Literature Review

International consensus on sleep problems in pediatric palliative care: Paving the way[International] Sleep Medicine; by Anna Mercante, Judith Owens, Oliviero Bruni, Magda L. Nunes, Paul Gringras, Shirley Xin Li, Simonetta Papa, Ulrika Kreicbergs, Joanne Wolfe, Boris Zernikow, Ana Lacerda, Franca Benini, on behalf of the Pediatric Sleep and Palliative Care Group; 7/24Sleep problems constitute a common and heterogeneous complaint in pediatric palliative care (PPC), where they often contribute to disease morbidity and cause additional distress to children and adolescents and their families already facing the burden of life-threatening and life-limiting conditions. Despite the significant impact of sleep problems, clinical evidence is lacking... This study addresses the need to personalize sleep medicine’s approach to the palliative care setting and its peculiarities. It provides the first international consensus on sleep problems in PPC and highlight the urgent need for global guidance to improve sleep-related distress in this vulnerable population and their caregivers. Our findings represent a crucial milestone that will hopefully enable the development of guidelines in the near future.Publisher's Note: I am grateful that sleep issues are being studied and discussed more often, as they can be terribly disruptive to patients and family members.

Opposing views shared on assisted dying proposals BBC News, Isle of Man; by Rebecca Brahde; 7/1/24 Protesters both for and against proposed assisted dying laws on the Isle of Man have shared their views, ahead of an extra sitting of the House of Keys. Politicians will continue to debate legislation on Monday that would allow terminally-ill people the right to die. Millie Blenkinsop-French, from Douglas, said: "I think it is time now for us to have that choice." But Karen Owen said "one person's choice impinges on another's" and would lead to families having to have "terrifying" conversations as the end of life approaches. If the legislation is approved, there will be strict eligibility criteria: People who request an assisted death will have to be over 18, have lived on the island for at least five years and have been told by doctors they have less than 12 months to live. ... Public opinion was narrowly divided on the issue in a consultation held in April 2023 where more than 3,000 people shared their views.Editor's Note: The Isle of Man is a self-governing British Crown Dependency in the Irish Sea, between Great Britain and Ireland. We post this international article as a sample of the international scope of this extremely controversial issue, paired with similarities in different beliefs and opinions.

Coping and end-of-life decision-making in ALS: A qualitative interview study PLoS One, University of Auckland, New Zealand; by Olga Wenzel, Anke Erdmann, Gerald Neitzke, and Irene Hirschberg; 6/26/24 How do people with amyotrophic lateral sclerosis (PALS) deal with their diagnosis and engage in end-of-life decision-making? What informational or supportive needs do they have for counselling about life-sustaining treatment and end-of-life care? Which correlating conditions and influences relate to these needs and how do they connect to the wish to die or wish to live? ... We identified the coping strategies ‘avoid thinking about end-of-life’ and its counterpart, ‘planning ahead to be well-prepared,’ and differentiated the latter into the patterns ‘withdrawing from life and taking precautions against life-prolongation’ and ‘searching for a new meaning in life and preparing for life-sustaining treatment’.  ... These strategies may vary over time, resulting in different support needs. Our findings signify that deep insight is needed into PALS‘ coping processes to understand their decision-making about life-sustaining treatment. Healthcare professionals should be sensitive to illness experiences beyond medical aspects and foster coping as a biographical process to better support people with ALS.Editor's Note: Click on the title to access the full text of this insightful, relevant research. Hospice and palliative educators, use this to strengthen your disease-specific resources and training about care for persons with ALS.

The hospice as a sacred placeThe New Statesman; by Ken Worpole; 6/21/24[UK] The hospice building retains a special place in the modern imagination, a new iteration of Larkin’s “serious building on serious earth”. ... The symbolic power of the hospice building was demonstrated in 2014, when 500 people attended a meeting protesting the proposed closure of Pilgrims Hospice in Canterbury. “It’s only bricks and mortar,” advocates of closure argued, suggesting that hospice care could be provided just as meaningfully at home. John Harries, resident-researcher at St Christopher’s, followed the saga closely. The arguments against closure, he saw, came from families of those who had died within hospice walls, and for whom the building had “achieved the status of a sacred place”: for them, “closure was seen as an act of desecration”. For Harries, “Care is an invisible abstraction, but for many it is symbolised and made concrete by the building.”Publisher's Note: A bit of hospice history woven into this interesting piece.

Psychological health in Palliative Care: Thematic analysis of a psychiatrist's and an art therapist's clinical reflexive journals Palliative Medicine; by Wen Phei Lim, Roxanne Jia Yu Chew, Clare O'Callaghan; 6/19/24 online ahead of print Aim: This study aims to describe how patients receiving palliative care experience psychological health, explore the meaning of a palliative care clinician's work and contribute to the understanding of psychological health in palliative care through the reflexive and visual journals of clinicians.

Hospice staff cycle more than 300 miles to work VNExplorer - bbc.com; 6/13/24 Hospice staff have collectively cycled more than 300 miles this week to raise money for their place of work. Seven St Margaret's Hospice employees cycled to work on Tuesday morning to mark Bike Week. ... The group raised £1,000 for the Taunton hospice, which they say could pay for 24 hours of expert specialist care on its inpatient unit, with donations still coming in. ... The idea for the challenge began with senior IT technician, Jack Gorman, whose colleagues had been encouraging him to cycle to work more often. Tom White, head of business intelligence, challenged Mr. Gorman that if he cycled to and from work - a 50-mile commute to work and back - then Mr. White would cycle in from his Barnstaple home, a round trip of 100 miles. ...Editor's Note: Does this spark ideas for your organization, especially for your office-based staff? Take this and adapt it to a fun, practical, revenue-generating, relationship-building activity for your organization. 

Should children be enrolled in end-of-life clinical studies?Medscape Medical News; by Elena Riboldi; 6/11/24MILAN, Italy - Is it appropriate to enroll children and adolescents in end-of-life clinical studies? Experts discussed this challenging topic at the 2024 annual congress of the European Society for Pediatric Oncology, which was held in May. Monika Führer, MD, a professor of pediatric palliative medicine and head of the Pediatric Palliative Center in Munich, Germany, highlighted the following three aspects of the issue that require careful attention: Decisional autonomy, nonmaleficence, and advance care planning.

Spread of assisted dying shines spotlight on difficult decisions Financial Times; by Charlotte Middlehurst; 5/22/24 The right to control your death is a principle that societies have debated for centuries. But, as more countries prepare to legalise medically-assisted dying, the reality of allowing the practice is sparking fresh ethical arguments. Some form of assisted dying is now legal in 9 countries, as well as in 11 US states and parts of Australia. [Click on the title's link for data and discussion regarding international policies; concerns about increased "unassisted suicide"; rapid legislative/medical decisions; inducing death; devaluing the lives of disabled persons; ethical choices based on economic factors; doctors' choices; and more.] 

Hike For Hospice surpasses expectations: Brings in over $167k CKXS, 99.1, Chatham-Kent & Lambton County (Southwest Ontario, Canada); 5/7/24 An annual walk in support of end-of-life care in Chatham-Kent has smashed its fundraising record. More than 500 people took part in the eighth annual Hike for Hospice event on Sunday at John McGregor Secondary School and Mud Creek Trail. The Chatham-Kent Hospice Foundation surpassed its $140,000 fundraising goal, bringing in $167,500 through pledges collected by hikers and sponsors. “It was so touching to see so many people walking together on the trail and all the memorial signs are just a reminder of the impact Hospice has made in our community,” said Event Co-Chair Ginny Hawken in a news release.

Palliative patients can die peacefully at home with paramedic support, claims proposed frameworkRiotack - Australia; by James Day; 5/6/24A proposed national framework suggests paramedics could help ease pressure on emergency departments by supporting palliative care patients who wish to die at home. Published in the leading international peer reviewed journal Palliative Medicine, the framework seeks to embed palliative care into paramedics’ core business and reduce needless transports to hospital. ... Lead author and trained paramedic Dr. Madeleine Juhrmann developed the framework in consultation with paramedics, palliative care doctors, GPs, carers with lived experience and others. The expert group – representing six countries and all the states of Australia – agreed on the framework’s 32 service changes to standardise best practice for paramedics delivering palliative care in community-based settings.Pair this with a USA article in today's newsletter, "Stranded in the ER, seniors await hospital care and suffer avoidable harm." 

Pro-life hospice group launches ‘Do Not Euthanize’ Registry to protect Canadians patients InfoWars / LifeSiteNews; by Anthony Murdoch; 5/6/24 One of  Canada’s only fully pro-life hospices, the Delta Hospice Society (DHS), has launched a new Do Not Euthanize (DNE) National Registry that it says will help “defend” vulnerable citizens’ lives from “premature death by euthanasia.” Angelina Ireland, executive director of the DHS, told LifeSiteNews that the new DNE National Registry is live as of May 1, 2024, with the goal being to have everyone who has already signed, or will sign, a DNE, added to the registry.

Living well to the end: Singapore ramps up palliative and hospice care capacityThe Straits Times; by Joy Teo; 4/26/24 Singapore is increasing its palliative care and hospice capacity to allow more people with life-threatening illnesses to live well till the very end, and die with dignity and comfort. By 2025, there will be 300 inpatient palliative care beds, 140 day hospice places and capacity for palliative home care for 3,600 patients. In Singapore, the term palliative care is often used interchangeably with hospice care, though there are subtle differences.