Mixed-Methods Study of End-of-Life Experiences of Patients With Hematologic Malignancies in Social Hospice Residential Home Care Settings.

PURPOSE: Hospice is underutilized by patients with hematologic malignancies (HM), and when patients are referred, they are typically more ill, hospitalized, and with shorter length of stay (LOS) than patients with solid tumors (ST), limiting research about home hospice care experiences of patients with HM. In this mixed-methods study, we examined the hospice experiences of patients with HM who died at residential care homes (RCHs), home-based settings in which volunteer caregivers and hospice staff provide end-of-life (EOL) care under the social hospice model. METHODS: We queried a registry of 535 hospice patients who died at RCHs between 2005 and 2020 that included quantitative medication administration data as well as qualitative data from hospice intake forms and written volunteer caregiver narratives. Qualitative data were analyzed by collective case study methodology. Quantitative comparisons of LOS and liquid morphine use were performed with matched patients with ST. RESULTS: The registry yielded 29 patients with HM, of whom qualitative data were available for 18 patients. Patients with HM exhibited common EOL symptoms (pain, dyspnea, and agitation). Instances of bleeding were low (22%), and notable HM-specific care concerns were described regarding bone fractures, skin integrity, and delirium. Most (78%) experienced good symptom management and peaceful or comfortable deaths. In only one case were symptoms described as severe and poorly managed. Patients with HM had comparable LOS on hospice and at the RCHs to patients with ST, with no group differences in liquid morphine use. CONCLUSION: In this registry cohort, most patients with HM achieved good symptom management in home care settings with volunteer caregivers and hospice support. Caregivers may require additional counseling and palliative medications for HM-specific EOL symptoms.

Social Model Hospice Residential Care Homes: Whom Do They Really Serve?

BACKGROUND: Most prefer to die at home, but the Medicare Hospice Benefit does not cover custodial care, making it difficult for terminally ill patients with housing insecurity and/or caregiver instability to access hospice care at home. OBJECTIVES: To examine the characteristics of patients who received end-of-life care in community-run, residential care homes (RCHs) operating under the social model hospice. METHODS: A retrospective chart review of 500 residents who were admitted to one of three RCHs in Upstate New York over a 15-year period (2004-2019). RESULTS: Patients served by the RCHs included 318 (63.6%) women and 182 (36.4%) men aged 34-101 (M = 77.8). The majority (94.9%) were Caucasian and most had cancer diagnoses (71.6%). Prior to admission, most (93%) patients resided in a private residence, and nearly half (47%) lived alone, but most (81.7%) had full- or part-time caregivers. Nearly all patients were admitted either directly from a hospital (47.5%) or private home (47.2%). Over half (52%) were admitted to RCHs within a month of hospice enrollment, and 20.1% enrolled concurrent with admission. While the average length of stay was 21 days, 50% died within 10 days of admission. CONCLUSIONS: Community-run RCHs represent a unique approach for improving access to hospice home care for patients with home insecurity and/or caregiver instability, yet most patients had prior caregiver coverage and were admitted from a hospital or home setting, suggesting there is a need for community care settings for patients unable to remain at home in the final weeks or days prior to death.

Engaging Future Healthcare Professionals as Caregivers to Hospice Patients in Comfort Care Homes.

Most people wish to die at home yet significant barriers exist in accessing care in one's home, especially for individuals with caregiver and/or housing instability. Across the U.S., residential homes for the dying are opening to address gaps in end-of-life care by recruiting community members to serve as caregivers to hospice patients during their final days. This paper describes a blended-experiential training program, informed by both an evidence-based educational framework and transformative learning theory, that trains undergraduate students to serve as surrogate family members to hospice patients in residential care homes. This study analyzed data from a sample of undergraduate students (n = 35) who participated in an 8-week program. Applying Kirkpatrick's evaluation model, study results indicate the program provided essential knowledge and skills in end-of-life care, benefiting both student learning outcomes and resident care.

Antidepressant Use During Hospice Patients' Final Months on Routine Home Care.

Background: Antidepressants can be used to manage symptoms at the end of life, but the dying process can impact their use. Objectives: To examine the use of antidepressants during hospice patients' final months of home care. Methods: A retrospective case records review of 227 hospice patients in their last three months of care in a residential setting. Chart reviews were conducted of medication logs, hospice staff notes, and caregiver narratives to examine antidepressant use including types of medications prescribed and factors associated with medication maintenance. Results: Thirty percent of patients were prescribed at least 1 antidepressant for symptoms including depression, anxiety, pain, disturbances in sleep, and poor appetite. The majority (96.1%) of patients were not administered their antidepressant on the day of death, and more than half (61.8%) did not receive their antidepressant during their last 3 days of life. A quarter (25.5%) of patients on antidepressants did not receive medication 4-7 days prior to death while some (12.7%) went without their antidepressant for 8 or more days. Antidepressant use was discontinued by hospice staff or caregivers due to a variety of reasons including difficulty swallowing, minimal consciousness, confusion, nausea, or patient refusal. Conclusions: Antidepressants are prescribed to manage multiple symptoms at the end of life, but use is often disrupted during patients' final days. Tapering and other prescription adjustments may be warranted to avoid risk of antidepressant discontinuation syndrome (ADS).

Informal Caregivers' Administration of Concentrated Liquid Morphine to Hospice Patients Receiving Home Care: Does Regimen Matter?

Background: Hospice patients receiving care at home rely on caregivers to manage liquid morphine for pain and dyspnea during the dying process. Medication is prescribed under varying regimens, yet caregivers are not required to record when morphine is used. Therefore, it is not known whether morphine use varies by regimen for hospice patients dying at home. Design and methods: A retrospective review of medication records from 227 deceased hospice patients who received routine home care in a residential setting in the U.S. Concentrated liquid morphine doses prescribed by hospice and doses administered by caregivers were calculated 7 days prior to death and on the day of death. Percent of maximum dose prescribed was determined by regimen type (scheduled, pro re nata, or combination) and by prescription flexibility (varied vs set doses/times). Results: Morphine was prescribed to 60.4% of patients a week prior to death and to 86.8% of patients on the day they died. Doses prescribed and percent morphine administered increased over the last week (P < .05), but percent of morphine administered was low 1 week prior to death (23.40%) and on the day of death (30.68%). On patients' day of death, nearly half (48.6%) of prescriptions included flexibility, and administration rates were lower (P < .01) with flexible prescriptions (21.84%) than with structured regimens (39.52%). Conclusion: Morphine was frequently prescribed in the last week of life, but administration rates by caregivers were low, especially with less structured regimens. Caregivers may need more guidance regarding morphine's use at home, especially with more flexible regimens.

Comfort Care Homes: Pressures and Protocols in End-of-Life Care During the COVID-19 Pandemic.

Comfort care homes are community-run, residential homes that provide end-of-life care to terminally ill individuals who lack safe, secure housing and a reliable caregiver system. As nonprofit, non-medical facilities, these homes have faced both new and magnified challenges due to the COVID-19 pandemic. This article highlights the value of collaborative interagency partnerships and shares reflections on the unique pandemic pressures faced by comfort care homes. Innovative ideas for improving community-based end-of-life care and implications for social work practice are included.

Informal Caregivers' Administration of Hospice Prescribed Lorazepam to Homecare Patients With Anxiety.

BACKGROUND: A growing number of informal caregivers (IFCs) manage hospice patients' anxiety by administering lorazepam (Ativan), yet little is known about prescribing practices in home care or the extent to which IFCs carry out regimens. DESIGN AND METHODS: Data on hospice prescribed lorazepam was determined through a retrospective review of medication records from 216 deceased patients. The dose of lorazepam and type of regimen (i.e., scheduled, PRN, combination) as well as frequency with which it was administered by IFCs was calculated upon admission to a residential care home and on patients' day of death. RESULTS: The majority (63.1%) of patients were prescribed lorazepam on admission to the home, and more (79.5%) were prescribed lorazepam on the day of death. While higher doses of lorazepam were prescribed and administered on the day of death, the percentage of medication consumed was low on admission (17%) and day of death (27%). Nearly all (92.8%) prescribed lorazepam on the day of death were allowed PRN medication. For PRN only regimens, less than a quarter (24.4%) of patients were given lorazepam on admission with less than half (40.4%) given it while dying. Highest lorazepam administration rates (91.2%) occurred on the day of death when lorazepam was prescribed under a combined regimen. CONCLUSION: The high frequency of PRN regimens reveal that IFCs are frequently tasked with making decisions about if and when to administer lorazepam. Low overall lorazepam administration suggests a closer monitoring of lorazepam use and enhanced support of IFCs may be needed.

Providing End-of-Life Care: Increased Empathy and Self-efficacy Among Student Caregivers in Residential Homes for the Dying.

BACKGROUND: Health-care providers report a lack of training in end-of-life care and limited opportunities exist to learn about the dying process in home settings where most prefer to die. AIM: To evaluate the effectiveness of a Community Action, Research, and Education (CARE) program designed to promote empathy and self-efficacy communicating with and caring for terminally ill patients. METHODS: This mixed-methods study collected pre-post data from 18 undergraduates (7 men≤ 11 women) in a 8-week immersive program where they served as primary caregivers in residential homes for the dying providing 200 hours of bedside care to hospice patients during their final days. Quantitative measures assessed empathy using the Jefferson Scale of Empathy-Health Professions (JSE-HPS) version and self-efficacy using a 20-question palliative care skill assessment. Qualitative analyses were conducted on reflective journals to further assess knowledge, skill, and value development. RESULTS: Paired t tests revealed significant increases in empathy ( P < .05) and self-efficacy ( P < .001) to provide end-of-life care. Thematic analysis of reflective journals further demonstrated specific instances of empathy and self-efficacy. CONCLUSIONS: Community-run residential homes for the dying offer a unique opportunity for skills training in end-of-life care. The opportunity to serve as a caregiver for the dying improved students' confidence and ability to provide empathic patient- and family-centered end-of-life care to hospice patients in their final days.

First-Year Analysis of a New, Home-Based Palliative Care Program Offered Jointly by a Community Hospital and Local Visiting Nurse Service.

BACKGROUND: There is a growing need for home-based palliative care services, especially for seriously ill individuals who want to avoid hospitalizations and remain with their regular outside care providers. AIM: To evaluate the effectiveness of Care Choices, a new in-home palliative care program provided by the Visiting Nurse Services of Northeastern New York and Ellis Medicine's community hospital serving New York's Capital District. METHODS: This prospective cohort study assessed patient outcomes over the course of 1 year for 123 patients (49 men and 74 women) with serious illnesses who were new enrollees in the program. Quality of life was assessed at baseline and after 1 month on service. Satisfaction with care was measured after 1 and 3 months on service. The number of emergency department visits and inpatient hospitalizations pre- and postenrollment was measured for all enrollees. RESULTS: Patients were highly satisfied (72.7%-100%) with their initial care and reported greater satisfaction ( P < .05) and stable symptom management over time. Fewer emergency department ( P < .001) and inpatient hospital admissions ( P < .001) occurred among enrollees while on the palliative care service. CONCLUSION: An in-home palliative care program offered jointly through a visiting nurse service and community hospital may be a successful model for providing quality care that satisfies chronically ill patients' desire to remain at home and avoid hospital admissions.

The influence of experimenter gender and race on pain reporting: does racial or gender concordance matter?

BACKGROUND: Research on disparities in the treatment of pain has shown that minorities receive less aggressive pain management than non-minorities. While reasons include physician bias, the focus of this study was to examine whether differences in pain reporting behavior might occur when pain is reported to individuals of a different race or gender. OBJECTIVE: To test whether gender and racial concordance might influence pain reporting and pain behavior in a laboratory setting. DESIGN/SETTING: By using a two (subject race)-by-two (subject gender)-by-two (experimenter race)-by two (experimenter gender) quasi-experimental design, pain was assessed in a laboratory through a standard cold pressor task administered by someone whose gender and/or race was similar or dissimilar. SUBJECTS: Subjects were 343 (156 men; 187 women) undergraduates whose ages ranged from 17 to 43 years (mean 20.27 years). OUTCOME MEASURES: Pain tolerance was assessed by total immersion time in the ice bath. Pain ratings were obtained by using Gracely scales, which rate the intensity and unpleasantness of the task. RESULTS: Total immersion time was shorter for both blacks and women, and both blacks and women reported higher pain intensity and unpleasantness. Racial and gender concordance did not influence pain reporting or pain tolerance, but interactions between subject race and experimenter gender, as well as subject gender and experimenter race, were revealed. CONCLUSIONS: Racial and gender concordance did not influence pain reporting; however, pain reporting was influenced by interactions between gender and race in the subject-experimenter dyads.

The influence of gender and race on physicians' pain management decisions.

This study set out to examine whether gender or race influences physicians' pain management decisions in a national sample of 712 (414 men, 272 women) practicing physicians. Medical vignettes were used to vary patient gender and race experimentally while holding symptom presentation constant. Treatment decisions were assessed by calculating maximum permitted doses of narcotic analgesic (hydrocodone) prescribed for initial pain treatment and for follow-up care. No overall differences by patient gender or race were found in decisions to treat or in maximum permitted doses. However, for persistent back pain, female physicians prescribed lower doses of hydrocodone, especially to male patients. For renal colic, lower doses were prescribed to black versus white patients when the patient was female, whereas the reverse was true when patients were male. These findings challenge a fairly extensive literature suggesting that physicians treat women and minorities less aggressively for their pain, and results offer further evidence that pain treatment decisions are influenced physician gender.