Literature Review

Gen Z prefers burial over cremation, reversing decades of preferences trending toward cremationPR Newswire; by National Funeral Directors Association; 7/9/24 There is no shortage of social commentary on how Gen Z is redefining norms and challenging older generations to think differently, from fashion to workplace culture. But what about their perspective on death and dying? A first-of-its-kind survey conducted by the National Funeral Directors Association (NFDA) offers definitive data to show how Gen Z thinks differently about end-of-life matters for themselves and their loved ones – as well as similarities with older generations. Notable differences between the generations highlight Gen Z's unique perspective, even compared to Millennials who are the closest in age, highlighting a pivot in end-of-life preferences to come:

A professional’s perspective: Ageism within the healthcare system; does it exist? Northern Kentucky Tribune; by Jeff Rubin; 7/6/24 A friend of mine named Dee recently shared with me a particularly unpleasant experience she had with a young hospital discharge planner regarding her 97-year-old mom in California. It appears Dee had a heck of a time trying to get her mom discharged to home health care rather than hospice, even though the particular care she needed could have been better delivered at home. A geriatrician by training, Dee ... recognized the invaluable role of hospice in providing end-of-life care. However, the situation she found herself in was less a question of end-of-life and more of palliative care. ...  A recent study in the US sampling 2,035 individuals between 50 and 80 years of age revealed that 93.4% experienced ageism firsthand. Their perception extended to professionals like doctors, nurses, therapists, social workers, and psychologists whose services included working with older people. [Click on the title's link for significant data, descriptions, and resources.]

Being present is one way to help dying friendAsk the Doctors; by Elizabeth Ko, MD and Eve Glazier, MD; 7/5/24Dear Doctors: My friend was diagnosed with multiple myeloma 10 years ago. His chemo is no longer working, and his doctors say there’s nothing else to be done. He has accepted whatever is coming. He has lost weight, and sometimes the pain is bad. How can I help him?Dear Reader: No matter how long someone has been dealing with a serious illness, the cessation of active treatment can be devastating. This is true not only for the person approaching the end of their life, but also for family and friends. The response to this transition often includes a rotating mix of grief, sorrow, fear, anxiety, dread and anger. However, people also often feel acceptance, peace, hope and even relief. Again, these are experienced not only by the individual who is ill, but also by the people around them. When spending time with someone with a terminal illness, you are looking for balance. That is, you want to be supportive and helpful, but not overwhelm them with your attentions. Hospice care professionals say this can be achieved by asking the person what they need. ... Always check with the person before starting a new task or a project. This keeps them in control of the events around them, which bolsters mental and emotional well-being. [Italics and bold are from this newsletter's editor.]Editor's Note: Calling all hospice and palliative leaders, in the midst of carrying out our professional roles most of us experience the dying and deaths of family, friends, and acquaintances. This article gives meaningful, practical ways to both be present and do simple things that can empower and support the person who is dying. We invite you to pair this article with our newsletter's "Today's Encouragement: We are human beings ..."

Clinician- and patient-directed communication strategies for patients with cancer at high mortality risk JAMA Network Open - Oncology; by Samuel U. Takvorian, MD, MSHP; Peter Gabriel, MD, MSE; E. Paul Wileyto, PhD; Daniel Blumenthal, BA; Sharon Tejada, MS; Alicia B. W. Clifton, MDP; David A. Asch, MD, MBA; Alison M. Buttenheim, PhD, MBA; Katharine A. Rendle, PhD, MSW, MPH; Rachel C. Shelton, ScD, MPH; Krisda H. Chaiyachati, MD, MPH, MSHP; Oluwadamilola M. Fayanju, MD, MA, MPHS; Susan Ware, BS; Lynn M. Schuchter, MD; Pallavi Kumar, MD, MPH; Tasnim Salam, MBE, MPH; Adina Lieberman, MPH; Daniel Ragusano, MPH; Anna-Marika Bauer, MRA; Callie A. Scott, MSc; Lawrence N. Shulman, MD; Robert Schnoll, PhD; Rinad S. Beidas, PhD; Justin E. Bekelman, MD; Ravi B. Parikh, MD, MPP; 7/1/24 Serious illness conversations (SICs) that elicit patients’ values, goals, and care preferences reduce anxiety and depression and improve quality of life, but occur infrequently for patients with cancer. Behavioral economic implementation strategies (nudges) directed at clinicians and/or patients may increase SIC completion. ... In this cluster randomized trial, nudges combining clinician peer comparisons with patient priming questionnaires were associated with a marginal increase in documented SICs compared with an active control. Combining clinician- and patient-directed nudges may help to promote SICs in routine cancer care.

Palliative care nurses see us in our final hours — these are the life lessons they've learnt ABC News; by Iskhandar Razak; 6/29/24 Anne Myers was once confused and shaken by death. After more than a decade as a nurse, including in hospital ICUs, her mother died. "I'd seen a lot of deaths in my nursing life, but it was the closest human to me that had died," she said. "It kind of sent me down a 'oh my god, I don't know what's happening to me', this grief I'm experiencing." Soon afterwards, she became a palliative care nurse. "I ended up just going down the path of 'what is death, what is death and dying all about?'" she recalled. More than 15 years later, here's what she and other palliative care nurses have discovered on how to die well and live well.

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.

Experiencing and enduring patient distress: the distress of palliative care patients and its emotional impact on physicians in trainingBMC Medical Education; by Andréa Tarot, Maxence Pithon, Ashley Ridley, Virginie Guastella, Virginie Guastella, Morgane Plancon, Régis Aubry, Helène Vaillant Roussel, and Axelle Maneval; 6/26/24The extreme vulnerability experienced by patients in palliative care may result in significant distress. These patients require appropriate care while not pathologizing their natural distress. ... [The] aim of this study was to explore how professionals in training feel when confronted with the distress of patients undergoing palliative care. ... The interviews revealed the following five themes:

Palliative care physician: ‘Healing is possible’ even when cure is not Healio, Chicago, IL; by Jennifer Byrne; 6/26/24During her fellowship as a palliative care physician, Sunita Puri, MD, met a patient who taught her that healing is possible even when cure is not. Alice, a 35-year-old woman, had acute myeloid leukemia. ... Nobody wanted to say it out loud, but Alice was dying. “She was only a couple years older than me. She’d lived in San Francisco, a few streets away from where I lived in my residency,” Puri, program director of the hospice and palliative medicine fellowship program at UMass Chan School of Medicine. ... “She had a vibrancy that I had always hoped to embody, but she was intubated, wide awake, on dialysis and starting to suffer from ascending paralysis.” ... During rounds one day, Puri told her attending that she was at a loss about how to help Alice and didn’t feel she was doing anything meaningful for her. “My attending said, ‘What if just being at her bedside is achieving something meaningful?’” Puri recalled. “I’d always understood healing and cure to be different, but this was when I really felt it.” ... “What if healing is choosing to understand that there’s going to be suffering that we can’t alleviate — and sometimes that’s our own — but the most important thing to bring to that is presence?” she said. [Click on the article's title to continue reading.] Editor's Note: Though not directly related to this article, read "Today's Encouragement" at the end of today's newsletter.

Column: Hospice offers redirection of care The Andalusia Star News; by Vickie Wacaster; 6/22/24 Watching someone you love grow weaker and weaker with each passing day is challenging. Yet, sadly, many of us experience this. In my own life, when my late husband was diagnosed with a terminal, non-curable, yet treatable disease, I felt we were living on a roller coaster of emotions, appointments, and treatment options. ... Every day was a journey into uncharted territory for both of us. ... It was only during the last few days that we found the strength to say “no more treatments” and asked for hospice. ... Physicians recognize that hospice is not a withdrawal of care but a redirection of care to meet the needs of patients with an advanced terminal illness/disease. ...Editor's Note: The word "redirection" powerfully, easily shifts the course of care. The person remains at the center, with the focus being the person, not the disease. This is not a denial of dying and death, but rather a signpost, a gentle way to open the difficult conversation for providing information and asking "what matters most to you, now?" 

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.

Our Hospice collects food in employee-led drive The Republic; by Staff Reports; 6/20/24 Our Hospice (OHSCI) and Palliative Care collected 500 pounds of food for patients and families in need in an employee-led food drive. “The efforts, enthusiasm, and passion displayed by everyone at Our Hospice is truly astonishing!” said Chealsy Parr, a social worker who led the food drive. “Thanks to the participation of teammates from Greensburg, Columbus, the Hospice Center, Palliative Care, and North Vernon, we’ve significantly impacted those facing food insecurity.” “The employee – led food donations will go a long way to support those in our care who are in need,” said Steph Cain, president, Our Hospice and Palliative Care. [Located in Indiana] Editor's Note: Hospice leaders, how might you replicate this with your employees and volunteers, for the patients you serve? Forward this to the right person who can take this great initiative and make it happen.

Of Mice and Meaning: Multidisciplinary perspectives on the interconnectedness of pain, stress, and suffering The Free Library; by Claire Woodward and Taylor Woodward, Indiana University Bloomington; 6/13/24 ... We are siblings and scholars from seemingly disparate disciplines (one in humanities and one in neurobiology), yet we are both engaged in work to understand--and ultimately alleviate--various facets of pain and suffering. We currently work in two different laboratories at the same institution (Indiana University). Taylor works in a lab with mice and Claire works in a lab on storytelling. Our scholarship includes interpreting reactions to pain, stress, and suffering, both felt and observed, behavioral and aesthetic. Such observations provide further insights into understanding how the mind and the brain process pain and suffering. ...

‘We don’t talk about death’: Winston-Salem journalist seeks to help people understand dying, deathbed visions Fox 8 WGHP - High Point, NC; by Bob Buckley; 5/29/24 There may not be anything that fascinates people more than death. It may be the thing many people avoid confronting the most. “In our culture, we’re pretty separated from death. And I don’t know the figures, but the vast majority … take place in hospitals. We don’t talk about death a lot in our culture,” said Phoebe Zerwick, a journalist based in Winston-Salem who recently wrote about deathbed visions for the New York Times Magazine. ... Zerwick became aware of the work of Dr. Christopher Kerr. ... “The biggest difference between hallucinations and these experiences is how the person is made to feel,” Dr. Kerr said. “Most hallucinations leave the person distressed and agitated and would be further confused. These experiences bring comfort. They bring meaning. They’re drawn from life. They really validate the life.” ... “I think the moral of the story is to be present and to be present with people when they are terminally ill. Be present when they’re dying,” Zerwick said.