American Journal of Hospice and Palliative Medicine®

Experts in the field of palliative care in the United States (U.S.) have defined competence, or “good,” mainly for programs, trainees, or providers of primary palliative care. Our interprofessional workgroup of palliative care specialists proposes that setting a standard for clinical excellence, or “great,” applicable to palliative care specialists of all professions will elevate the field in the U.S. by providing an aspirational target usable for individual assessment and self-assessment, highlighting the common ground between team roles, and promoting a deeper understanding of teamwork, utilization, and productivity. We call for research that utilizes inclusive methods and broad representation of diverse voices to design a vivid, practical, and evidence-based definition of clinical excellence for palliative care specialists.

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.

Background: As the population is aging and medical advancements enable people to live longer, advance care planning (ACP) becomes increasingly important in guiding future care decisions; however, they are often incomplete or absent from the patient chart. This study describes the development and implementation of an ACP policy in a post-acute care and long-term care setting using a systematic implementation framework. Methods: A process evaluation that parallels the Replicating Effective Programs (REP) framework was used to understand stakeholder experiences with ACP and identify gaps in practice. Physicians, multidisciplinary staff, patients, and substitute decision makers engaged in focus groups and interviews, and completed surveys. A retrospective chart review determined Plan for Life Sustaining Treatment (PLST) form completion rates. Results: Stakeholder feedback identified barriers and facilitators to ACP including a need for staff training, user-friendly resources, and standardization of ACP practice. The PLST form was developed and embedded in the electronic medical record, and had a 92% and an 87% PLST completion rate on 2 pilot units. Conclusion: The study showed the usefulness of the REP model in guiding the evaluation as an effective tool to enhance implementation practices and inform ACP policy development that can be replicated in other organizations.

Statement of Problem: A discrepancy exists between where people would like to die and what actually occurs. More research about the factors influencing the location of death is required. Sources of Data and Research Design: Multinomial logistic regression was used to examine a sample taken from the fourth round of data collection performed by the National Health and Aging Trends Study conducted in 2014. Conclusions Reached: Census location, age, dementia, and use of hospice were found to have a statistically significant (P < .05) influence on the location of death (P = .000). The results suggest that the use of hospice increased the odds of dying at home (OR = 17.467, CI = 7.43–41.063) and in a nursing home (OR = 34.334, CI = 12.444–94.727) as compared to dying in the hospital. Further research is required on the topic of geographic location and place of death.

Context: Given that the composition of hospice patients’ terminal diagnoses has become increasingly diverse, understanding whether hospices provide quality care to patients, regardless of disease, is important. However, data comparing diagnosis and caregiver-reported outcomes remain scarce. Objectives: To analyze the association between the composition of patients’ terminal diagnoses and caregiver-reported quality measures. Methods: Using cross-sectional, publicly available data from the Centers for Medicare & Medicare Services (CMS), we analyzed data collected from 2015–2019. We conducted general linear model analyses to identify associations between hospice characteristics/practices and caregiver-reported outcomes. Results: Of the 2810 hospices, those that cared for a greater percentage of dementia patients had fewer caregivers, on average, who rated hospice a 9 or 10 (where 0 = low, 10 = high; β = −.094; 95% CI = −.147, −.038), reported they always received help for pain and symptoms (β = −.106, CI = −.156, −.056), and reported definitely having received the training they needed (β = −.151, CI = −.207, −.095). Those caring for more stroke patients had fewer caregivers, on average, who rated hospice a 9 or 10 (β = −.184, CI = .252, −.115), reported they always received help for pain and symptoms (β = −.188, CI = −.251, −.126), reported definitely having received the training they needed (β = −.254, CI = −.324, −.184), and reported that the hospice offered the right amount of emotional/spiritual support (β = −.056, CI = −.093, −.019). Conclusion: Hospices that cared for a greater proportion of dementia and stroke patients had poorer scores on caregiver-reported quality measures. These findings support efforts to identify mechanisms underlying these differences and to design strategies to ensure optimal outcomes for hospice patients regardless of diagnosis.

Background: Little is known regarding the fidelity of delivery of guideline-recommended components of palliative care in “real world” encounters. Objective: To develop a qualitative coding framework to identify components of clinical palliative care in clinical documentation across care settings. Design: Retrospective review of palliative care clinical documentation from medical providers, with directed qualitative content analysis to identify components of clinical care documented. Setting/Subjects: Purposively sampled deceased patients seen by palliative care at a US academic medical center between 7/1/2011–7/1/2018. Main Outcomes and Measures: The outcome of this work is a coding framework for use in future research. We assessed the robustness of the framework using Cohen’s kappa. Results: We reviewed sixty-two encounters from twenty-six patients. We identified 7 major themes in documentation: (1) addressing physical symptoms, (2) addressing psychological symptoms, (3) establishing illness understanding, (4) supporting decision making, (5) end-of-life planning, (6) understanding psychosocial context, and (7) care coordination. Interrater reliability varied widely between components, with Cohen’s kappa ranging from −.51 to 1. Conclusions: This pilot study provides a coding framework to measure documentation of clinical palliative care components. Several components could not be reliably identified using this framework, suggesting the need for additional measurement strategies.

Background: Implementation of concurrent hospice care led to a new hybrid payment model that combines hospice payments with payments for non-hospice medical care. Little is known about the cost implications of this new hybrid payment model. Objective: The purpose was to identify costs and compare concurrent care and standard hospice care costs by estimating the average incremental Medicaid cost of care over time. Methods: Using national Medicaid data of 18 147 hospice children and a multilevel generalized linear model, we calculated the incremental costs of receiving concurrent vs standard hospice care. We used the total cost of care over the last year of life. Increments for the analysis were hospice length of stay, stratified to 1 day, 2-14 days, and 15 + days. Results: Overall, compared to standard hospice care, enrollment in concurrent hospice care was significantly associated with an increase in outpatient care and prescription drug costs. For a stay of 1 day, concurrent hospice care decreased inpatient costs and increased costs of prescription drugs. For stays between 2 and 14 days, concurrent hospice decreased total costs and inpatient costs, but increased prescription drug costs. With a hospice stay of 15 + days, concurrent hospice had significantly higher costs across all measures, including total costs, inpatient costs, outpatient costs, and prescription drug costs. Conclusion: This study provides critical insight into incremental costs of receiving concurrent vs standard hospice care. More research is needed to understand how concurrent hospice lengthy hospice stays are associated with increases of costs.

Background: Interstitial lung disease (ILD) is associated with poor quality of life (QoL) and high symptom burden. Studies evaluating the benefits of palliative care examined mainly idiopathic pulmonary fibrosis (IPF) patients. We aim to examine the impact of palliative care on a broader group of fibrotic ILD patients. Methods: Single center retrospective cohort study comparing deceased ILD patients who received outpatient palliative care services (palliative-intervention group) against a usual care group. Results: Of 63 subjects, 26 (41%) were in the palliative-intervention group and 37 (59%) in the usual care group. Median time to palliative care referral was 8.6 (IQR .3–21.2) months. Dyspnea-related disability was greater in the palliative-intervention group [mMRC dyspnea score 3.5(IQR 2–4) vs 2(IQR 2–4), P = .039], with more patients requiring long term oxygen therapy (70% vs 30%, P < .001). There was no difference in the median number of hospitalizations or length of stay in the last 6 months of life. Patients in the palliative-intervention group had a higher uptake of advance care planning (ACP) (39% vs 11%, P = .014), lower frequency of intensive care unit (ICU) admissions (5% vs 19%, P = .102) and were prescribed more opioids (96% vs 27%, P < .001) and benzodiazepines (39% vs 14%, P = .022). The palliative-intervention group experienced a longer median survival of 23.9 months (95% confidence interval [CI] 14.1–33.7) compared to the usual group (11.4 months [95% CI 5.4–17.3] (log-rank test: P = .023). Male gender was a strong predictor of 1-year mortality. Conclusions: The palliative-intervention group received earlier pharmacologic intervention for symptom relief. Healthcare utilization was not increased despite greater dyspnea-related disability.

Persons living with Human immunodeficiency virus (HIV) are living longer, healthier lives due to advancements in antiretroviral therapies and access to lifelong treatment. Yet, in rural Appalachia, access to adequate medical care is complicated by factors such as geography and lack of access to resources. The purpose of this study was to explore the perceptions of advance care planning (ACP) needs of persons living with HIV (PLWH) in Appalachian Tennessee and Alabama. Using a qualitative-descriptive design, we analyzed patterns of responses to face-to-face, semi-structured interviews of 40 PLWH as part of a larger multi-site mixed method study. Data demonstrated high patient satisfaction with medical care and good relationships with providers. However, common themes arose surrounding stigma, inadequate finances, and dislike of the term “end-of-life.” Findings from this study fill a gap in the extant science pertaining to the focus of ACP in the unique population of rural Appalachia.

Background: Medicaid is the most common of health care benefits for children at end of life. Early and Periodic Screening, Diagnosis, and Treatment (EPSDT) presents a complex policy scenario for children enrolled in the Medicaid hospice benefit, and specifically concurrent hospice care. Objective: The study purpose was to identify policy guidance on EPSDT and pediatric hospice care from state Medicaid documents. Methods: We conducted a descriptive exploratory study, using state-level Medicaid hospice documents. Manuals, policy transmittals, provider memos, policy updates, and other related documents were searched from 50 states and the District of Columbia. We created a comprehensive data extraction tool that enabled us to identify EPSDT-specific information. The appraisal of the documents was conducted under 3 main a priori themes: definitions, function, and administration. Results: Eleven states included EPSDT in their hospice documentation. Definitions for concurrent care and palliative care were sparse and inconsistent. Four states defined medically necessary criterion. Several states did not integrate EPSDT into the hospice or concurrent care benefit, while EPSDT functioned as part of the Medicaid hospice benefit in 3 states and another 4 included it in their concurrent hospice care program. Among all the states, procedures for EPSDT program administration varied widely, including care coordination and payment. Conclusion: We found significant variation in state documents on EPSDT and pediatric hospice care. Clear guidelines and consistent standards regarding EPSDT services and how they interface with hospice, concurrent hospice care, and palliative care would improve care for children and families.

Purpose: There is limited data in the medical literature evaluating knowledge, attitudes, and skill in clinical medical ethics for clinicians or medical trainees. Our study aimed to evaluate baseline clinician knowledge, attitudes, and skills regarding clinical medical ethics and to implement and evaluate a curriculum designed with the intent to improve these measures. Method: Internal medicine residents, palliative fellows, medical and pre-medical students, social workers, advanced practice providers, and chaplains were surveyed at a large urban academic center to determine their baseline knowledge, attitudes, and skills regarding clinical medical ethics (64% response rate, n = 93/145). A one-hour discussion-based curriculum on clinical medical ethics topics was implemented, followed by another survey; χ2 and McNemar tests were used to compare pre- and post-surveys to evaluate the curriculum. Results: Baseline knowledge of all respondents (n = 93) in the four principles of bioethics (54%–89%), determining an alternate decision-maker (5%–50%), decision-making capacity (14%–71%), and in-hospital cardiac arrest survival (19%–77%) significantly increased (P < .0001) post-curriculum, as did baseline self-reported attitudes towards clinicians making medical recommendations to patients (27%–60%) and having had adequate education on code status discussions (42%–77%). Self-reported skills in determining an alternate decision-maker (40%–89%) and assessing decision-making capacity (40%–72%) also significantly increased post curriculum (P < .01 and P < .05). Conclusion: Implementation of a curriculum in medical ethics improved baseline knowledge, attitudes and self-reported skills of medical providers and trainees in clinical medical ethics.

Professional massages reduce symptoms experienced by cancer patients, but are costly. A cost-effective way to include this therapy routinely in hospice care is to teach family caregivers to give massages as part of their caregiving activities. However, the burden on caregivers is unknown and might offset patient benefits or cost savings. The pilot study aim was to explore feasibility issues related to licensed massage therapists training caregivers to give massages at home, the burden of giving four daily massages to hospice patients, and feedback about the training and massage delivery. In this pretest/posttest study, caregivers completed the Caregiver Reaction Assessment (CRA), received training on standardized massage techniques from a licensed massage therapist who evaluated their proficiency the following day. Caregivers gave daily massages for 3 days and afterward completed the CRA. Then a researcher interviewed the dyad for feedback about the training and massage delivery. We used paired t tests to evaluate CRA scores and content analysis of interview data. Thirty-nine caregivers (mean age = 46 years, 69% female) completed the study. After training, all but three caregivers provided daily massages. Some caregivers reported minor logistical challenges in massage delivery and documentation, mutual satisfaction, relaxation, and tender moments ranging from laughter and story sharing to closure activities. Mean CRA scores were not significantly different pretest to posttest. We conclude that repeated-dose massages by caregivers to patients dying of cancer is feasible and is worthy of further study to determine the benefits of massage therapy, caregiver and patient experiences, and caregiver burden.

The role of early Do Not Resuscitate (DNR) in hospitalized older adults (OAs) with SARS-CoV-2 infection is unknown. The objective of the study was to identify characteristics and outcomes associated with early DNR in hospitalized OAs with SARS-CoV-2. We conducted a retrospective chart review of older adults (65+) hospitalized with COVID-19 in New York, USA, between March 1, 2020, and April 20, 2020. Patient characteristics and hospital outcomes were collected. Early DNR (within 24 hours of admission) was compared to non-early DNR (late DNR, after 24 hours of admission, or no DNR). Outcomes included hospital morbidity and mortality. Of 4961 patients, early DNR prevalence was 5.7% (n = 283). Compared to non-early DNR, the early DNR group was older (85.0 vs 76.8, P < .001), women (51.2% vs 43.6%, P = .012), with higher comorbidity index (3.88 vs 3.36, P < .001), facility-based (49.1% vs 19.1%, P < .001), with dementia (13.3% vs 4.6%, P < .001), and severely ill on presentation (57.9% vs 32.3%, P < .001). In multivariable analyses, the early DNR group had higher mortality risk (OR: 2.94, 95% CI: 2.10–4.11), less hospital delirium (OR: 0.55, 95% CI: 0.40–.77), lower use of invasive mechanical ventilation (IMV, OR: 0.37, 95% CI: .21–.67), and shorter length of stay (LOS, 4.8 vs 10.3 days, P < .001), compared to non-early DNR. Regarding early vs late DNR, while there was no difference in mortality (OR: 1.12, 95% CI: 0.85–1.62), the early DNR group experienced less delirium (OR: 0.55, 95% CI: .40–.75), IMV (OR: 0.53, 95% CI: 0.29–.96), and shorter LOS (4.82 vs 10.63 days, OR: 0.35, 95% CI: 0.30–.41). In conclusion, early DNR prevalence in hospitalized OAs with COVID-19 was low, and compared to non-early DNR is associated with higher mortality but lower morbidity.

Tension, anxiety, or fear spread all over the world during COVID-19 pandemic. How health professionals provide terminally ill patients with humanistic care to deal with fear is worth consideration. A more abundant spirituality concern in the body-mind-spirit care mode on patients in hospice care is appied in our practice.