Literature Review

Creating death box eases stress, brings 'peace of mind' to those left behind BradfordToday.ca, Canada; by Andrew Philips; 10/26/24 Creating a death box might sound like sort of a morbid thing to do, but it’s vitally important. That’s according to Tammy Vaters, supportive care coordinator at Hospice Huronia-Tomkins House, ... who leads upcoming workshops on creating a death box or a “legacy box or final wishes box” for those uncomfortable with the more succinct terminology ["death box"]. ... Besides end-of-life wishes, Vaters says the box can include photos that someone would like displayed at a celebration of life or similar offering along with personalized letters to family and friends and personal mementos that have special meaning. “It gives you more opportunities of expressing how you feel about somebody,” she says, noting the boxes should also contain usernames and passwords that may aid one's loved ones after death. “They can be more thoughtful and personal.” Vaters, who is a specialist in thanatology (the study of death, dying and bereavement), says people will often use another term for death. 

Poetry, again, confronts death JAMA; by Rafael CAmpo, MD, MA; 10/16/24Poetry can help physicians in many ways at the border between life and death. Though we might think first of the consoling power of elegy in confronting mortality, other poems, like “Again,” [referenced] aid us in wrestling with what death is in the first place—and are even more useful when research falls short in attempting to demystify it. One such scientific controversy surrounds in-hospital resuscitation, especially for older adults, with studies showing inconsistent rates of meaningful survival after these potentially life-saving interventions, confounded by the physical and emotional trauma that accompanies them, poor understanding of patients’ and families’ wishes, unclear definitions of “meaningful,” and varying patient selection criteria. [The poem titled] “Again” distills some sense out of this complexity as only poetry can, with the urgent repetition of “again” expressing the ingrained imperative to act when patients experience cardiac arrest while echoing both the many previous resuscitations hospital staff well remember, along with the 2-beat, up-down muscle memory of performing chest compressions. ... Thus, a reflexive, futile endeavor becomes a human being’s dying moment, allowing us to feel closure. Debates around in-hospital resuscitation suddenly quieted, we recognize life’s inevitable finality, underscored by the poem’s ironically dignified resignation in its concluding line: “Never again did you wake.”Editor's note: Click here to access the poem, "Again."

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.

How music therapy helps this young cancer patient in Louisville hold on to 'pure joy' ABC WHAS-11, Louisville, KY; by Brooke Hasch; 9/17/24Music therapists come prepared for any mood, hoping to bring light to a dark situation. Within the Norton Healthcare system, they help patients cope with pain, discomfort, and anxiety often associated with hospitalization. Brett Northrup's the music therapist for Norton Children's Cancer Institute, a role he stepped into 13 years ago. "I didn't know it existed, and then when I discovered this field, I said, 'this is it. This is what I'm going to do the rest of my life,'" he said. Northrup doesn't miss a beat when a patient's in need of a smile or a moment of normalcy. He's been there many times for 4-year-old Trey Lowman, who's gone through more than most people will in a lifetime. ... "When you put [Trey] and Brett together, it's magic," [Trey's mom] said. "He's full of joy and that's one thing that cancer hasn't been able to take from him."

Indiana music therapy specialists talk about the practice BallStateDailyNews.com; by Hannah Amos; originally posted 9/3/24, distributed 9/12/24 The strum of a guitar, the hum of a voice and the steady beat of a drum makes more than just music. It provides a way for people to work through their emotions.  Kirby Gilliam, owner and founder of Plainsong Music Services in Anderson, Indiana, said she noticed music creates a safe space.  ... [She] uses different techniques: expressive, receptive, recreated and the ISO principle. Expressive music therapy is when the patient makes music. The receptive technique is when the therapist makes music and the patient listens. Recreated is when patients sing songs made by other artists. Finally, the ISO principle is when the music matches the patient’s mood, and through music, they shift the mood in a positive direction, Gilliam said.  “Music therapy is an evidence-based field, based and rooted in science and research,” Gilliam said. “If it didn't have the evidence base, it would be more like hippie-dippy and anecdotal … The why is [that] music opens up your entire brain — all of the pathways.” ... Another worker at Plainsong is Hospice Coordinator Kinsey Lavy, who primarily works with geriatrics and individuals with intellectual and developmental disabilities.  Editor's note: For a book specific to music therapy and music for hospice and grief care, with practical uses by mental health practitioners, I invite you to examine my book, Music of the Soul - Composing Life Out of Loss, published in Routledge's Series in Death, Dying and Bereavement, edited by Robert A. Neimeyer.

Caregivers of end-of-life patients reveal the last words they hear most often and the most common regrets from patients WhatsNew2Day; by Alexander; 7/27/24... While each person’s final moments are different, chaplains and palliative care nurses have said most people approach their death with “radical acceptance.” People who are actively dying also often have a new sense of clarity about the universe and may even have a temporary burst of energy or sudden moments of clarity if they have dementia. The last words patients usually say to their families are to tell them they love them... [Often, people] who are in the midst of dying want to be surrounded by their loved ones and pets. Their final words are often words of love and pleas for forgiveness, as well as expressions of regret, ... [Another described that people show] "a desire for connection" with loved ones and faith. Editor's Note: This article provides a balanced scope of descriptions from several professionals, notably Catherine Duncan, Annemarie Switchulis, Neal Shah, and Zackary Price. In this day of social media, some hospice professionals (past or present) tout definitive, authoritative descriptions of what all dying persons experience, with too many assumptions and generalizations. Beware what you read and distribute, especially if the tone and language (of other articles) are sensationalized in a way to garner social media "expertise," followers and Shares--at the expense of more balanced, sensitive, diverse, personalized experiences.

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.

Psychological trauma can worsen symptom burden at end-of-life Hospice News; by Holly Vossel; 5/15/24 Recent research has found that traumatic experiences can lead to increased pain and symptom burden at the end of life, along with a greater likelihood of emotional suffering and isolation. Collective trauma experiences have been associated with higher instances of pain and dyspnea among more than half of seniors nationwide, a recent study found, published in the Journal of Pain and Symptom Management. Traumatized seniors are also more likely to experience loneliness, dissatisfaction with their life and depression. ... Hospices need a greater understanding of both the depth of these patients’ suffering and the scope of their unique needs to improve trauma-informed care delivery, [Dr. Ashwin] Kotwal said, assistant professor of medicine at the University of California San Francisco’s (UCSF) Division of Geriatrics.

Volunteering in hospice helps Macalester students contemplate death's mysteries up close MSN - Minneapolis Star Tribune; by Katy Read; 5/10/24 "You think it will never happen to you, that it cannot happen to you, that you are the only person in the world to whom none of these things will ever happen," author Paul Auster wrote about humans' difficulty confronting our own mortality. ... Auster himself died last month at age 77. ... How can humans fully grasp the inevitability of our own death? It's a tough question to answer, maybe close to impossible. Three Macalester College students who just finished a course called the Anthropology of Death and Dying don't have the answer. Their professor, who has spent much of his career studying death as an anthropologist and a former hospice nurse, doesn't have an answer. A hospice nurse doesn't have the answer. And a hospice patient with lung cancer doesn't have the answer, even knowing he soon will confront its reality firsthand.

The power of art in palliative care InSight+, Melbourne, Australia; by Caitlin Wright; 5/6/24 ... Melbourne artist Jeffrey Kelson is known for his thought-provoking portraits, several of which have been exhibited at the Melbourne Holocaust Museum. He believes a portrait is a window into a subject’s heart and mind. However, after being diagnosed with late-stage pancreatic cancer, it wasn’t this style of art that Mr. Kelson was drawn to. As soon as he felt well enough to return to his studio, he started work on a series of colourful collages. “At one point, my wife came into the room and commented on how bright they were and how full of life force. She was surprised that I could create pieces that were so energetic when I felt so ill. I hadn’t really thought about it. I just needed to work,” he told InSight+. ... Palliative care specialist Dr Eric Fairbank was one of Mr Kelson’s art students for several years before Mr. Kelson’s diagnosis. He said Mr Kelson’s approach to his diagnosis has confirmed his belief that the best outcomes of cancer treatment are achieved when they’re complemented by the patient’s own resources of mind, will and spirit. [Click on the title's link to view several of his paintings.]

Art made by hospice patients displayed at Poole Lighthouse Yahoo! News, by Erin Rhodes, United Kingdom; 4/15/24 More than 200 pieces of art made by patients at a Dorset hospice charity have been displayed at the Lighthouse in Poole [United Kingdom]. The artworks have been made by patients with life-limiting illnesses at Lewis-Manning Hospice Care’s hubs across Poole and east Dorset. Creative Art is one of the services the charity provides to support patients’ wellbeing and mental health.