Literature Review

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.

Global collaboration launches culturally inclusive palliative care education tool Hospice News; by Holly Vossel; 9/16/24 An international collaboration has led to the development of a new palliative care training tool aimed at improving quality and equitable access. Health systems across the globe are recognizing a growing need to boost the supply of providers able to care for a swelling, aging population of serious and terminally ill patients. Rising demand was among the driving forces behind the newly unveiled COllaboratively DEveloped culturalY Appropriate and inclusive Assessment tool for Palliative Care Education (CODE-YAA@PC-EDU). The palliative care education tool was developed in concert by the Council of Europe, the World Health Organization (WHO) and the United Nations. The organizations joined forces to design a sustainable training model that could build up the palliative workforce. The project is supported in part by the research network European Cooperation in Science and Technology (COST).

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.  

Interventions provided by palliative care social workers: Provide interventions that lessen suffering in patients living with serious illnessUniversity of Colorado Anschutz Medical Center email; by Melissa C Palmer; 9/3/24... Reflecting on my own years of experience as a palliative care social worker, the work we do is not as clear-cut as being able to prescribe medication for a symptom or titrate pain medication. The art of the intervention for social work takes time, patience, and congruent presence. To the layperson, it may appear that our interventions are just to talk with people. But that is just a small piece of the beauty and grace that evolves from our work.

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.

​​Bioethicists scrutinize Pontifical Academy for Life’s new guidance on withdrawing food, water The Catholic World Report; by Jonah McKeown; 8/16/24 After the Pontifical Academy for Life (PAFL) last month issued a booklet summarizing the Church’s teaching on a number of bioethical issues, the section on “artificial nutrition and hydration” (ANH) has some observers concerned about what they see as a departure from previous Church teaching. ... The Church’s teaching on this issue was recently in the news in the United States because of the ongoing case of Margo Naranjo, a disabled Texas woman whose parents, who are Catholic, announced last month that they had decided to allow Margo to die by starvation in hospice. They were prevented from doing so after a judge intervened. ... What does the Pontifical Academy's new document say? ... “[T]he doctor is required to respect the will of the patient who refuses them with a conscious and informed decision, also expressed in advance in anticipation of the possible loss of the ability to express himself and choose,” the PAFL wrote. he PAFL noted that Pope Francis has emphasized the importance of considering the whole person, not just individual bodily functions, when making medical decisions.Editor's Note: This "guidance" and discussion is much more complex than the summarized information above. Click on the title's link to read more.

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. 

Resources for people coping with Alzheimer’s disease Everyday Health; by Pamela Kaufman; updated 7/29/24 No one should have to deal with Alzheimer’s alone. The government agencies, nonprofit groups, and other resources listed here can help people with Alzheimer’s and their caregivers cope with the disease through education, advocacy, support services, clinical trial opportunities, and blogs that share the wisdom of lived experience. [This essential list of resources includes:]

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.

Sasha McAllum Pilkington on grace and storytelling at the end of life Psychotherapy.net; by Lawrence Rubin; 7/22/24 Narrative Clinician, Sasha McAllum Pilkington [of New Zealand],  shares poignant stories she co-created with hospice clients which honor and celebrate their lives. [This interview includes: ...]

Integrative oncology for patients with lung cancer: A prospective pragmatic controlled trial Lung Cancer; by Eran Ben-Arye, Orit Gressel, Shahar Lifshitz, Nir Peled, Shoshana Keren, Noah Samuels; 6/25/24 Complementary medicine and integrative oncology modalities (IOM) have been included in the clinical practice guidelines of the American College of Chest Physicians in the treatments of patients with lung cancer. The present study examined the impact of a patient-tailored IOM treatment program on quality of life (QoL)-related concerns among patients with non-small and small lung cancer undergoing active oncology treatment. ... High adherence to a 6-week IOM program within supportive/palliative care for patients with lung cancer was found to alleviate pain and emotional concerns, improving overall QoL. Further research is needed to confirm the findings in real-life IOM practice for patients with lung cancer.