Literature Review

Two Illinois hospices expand to new countiesHospice News; by Jim Parker; 8/29/24Two Illinois-headquartered hospice operators have stretched their footprints into additional counties. Transitions Care has expanded its service region to include the Rock Island community in its home state... Meanwhile, Unity Hospice has also moved into two additional counties in the Land of Lincoln, effective Sept. 1.Notable mentions: Trish Benson, CEO of Transitions Care; Alisa Gerke, Executive Director of Unity Hospice

Matters of life and death: Our health (and lack thereof) is worth talking aboutPsychology Today; by Samantha Stein; 8/29/24In his book Being Mortal, Dr. Atul Gawande, a practicing surgeon, discusses how having the hard conversations about end-of-life medical interventions (or not) may lead to a shorter life but a more fulfilling one. In his book Telltale Hearts, Dr. Dean-David Schillinger, a physician and public health advocate, discusses how accurate diagnosis, treatment, and true healing come from listening deeply to patients and their stories. Medical advances in the past century have been astounding. We live significantly longer and are able to survive repeated health crises that once would have killed us. Nearly everyone would agree that in many, if not most, cases that’s a positive thing. However, many would argue that our hyperfocus on prolonging life at all costs, along with our tendency to treat symptoms rather than looking for underlying causes, has caused us to lose sight of the importance of quality of life and true health.

The way I see it, if you want the rainbow, you gotta put up with the rain. ~Dolly Parton

Incorporating patient values in large language model recommendations for surrogate and proxy decisionsCritical Care Explorations; Victoria J Nolan, Jeremy A Balch, Naveen P Baskaran, Benjamin Shickel, Philip A Efron, Gilbert R Upchurch Jr, Azra Bihorac, Christopher J Tignanelli, Ray E Moseley, Tyler J Loftus; 8/24Surrogates, proxies, and clinicians making shared treatment decisions for patients who have lost decision-making capacity often fail to honor patients' wishes, due to stress, time pressures, misunderstanding patient values, and projecting personal biases. Advance directives intend to align care with patient values but are limited by low completion rates and application to only a subset of medical decisions. [Likert] scores were highest when patient values were captured as short, unstructured, and free-text narratives based on simulated patient profiles. This proof-of-concept study demonstrates the potential for LLMs [large language models] to function as support tools for surrogates, proxies, and clinicians aiming to honor the wishes and values of decisionally incapacitated patients.

Palliative care for dialysis-dependent pediatric patients: A survey of providers, nurses, and caregiversKidney360; Joshua Lipsitz, Mark Stockton Beveridge, Katherine Maddox; 8/24Dialysis-dependent pediatric patients and their families face significant biopsychosocial burdens and low health-related quality of life. Palliative care consultations can alleviate some degree of suffering for patients and families but remain underutilized within pediatric nephrology. 90% of providers and all nurses desired more palliative care education. Of the 22% of caregivers whose child had already received palliative care services, all found the consultation to be helpful. These data support further palliative care education for pediatric nephrology providers and nurses and more robust and systematic involvement of subspecialty palliative care for dialysis-dependent pediatric patients.

"At least I can push this morphine": PICU nurses' approaches to suffering among dying childrenJournal of Pain and Symptom Management; Elizabeth G Broden, Ijeoma Julie Eche-Ugwu, Danielle D DeCourcey, Joanne Wolfe, Pamela S Hinds, Jennifer Snaman; 8/24Parents of children who die in the pediatric intensive care unit (PICU) carry memories of their child's suffering throughout a lifelong grieving experience. Given their prolonged time at the bedside, PICU nurses are poised to attend to dying children's suffering. While physical suffering may be remedied with direct nursing care, holistically attending to EOL suffering in the PICU requires both bolstering external processes and strengthening PICU nurses' internal resources. Improving psychosocial training and optimizing interprofessional care systems could better support dying children and their families. 

Long-term dementia risk in Parkinson DiseaseNeurology; Julia Gallagher, Caroline Gochanour, Chelsea Caspell-Garcia, Roseanne D Dobkin, Dag Aarsland, Roy N Alcalay, Matthew J Barrett, Lana Chahine, Alice S Chen-Plotkin, Christopher S Coffey, Nabila Dahodwala, Jamie L Eberling, Alberto J Espay, James B Leverenz, Irene Litvan, Eugenia Mamikonyan, James Morley, Irene H Richard, Liana Rosenthal, Andrew D Siderowf, Tatyana Simuni, Michele K York, Allison W Willis, Sharon X Xie, Daniel Weintraub, Parkinson's Progression Markers Initiative; 9/24It is widely cited that dementia occurs in up to 80% of patients with Parkinson disease (PD), but studies reporting such high rates were published over two decades ago, had relatively small samples, and had other limitations. We aimed to determine long-term dementia risk in PD using data from two large, ongoing, prospective, observational studies. Participants from the Parkinson's Progression Markers Initiative (PPMI), a multisite international study, and a long-standing PD research cohort at the University of Pennsylvania (Penn), a single site study at a tertiary movement disorders center, were recruited. Results from two large, prospective studies suggest that dementia in PD occurs less frequently, or later in the disease course, than previous research studies have reported.

Cancer research provides a model for advancing clinical trials in dementia in the era of disease-modifying Alzheimer's-type dementia therapiesAlzheimer's Research and Therapy; Gregory A Jicha, Thomas C Tucker, Susanne M Arnold, Peter T Nelson; 8/24Dementia and cancer are multifactorial, widely-feared, age-associated clinical syndromes that are increasing in prevalence. There have been major breakthroughs in clinical cancer research leading to some effective treatments, whereas the field of dementia has achieved comparatively limited success in clinical research. The lessons of cancer research may help those in the dementia research field in confronting some of the dilemmas faced when the clinical care regimen is not entirely safe or efficacious. There is also evidence from both cancer and dementia research that individuals enrolled in the placebo arms of clinical trials have unexpectedly good outcomes, indicating that participation in clinical trial can have medical benefits to enrollees.

Nursing Home Compare star ratings before versus after a change in nursing home ownershipJournal of the American Geriatrics Society; by Kira L Ryskina, Emily Tu, Junning Liang, Seiyoun Kim, Rachel M Werner; 7/24Nursing Home Compare ratings decreased slightly after a change in facility ownership, driven by lower staffing and health inspection ratings and mitigated somewhat by higher quality measure ratings. These conflicting trends underscore the need for transparency around changes in facility ownership and a better understanding of consequences of changes in ownership that are salient to patients and families.Publisher's note: This article might have interesting implications in the hospice field.

Begin, be bold and venture to be wise. ~ Horace

ASCO palliative care expert panel provides recommendations to integrate health equity into guideline development OncLive, Cranbury, NJ; by Kyle Doherty; 9/4/24 The ASCO Palliative Care Expert Panel [American Society of Clinical Oncology], in collaboration with ASCO’s Health Equity and Outcomes Committee, has published recommendations for integrating health equity measures into future guideline updates. Recommendations advocated for partnerships with increased representation from historically marginalized groups and patient and community-based advocates; a reinforcement of implicit bias training for Expert Panel members as a component of guideline preparation; stratified recommendations and/or guidelines for additional groups; and the review and appraisal of future recommendations by the Expert Panel, patient as well as community advocates, and ASCO reviewers for the inclusion of proper health equity measures before publication.

Humana to depart 13 Medicare Advantage markets Modern Healthcare; by Lauren Berryman; 9/4/24 Humana previewed its Medicare Advantage strategy for the coming plan year, including a decision to quit 13 counties where performance has been unsatisfactory, at the Wells Fargo Healthcare Conference on Wednesday. The Medicare Advantage heavyweight, which had 6.2 million members in those plans as of the second quarter, expects to lose a few hundred thousand enrollees in 2025 as it prioritizes profitable markets, Chief Financial Officer Susan Diamond told investors at the event in Everett, Massachusetts. In addition to leaving those 13 counties, Humana will offer fewer plans in some other areas, Diamond said. About 560,000 members will have to choose new policies for 2025, most of whom will have other Humana plans available to them, she said. ... Diamond did not specify what markets will be affected, but Humana will continue selling Medicare Advantage plans in every state. The company is committed to a presence in certain favorable regions, including south Florida, she said. 

Bay Bluffs opens hospice wing as end-of-life care models change Interlochen Public Radio; by Michael Livingston; 9/4/24 Three new beds for hospice care opened in Harbor Springs today marking the end of a year-long pivot for an end-of-life care organization in the region. Last year, McLaren Health System closed hospice facilities in Petoskey and Cheboygan. Combined, the facilities provided more than a dozen beds for hospice in the region. At the time, McLaren called the decision to close "difficult" but necessary due to staffing constraints and said it would move to prioritizing outpatient hospice care - when a nurse visits patients in the home rather than a facility. But a group of advocates in Petoskey said residential hospice is needed in the region - especially for people with serious terminal illnesses. David McBride leads the newly renamed group, Friends of Hospice of Little Traverse Bay. It used to be called the Friends of Hiland Cottage for the facility in Petoskey. ... That’s what led to a partnership with skilled nursing facility Bay Bluffs in Harbor Springs. It’s the Emmet County Medical Care Facility and owned by the county health department. Bay Bluffs is not a licensed hospice provider but it is able to outsource hospice from other companies while providing rooms for families to gather with their loved ones and trained nursing. This newer model of end-of-life care is a growing trend and has been tried in other places such as Arbor Hospice in Ann Arbor which closed its residential facility in 2022.