Literature Review

[The Netherlands] Family concerns in organ donor conversations: A qualitative embedded multiple-case studyCritical Care; Sanne P C van Oosterhout, Anneke G van der Niet, Wilson F Abdo, Marianne Boenink, Jelle L P van Gurp, Gert Olthuis; 12/24Listening and responding to family concerns in organ and tissue donation is generally considered important, but has never been researched in real time. [This study found that] concerns clustered around six topics: 1) Life-event of a relative's death, 2) Dying well, 3) Tensions and fears about donation, 4) Experiences of time, 5) Procedural clarity, and 6) Involving (non-)present family. When concerns were highly charged with emotion, the clinicians' responses were less frequently attuned to families' needs. The identified concerns and the distinction between clearly and less clearly articulated concerns may prove valuable for clinicians to improve family support. We advise clinicians to engage with a curious, probing attitude to enhance the dialogue around concerns, elaborate on less clearly articulated concerns and identify the informational needs of the family.

Uruguay’s iconic ex-President Jose Mujica says his cancer has spread and that he’s dying Associated Press - World News, Santiago, Chile; by Nayara Batschke; 1/9/25 ... “Honestly, I am dying,” said the former leader, who governed the small South American nation of Uruguay from 2010 to 2015. The article noted that he had tears in his eyes. “What I ask is that they leave me alone. Don’t ask me for more interviews or anything else,” he said. “My cycle is over.” ... In the interview with Busqueda, Mujica said his autoimmune disease, severe kidney disease and other underlying medical problems led to his decision not to pursue treatment after medical tests showed his cancer had returned and metastasized. “I’m an old man, and because I have two chronic illnesses my body cannot handle it,” he said. ... Mujica told Busqueda that he would devote his “final stage” of life to his farm on the outskirts of Montevideo, the capital, where he has grown chrysanthemums with his wife for decades.Editor's note: Whatever one's political stances, may we see and hear the unifying, universal inevitabilities of facing dying and death.

[France] Requesting euthanasia or assisted suicide when it is illegal: A qualitative study about relatives' experiences of patients hospitalized in French palliative care unitsPalliative Care and Social Practice; Camille De Cock, Florence Mathieu-Nicot, Hélène Trimaille, Mathilde Giffard, Aline Chassagne; 12/24Requests for euthanasia and/or assisted suicide are generally understood by relatives. However, receiving and discussing such requests is a challenging and emotionally demanding task, generating significant suffering. All relatives seem to experience some degree of suffering, although its expression varies greatly between individuals. We encourage healthcare professionals to identify the nature of this suffering and to invite patients and their relatives to openly discuss these issues and to proactively address the request.

[China] Family members' experiences of surrogate decision-making in hospice care: A systematic review of qualitative studiesInternational Journal of Nursing Studies; Ting Yu, Yijing Li, Ziyi Hu, Shanshan Liu, Cong Wang, Qian Chen, Yan Jiang; 12/24Determining whether patients receive hospice care at end of life is complex for family members. This process begins with the coexistence of rational and emotional motives for decision-making, involves preparation for decision-making through the acquisition of knowledge and experience about hospice care, and culminates in reflection on the entire decision-making process. These findings underscore the importance of providing sufficient informational and emotional support to family decision-makers, which can improve decision-making and promote more compassionate end-of-life care. Future research should focus on developing effective strategies to strengthen these support systems.

[Wales] Inside a children's hospice, a life-affirming and laughter-filled place that offers so much WalesOnline; by Taite Johnson; 12/29/24 When most people think of a children's hospice they often expect it to be a sombre place filled with sadness. But after spending some time at Ty Hafan I found it's actually quite the opposite. Laughter fills the halls as families make everlasting memories for themselves – and potentially the last for their child. Ty Hafan's hospice, overlooking the serene view of the sea in Sully in the Vale of Glamorgan, has been providing essential end-of-life care for children in a safe space in Wales for 25 years. It is often described at a place you wish you didn't need but you are glad to have.

[India] Mechanisms and clinical applications of palmitoylethanolamide (PEA) in the treatment of neuropathic painInflammopharmacology; Ardra Das, Preetha Balakrishnan; 12/24Palmitoylethanolamide (PEA) is emerging as a promising therapeutic agent for neuropathic and other pain-related conditions. PEA's interaction with endocannabinoid receptors decreases the inflammatory cytokine and chemokine production and thereby a descending pain sensation. Experimental evidence shows that PEA not only reduces pain and inflammation but also lowers the need for higher dosages of other drugs hence minimizing the risk of drug toxicity. The bioavailability of PEA has been enhanced by recent technological developments, which emphasize continuous research efforts to maximize PEA's therapeutic potential in pain treatment and associated medical sectors.

[Iran] The relationship between the quality of oncology nursing care and the resiliency and hope of patients with cancer: a cross-sectional studyInternational Journal of Palliative Nursing; Nadia Sedri, Mohammad Ali Zakeri, Hakimeh Sheykhasadi, Ala Shamsi, Hosna Akbari, Mostafa Hejazi, Asghar Tavan; 12/24Patients with cancer require emotional support in addition to specialised medical treatments for their physical ailments. The quality of nursing care, resilience and hope can influence a person's cancer trajectory, and understanding these factors and their relationship can be influential in improving the process for these patients. Given the interrelationship between 'resilience' and 'hope' for patients with cancer, it is necessary to focus on the factors that impact these qualities. In addition, paying attention to the concept of resilience can improve the level of hope in patients with cancer. Based on the results, it is recommended that interventions to increase QON [quality of oncology nursing] in patients with cancer be planned and implemented. 

[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.