by editor | Dec 8, 2024 | Hospice Research Articles
Abstract
Objectives:
Published research in disparities in advance care planning, palliative, and end-of-life care is limited. However, available data points to significant barriers to palliative and end-of-life care among minority adults. The main objective of this scoping review was to summarize the current published research and literature on disparities in palliative and hospice care and completion of advance care planning and directives among non-Hispanc Blacks.
Methods:
The scoping review method was used because currently published research in disparities in palliative and hospice cares as well as advance care planning are limited. Nine electronic databases and websites were searched to identify English-language peer-reviewed publications published within last 20 years. A total of 147 studies that addressed palliative care, hospice care, and advance care planning and included non-Hispanic Blacks were incorporated in this study. The literature review include manuscripts that discuss the intersection of social determinants of health and end-of-life care for non-Hispanic Blacks. We examined the potential role and impact of several factors, including knowledge regarding palliative and hospice care; healthcare literacy; communication with providers and family; perceived or experienced discrimination with healthcare systems; mistrust in healthcare providers; health care coverage, religious-related activities and beliefs on palliative and hospice care utilization and completion of advance directives among non-Hispanic Blacks.
Discussion:
Cross-sectional and longitudinal national surveys, as well as local community- and clinic-based data, unequivocally point to major disparities in palliative and hospice care in the United States. Results suggest that national and community-based, multi-faceted, multi-disciplinary, theoretical-based, resourceful, culturally-sensitive interventions are urgently needed. A number of practical investigational interventions are offered. Additionally, we identify several research questions which need to be addressed in future research.
Keywords: palliative care, hospice care, advance care planning, advance directives, non-Hispanic blacks, disparity, mistrust, discrimination, religion and religiosity
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Link to Article: https://tinyurl.com/bd85zaf4
by editor | Dec 8, 2024 | Hospice Research Articles
Abstract
The Medicare hospice program is intended to provide palliative care to terminal patients, but
patients with long stays in hospice are highly profitable, motivating concerns about overuse
among the Alzheimer’s and Dementia (ADRD) population in the rapidly growing for-profit
sector. We provide the first causal estimates of the effect of for-profit hospice on patient spending
using the entry of for-profit hospices over twenty years. We find hospice has saved money for
Medicare by offsetting other expensive care among ADRD patients. As a result, policies limiting
hospice use including revenue caps and anti-fraud lawsuits are distortionary and deter cost-saving
admissions.
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Link to full Article: https://tinyurl.com/43ffsufm
by editor | Dec 8, 2024 | Hospice Research Articles
Abstract
The US hospice industry has shifted from not-for-profit to for-profit ownership models,1,2 producing concerns about care quality. For-profit hospices may have higher rates of live discharges3 and hospitalizations4 and worse caregiver-reported experiences.1 Recently, hospices have been acquired by private equity firms (PEFs) and publicly traded companies (PTCs).5 Although all for-profit ownership models are oriented toward profit maximization, PEF and PTC ownership structures are distinct in being incentivized to generate short-term and above-market returns for investors,5 raising questions about the potential influence of financial objectives on quality. We compared differences in caregiver-reported hospice quality across categories of ownership.
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Link to article: https://tinyurl.com/bdda96ej
by editor | Dec 8, 2024 | Hospice Research Articles
Abstract
Objective: The project aimed to standardize advanced care planning (ACP) at an internal medicine clinic by initiating physician-patient communication regarding the patient’s knowledge, understanding, and openness to pursuing advanced medical directives.
Methods: Data collection was conducted from February 1 to April 1, 2024, with the study concluding on April 24, 2024. ACP was facilitated through an initial standardized six-question pre-intervention survey in both English and Spanish. This pre-survey included questions on prior survey exposure within the past three months, current age, existing or previous medical conditions, possession of an advance directive (e.g., living will or durable power of attorney for healthcare), and interest in learning more about advanced medical directives. For patients interested in learning more, standardized educational materials from the National Institute on Aging were provided, along with a Texas out-of-hospital do-not-resuscitate (OOH-DNR) order, a Medical Power of Attorney form, and instructions in both English and Spanish. Post-education, patients completed a post-intervention survey asking if they had previously discussed advanced medical directives with a physician. The survey also included Likert scale questions about the discussion’s usefulness, comfort with end-of-life discussions, perceived importance of advanced directives, and likelihood of completing an advance directive.
Results: During the three months, 52 patients completed the pre-intervention survey, with an average age of 59 years. Hypertension, dyslipidemia, and diabetes were the most common conditions among participants. Statistical tests indicated no significant difference between patients’ age or number of comorbidities and possession of an advance directive (p > 0.05), nor was there a significant association between these variables and interest in learning more about advanced directives (p > 0.05). However, post-intervention survey results showed a significant correlation between age and prior discussions about advanced directives (p = 0.013) and between the number of comorbidities and having had past discussions (p = 0.025). Only 1.2% of patients reported having advanced directives before this study, highlighting a substantial gap in documentation.
Conclusion: This project revealed a notable gap in ACP documentation among patients at the internal medicine clinic, with very few patients having advanced directives prior to the intervention. While age and comorbidity count were not significantly associated with interest in advanced directives, older patients and those with more comorbidities were more likely to have had previous discussions. This underscores the need for targeted efforts to encourage ACP, particularly among younger patients and those with fewer medical conditions. Standardized educational resources effectively facilitated discussions, raising awareness and promoting engagement in ACP.
Discussion
This article describes a quality-improvement project in an academic internal medicine clinic that set out to standardize advance care planning (ACP) conversations with adult patients. Resident physicians used a brief, bilingual pre-visit survey (English/Spanish) to ask about prior exposure to ACP, whether patients already had documents (living will, medical power of attorney, out-of-hospital DNR), and whether they wanted more information.
Patients who were interested received standardized education from the National Institute on Aging plus printed Texas OOH-DNR and medical power of attorney forms with bilingual instructions; afterward they completed a short post-visit survey about the usefulness of the conversation, their comfort with end-of-life discussions, and their likelihood of completing directives.
Over three months, 52 patients (average age 59) completed the pre-survey; hypertension, dyslipidemia, and diabetes were the most common comorbidities. Baseline ACP documentation was extremely low. Only a handful of patients reported having any advance directive, and many were unsure. Age and number of comorbidities were not linked to who had completed directives or who was interested in learning more.
However, in the subgroup who completed post-surveys (n=23), older patients and those with more comorbidities were more likely to have had prior ACP conversations with a clinician. After the intervention, most patients said the discussion was helpful, strongly agreed that directives are important, and the vast majority reported that they now plan to complete advance directives in the future.
Takeaways for hospice agencies?
For hospice agencies, the message is clear: by the time people arrive on hospice, most still may not have had structured ACP or created documents, even if they live with serious chronic illness.
This study shows that short, scripted, bilingual conversations plus simple, printed forms can meaningfully move patients toward planning. This is something hospice agencies could adapt in their own admissions, routine visits, and community outreach.
Practical questions for hospice agencies to consider include: Do we assume referring clinics have “already done” ACP, or do we build it into our own workflows and track completion rates? Are we offering culturally and linguistically appropriate ACP materials like this clinic did? Could we partner with local primary-care practices to co-host ACP days, share standardized scripts, or co-branded NIA-based education? In our marketing, are we explicitly presenting hospice as part of a continuum that starts with good ACP in clinic, reassuring families that our role is to honor the choices they put in writing and to support them in having those hard conversations earlier, not only at the very end?
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Link to article: Improving Advanced Care Planning Discussions
