Literature Review

Bereaved mum shares 'what not to say' in new book BBC News; by Roger Johnson and Jonny Humphries; 9/24/24 A bereaved mother has written a book exploring the sensitive topic of how to speak to a parent struck by the loss of a child. Singer and entertainer Kiki Deville, from Earby, said she felt as if she would "never experience joy again" after losing her four-week-old son Dexter in 2007. Dexter died from the rare genetic condition Zellweger Syndrome and spent his last days in Chorley children's hospice Derian House, of which Ms. Deville is now a patron.  Her work there, including countless conversations with other parents, informed her book 'What Not To Say: A Practical Guide to Supporting Bereaved Parents'. Ms. Deville said 17 years after the loss of Dexter, she still remembers the first time someone made the well-meaning but painful comment: "At least he was just a baby." "Now that infers were he older, his death would have mattered more," she told the BBC.  From speaking to other mothers, Ms. Deville also gave examples such as "at least you have other children" and "they're in a better place" as things not to say. She said: "It's really important to recognise that nobody says anything out of malice, I don't think anybody sets out to hurt."Editor's note, calling all non-clinical hospice and palliative care leaders: Your interactions with bereaved parents speak volumes. Do you convey cheap platitudes or wise empathy? Incorporate these human vulnerabilities into your leadership skills. Open yourself to the pain of experiencing the pain and joys of your organization's palliative/hospice pediatric families. Invest a day of shadowing with a pediatric interdisciplinary team member. Be willing to go there. Be willing to be there: physically, mentally,  emotionally, and spiritually (without imposing your own onto others).

Top 5 regrets people have on their deathbeds: What they can teach us about living healthy, fulfilled lives, from an internal medicine doctor NBC-6 South Florida; by Alex Koller, CNBC; 9/23/24 To live a meaningful, fulfilling life, you have to accept that it'll eventually come to an end, says Shoshana Ungerleider. Over the years of caring for ill hospital patients, Ungerleider — a doctor who specializes in internal medicine — has observed regrets among people near the end of their lives, she tells CNBC Make It. Here are five regrets she says people often express:

Suffering revisited: Tenets of intensive caring Psychiatric Times; by Harvey Max Chochinov, MD, PhD, FRCPC Patients approaching death experience many losses, including losing a sense of self. This is perhaps one of the most substantive existential challenges dying patients face, as they find the essence of who they are—along with who they were or who they want to be—under assault. This notion of disintegration or fractured sense of personhood often lies at the heart of human suffering, which Eric Cassell, MD, MACP, defined as a person’s severe distress at a threat to their personal integrity. Although suffering can often lead to feelings of hopelessness and therapeutic nihilism for patients and health care professionals, it is important for those of us who care for the dying to understand the nature of suffering and how to be most responsive and therapeutically effective. [This author's Tenets of Intensive Caring include the following:]

Death is no enemy Psychiatric Times; by Sidney Zisook, MD; 9/17/24... As mental health clinicians, we often confine our conversations about death and dying to recognizing suicide risk and preventing suicide. And for good reason. Suicide is the 11th leading cause of death in the United States, ... Far less attention is paid by mental health clinicians to other aspects of death and dying. But we are human, first and foremost, and coping with a host of issues related to the end of life is inextricably bound to both our professional and personal lives. Like it or not, death is part of life. We, as mental health clinicians, are not always as prepared as we would like to be to help ourselves, our loved ones, our patients, and their loved ones deal with loss, dying, death, and bereavement. For many physicians, 1 or 2 hours in medical school and perhaps another few hours during residency are all the training we receive in these complex and challenging clinical issues. ...  Chochinov provides a clinician’s guide for “being with” dying patients. He offers ways of providing intensive caring to enhance empathy, respect, connectivity, and hope, and to make the experience of a dying patient more tolerable than it otherwise might be. ... I have utilized his Patient Dignity Question, which asks, “What do I need to know about you as a person to take the best care of you possible?” on several occasions with gratifying results for both the patient and me.

Talk about death, but live your life: What people working in end-of-life care have learned Yahoo Life; by Elena Sheppard; 9/16/24 Eventually, we are all going to die. It’s a reality that most people are uncomfortable with and do everything they can to avoid thinking about. But for people who work in end-of-life care, such as hospice workers and death doulas, death is both a fact of the job and a part of their everyday reality. While the work may sound grim, those who do it say that their daily proximity to death doesn't cast a shadow over their lives; rather, it has enabled them to more purposefully celebrate life’s beauty. ... Yahoo Life spoke to hospice professionals to hear the life lessons they’ve learned by working so closely with death. Here’s what they said. ...

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.

Mental health jobs to grow 3X more than the rate of all US jobs Becker's Hospital Review; by Erica Carbajal; 9/9/24 By 2033, employment growth in mental health professions is expected to triple that of average job growth in the U.S., according to a CNN analysis of data from the Bureau of Labor Statistics. While the median projected employment growth for all occupations across the next decade is 4%, the rate for mental health-related jobs is 12%. This includes psychiatrists, psychologists, therapists, counselors, psychiatric aids and social workers, according to CNN's report published Sept. 7. Editor's note: Too often, mental health health jobs in hospice and palliative care are relegated to low status on priorities for staffing, instead of the regulatory high priority for "whole-person" care defined throughout the CMS Hospice Conditions of Participation. As significant changes continue to unfold for hospice and palliative services, we will continue to report trends and shifts that emerge in the healthcare landscape for mental health jobs.  

Hugo man dies in house fire  [hospice patient] KXII 12 TV, Hugo, OK; by KXII Staff; 9/5/24 A fire at a home in Hugo claims the life of a former Choctaw County assistant district attorney. Officials said the fire happened Sunday afternoon. The Choctaw County Emergency Manager told News 12 that John Bounds, who was in hospice care, was unable to escape. All others in the house got out safely.Editor's note: What emergency discussions do your interdisciplinary team members have with home hospice patients and their caregivers? Regular fire safety training (and other forms of patient care safety, workplace safety, etc.) are required by OSHA and accreditation organizations. 

American Heart Association affirms importance of palliative care in treating cardiac conditions Hospice News; by Jim Parker; 9/4/24 Multidisciplinary palliative care offers clear benefits to patients with cardiovascular disease, particularly when it comes to medication management and goals-of-care conversations. Palliative care with effective medication management, shared decision making and symptom management can help improve quality of life for heart disease patients, according to a scientific statement from the American Heart Association (AHA) — “Palliative Pharmacotherapy for Cardiovascular Disease.” The statement offers guidance for health care providers to integrate palliative methods as part of holistic medication management at all stages of a patient’s illness, the AHA indicated. This underscores the importance of collaboration between palliative care professionals and other clinical specialties, according to Dr. Andrew Esch, director of palliative care program development at the Center to Advance Palliative Care (CAPC). 

Avoid these mistakes in palliative care to enhance your loved one's well-being Leesville Leader, Lake Charles, LA; by Evertise Digital; 8/26/24 For people with life-threatening diseases, palliative care is crucial in providing comfort and improving quality of life. It’s essential to focus on the details and avoid common mistakes in order to deliver good treatment. Mistakes in palliative care can inadvertently cause discomfort or diminish the quality of the support provided. It’s critical to recognize and steer clear of certain mistakes to guarantee that your loved one receives the finest treatment possible. By focusing on these key areas, you can enhance their well-being and provide the compassionate, attentive care they need during this challenging time.

“What I wish I knew about dementia”: A caregiving only child’s experience The Healthy; by Dr. Patricia Varacallo, DO; 8/20/24 It's no secret dementia affects the brain of the patient, and tests the hearts of their loved ones. Through one woman's personal journey, experts advise on the emotional, medical, and financial aspects of caregiving for dementia. ... Drawing from Ann’s caregiving journey and insights from Dr. Wint and Lucille Carriere, PhD, Cleveland Clinic Angie Ruvo Endowed Caregiving Chair, we share their collective wisdom on what they wish more people knew about dementia.

Commentary: Prognostication in Alzheimer's disease and related dementias Journal of the American Geriatrics Society / Early View; by Natalie C. Ernecoff PhD, MPH, Kathryn L. Wessell MPH, Laura C. Hanson MD, MPH; 8/8/24  ... Hospice provides comfort-oriented care, emphasizing patient-tailored elements of quality of life, including time with family, access to nature, and music. In late-stage ADRD, studies show that a majority of families prioritize comfort-oriented treatment, and understanding prognosis may help them align treatments accordingly. Yet, only 15% of people enrolled in hospice with a primary diagnosis of ADRD. This is due to difficulty estimating 6-month prognosis required for hospice eligibility—ADRD carries a prognosis of 12–18 months in the latest stage. While low rates of live discharges from hospice are a regulatory requirement for hospices, people who are increasingly experiencing ADRD progression lose access to those beneficial hospice services. ...

Amid trauma and burnout, it ‘takes courage’ to reflect on mental, emotional well-being Healio; by Jennifer Byrne; 7/31/24 ... [William E. Rosa, PhD, MBE, MS] began to realize that in the stressful, devastating situations he and his colleagues faced daily, there was much to be learned from the principles of trauma-informed care. ... “This is the idea that cultivating an awareness can prevent us from re-traumatizing ourselves and others,” he said. “I think it starts with reflecting on — and telling the truth about — our mental and emotional well-being. That takes courage.” In acknowledging the emotional scars, brokenness and vulnerability that comes from tragedy and loss, individuals can begin to heal a lifetime of stored and unresolved trauma, Rosa said. “As a workforce, you and I see unacceptable rates of suicide, burnout, moral distress and attrition,” he said. “It’s time that we come to safe and supported terms with our trauma — not just as individuals, but as a collective, not only for the patients and families we serve, but for us to survive.”Editor's Note: In this article, Dr. Rosa identified "the emotional impact of taking yet another patient off the ventilator at the end of life." Recent articles we've posted in this newsletter about trauma-informed care been in our "Top Reads." While those articles focused on trauma-informed care of the persons you serve, this focuses on the persons who serve, your all-important direct patient care clinicians.