Literature Review

Model improved Advance Care Planning for cancer patients Cancer Therapy Advisor; by Jen Smith; 10/4/24 A machine learning survival model that selects patients for serious illness conversations can increase the rate of advance care planning and prognosis documentation for cancer patients, according to research published in the Journal of the National Cancer Institute.  The study included 33 oncologists and 22 advance practice providers. Once a month, the providers were randomly selected to receive the intervention. It consisted of weekly automated emails notifying providers about patients who were identified by the machine learning model as a high priority for serious illness conversations. Patients were categorized as high priority if they had less than 2 years to live according to the model and had no prognosis documentation. ...

Caring for Hindu patients at the end-of-life: A narrative review Cambridge University Press; by Brinda Raval Raniga, MD, Savannah Kumar, MD, Rebecca McAteer Martin, MD, and Craig D. Blinderman, MD; 10/3/24  This paper reviews the existing literature to identify specific challenges that may arise in the context of providing palliative and end-of-life (EOL) care for Hindu patients in the physical, psychological, and spiritual domains. We offer practical strategies where appropriate to mitigate some of these challenges. We review how the Hindu faith impacts EOL decision-making, including the role of the family in decision-making, completion of advance directives, pain management, and decisions around artificial nutrition and hydration (ANH) and cardiopulmonary resuscitation (CPR). 

Social risks and health care use in medically complex patientsJAMA Network Open; Emma L. Tucher, PhD; Allison L. Steele, MPH; Connie S. Uratsu, RN, MS, PHN; Jodi K. McCloskey, MPH; Richard W. Grant, MD, MPH; 9/24This cohort study of ... patients with complex medical comorbidity found that social risks were associated with higher odds of inpatient admissions, emergency department visits, and mental health visits during a 1-year period. Individuals with added social risks were younger and more likely to be Medicaid eligible and Black or Hispanic. Efforts to address health care use in patients with complex medical comorbidity may benefit from concurrent efforts to reduce social risks.

One Senior Place: What legal steps should be taken after dementia diagnosis? Florida Today; by Brenda Lyle; 10/1/24 After a dementia diagnosis, preparing key legal documents early helps families focus on the quality of life for their loved one. ... Dementia is a term for many progressive neurodegenerative disorders that affect memory, thinking, and behavior. Alzheimer accounts for about 60% of all dementias. As the disease advances, individuals may lose the ability to make informed decisions about their health care, finances and other important aspects of life. Legal planning is absolutely crucial for ensuring that the wishes of the person with dementia are honored and that their affairs are managed appropriately. This planning also helps reduce stress for family members and caregivers. [Click on the title's link to continue reading for basics about Durable power of attorney, Heath care surrogate, Living will, Last will and testament, and Guardianship.]

How 300 terminally ill couples had their ‘perfect’ weddings thanks to this nonprofit (Exclusive) People Magazine; by Johnny Dodd; 9/28/24 "We're in the business of hope," says Wish Upon a Wedding's executive director, Lacey Wicksall. On any given day, Lacey Wicksall can be found fielding phone calls from couples across the nation who are deeply in love but are running out of time. And that’s exactly why Wicksall is talking to them. As the executive director with the Chicago-based nonprofit Wish Upon a Wedding, the 43-year-old mother of two helps provide free weddings and vow renewals to couples who are facing a terminal illness or a life-altering health circumstance. “I just got off the phone with a couple a few hours ago and I still have tears in my eyes,” says Wicksall of a recent phone call, vetting a couple who were in the process of applying for one of the nonprofit’s weddings. “We were all in tears. It’s hard.” ... Since 2009, the organization has provided nearly 300 ceremonies by working with wedding industry professionals who donate everything from catered food and wedding attire to a venue, videographers and DJs. ... Before being selected for an interview by Wicksall and “wish coordinator” Megan Biehl, they verify the applicant’s health status through their physician or hospice worker, then go to work learning more about the couple and what they envision for their special day. ...

New coalition launches to advance palliative cancer care Hospice News; by Jim Parker; 9/30/24 A new organization, Together for Supportive Cancer Care, launched Monday with a mission to expand access to palliative care among cancer patients. A charitable group, The Sheri and Les Biller Family Foundation, convened more than 40 member organizations, including health care providers, pharmaceutical companies, patient advocacy groups, public policy experts, employers and insurers, among others. “For decades, leaders around our country have worked to show the promise and impact of supportive care programs for people living with cancer, their caregivers and their loved ones,” said Audrey Haberman, the foundation’s CEO, in a statement. “The launch of Together for Supportive Cancer Care builds on this work and is an important step toward creating a health care system where early and ongoing access to supportive care is not a privilege, but a fundamental part of the cancer journey for everyone.” 

It costs nothing to be kind Parkview Health; 9/26/24 Throughout her life, Vera Jean Burnett lived by the motto, "It costs nothing to be kind." This ideology was present in everything she did and extended to all she encountered, from supporting local charities to helping animals in need. Recently, we spoke with her husband, Kevin Burnett, about how that kindness was returned to him and his family through the care provided to Vera in her final days at the Parkview Supportive Care Unit. ...

HopeHealth CMO: Hospice rules for ‘unrelated care’ getting stricter Hospice News; by Jim Parker; 9/25/24 Dr. Ed Martin began working in hospice in 1987 after hearing families talk about their experiences with those services. Today, he is chief medical officer of Rhode Island-based HopeHealth. The more than 50-year-old nonprofit organization also serves parts of Massachusetts. Martin recently spoke about the complicated issue of care that is deemed “unrelated” to a patient’s terminal diagnosis at the National Hospice and Palliative Care Organization’s Annual Leadership Conference in Denver. Hospice News sat down with Martin at the conference to discuss how he and his organization are addressing the matter of unrelated care, as well as the efficacy of requirements for an addendum to the election statement. [Click on the title's link to continue reading this interview.]

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.