The Columbian, Clark County, WA; by Becca Robbins; 11/14/24A Hazel Dell couple are facing charges of manslaughter and criminal mistreatment for the 2022 death of an 87-year-old relative who was under their care. ... In April 2022, state Adult Protective Services referred a report to Clark County sheriff’s detectives about the March 18 death of Marilyn Rogers at a Longview hospice facility. The woman had lived with Joel and Kathryn Rogers, her son and daughter-in-law, at their apartment before her death, according to a probable cause affidavit. ... Emergency room staffers noted Marilyn Rogers had multiple ulcers and pressure wounds that appeared to be infected. She also showed signs of dehydration and malnourishment. Blood work showed she also suffered from sepsis due to infection. ... Doctors recommended Marilyn Rogers be placed in hospice, and once she was, staff said Kathryn and Joel Rogers never visited her. Hospice staff said they struggled to get in touch with the couple for the roughly 10 days Marilyn Rogers resided there, the affidavit states.