Evaluation of a Novel Hospice-Specific Patient Decision Aid.

Background: We tested a novel hospice-specific patient decision aid to determine whether the decision aid could improve hospice knowledge, opinions of hospice, and decision self-efficacy in making decisions about hospice. Methods: Two patient-level randomized studies were conducted using two different cohorts. Recruitment was completed from March 2019 through May 2020. Cohort #1 was recruited from an academic hospital and a safety-net hospital and Cohort #2 was recruited from community members. Participants were randomized to review a hospice-specific patient decision aid. The primary outcomes were change in hospice knowledge, hospice beliefs and attitudes, and decision self-efficacy Wilcoxon signed rank tests were used to evaluate differences on the primary outcomes between baseline and 1-month. Participants: Participants were at least 65 years of age. A total of 266 participants enrolled (131 in Cohort #1 and 135 in Cohort #2). Participants were randomized to the intervention group (n = 156) or control group (n = 109). The sample was 74% (n = 197) female, 58% (n = 156) African American and mean age was 74.9. Results: Improvements in hospice knowledge between baseline and 1-month were observed in both the intervention and the control groups with no differences between groups (.43 vs .275 points, P = .823). There were no observed differences between groups on Hospice Beliefs and Attitudes scale (3.29 vs 3.08, P = .076). In contrast, Decision Self-Efficacy improved in both groups and the effect of the intervention was significant (8.04 vs 2.90, P = -.027). Conclusions: The intervention demonstrated significant improvements in decision self-efficacy but not in hospice knowledge or hospice beliefs and attitudes.

A Life-Affirming Palliative Care Model for Severe and Enduring Anorexia Nervosa.

Some individuals with severe and enduring anorexia nervosa experience dramatically degraded quality of life in the face of refractory illness and compulsory treatment. We propose a palliative care (PC) model for this group of patients that aims to support their unique goals of care, improve social-professional function, reduce physical suffering, and honor the whole person. Far from representing a pre-hospice model, a PC model for those with severe and enduring anorexia nervosa instead provides an alternative to current practices in hopes of meaningfully improving quality of life and outcomes.

Medical Aid in Dying: Ethical and Practical Issues.

At JADPRO Live 2022, Jonathan Treem, MD, of the University of Colorado Palliative Care, explained medical aid in dying in order to prepare advanced practitioners to feel confident to counsel a patient who inquiries about aid in dying. He explained the law and protocol for participation, the history, ethics, and data behind the intervention, and steps for what is required. Finally, Dr. Treem discussed ethical considerations that may arise as patients and clinicians consider these types of interventions.

Regardless of inequities in care, terminal anorexia nervosa exists: a response to Sharpe et al.

We are pleased that the concept of terminal anorexia nervosa is being considered in serious discussion. Our previous presentations were not intended to assess eating disorders care broadly, but solely to bring attention to the importance of end-of-life care issues for patients with anorexia nervosa. Regardless of differences in ability to access or utilize health care resources, inescapably, individuals contending with end-stage malnutrition due to anorexia nervosa who refuse further nutrition will progressively decline, and some will die as a result. Our description of these patients' last days and weeks as "terminal" and meriting thoughtful end-of-life care is consistent with how the term is used in other end-stage terminal conditions. We clearly acknowledged that precise definitions and guidelines for end-of-life care for these patients should be developed by the eating disorder and palliative care fields. Avoiding the phrase "terminal anorexia nervosa" will not make these phenomena disappear. We are sorry that some individuals are upset by this concept. Our intention is certainly not to demoralize by "triggering" fears of hopelessness or death. But these discussions will inevitably distress some people. Individuals who are adversely affected by considering these issues might well benefit from further explorations, clarifications, and discussions with their clinicians and others. Finally, we clearly applaud expanding treatment options and availability, and we strongly advocate for making every effort to provide every patient every possible option for treatment and recovery at every phase of their struggles.

Eating disorders and palliative care specialists require definitional consensus and clinical guidance regarding terminal anorexia nervosa: addressing concerns and moving forward.

BACKGROUND AND OBJECTIVES: Premature deaths are estimated to occur in 5-20% of patients with anorexia nervosa (AN). Among them, some patients with severe and enduring anorexia nervosa (SE-AN) will die due to the medical complications of malnutrition or to suicide. Almost no literature provides guidance to patients, clinicians, and loved ones regarding clinical characteristics of those with SE-AN who recognize and accept the fact that they will not be able to survive their disease. Consistent with general medical literature on terminal illness and based on the authors' work with patients at this phase of life, we previously described four clinical characteristics of the small group of SE-AN patients who may be considered to have a terminal eating disorder. Following publication of this article, several opinions objecting to these formulations were published. The goals of this article are to respond to the key themes of concern posed by these objections, to extend our discussion of the palliative care and associated needs of these patients and their families, and to suggest ways in which the eating disorder and palliative care fields might develop more definitive criteria and consensus guidelines for the assessment and management of these patients. METHODS: Based on a selective narrative review of the literature, our combined experiences with these patients, and clinical reasoning, we address critiques grouped around five major themes: that (1) labels such as terminal AN are dangerous; (2) since AN is a treatable disorder, no SE-AN patients should be considered terminal; (3) a terminal psychiatric condition cannot be defined; (4) the proposed definition is not specific enough; and (5) considerations regarding mental capacity in the proposed criteria do not sufficiently account for the psycho-cognitive impairments in AN. RESULTS: Our analysis responds to the critiques of our original proposed clinical characteristics of those with terminal AN. While refuting many of these critiques, we also appreciate the opportunity to refine our discussion of this complex topic and identify that there are multiple stages of SE-AN that can result in good clinical outcomes. Only when all of these have failed to provide adequate amelioration of suffering do a low number of patients progress to terminal AN. CONCLUSIONS: By further refining our discussion of terminal AN, we aim to encourage eating disorders and palliative care specialists to develop expert consensus definitions for terminal AN and to generate authoritative clinical guidance for management of this population. By validating terminal AN as a distinct condition, patients with this subcategory of SE-AN, their families, and their caregivers facing end-of-life concerns may be better able to access palliative and hospice care and related services to help improve their overall experiences at this phase of life.

Pure-tone auditory thresholds are not chronically elevated in multiple sclerosis.

Despite the fact that acute cases of multiple sclerosis (MS)-related pure-tone hearing loss have been reported in the literature, consensus is lacking as to the chronic influences of MS on pure-tone thresholds. Most studies examining such influences have been limited by small sample sizes, lack of statistical comparisons between patients and controls, and confounding of the hearing measure with influences from sex and age. To date, associations between pure-tone thresholds and central MS-related brain lesions have not been assessed. In this study, pure-tone thresholds ranging from 0.5 to 8 kHz were measured in 73 MS patients and 73 individually age- and gender-matched normal controls. In 63 MS patients, correlations were computed between the threshold values and MRI-determined lesion activity in 26 central brain regions. Although thresholds were strongly influenced by sex, age, and tonal frequency, no meaningful influences of MS were discerned. Moreover, no significant association between the threshold values and central MS-related lesion activity was evident in any brain region evaluated. This study, the largest on this topic to use carefully matched control subjects and the sole study to assess relationships between auditory thresholds and central MS-related lesions, strongly suggests that (a) MS is not chronically associated with pure-tone hearing loss and (b) pure-tone thresholds are unrelated to MS lesion activity in higher brain regions. These findings, along with general reports from the literature, support the concept that when MS-related hearing threshold deficits are found, they are episodic and primarily dependent on lesions within the eighth nerve or brainstem.

A double-blind study of the influences of eszopiclone on dysgeusia and taste function.

Taste disturbance is a common, but poorly understood, side effect of a large number of medications. This double-blind study examined the frequency, intensity, and quality of taste disturbances related to the widely used hypnotic sleep aid eszopiclone (ESZ; Lunesta, as well as their associations with age, sex, body mass index (BMI), time of day, phenyl thiocarbamide (PTC) taste sensitivity, and ESZ saliva and blood levels. Sixty six percent of 24 female subjects and 53% of 15 male subjects reported dysgeusic sensations, mostly bitter/metallic, during the drug administration (respective placebo figures 17% and 7%). No meaningful relationships were found between the frequency or the intensity of the sensations and age, BMI, or PTC taste sensitivity. Dysgeusia was more intense and longer lasting in women than in men, stronger in the morning than in the evening, and positively correlated with drug plasma and saliva levels. In women, intensity ratings decreased across treatment days. Taste test measures were marginally, at best, influenced by ESZ. This study demonstrates, for the first time, that the dysgeusia associated with ESZ is systemically influenced by a number of factors, including sex, time since drug administration, and both blood and saliva levels of the drug.