Literature Review

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?

New ASCO Guidelines stress importance of early palliative care Hospice News; by Jim Parker; 8/26/24 The 2024 update to the American Society of Clinical Oncology’s (ASCO) clinical practice guidelines place renewed emphasis on palliative care. The guidelines are updated periodically by a multidisciplinary team, including a patient representative and experts in medical and radiation oncology, hematology and palliative care. For the 2024 revisions, this panel reviewed 52 randomized controlled trials that evaluated outcomes among cancer patients who received palliative care, ASCO reported. “This is a pivotal time,” the panel’s co-chair Betty Ferrell of City of Hope Cancer Care told the ASCO Post. “This guideline is a call to action for everyone to think about how they are integrating palliative care for all patients with cancer. There are great advances in cancer care, but none of these will be fully effective unless we fully integrate palliative care.”

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.

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. ... 

Cancer treatment 101: A primer for non-oncologists Medscape; by George D. Lundberg, MD; 8/22/24 Each year in the United States, approximately 1.7 million Americans are diagnosed with a potentially lethal malignancy. Typical therapies of choice include surgery, radiation, and occasionally, toxic chemotherapy (chemo) — approaches that eliminate the cancer in about 1,000,000 of these cases. The remaining 700,000 or so often proceed to chemotherapy either immediately or upon cancer recurrence, spread, or newly recognized metastases. ... I'm speaking in generalities, understanding that each cancer and each patient is unique. [Dr. Lundberg summarizes in user-friendly language:]

Novel drug treatments for pain in advanced cancer and serious illness: a focus on neuropathic pain and chemotherapy-induced peripheral neuropathyPalliative Care and Social Practice; by Mellar P Davis; 7/24This review will discuss haloperidol, miragabalin, palmitoylethanolamide (PEA), and clonidine as adjuvant analgesics or analgesics. Haloperidol [demonstrates] ... only low-grade evidence that [it] improves pain when combined with morphine, methadone, or tramadol in patients who have cancer, pain from fibrosis, radiation necrosis, or neuropathic pain. Miragabalin is a gabapentinoid approved for the treatment of neuropathic pain ... [and] in randomized trials, patients with diabetic neuropathy have responded to miragabalin. Multiple randomized trials and meta-analyses have demonstrated PEA's effectiveness in reducing pain severity arising from diverse pain phenotypes. Intravenous clonidine has been used in terminally ill patients with poorly controlled symptoms, in particular pain and agitation.

​​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.

A.L.S. stole his voice. A.I. retrieved it. DNYUZ, originally posted in The New York Times; 8/15/24Four years ago, Casey Harrell sang his last bedtime nursery rhyme to his daughter. By then, A.L.S. had begun laying waste to Mr. Harrell’s muscles, stealing from him one ritual after another: going on walks with his wife, holding his daughter, turning the pages of a book. “Like a night burglar,” his wife, Levana Saxon, wrote of the disease in a poem. ... Last July, doctors at the University of California, Davis, surgically implanted electrodes in Mr. Harrell’s brain to try to discern what he was trying to say. ... Yet the results surpassed expectations, the researchers reported on Wednesday in The New England Journal of Medicine, setting a new bar for implanted speech decoders and illustrating the potential power of such devices for people with speech impairments.

Physical, emotional, and practical symptom burden in patients with terminal illnessesAnnals of Palliative Medicine; by Charles B. Simone II; 7/24End of life care can best be optimized by understanding the scope of symptom burden that patients face with end-stage diseases. As this symptom burden differs for different terminal conditions—from cancer to heart disease to neurological or kidney or pulmonary diseases, for example—it is critical to understand the symptoms and overall holistic effects that each diseases places on patients. The Integrated Palliative care Outcome Scale (IPOS) is a widely used and validated patient-reported tool consisting of 17 items (10 measuring physical symptoms, 4 measuring emotional symptoms, and 3 measuring communication/practical issues) rated on a 5-point Likert scale. Fordjour and colleagues (1) identified some important differences across terminal conditions ... Finally, this study identified groups at higher risk of suffering from a greater symptom burden, including older patients, female patients, married or cohabitating patients, and patients who live alone, thus providing healthcare providers with information from which they can prioritize resources for these patient populations.

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. ...

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.

ETC model is failing to boost home dialysis utilization, nephrologists say McKnights Home Care; by Adam Healy; 8/9/24 Nephrologists are worried that the End-Stage Renal Disease Treatment Choices (ETC) model has not made good on its promise to promote home-based kidney care and advance health equity. The Centers for Medicare & Medicaid Services launched the ETC model in 2021, randomly selecting about 30% of providers treating end-stage renal disease for participation. The model uses financial incentives to encourage greater use of home dialysis treatment and increase kidney transplant access. However, these incentives have not been effective in producing their intended results, according to Amit Kapoor, MD, the chief nephrologist at Strive Health. ... A March study published in JAMA found that the ETC model may unintentionally punish providers who serve high-needs, low-income or minority patients.