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.

AI shouldn't decide who dies. It's neither human nor humane Fox News; by John Paul Kolcun and Anthony Digiorgio; 9/20/24 [Opinion] As we write this, PubMed ... indexes 4,018 publications with the keyword "ChatGPT." Indeed, researchers have been using AI and large-language models (LLMs) for everything from reading pathology slides to answering patient messages. However, a recent paper in the Journal of the American Medical Association suggests that AI can act as a surrogate in end-of-life discussions. This goes too far. The authors of the paper propose creating an AI "chatbot" to speak for an otherwise incapacitated patient. To quote, "Combining individual-level behavioral data—inputs such as social media posts, church attendance, donations, travel records, and historical health care decisions—AI could learn what is important to patients and predict what they might choose in a specific circumstance." Then, the AI could express in conversant language what that patient "would have wanted," to inform end-of-life decisions. We are both neurosurgeons who routinely have these end-of-life conversations with patients’ families, as we care for those with traumatic brain injuries, strokes and brain tumors. These gut-wrenching experiences are a common, challenging and rewarding part of our job. Our experience teaches us how to connect and bond with families as we guide them through a life-changing ordeal. In some cases, we shed tears together as they navigate their emotional journey and determine what their loved one would tell us to do if they could speak. 

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.

Simon Boas’ ‘inspirational’ book A Beginner’s Guide to Dying is published posthumously Jersey Evening Post; by Rod McLoughlin; 9/13/24 Friends and family of the late Simon Boas gathered ... to celebrate the posthumous publication of his book, A Beginner’s Guide to Dying. The former Jersey Overseas Aid chief executive – who died from throat cancer on 15 July at the age of 47 – spent his last months developing into a book ideas first explored in articles for the Jersey Evening Post. Described by the Daily Mail as “an inspirational paean to the joy of life”, Mr Boas’ words reached a huge audience after they were reprinted in the national press and broadcast on the BBC’s Today programme. A proportion of the proceeds are being donated to the African Palliative Care Association and the International Children’s Palliative Care Network. Mr Boas’ inspiring writings in the face of his terminal diagnosis saw him awarded the Bailiff’s Silver Medal in May. Shortly before his death, he also received a personal letter from the King and Queen ahead of their visit to Jersey.

Telehealth palliative care helps people living with advanced cancer Cancer Health; by Liz Highleyman; 9/9/24 Virtual palliative care can be as effective as in-person care, according to a recent study. Oncology palliative care is intended to relieve symptoms and improve quality of life. It is not the same as hospice care, and it can help people at any stage of cancer. National guidelines recommend integrating palliative care from the time of diagnosis for people with advanced cancer, but it is underutilized in part due to a shortage of trained providers. This study included 1,250 adults at 22 U.S. cancer centers who were diagnosed with advanced non-small-cell lung cancer. They had palliative care sessions every four weeks conducted either via video or in person. After six months, quality-of-life scores were equivalent in the two groups. They also did not differ significantly in terms of depression or anxiety, coping skills, understanding treatment goals or perception of their prognosis.

Too Much, Too Little, Just Right: Optimizing cancer care for older adults The ASCO Post, American Society of Clinical Oncology; by Ramy Sedhom, MD; Bobby Green, MD; and Julia  Frydman, MD, MS; 9/10/24 Imagine walking into a fancy restaurant only to find a menu consisting mostly of kids’ dishes. It would make no sense. Just 25% of restaurant diners are younger than age 12, and they rarely write Yelp reviews. But when it comes to cancer treatment, this is not very far from what we do. The median age for a new cancer diagnosis is 67, and among those who die of cancer each year, 73% are older adults. Yet just one in four clinical trial participants is aged 70 or older. Consequently, guidelines for most new cancer therapies are based on a median age that is significantly younger than the patient population who actually receives these therapies. That’s quite a conundrum. More than half of patients older than age 65 experience toxicity of grade 3 or worse while undergoing standard chemotherapy. ... Palliative Care—For a 40-year-old mother of two young children, the goal of cancer treatment is usually clear: complete remission and long-term survival. But when you ask older patients with cancer about their priorities, a majority regard symptom control, emotional coping, and other quality-of-life measures at least as much as longevity and sometimes more.

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). 

Grief Memoir: ‘It was my turn to do everything for her We Are The Mighty; by Jessica Hall; 8/28/24 ... I joined the phone call with the doctor where he told us all the worst news. The cancer was growing everywhere along the spine. ... He told us that it was time for hospice. ... Even though I had been preparing for this for months, I was truly not ready to go from child to caretaker. ... For my entire life, my mom had cared for me. She had been there when I was sick or hurt. She cleaned my house (sometimes to my chagrin). She cooked my favorite meals and she let me take breaks. Now it was my turn to do everything for her. It hit me like a ton of bricks, but I also just knew that I had to do it. We all had to do everything for her to make her final days easy for her. Hospice came by to get everything set up. ... [Click on the title's link to continue reading this beautiful, personal story.]Editor's Note: Calling all hospice executive leaders who do not have clinical, direct patient care experience--read this article to grasp common family dynamics, decisions, actions, emotions, and life-changing moments for each patient you serve. Multiply this out for the many family members of each patient you serve. How do your hospice services tune into and support these family members?

World Alzheimer's Month: September 2024 Alzheimer's Disease International, London, UK and Lincolnshire, IL, USA; retrieved from the internet 8/26/24Each September, people unite from all corners of the world to raise awareness and to challenge the stigma that persists around Alzheimer's disease and all types of dementia.  ... The 2024 World Alzheimer's Month will centre around the taglines 'Time to act on dementia, Time to act on Alzheimer's.' ...  Editor's Note: Click here for Alzheimer's Disease Internationals' 2024 campaign theme materials. Click here for the Alzheimer's Association in your USA location.

Doctors saved her life. She didn’t want them to. DNYUZ; by Kate Raphael;  8/26/24 Marie Cooper led her life according to her Christian faith. ... [And, she] always said that at the end of her life, she did not want to be resuscitated. ... Last winter, doctors found cancer cells in her stomach. She’d had “do not resuscitate” and “do not intubate” orders on file for decades and had just filled out new copies, instructing medical staff to withhold measures to restart her heart if it stopped, and to never give her a breathing tube. In February, Ms. Cooper walked into the hospital for a routine stomach scope to determine the severity of the cancer. After the procedure, [Ms. Cooper's daughter] visited her mother in the recovery room and saw her in a panic. ... [The daughter] called for help and was ushered to a waiting room while the medical team called an emergency code. Ms. Cooper grew even more distressed and “uncooperative,” according to medical records. Doctors restrained her and inserted a breathing tube down her throat, violating the wishes outlined in her medical chart. Ms. Uphold, livid, confronted the doctors, who could not explain why Ms. Cooper had been intubated. ... 

My Dad had an Advance Directive. He still had to fight to die Newsweek - My Turn; by Maggie Schneider Huston; 8/26/24 My mom  died peacefully. My dad died 72 days later, angry at the doctors for ignoring his wishes. ... Dad had heart surgery on December 20, 2023. An hour after the surgery ended, his vital systems started shutting down. A cascade of interventions, one after another, kept him alive. Four days later, he said: "Put me on hospice." The doctor dismissed this request, rolling his eyes and saying: "Everyone on a ventilator says that." On Christmas Day, my father asked for hospice again. He was in pain. He knew his recovery would be long and ultimately futile. He would never have an acceptable quality of life again. ... Dad's care team insisted palliative care was the same as hospice care, but he knew the difference. He wanted hospice care. Finally, they reluctantly agreed and called for a social worker to make arrangements. It wasn't necessary. Once they removed his treatment and relieved his pain, he died five hours later. ... Editor's Note: This article is not about Medical Aid in Dying (MAiD). It is about honoring Advance Directives, person-centered care with communications and actions related to "palliative" vs. "hospice" care.