Literature Review

[Spain] Age-and gender-based social inequalities in palliative care for cancer patients: a systematic literature reviewFrontiers in Public Health; Marina Rodríguez-Gómez, Guadalupe Pastor-Moreno, Isabel Ruiz-Pérez, Vicenta Escribà-Agüir, Vivian Benítez-Hidalgo; 9/24Cancer is a major public health problem worldwide, given its magnitude and growing burden, in addition to the repercussions on health and quality of life. Palliative care can play an important role improving quality of life and it is cost-effective, but some population groups may not benefit from it or benefit less based on age and gender inequalities. This review reveals difficulties for older persons and men for access to key elements of palliative care and highlights the need to tackle access barriers for the most vulnerable population groups. Innovative collaborative services based around patient, family and wider community are needed to ensure optimal care.

[Netherlands] The spiritual dimension of parents' experiences caring for a seriously ill child: An interview studyJournal of Pain and Symptom Management; by Marije A Brouwer, Marijanne Engel, Saskia C C M Teunissen, Carlo Leget, Marijke C Kars; 10/24The spiritual dimension plays a central role in the experiences of parents who care for children with life-threatening conditions, but they receive little support in this dimension, and care needs often go unnoticed. If we want to provide high-quality pediatric palliative care including adequate spiritual support for parents, we should focus on the wide range of their spiritual experiences, and provide support that focuses both on loss of meaning as well as on where parents find growth, joy or meaning.

Online plain language tool and health information quality-A randomized clinical trialJAMA Network Open; Julie Ayre, PhD; Carissa Bonner, PhD; Danielle M. Muscat, PhD; Erin Cvejic, PhD; Olivia Mac, MPH; Dana Mouwad, MHSc (Nsg); Heather L. Shepherd, PhD; Parisa Aslani, PhD; Adam G. Dunn, PhD; Kirsten J. McCaffery, PhD; 10/24National and international policies recognize that health literacy—a person’s capacity to access, understand, and act on health information—is a critical source of inequity in our health systems. Low health literacy contributes to higher mortality, morbidity, rates of hospitalization, emergency department visits, and medication errors independently of other social determinants of health, such as age, education, and socioeconomic disadvantage. In this randomized clinical trial, the Health Literacy Editor helped users simplify health information and apply health literacy guidelines to written text. The findings suggest the tool has high potential to improve development of health information for people who have low health literacy.

Where is assisted dying legal? How the rules worldwide compare The Times, London, UK; by Bruno Waterfield, Josie Ensor, and Bernard Lagan; 10/16/24In 1937, Switzerland legalised assisted suicide provided those doing the assisting were not motivated by “any selfish intent”. Six decades later, the US state of Oregon legalised physician-assisted suicide for people with less than six months to live. In 2001, the Netherlands became the first country in the world to decriminalise assisted dying. In the two decades since, the debate around a state or nation’s approach to life and death has sped up. Belgium, Australia and ten more US states have decriminalised forms of assisted dying. The approach varies, but they all fall under the umbrella of assisted dying, a term that usually refers either to euthanasia — the practice of a doctor administering a lethal drug — or to assisted suicide, in which a person self-administers a lethal drug, often after someone has helped them to procure it. [Click on the title's link for its list of comparisons.]

[Scotland] Palliative care-based arguments against assisted dyingBioethics; Ben Colburn; 10/24Opponents of legalised assisted dying often assert that palliative care is worse in countries where assisted dying has been legalised, and imply that legalised assisted dying makes palliative care worse. This study considers five versions of this claim: that it is difficulty to access expert palliative care in countries where assisted dying has been legalised, that those countries rank low in their quality of end-of-life care; that legalising assisted dying doesn't expand patient choice in respect of palliative care; that growth in palliative care services has stalled in countries where assisted dying has been legalised; and that legalised assisted dying impedes the growth of palliative care or causes it to decline. In each case, it concludes that neither argumentation nor evidence supports these claims.

Gallery brings creativity to hospice care BBC News, United Kingdom; Joshua Askew; 10/6/24 A Kent gallery has partnered with a local hospice to bring creative activities and the enjoyment of art to hospice patients. The Turner Contemporary, in Margate, is holding the "Look Club" where those living with life-limiting illnesses can explore ideas and questions around exhibitions with its team. Brian Hodgson, 77, from Broadstairs, who was referred to the hospice by his neurologist, described it as "a special and emotional experience to be there with an artist, listening to them talk about their work". Pilgrims Hospices also hosts "Living Well" sessions, offering patients and their families social, creative, and educational activities. By working together, Turner Contemporary said the pair were showing the "transformative power of art in healthcare settings." It said giving patients opportunities for creative expression, social interaction and personal growth could help break the stigma around hospices being solely places for end-of-life care.

[Australia] Gender representation of health care professionals in large language model–generated storiesJAMA Network Open; Bradley D. Menz, B. Pharm (Hons); Nicole M. Kuderer, MD; Benjamin Chin-Yee, MD; Jessica M. Logan, PhD; Andrew Rowland, PhD; Michael J. Sorich, PhD; Ashley M. Hopkins, PhD; 9/24This cross-sectional study found significant variability in gender representation in LLM [large language model]-generated stories about medical doctors, surgeons, and nurses, with almost all stories about nurses represented as she/her. This ... study highlights the need for LLM developers to update their tools for equitable and diverse gender representation in essential health care roles, including medical doctors, surgeons, and nurses. As LLMs become increasingly adopted throughout health care and education, continuous monitoring of these tools is needed to ensure that they reflect a diverse workforce, capable of serving society’s needs effectively.

[Germany] Impacts of clinical decision support systems on the relationship, communication, and shared decision-making between health care professionals and patients: Multistakeholder interview studyJournal of Medical Internet Research; Florian Funer, Diana Schneider, Nils B Heyen, Heike Aichinger, Andrea Diana Klausen, Sara Tinnemeyer, Wenke Liedtke, Sabine Salloch, Tanja Bratan; 8/24Clinical decision support systems (CDSSs) are increasingly being introduced into various domains of health care. The results indicate that using CDSSs could restructure established power and decision-making relationships between (future) health care professionals and patients. In addition, respondents expected that the use of CDSSs would involve more communication, so they anticipated an increased time commitment. The results shed new light on the existing discourse by demonstrating that the anticipated impact of CDSSs on the health care professional-patient relationship appears to stem less from the function of a CDSS and more from its integration in the relationship.

Celebrate patients’ creativity ehospice; by Fair Havens Hospice, United Kingdom; 9/23/24 Fair Havens hospice recently held an inspiring art exhibition to showcase patients’ artwork produced during a range of wellbeing sessions. The exhibition at Fair Havens hospice in Prittlewell, Southend-on-Sea, showcased over 30 pieces of artwork, including acrylics and watercolours to embroidery and creative writing, all created by patients living with incurable illnesses. There was also the opportunity for people to get creative and take part in activities such as pebble painting and memory box decorating. The artwork on show had all been created by adults supported by the hospices’ Wellbeing Team through various creative therapy workshops and one-to-one sessions. ... Amongst some of the artwork were collages created in the ‘I AM’ workshop, which aimed to provide a space for patients to reflect on the things that are most important to them and express this using colour, textures, and words.

[Africa] Cancer care terminology in African languagesJAMA Network Open; Hannah Simba, PhD; Miriam Mutebi, MD; Moses Galukande, MD; Yahya Mahamat-Saleh, PhD; Elom Aglago, PhD; Adamu Addissie, PhD; Lidya Genene Abebe, MS; Justina Onwuka, PhD; Grace Akinyi Odongo, PhD; Felix M. Onyije, PhD; Bernadette Chimera, MS; Melitah Motlhale, PhD; Neimar de Paula Silva, PhD; Desiree Malope, MS; Clement T. Narh, PhD; Elizabeth F. Msoka, MS; Joachim Schüz, PhD; Efua Prah, PhD; Valerie McCormack, PhD; 8/24This survey study of 107 health care workers and cancer researchers revealed diverse cancer terminology in 44 African languages across 32 countries in Africa. Translations of key terms including cancer, malignant, chronic, and radiotherapy commonly conveyed elements of fear and tragedy. In this survey study of cancer communication and the translation of oncology terminology in African languages, the findings suggest that the terminology may contribute to fear, health disparities, and barriers to care and pose communication difficulties for health professionals. The results reinforce the need for culturally sensitive cancer terminology for improving cancer awareness and communication.

Former M&S chairman: ‘Planning for my wife’s death with her made it easier to cope’ The Telegraph; by Leah Hardy; 9/17/24 When Patricia Swannell was diagnosed with incurable breast cancer, she planned both how she wanted to die and her legacy beyond the grave. On the first anniversary of her death, Patricia’s husband Robert speaks about her “beautiful” death, how she achieved it, and how it has helped the family in their grief. [Robert Swanell tells their story with the following key themes.]

[England] Hospice 'held family together' after baby sons die a year apartBBC; 9/11/24A husband and wife, who lost two babies within a year of each other, have spoken of their gratitude to the hospice which "held the family together". Claire and Rob Gaskarth, from Clevedon, Somerset, lost seven-month-old Freddie in July 2012 and then Louis, who was born safely in May 2013, but who died 12 days later of the same inherited genetic disorder. "The hospice helped us get through one of the most painful times of our lives, and, for that, we will be forever grateful," said Mr. Gaskarth.

Accuracy of the “surprise question” in predicting long-term mortality among older patients admitted to the Emergency Department: Comparison between emergency physicians and nurses in a multicenter longitudinal studyPalliative Medicine Reports; by Alexandra Coulon, Delphine Bourmorck, Françoise Steenebruggen, Laurent Knoops, Isabelle De Brauwer, on behalf of the COPE Project; 8/24The “surprise question” (SQ) (“Would you be surprised if this patient died in the next 12 months?”) is the most frequently used screening tool in emergency departments (EDs) to identify patients with poor prognosis and potential unmet palliative needs... The SQ is a simple tool to identify older ED patients at high mortality risk. Concordant responses from [emergency physicians and nurses] are more predictive than either alone.