Literature Review

Palliative care in kidney cancer more than just relieving symptoms Cure; by Ashley Chan; 9/26/24 Patients with kidney cancer who want more support during treatment can consider palliative care, whether it’s for symptoms or discussing goals and values. ... For patients with kidney cancer, understanding how palliative care can help is essential throughout the treatment process. Palliative care, according to the Mayo Clinic, is medical care that specializes in relieving pain and symptoms associated with an illness. This type of care can also help patients cope with treatment-related side effects. However, there’s more to palliative care than just relieving symptoms. It also “aims to help patients and families in one of three major categories,” Dr. Pallavi Kumar explained during an interview with CURE®. Kumar is the director of Oncology Palliative Care and assistant professor of Clinical Medicine in the hematology-oncology division at the University of Pennsylvania. She noted that the three categories of palliative care include:

The evolving landscape of Amyotrophic Lateral Sclerosis: A fatal disease!  Delveinsight; 9/24/24 Amyotrophic Lateral Sclerosis (ALS) is a devastating neurodegenerative disease characterized by the progressive degeneration of motor neurons, leading to muscle weakness, paralysis, and ultimately, death. ... Despite ALS being relatively rare, affecting 2-5 per 100,000 people worldwide, the question Is ALS on the rise? is gaining attention. While global prevalence has not significantly increased, improved diagnostic techniques, earlier detection, and greater awareness have led to a more accurate identification of ALS cases. Many researchers believe that enhanced surveillance and better tools for genetic testing are uncovering more cases than previously recognized, rather than a true rise in the disease’s incidence. However, with an aging global population, the burden of ALS may grow, as age is a major risk factor. Editor's note: Do you provide disease-specific training for your staff? ALS patients' and families' needs are unique. A significant disease comparison is between ALZ (Alzheimer's) and ALS. With ALZ (Alzheimer's), the brain decreases its abilities to function while the body can remain strong; the person is mobile with cognitive limitations. In contrast, with ALS, the body decreases its abilities to function while the brain/mind/emotions can remain strong. The person is immobile with cognitive awareness, but extreme physical limitations in communicating one's thoughts, emotions, and needs. ALS-specific communication tools provide crucial help for all. For more information in your location, visit The ALS Association's USA map.

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.

[Opinion] Public health’s spirituality disconnect Harvard Public Health; by Katelyn N.G. Long, David H. Rosmarin, and Howard K. Koh; 9/10/24The separation of church and state has long represented a hallowed legal principle. As a result, perhaps, the field of public health has often divorced itself from spirituality—to the detriment not only of the diverse populations we serve but also of ourselves. ... Our team from the Harvard Initiative on Health, Spirituality and Religion studies ways to bridge the public health disconnect between body and soul. As part of our commitment to research and practice, we worked in 2022 alongside several dozen colleagues nationwide to analyze the most rigorous studies published on the topic this century and to make recommendations for the future. ...

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.  

Not intervening as a form of care: Negotiating medical practices at the end-of-life AnthroSource, by the American Anthropological Association; by Simon Cohn, Eric Borgstrom, and Annelieke Driessen; 8/27/24 ... The story of Keith, a patient living with multiple sclerosis but now with limited time left, introduces a common feature of biomedicine; once set on a particular trajectory, clinicians are often committed to a cascade of options without really questioning their ultimate value: "When I saw the doctor, the first thing he said was, ‘Oh, we can do this, or we can do that…’ So I said, ‘No, you won't. You won't do any of those things, thank you very much.’ And then when he suggested a drug that will give me ‘an extra few months’, I replied ‘Does that give me an extra few months now, or an extra few months at the end? Because I want the few months now, I don't want them at the end.’" Here, Keith recounts how his doctor seemed compelled to suggest one treatment after another with the intention of prolonging his life, rather than acknowledge that because he was dying, a different approach might be more appropriate. ...

How to recognise the dying phase in palliative and end-of-life care Nursing Times; by Julie Kinley and Cathriona Sullivan; 8/19/24This article gives practical guidance for nurses on providing care in the last days of life. ... Birth and death are two certainties in life. Consequently, during their career, many nurses will support, and indeed lead, the management of the care of dying people. ... [Knowing] how to recognise – and manage – this phase of life remains a career-long key responsibility and role. ... In any setting, nurses are part of a wider team. The recognition of dying and the dying phase can be enhanced if everyone:

4 ways health systems combat burnout Becker's Hospital Review; by Kristin Kuchno; 8/13/24 Although burnout is down among healthcare professionals, its persistence still garners attention and solutions from systems. Physician burnout fell from 53% in 2022 to 48.2% in 2023, according to a July 2024 report by the American Medical Association. ... Here are four methods four hospitals and health systems are using to address workforce burnout.

Person-centered, goal-oriented care helped my patients improve their quality of life Journal of the American Board of Family Medicine; by Lee A. Jennings and James W. Mold; orignially posted 5/24 issue, again on 8/15/24 When the goal is to help patients improve their quality of life, it makes sense to focus directly on the activities and relationships that are most important to each patient. This can be accomplished most effectively by following a three-step process that includes 1) connecting with the patient around what matters to them, 2) co-creating a goal-oriented plan, and 3) collaborating with patient, family, team members, and consultants to increase the probability of success. Once this approach has been mastered and the necessary systems, processes, and relationships are in place, this should not take more time than a problem-oriented approach, and it will almost certainly be more satisfying for both physician and patient. Editor's Note: Simple. Effective. Meaningful.

‘The Last Ecstatic Days’ one day screening strives to teach the world how to die without fear Bangor Daily News, Bangor, ME; by BDN Community; 8/13/24 Hospice Volunteers of Waldo County invites Greater Waldo County to a single night screening on Tuesday, Aug. 20 at 7 p.m. Post-screening, there will be a Community Conversation with Hospice and Palliative Care Physician Aditi Sethi, MD and Director of the Center for Conscious Living & Dying/Hospice Volunteers of Waldo County’s Flic Shooter. Sethi, MD’s end-of-life palliative work is featured in the film. “The Last Ecstatic Days” focuses on a young man with terminal brain cancer (Ethan Sisser) as he sits alone in his hospital room. When Sisser starts live-streaming his death journey on social media, thousands of people around the world join to celebrate his courage. Still, he envisions more–to teach the world how to die without fear. To do that, Sisser needs to film his actual death. What unfolds next is a rarely-glimpsed perspective of how a community of strangers helps a young man die with grace.Editor's Note:  This movie has been featured on PBS. The Boston Globe describes, "... courageous end-of-life chronicle, which overflows with compassion." The Louisiana Mississippi Hospice & Palliative Care Organization shared this as a viewing and discussion at their July 2024 conference. For the trailor and more information, click here. 

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.

A rabbi shares what he’s learned speaking with people in their final moments of life: Exploring the final moments before death is a reminder of what really matters in life  Forward - Jewish. Independent. Nonprofit.; by Rabbi Daniel Cohen; 7/28/24  I have been at the bedside of many people in their final moments on earth. The experience can be either haunting or inspiring. Ironically, my first experience of saying goodbye to someone I loved was as a 9-year-old boy. My grandfather was dying from lung cancer ... I remember the final moments as if they were yesterday. ... I have seen people call out to loved ones in the days or moments before their body and soul separate. I have seen people wait for a loved one to arrive at their bedside, further testimony that the body may be dying but the soul is very much alive. ... In truth, exploring the final moments before death is not intended to be depressing, but a reminder of what really matters in life. ... Looking at the day of death can awaken us to invest more fully in life. Each of us possesses an inner voice beckoning us and pushing us towards greatness. Do we hear that voice and do we invest in it?

Palliative Medicine - June 2024 Issue