Literature Review

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.

Improving post-hospital care of older cancer patients Cancer Health; by University of Colorado Cancer Center and Greg Glasgow; 8/26/24 A few years ago, University of Colorado Cancer Center member and hospitalist Sarguni Singh, MD, began to notice a troubling trend: Older adults with cancer who were leaving the hospital for skilled nursing facilities after treatment were being readmitted to the hospital or having worse outcomes while in rehabilitation. ... Singh knew of an intervention called Assessing and Listening to Individual Goals and Needs (ALIGN) — a palliative care social worker-led protocol aimed at improving quality of life, aligning goals of care, and providing support to patients and caregivers — and she began using it for cancer care. ... The results were overwhelmingly positive, and patients and caregivers told us, ‘This was so helpful,’” says Singh, associate professor of hospital medicine in the CU School of Medicine.

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.

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.