Literature Review

Children’s hospices risk being ‘hugely reduced’ due to funding and cost issues Jersey Evening Post - UK News; by UK News; 6/19/24 Children’s hospice services are at risk of being “hugely reduced” amid a lack of long-term sustainable funding and rising costs, a charity has warned. ... Some 66.7% of children’s hospices said this was due to a hike in energy bills, while 86.1% said it was due to higher costs associated with recruiting and retaining staff. According to the report, some 54% of children’s hospices in the UK ended the 2023/24 financial year in a net deficit. Together for Short Lives extrapolated the figure across all 39 hospice organisations to estimate a total shortfall of £8.5 million.

“I should’ve been able to decide for myself, but I didn’t want to be left alone.” A qualitative interview study of clients’ ethical challenges and norms regarding decision-making in gender-affirming medical careJournal of Homosexuality; by Karl Gerritse, MD, MA, PhD, Casper Martens, MSc, Baudewijntje P.C. Kreukels, PhD, Marijke A. Bremmer, MD, Fijgje de Boer, PhD, Bert C. Molewijk, PhD; 6/24[The Netherlands] This qualitative study aimed to map and provide insight into the ethical challenges and norms of adult transgender and gender diverse (TGD) clients in gender-affirming medical care (GAMC). By doing so, we seek to make an empirical and constructive contribution to the dialogue on and moral inquiry into what good decision-making in GAMC should entail. ... Our findings highlight divergent and dynamic decisional challenges and normative views— both within individual clients and among them. We conclude that there is no single ideal model of good decision-making in GAMC and argue that elucidating and jointly deliberating on decisional norms and challenges should be an inherent part of co-constructing good decision-making.

Better bereavement and palliative care priorities are needed internationally ONS Voice - Oncology Nursing Society; by Elisa Becze, BA, ELS; 6/7/24 Palliative and bereavement care should be a health policy priority, an international team of public health scientists reported in Lancet Public Health. They called for interprofessional health workers, organizations, and systems to “shift bereavement care from an afterthought to a public health priority.” The authors cited evidence that bereaved individuals are at increased risk for numerous adverse outcomes, including prolonged grief disorder, mood and anxiety disorders, existential distress, decreased work productivity, adverse health behaviors, cancer, heart disease, suicide, and death. They added that the burden is particularly high for vulnerable groups, including those living in communities with limited resources. Healthcare professionals’ barriers to providing bereavement care are similar to those for palliative care, they said, including:

African Palliative Care Association: Annual Report 2022-2023African Palliative Care Association; 5/10/24 View and download the APCA Atlas of Palliative Care in Africa. It includes the following 5 "Impact Areas":

In what countries is assisted dying legal or in consideration for being made legal? The Week; by Devika Rao; 5/8/24 A handful of countries have opted to allow assisted dying, while others are discussing its legalization. ... The practice is hotly contested and is still illegal in most of the world. However, a handful of countries have opted to allow the practice and others are discussing its legalization. ... [Click on the title's link for descriptions in different countries.] 

Scotland Regional Hospice Golf Tournament garners $180KThe Laurinburg Exchange; 5/3/24 The Scotland Regional Hospice Golf Tournament returned to Scotch Meadows Country Club for the 38th year on Tuesday and Wednesday raising $180,383. Since its inception in the 1987, $4.7 million has been raised and all proceeds go toward Scotland Regional Hospice. ... About 60 volunteers worked tirelessly to ensure success of the tournament. Volunteer co-coordinator Bill Hill said, “This tournament is 95% volunteer run. ... SRH is a non-profit organization that provides end-of-life care to people in the area. 

UK survey finds 65% of adults are worried about access to palliative care Medical Xpress; by King's College London; 4/30/24 A survey commissioned by King's College London, and carried out by YouGov, has found that 65% of people across the U.K. are worried about access to palliative and end of life care, and 41% think there is too little NHS resource allocated to palliative care. The survey of 2,164 adults across the U.K. was commissioned by the Florence Nightingale Faculty of Nursing, Midwifery & Palliative Care at King's to explore people's knowledge and experiences of palliative and end of life care. ... Findings from the survey conducted in January 2024 show that nearly a quarter of people (24%) across the U.K. say they don't know much about or have not heard of palliative care, with disparities in knowledge between white and ethnic minority groups.

Debates begin in the Assembly on the “end of life” bill; Catherine Vautrin calls for a “spirit of humanity, listening and respect”Times.News - France; The Minister of Labor, Catherine Vautrin, and the president of the special commission, Agnès Firmin Le Bodo, on April 22 at the Assembly; 4/22/24At the opening of the work of the special committee of the National Assembly, ... on the “end of life” bill, the Minister of Health, Catherine Vautrin, called on the deputies to have a parliamentary debate which takes place in “a spirit of humanity, listening and respect.” ... At the heart of the questions is the fact of offering certain patients the means of committing suicide ... This “assisted dying” will be reserved for adult patients, born in France or residing in the country for a long time, and able to clearly express their wishes. ... “I have heard fears to which I hope we can respond point by point, a strong demand for clarity and precision, an expectation of vigilance with regard to the sensitivity of the subject”, assured Ms. Vautrin. ... Hoping for a debate full of “humility, seriousness and respect for all convictions” ... [From MP Carline Fiat,] “We can disagree but we have to be careful with the words we say,” she told the deputies present in this committee.

Global assessment of palliative care need: Serious health-related suffering measurement methodologyJournal of Pain and Symptom Management; by Xiaoxiao J Kwete, Afsan Bhadelia, Héctor Arreola-Ornelas, Oscar Mendez, William E Rosa, Stephen Connor, Julia Downing, Dean Jamison, David Watkins, Renzo Calderon, Jim Cleary, Joe Friedman, Liliana De Lima, Christian Ntizimira, Tania Pastrana, Pedro E Pérez-Cruz, Dingle Spence, M R Rajagopal, Valentina Vargas Enciso, Eric L Krakauer, Lukas Radbruch, Felicia Marie Knaul; 4/16/24Inequities and gaps in palliative care access are a serious impediment to health systems especially low- and middle-income countries and the accurate measurement of need across health conditions is a critical step to understanding and addressing the issue. Serious Health-related Suffering (SHS) is a novel methodology to measure the palliative care need and was originally developed by The Lancet Commission on Global Access to Palliative Care and Pain Relief. ... The discussion encompasses opportunities for applying SHS to future policy making assessment of future research priorities particularly in light of the dearth of data from low- and middle-income countries, and sharing of directions for future work to develop SHS 3.0.

Will Assisted Dying in Europe impact Living With Dignity? Medscape, by Sara Freeman; 4/17/24 BUDAPEST — Only a handful of European countries have legislation in place that decriminalizes the act of physician-assisted dying for certain patients, such as those who are terminally ill. But in recent months, public debates on the topic have been on the rise. ... This was a topic of discussion at the annual meeting of the 32nd European Congress of Psychiatry (EPA 2024) in a session titled "Psychiatry and Physician-Assisted Dying: Europe — Is Diversity Needed?" [Click on the title's link for summaries about the following countries.]

Hospices call on Government to help fund rising staff bill ShropshireStar.com, United Kingdom; 4/14/24 Hospices are facing a huge cash shortfall because of a rising staff bill which is putting services at risk, a charity has warned. Hospice UK said the Government must provide cash urgently after its analysis showed hospices will need £120 million to match upcoming pay rises in the NHS. ... Hospice UK said rising costs, such as energy and food prices, together with squeezed donations as people cope with an increased cost of living, mean hospices are currently budgeting for a total deficit of £186 million this year.Editor's Note: Increasingly, we are seeing more articles for hospice community fundraisers throughout the UK: England, Ireland, Scotland, and Wales. Repeatedly, the tone is dire; requests are urgent.

Hospices face ‘devastating’ financial crisis as staff costs rises, charity warns Shropshire Star, United Kingdom; 4/15/24 Hospices are facing a “devastating” financial crisis because of rising staff costs which are putting services at risk, a charity has warned. The chief executive of Hospice UK, Toby Porter, said the last year had seen the “worst financial results for the hospice sector in around 20 years.”