Literature Review

[United Kingdom]  'My son died at 24 - now I'm doing his bucket list' BBC News; by Adam Eley and Alison Holt; 12/16/24 Alex Spencer's son Declan - who had Duchenne muscular dystrophy - died last year at the age of 24, and she admits she has still not gone a day without crying. "I think society has a misconception that a carer gets their life back [when a loved one dies]," she said. Declan had drawn up a bucket list but died before he could finish it. Now Alex, who wants to raise awareness of the difficulties disabled people face in getting the right care, is taking up the challenge - including visiting Paris, getting a tattoo Declan designed and taking his adapted van around a famous German race track.

[Germany] Challenges of regional hospice and palliative care networks: A group discussion study with coordinators and network expertsPalliative Medicine; Sven Schwabe, Hanna Aa Röwer, Christoph Buck, Eileen Doctor, Nils Schneider, Franziska A Herbst; 12/24Within hospice and palliative care, professionals from various disciplines collaborate to deliver comprehensive care to terminal patients and their relatives. Regional hospice and palliative care networks face numerous challenges relating to: (1) establishment and development, (2) infrastructure, (3) moderation, (4) public relations and information exchange, (5) education and training and (6) the development of regional care services and practices. Sustainable infrastructure, competent network governance and adequate resources for network members are essential for the success of regional hospice and palliative care networks. To improve networking, funding conditions should be simplified, the involvement of network partners should be improved and network coordinators should receive training in network management.

The International Association for Hospice & Palliative Care has a new website IAHPC, The International Association for Hospice & Palliative Care; Email communication; 12/3/24 The IAHPC team is delighted to announce the launch of our brand-new website. It’s quite a change from the old one! We think this is a great way to close out a very fruitful year that included the implementation of several research projects, new online courses, public webinars, and multiple news bulletins about the accomplishments of our members worldwide.... [Content]  is organized around our four core areas of work: Advocacy, Education, Research and Communications. And as before, you can learn About Us, explore Resources, and the get to know Members through the topline tabs. This design allows you to navigate more easily to the topics that interest you and lets us keep you better informed about our progress in those areas.

[China] Psychological resilience and frailty progression in older adultsJAMA Network Open; Bo Ye, PhD; Yunxia Li, MPH; Zhijun Bao, PhD; Junling Gao, PhD; 11/24In this cohort study of community-dwelling older adults, a longitudinal association between PR [psychological frailty] and frailty progression was found. The results suggest that monitoring changes in PR can help forecast future frailty trajectories, particularly highlighting the need to support individuals facing declines in resilience. Targeted interventions that prioritize enhancing PR have potential to prevent and ameliorate frailty.

[New Zealand] Palliative care podcast’s win a ‘complete surprise’ Otago Daily Times, New Zealand; by Matthew Littlewood; 12/2/24 A Dunedin carer’s attempts to bring conversations about palliative care to a wider audience has been acknowledged at the New Zealand podcasting awards. Otago Hospice care nurse Denise van Aalst told the Otago Daily Times that winning the bronze medal in the Best Interview Podcast category for her podcast Ending Life Well came as a "complete surprise". The 29-episode series was launched about two years ago, and covered subjects such as self-care, legal matters, funeral planning and whānau manaaki (families who provide care to a kaumātua at end of life). "We knew that our podcast was helpful for people. "We don’t talk about death and dying in polite society, and people are often now going in and helping to care for somebody at the end of life with little experience or knowledge, and they don’t know where to go to get that."

[Great Britain] British lawmakers give initial approval to a bill to allow terminally ill adults to end their lives AP - The Associated Press, London, UK; by Brian Melly and Pan Pylas; 11/29/24 British lawmakers gave initial approval on Friday to a bill to help terminally ill adults end their lives in England and Wales, following an impassioned debate that saw people sharing personal stories of loss and suffering. Members of Parliament approved the assisted dying bill by a 330-275 vote, signaling their approval in principle for the bill, which will undergo further scrutiny before it goes to a final vote. Friday's vote came after hours of debate — emotional at times — that touched on issues of ethics, faith and law. There was no braying and shouting that often marks debates in the House of Commons and speeches were considered respectfully and heard in silence. ... Supporters said the law would provide dignity to the dying and prevent suffering, while protecting the vulnerable. Opponents said the disabled and elderly were at risk of being coerced, directly or indirectly, to end their lives to save money or relieve the burden on family members. Others called for the improvement of palliative care to ease suffering as an alternative.

Symptom screening for hospitalized pediatric patients with cancer-A randomized clinical trialJAMA Pediatrics; L. Lee Dupuis, RPh, PhD; Donna L. Johnston, MD; David Dix, MBChB; Sarah McKillop, MD, MSC; Sadie Cook, BA; Nicole Crellin-Parsons, BMSc; Ketan Kulkarni, MD; Serina Patel, MD; Magimairajan lssai Vanan, MD, MPH; Paul Gibson, MD; Dilip Soman, PhD; Susan Kuczynski, HBSc; George A. Tomlinson, PhD; Lillian Sung, MD, PhD; 11/24Pediatric cancer survival outcomes are excellent, but patients often require intensive therapies to achieve a cure. Pediatric patients with cancer experience severely bothersome symptoms during treatment. It was hypothesized that symptom screening and provision of symptom reports to the health care team would reduce symptom burden in pediatric patients with cancer. In this randomized clinical trial, among pediatric patients with cancer admitted to a hospital or seen in a clinic daily for at least 5 days, symptom screening with Symptom Screening in Pediatrics Tool (SSPedi) improved total symptom scores compared to usual care.

[Canada] Feasibility of prospective error reporting in home palliative care: A mixed methods studyPalliative Medicine; Allison M Kurahashi, Grace Kim, Natalie Parry, Vivian Hung, Bhadra Lokuge, Russell Goldman, Mark Bernstein; 10/24 Palliative care patients may be particularly vulnerable to experiencing errors due to the complex communication among interdisciplinary team members (including the patient and their caregivers), the use of high-risk medications such as opioids and benzodiazepines, polypharmacy, patient frailty, and patient cognitive decline. Care in patients’ homes presents additional challenges to patient care that are unique from hospital settings: Decreased communication about roles and responsibilities in care can result from involvement of multiple care teams and different electronic records. The collaborative nature of care in a home-based palliative care context may present unique challenges to translating error reporting to improved patient safety. Physicians are amenable to error reporting activities so long as data is used to improve patient safety.

[UK] Multiple points of system failure underpin continuous subcutaneous infusion safety incidents in palliative care: A mixed methods analysisPalliative Medicine; Amy Brown, Sarah Yardley, Ben Bowers, Sally-Anne Francis, Lucy Bemand-Qureshi, Stuart Hellard, Antony Chuter, Andrew Carson-Stevens; 10/24 About 25% of palliative medication incidents involve continuous subcutaneous infusions. Complex structural and human factor issues make these risk-prone interventions. Primary incidents (most proximal to patient outcomes) leading to inappropriate medication use (including not using medication when it was needed) were underpinned by breakdowns in three major medication processes: monitoring and supply ... administration ... and prescribing ... Recurring contributory factors included discontinuity of care within and between settings, inadequate time, inadequate staffing and unfamiliarity with protocols. Psychological harms for patients and families were identified. System infrastructure is needed to enable timely supply of medication and equipment, effective coordinated use of continuous subcutaneous infusions, communication and continuity of care.

[United Kingdom] After tragedy, NJ doctor finds renewed purpose working — and living — at a hospice My Central Jersey - NorthJersey.com; by Scott Fallon; 11/14/24 Even though she was on hospice care for terminal cancer at a New York hospital, Sandy Cattani’s last days were marred with pain and suffering. At one point, she began flailing so much in her hospital bed that her husband, Dr. Charles Vialotti, and other family members had to help hold her arms and legs down. This is not how any patient should die, Vialotti thought. He ought to know, having helped pioneer hospice care at three New Jersey hospitals. About a year after Sandy's death, Vialotti took the unusual step of moving into the Villa Marie Claire hospice in Saddle River, where he has spent 14 years attending to the terminally ill.

[UK] Large language models for mental health applications: Systematic reviewZhijun Guo, Alvina Lai, Johan H Thygesen, Joseph Farrington, Thomas Keen, Kezhi Li; 10/24The study identifies several issues: the lack of multilingual datasets annotated by experts, concerns regarding the accuracy and reliability of generated content, challenges in interpretability due to the "black box" nature of LLMs [large language models], and ongoing ethical dilemmas. These ethical concerns include the absence of a clear, benchmarked ethical framework; data privacy issues; and the potential for overreliance on LLMs by both physicians and patients, which could compromise traditional medical practices. As a result, LLMs should not be considered substitutes for professional mental health services. However, the rapid development of LLMs underscores their potential as valuable clinical aids, emphasizing the need for continued research and development in this area.

[England] Woman doing race for hospice that helped husband BBC News; Lorna Bailey and Andrew Dawkins; 11/4/24 A woman is taking part in a 120km (75-mile) race over four days through the deserts of Jordan for a hospice that helped care for her husband. Charlotte Rochenard-Taylor, from Warwick, said running became a way for her to cope with grief, after Jamie died from a brain tumour in June last year. She is participating in the Marathon des Sables to raise money for Myton Hospice, which has sites in Coventry, Warwick and Rugby. Ms Rochenard-Taylor said it was "just a way to keep alive, if that makes sense, getting again out of my comfort zone to just feel like fully alive". One of her husband's last wishes was to die at home, stated the runner, who made it her "mission for this to happen". She added: "Thanks to the Myton Hospice, the at-home team... that was made possible." ... "I [found] that running actually became for me a way to cope with the grief, just to get out there and just get the rage out and just... mental wellbeing really." Ms. Rochenard-Taylor, who broke her pelvis a few years ago, said the charity was close to her heart, and the race starting on Tuesday was an ideal way to support it.