Literature Review

[Canada] Death doulas’ experiences with and perspectives on unusual end-of-life phenomenaOmega-Journal of Death and Dying; Stephen Claxton-Oldfield, Madeleine de Ste-Croix Killoran; 2/25In this article, the term ‘unusual end-of-life phenomena’ (EOLP) is used to refer to extraordinary experiences that can happen when someone is approaching death, at the time of death, and after death. Consistent with the results of previous studies involving people who work with the dying (i.e., doctors, nurses, hospice palliative care volunteers, nursing home staff) death doulas had commonly observed or been told about various EOLP in their work supporting people through the dying process. Deathbed visions were the most witnessed and reported EOLP. Death doulas indicated that they were comfortable talking about EOLP with their clients and clients’ families and most or almost all endorsed spiritual or transpersonal explanations for EOLP over scientific or medical ones. Death doulas have an important role to play in normalizing, validating, and educating their clients and clients’ families about EOLP.

[UK] Man to sell his 4,000 books in aid of hospice BBC News; by Emily Coady-Stemp and Jo Burn; 3/26/25 A man has opened a shop to sell his collection of 4,000 books to raise money for the hospice where he is receiving care. Rob McCann, from the Kent village of Sutton Valence, was diagnosed with pancreatic cancer in July 2023 and given just weeks to live. "Yet here I am, 18 months later, still going strong," he added. He opened Capelli's Books in his village on Tuesday to raise money for the Heart of Kent Hospice. [Continue reading ...]

[UK] Why we need to consider frailty in the assisted dying debateAge and Aging; Sarah A Hopkins, Annabel Price, Simon N Etkind; 2/25Assisted dying/assisted suicide (AD/AS) is legal or decriminalised in several countries and Bills to legalise it are currently being considered by the UK and Scottish Parliaments. Older adults living with frailty make up an increasing proportion of those who die, yet the possible implications of AD/AS for these individuals are relatively unexplored. Frailty complicates AD/AS in relation to eligibility because of ambiguity over whether frailty constitutes a terminal illness, challenges in accurately predicting prognosis, and difficulty determining reversibility of suffering. Frailty also blurs the distinction between terminal illness and disability, in contrast to the clear-cut language of current proposed legislation where those with a terminal illness are eligible, but those with disability are not. Further consideration is needed regarding eligibility, safeguards in the context of relational autonomy and for those who already feel a burden, and how to mitigate risks of further entrenching ableist and ageist attitudes.

[Australia] Advance care planning has brought 'comfort and peace' to Annaliese Holland ABC News; by Eva Blandis and Daniel Keane; 3/19/25Young South Australian woman Annaliese Holland, who is preparing for major high-risk surgery, has spoken about the importance of advance care planning. The 25-year-old was diagnosed with a rare autoimmune disease and terminal illness several years ago. Ms. Holland wants young people to have more open conversations about death and end-of-life care. ... "I say my life is like walking on a field of landmines, not knowing when it will go off,"  she said. While it is a harrowing statement, she is harnessing her situation to help others — Ms. Holland is a strong supporter of advance care planning.

[UK] RCGP shifts to position of neither supporting nor opposing assisted dying RCGP - Royal College of General Pracitioners, London, UK; Press Release; 3/14/25 The Royal College of General Practitioners' Council has voted to move to a position of neither supporting nor opposing assisted dying being legal. The RCGP UK governing Council - elected representatives of the wider College membership – today voted to determine what the College’s stance should be on whether or not assisted dying should be legal:

[UK] Exploring the challenges experienced by patients and families using palliative and end-of-life care services: A qualitative focus group studyPalliative and Supportive Care; Gina Kallis, Gary Hodge, Hannah Wheat, Tomasina M Oh, Susie Pearce; 3/25In the UK, access to dignified and compassionate palliative care is increasingly being reported as inadequate. A range of challenges were identified at different stages of the patient and family carer journey near the end-of-life. These included issues related to the delivery of care, such as communication challenges, a lack of out of hours care, and also a lack of personalized care. Patients and families also experienced everyday challenges due to the impact of living with a life-shortening condition and altered family dynamics as family members became carers. There were also some traumatic experiences of death and a sense of abandonment when care could not be accessed. 

[Ukraine] 'Support to the end’: Religious sister brings palliative care to unborn babies in Ukraine The Catholic World; by Hannah Brockhaus; 3/10/25 Since 2020, a pandemic and then an active war have caused untold tragedy for Ukrainians, but these circumstances have also allowed the country to confront death and grief in a way it never did before, according to a religious sister who offers palliative care to unborn children and their families. In Ukraine, “one couldn’t and wouldn’t talk about death before the COVID pandemic,” Sister Giustina Olha Holubets, SSMI, told CNA earlier this month. The more open a society is about death and loss and grief, she said, the easier it is to know how to respond to a family going through the pain of losing a child in the womb or shortly after birth. A Byzantine Catholic and member of the Sister Servants of Mary Immaculate, Holubets has degrees in bioethics, psychology, biology, and genetics. In 2017, she founded the nonprofit organization “Perinatal Hospice – Imprint of Life” in Lyiv, Ukraine, which she currently leads. ...

[UK] Coming to terms with dying: Advance care planning as a conduit between clinicians, patients, and conversations about death and dying - A qualitative interview studyPalliative Medicine; Rowena Jane Eason, Lisa Jane Brighton, Jonathan Koffman, Katherine Bristowe; 2/25Advance care planning elicits multiple complex thoughts, emotions, and behaviours, with responses ranging from the procedural to the profound. Discussions empowered and instilled confidence, promoted openness with relatives, encouraged people to make the most of their time remaining, and sometimes contributed to coming to terms with their mortality. Factors influencing experiences of discussions reflected the complexity and diversity in participants' lives, personalities, and life experiences, with discussions exposing the realities of living with terminal illness. 

[UK] Supporting the bereaved child in the adult ICU: A narrative reviewIntensive Care Medicine; Annelies Rowland, Carole Boulanger, Louise Dalton; 2/25Childhood bereavement is a significant issue globally, affecting millions of children each year, with incidence rates significantly increasing following the COVID-19 pandemic. The loss of an important adult, particularly in the ICU environment, can lead to lasting psychological and behavioural challenges for children. Both families and healthcare professionals (HCPs) often feel unprepared and uncomfortable engaging in honest, supportive conversations with children about bereavement, further complicating children's grief processing. This narrative review examines the pivotal role ICU HCPs can play in facilitating child-centred bereavement support, focusing on promoting honest communication, supportive visitation practices, creating a child-friendly and humanised ICU environment, and encouraging child involvement during end-of-life care. The review also advocates for specialised training to equip ICU staff with the necessary skills to support grieving children and families.

[England] Hospices receive multi-million pound boost to improve facilities Department of Health and Social Care, United Kingdom; by HM Treasury an Stephen Kinnock MP; 2/26/25Hospices will begin receiving £25 million for facility upgrades and refurbishments from today as part of the biggest investment into hospices in a generation. The cash will be distributed immediately for the 2024/25 financial year, with a further £75 million to follow from April. More than 170 hospices across the country will receive funding, including those run by Marie Curie and Sue Ryder, as well as independent hospices like Zoe’s Place in Liverpool. ... Minister for Care Stephen Kinnock said:  "This is the largest investment in a generation to help transform hospice facilities across England. ..."

[Korea] 9 in 10 Koreans support ending life-prolonging treatment: study The Korea Times; by Kim Hyun-bin; 2/24/25 More than nine out of ten Koreans think that they would opt to forgo life-prolonging treatment if they were terminally ill, a new study has found, highlighting shifting attitudes toward end-of-life care in the country. According to a report released by the Korea Institute for Health and Social Affairs on Sunday, 91.9 percent of respondents expressed they would choose to discontinue life-sustaining treatment if they were diagnosed with a terminal illness or were nearing the end of life, based on a survey conducted last April and May on 1,021 men and women. 8.1 percent stated they would prefer to continue such treatment.

[UK - St. Christopher's Hospice] Woman with rare brain disease dances with husband for first time in yearsReposted in Daily Journal from Talker News, Tupelo, MS; by Isobel Williams; 2/20/25 This is the touching moment an elderly woman living with a rare brain disease slow danced with her husband - for the first time in years. Constance Bartholomew, 69, has progressive supranuclear palsy (PSP), a neurological condition which has left her struggling to walk. The disorder - which is estimated to affect around 4,000 people in the UK - can cause problems with balance, movement, vision, speech and swallowing. Constance began physiotherapy at St. Christopher's Hospice in Sydenham, south-east London in September last year - at which point husband Dennis, 72, joked he would pay a million pounds to dance with her again. Upon hearing the remark, rehab assistant Ralitsa Angelova ... made it her mission to make it happen.  ... “She is unable to walk, to articulate, her eyesight has failed. It’s a terrible condition. I wouldn’t wish it on anyone. But she is fully aware. There is absolutely nothing wrong with her memory or comprehension. ..." The video has been released as hospices in London come together to change perceptions of hospice care and highlight the vital importance of gifts in wills to their holistic palliative care services for adults and children in their communities. The hospices are taking part in the This is Hospice Care campaign, a national collaboration of 143 hospices across England, Scotland and Wales, brought together by Hospice UK.Editor's note: St. Christopher's Hospice--founded by Dame Cicely Saunders--is the home for modern day hospice care.  Click here for a YouTube video of Constance and Dennis. Click here for the article we posted on 2/21 about the UK's "This Is Hospice Care" initiative.

[UK] Efficacy of music-based intervention for people living with dementia in an inpatient setting: A pilot studyJournal of Alzheimer's Disease; Neha Abeywickrama, Mel N Ellul Miraval, Hari Subramaniam, Qadeer Arshad, Stephanie Pollard, Geeta Chauhan, Shifa Jussab, Elizabeta B Mukaetova-Ladinska; 1/25Pharmacological treatment of behavioral and psychological symptoms of dementia is of limited benefit. The addition of non-pharmacological interventions is often essential for optimal symptom control. Clinical professionals can successfully deliver music-based intervention to inpatients with advanced dementia to help manage their behavioral symptoms in the short term. Music-based interventions' use for inpatient wards must be further investigated as an economical and personalized non-pharmacological therapeutic tool for patients with dementia.