Hospice Programs Research Articles

Development of Evaluation Indicators for Hospice and Palliative Care Professionals Training Programs in Korea.

The importance of training for Hospice and Palliative Care (HPC) professionals has been increasing with the systemization of HPC in Korea. Hence, the need and importance of training quality for HPC professionals are growing. This study evaluated the construct validity and reliability of the Evaluation Indicators for standard Hospice and Palliative Care Training (EIHPCT) program. As a framework to develop evaluation indicators, an invented theoretical model combining Stufflebeam's CIPP (Context-Input-Process-Product) evaluation model with PRECEDE-PROCEED model was used. To verify the construct validity of the EIHPCT program, a structured survey was performed with 169 professionals who were the HPC training program administrators, trainers, and trainees. To examine the validity of the areas of the EIHPCT program, exploratory factor analysis and confirmatory factor analysis were conducted. First, in the exploratory factor analysis, the indicators with factor loadings above 0.4 were chosen as desirable items, and some cross-loaded items that loaded at 0.4 or higher on two or more factors were adjusted as the higher factor. Second, the model fit of the modified EIHPCT program was quite good in the confirmatory factor analysis (Goodness-of-Fit Index > 0.70, Comparative Fit Index > 0.80, Normed Fit Index > 0.80, Root Mean square of Residuals < 0.05). The modified model of the EIHPCT comprised 4 areas, 13 subdomains, and 61 indicators. The evaluation indicators of the modified model will be valuable references for improving the HPC professional training program.

Caregiver–Patient Relationship Getting Its Due

Caregiver–Patient Relationship Getting Its Due

Shared Decision Making in Home Hospice Nursing Visits: A Qualitative Study

ContextShared decisions between health care providers and patients and families are replacing the traditional physician-driven plans of care. Hospice philosophy recognizes the patient and family as a unit of care and embraces their role in decision making. ObjectiveThe goal of this study was to evaluate the shared decisions between hospice nurses and patients and family members. MethodsA secondary analysis of audio recordings of 65 home hospice nurse visits from 65 home hospice nurse visits in 11 different U.S. hospice programs. ResultsTo varying degrees, hospice nurses used all the recommended elements of shared decision making during home visits with patients and families; however, not all elements were used in every visit. The most commonly used element was defining a problem, and the least used element was the assessment of patient and family understanding. ConclusionsHospice staff can benefit from a more purposeful shared decision-making process and a greater focus on assessment of patient and family understanding and ability to implement plans of care.

Risk Management for Opioid Prescribing in the Treatment of Patients With Pain From Cancer or Terminal Illness: Inadvertent Oversight or Taboo?

As the United States experiences an epidemic of prescription drug abuse, and guidelines on safe practices in prescribing opioids in chronic pain have subsequently emerged from professional organizations and governmental agencies, limited guidance exists for prescribers of opioids to treat pain in patients with cancer or terminal illness. Patients with active cancer or terminal illness often have pain and are frequently prescribed opioids and other controlled substances. Current studies suggest that patients with cancer have similar rates of risk for misuse, abuse, and addiction as the general public. Moreover, palliative care and hospice programs appear poorly prepared for assessing or managing patients with aberrant behaviors or evidence of drug abuse. Further research and professional consensus are needed to help address the challenges associated with misuse, abuse, and addiction in patients with cancer and terminal illness.

Listening behind closed doors: Shared decision making between hospice nurses and cancer patients and caregivers.

41 Background: The philosophy behind hospice care recognizes the patient and family as a unit of care and embraces their role in decision making. Research has primarily focused on physician and patient decision making yet, most decisions made at the end of life are between nurses, patients, and family members. The majority of hospice care is delivered in patient homes and little is known about these interactions. The goal of this study was to evaluate the shared decisions within the home environment between hospice nurses and patients/family. Methods: A secondary qualitative analysis of audio recordings of visits by 65 home hospice nurses to cancer patients in 11 hospice programs was conducted. Recordings were transcribed and coded by two team members using a pre-established nine element model of shared decision making. Elements of the model included: Defining a problem and options, discussing risks and benefits, focusing on how the options relate to patient values, the patient’s or family member’s ability to follow through, the provider’s recommendation, clarification of the understanding of options, and a follow-up plan. Results: Hospice nurses worked with families on an average of four problems in a mean visit time of 30 minutes. The hospice nurses used all the 9 recommended elements of shared decision making during home visits with patients and families however, not all elements were used in every visit. The most commonly used element was defining a problem, and the least used element was the assessment of patient and family understanding of options. Conclusions: Decision making for those enrolled in hospice occurs between nurses and patients/families. While ultimately responsible for the decisions that are made, physicians have limited interaction with the patient and family in their natural setting. Hospice nurses on the other hand, experience the impact of decisions in the environment in which they are implemented. Hospice nurses are the physician’s eyes and ears behind the closed doors of the home and can be valuable partners as they work with families on critical decisions several times each week.

A Positive Association Between Hospice Profit Margin And The Rate At Which Patients Are Discharged Before Death.

Hospice care is designed to support patients and families through the final phase of illness and death. Yet for more than a decade, hospices have steadily increased the rate at which they discharge patients before death-a practice known as "live discharge." Although certain live discharges are consistent with high-quality care, regulators have expressed concern that some hospices' desire to maximize profits drives them to inappropriately discharge patients. We used Medicare claims data for 2012-13 and cost reports for 2011-13 to explore relationships between hospice-level financial margins and live discharge rates among freestanding hospices. Adjusted analyses showed positive and significant associations between both operating and total margins and hospice-level rates of live discharge: One-unit increases in operating and total margin were associated with increases of 3percent and 4percent in expected hospice-level live discharge rates, respectively. These findings suggest that additional research is needed to explore links between profitability and patient-centeredness in the Medicare hospice program.

Hospice Visit Patterns in the Last Seven Days of Life and the Service Intensity Add-On Payment.

Hospice in-person visits in the last week of life are critical to ensure quality of care. In 2016, The Centers for Medicare & Medicaid Services (CMS) introduced a Service Intensity Add-on (SIA) payment for in-person routine home care (RHC) visits by a registered nurse or social worker in the last 7 days of life. The aim of the study was to examine visit patterns in the last week of life and provide SIA payment impact estimates. Hospice data from 42 volunteer hospice programs for the 6-year period of 2005-2010 were examined. The data included information on the type and duration of visits/other care, the staff discipline, and patient demographics, diagnoses, date of death, and care setting (home, assisted living, nursing home). In their last week of life, 251,407 decedents received 2,818,695 visits during 1,352,638 RHC days. Forty-four percent of the decedents had at least one SIA-eligible visit (in-person direct care visit by a registered nurse (RN) or social worker (SW)); 6.6% had only phone contact, and 30.4% had no hospice contact. Rates of RHC days with SIA-eligible days varied considerably across hospices (31% to 60.9%). For the 86.3% decedents with any SIA-eligible visits, average SIA payment would have been $202.5 (Median = $177.2, inter quartile range [IQR] = $108.3-$275.6), which represents a 21.6% increase over the average regular RHC payments received during the last week of life. The relative size of the new SIA payment introduced by CMS has the potential to increase RN/SW visits and reduce disparities in visit patterns in the last week of life.

Palliative Care for Advanced Heart Failure in a Department of Veterans Affairs Regional Hospice Program: Patient Selection, a Treatment Protocol, and Clinical Course.

Palliative care for advanced heart failure (HF) is generally recommended. However, few reports have focused on the particulars of treatment, or the clinical course of HF on a specific treatment regimen. Palliation adequate to allow patients to avoid HF admission and die at home. Patients from a veterans administration regional practice with multiple, recent hospital admissions were enrolled in community hospice programs. Treatment of HF with reduced left ventricular ejection fraction (HFrEF) included guidelines-directed medical therapy, digoxin, opioids, and oral bumetanide (with metolazone as needed) rather than intravenous diuretics. Levodopa (l-dopa) was added when conventional therapy failed to control symptoms. HF with preserved EF was also treated with bumetanide and opioids. Thirty male veterans, 23 of them with HFrEF, had 90 HF admissions in the 6 months before enrollment, and 3 HF admissions during follow-up of at least 14 months. Twenty-one patients died, 18 of them at home; 14 died within 5 months, and the rest lived much longer. Failure to improve with initial therapy predicted early death. Results were similar for those with reduced and preserved left ventricular ejection fraction. L-dopa was started in 13 patients and tolerated by 8 patients; functional class improved and B-type natriuretic peptide declined after treatment. With this treatment protocol, there were few HF admissions and patients were able to die at home. It can be used as a guide to therapy, or as an approach that can be tested with additional study.

Management of Opioid-Induced Constipation in Hospice Patients.

Constipation is a common symptom in patients with advanced disease taking opioids. Opioid-induced constipation (OIC) is commonly treated with laxatives and stool softeners. Recently, newer agents have come to market which broaden options for patients in whom first-line therapies are not effective. To determine what pharmacologic regimens are currently used in hospice programs to prevent and treat OIC, whether those regimens have changed with the introduction of newer agents and evidence discouraging the use of docusate, and whether hospice programs are standardizing the management of OIC. An online 10-item questionnaire was disseminated by the National Hospice and Palliative Care Organization. Questions addressed demographics; first-, second- and third-line pharmacologic treatments included in bowel protocols; whether prescribing practices have changed in the last 5 years; and percentage of patients receiving specific constipation therapies. The majority of organizations (68.8%) responded that at least 90% of patients were prescribed a bowel regimen on admission to hospice and 84.4% stated that they have a guideline or protocol for managing OIC. The most commonly used preparations for the treatment of OIC for patients during their length of stay in hospice were senna plus docusate, senna alone, docusate alone, bisacodyl, polyethylene glycol 3350, and lactulose. Over 75% of hospice organizations claimed they never used methylnaltrexone, linaclotide, lubiprostone, or naloxegol. This survey provides insight into recent practices of hospice organizations in the treatment of OIC. As more agents come to market, it is likely that management of OIC will continue to evolve.

Home hospice care in Nepal: a low-cost service in a low-income country through collaboration between non-profit organisations

Abstract Background Nepal is a low-income country in south Asia with a population of more than 27 million people. Because of late diagnosis and poor access to care, almost 90% of approximately 60 000 people diagnosed with cancer in Nepal annually will die within 1 year of diagnosis. Here, we describe our experience in successfully establishing a home hospice programme in Kathmandu, Nepal. Methods In 2015, Binaytara Foundation, a US-based non-profit organisation, collaborated with a Nepal-based non-profit organisation, Cancer Care Nepal, to develop a home hospice programme in Kathmandu. We interviewed 150 terminally ill patients and their family to investigate the need for a hospice programme. A project leader (a Nepali physician) was appointed. In the second phase of the programme, we trained health-care providers and implemented electronic medical records. A hospice nurse practitioner from Idaho, USA, travelled to Nepal to train 15 Nepali nurses. A motorbike was provided for the hospice nurse to travel to patients' homes. Findings The hospice programme was launched in January, 2016. By September, 2016, 65 patients had been enrolled in home hospice care. The service is provided free of charge to the patients and their family. The cost of running the hospice programme is US$17 per day. All costs, including equipment, salary, staff training, electronic medical records, fuel, and other monthly expenses have been paid for by Binaytara Foundation. Interpretation Home hospice programmes are very important in low-income countries like Nepal where most patients with cancer are diagnosed at late stages, and many patients do not have access to cancer centres. To make a home hospice project successful, several factors, such as the selection of an appropriate local partner organisation, training, and financial support are necessary and the project should respect local cultural contexts. Funding None

Factors Driving Live Discharge From Hospice: Provider Perspectives

ContextThe proportion of patients disenrolling from hospice before death has increased over the decade with significant variations across hospice types and regions. Such trends have raised concerns about live disenrollment's effect on care quality. Live disenrollment may be driven by factors other than patient preference and may create discontinuities in care, disrupting ongoing patient-provider relationships. Researchers have not explored when and how providers make this decision with patients. ObjectiveThe objective of this study was to ascertain provider perspectives on key drivers of live discharge from the Medicare hospice program. MethodsWe conducted semistructured telephone interviews with 18 individuals representing 14 hospice providers across the country. Transcriptions were coded and analyzed using a template analysis approach. ResultsAnalysis generated four themes: 1) difficulty estimating patient prognosis, 2) fear of Centers for Medicare & Medicaid Services audits, 3) rising market competition, and 4) challenges with inpatient contracting. Participants emphasized challenges underlying each decision to discharge patients alive, stressing that there often exists a gray line between appropriate and inappropriate discharges. Discussions also focused on scenarios in which financial motivations drive enrollment and disenrollment practices. ConclusionThis study provides significant contributions to existing knowledge about hospice enrollment and disenrollment patterns. Results suggest that live discharge patterns are often susceptible to market and regulatory forces, which may have contributed to the rising national rate.

Beyond Palliative Care: Collaborating With a Hospice Program

Beyond Palliative Care: Collaborating With a Hospice Program

Population-Based Measures from Administrative Data to Guide Efforts to Examine and Improve the Quality of Hospice Care (S711)

•Identify seven population based measures that can be calculated for Medicare claims data.•Understand how certain characteristics of hospices correspond to being an outlier on multiple measures listed in Objective 1. Medicare requires hospices to submit claims containing information that could be used to create population based measures of processes and outcomes to guide efforts to monitor hospices and improve care delivery. Identify hospices that are outliers in the provision of hospice services along seven dimensions: (1) provision of General Inpatient and Continuous Home Care days, (2) visits by nurse or social worker at the end of life, (3) long length of stays in hospice, (4) rates and patterns of hospice live discharge, (4) selective enrollment of nursing home and ALF patients, (6) infrequent hospice visits by nursing staff over the entire course of the episode, and (7) average time spent by nurse during a visit. Population based measures are calculated using 100% of Medicare hospice claims from FFY 2014. For each measure, hospices are grouped into deciles. We count how times a hospice is in the highest decile for each measure and use that count to determine outliers. 460 out of 3,453 hospices scored in the highest decile for 3 or more measures. Those hospices were in southern census region (56% vs. 38%, p <.001) and were for-profit (75% vs 55% for not-for-profit, p<.001). A multivariate ordinal logit model showed newer, smaller, for-profit hospice programs were more likely to be above the thresholds for 3 or more measures compared to larger, older, not-for-profit programs (AOR 2.52 - 95% CI: 1.86-3.42). Potential markers of poor performance can be calculated using hospice claims. Ownership and location are correlated with poor performance across multiple measures.

Caring to Learn and Learning to Care.

The increasing numbers of aging and chronically ill prisoners incarcerated in Western nations is well-documented, as is the growing need for prison-based palliative and end-of-life care. Less often discussed is specifically how end-of-life care can and should be provided, by whom, and with what resources. One strategy incorporates prisoner volunteers into end-of-life services within a peer-care program. This article reports on one such program based on focused ethnographic study including in-depth interviews with inmate hospice volunteers, nursing staff, and corrections officers working in the hospice program. We describe how inmate volunteers learn hospice care through formal education and training, supervised practice, guidance from more experienced inmates, and support from correctional staff. We discuss how emergent values of mentorship and stewardship are seen by volunteers and staff as integral to prison hospice sustainability and discuss implications of this volunteer-centric model for response-ability for the end-of-life care of prisoners.

The “Conversation Nurse” Model

This article reports on a quality improvement project designed to answer the following question: Given the shortage of providers trained in hospice and palliative medicine, could a registered nurse assume the role of a “Conversation Nurse” to expand the capacity of the palliative care team by underg

African Communality Contributing to the Dignity of the Terminally Ill: Traditional and Political Ujamaa in the Selian Hospice and Palliative Care Program in Tanzania

Tanzania’s first president Julius Nyerere’s Ujamaa (living together or living as one family) still extends its influence on Tanzanians’ understanding of communality. The era of Ujamaa socialism as a political system is now history, but some of its heritage still seems to influence how people in Tanzania regard family as well as community and how they act within their community. In this article I differentiate between Nyerere’s political Ujamaa and the traditional Tanzanian communality which was the model for Nyerere’s political program. I thus argue, that the Selian palliative care program could be seen as a present-day example of how Ujamaa — both in political and traditional forms — still influences communal life in Tanzania. The results of this study reveal that the Selian Hospice and Palliative Care Program uses dimensions of both traditional and political Ujamaa in order to protect the dignity of the dying patients. This is done subconsciously and eclectically. The term Ujamaa was not explicitly used in the data of this study. The Program seems to stress communality and social responsibility in general while clearly utilizing the values of both traditional and political Ujamaa all through its practices.

A consensual qualitative research analysis of the experience of inmate hospice caregivers: Posttraumatic growth while incarcerated

ABSTRACTA growing number of correctional facilities train inmates to provide end-of-life care for dying inmates. This study explores the phenomenological perspective of inmate-caregivers participating in an inmate-facilitated hospice program (IFHP) with regard to meaning and purpose in life, attitudes on death and dying, and perceived personal impact of participation. Twenty-two inmate-caregivers were interviewed at a maximum-security state correctional facility in the United States. The interviews were transcribed verbatim and analyzed using the Consensual Qualitative Research Methodology. Results suggest that participating in an IFHP may facilitate personal growth and transformation that mirrors the tenets of posttraumatic growth.

Chaplains Play Important Part in Integrated Palliative Care

Chaplains Play Important Part in Integrated Palliative Care

Hospice Family Caregiver Involvement in Care Plan Meetings: A Mixed-Methods Randomized Controlled Trial.

Untrained family caregivers struggle with complicated medical management regimens for hospice patients. An intervention was tested to improve caregiver's perception of pain management and patient's pain. The intervention was tested with a 2-group (usual care vs intervention) randomized controlled trial using parallel mixed-methods analysis of 446 caregivers in 3 Midwestern hospice programs representing rural and urban settings. Web conferencing or telephones were used to connect caregivers with the hospice care team during care plan meetings. Caregiver's perceptions of pain management were the primary outcome. Secondary outcomes included caregiver quality of life, patient's pain, and anxiety. Video recordings, field notes, and caregiver and staff interviews provided qualitative data. The overall perception of pain management was not changed by the participation in hospice team meetings. Perceptions of fatalism improved for intervention participants, and the intervention participants perceived their patients' pain was better controlled than those in the control group. The intervention was found to be feasible to deliver in rural areas. Caregiver's anxiety and patient's pain were correlated ( r = .18; P = .003), and subanalysis indicated that caregivers of patients with cancer may benefit more from the intervention than other hospice caregivers. Qualitative analyses provided understanding of caregiver's perceptions of pain, cost, and facilitators and barriers to routine involvement of family in care plan meetings. Limitations and Conclusion: The hospice philosophy is supportive of caregiver involvement in care planning, and technology makes this feasible; the intervention needs modification to become translational as well as additional measurement to assess effectiveness. Caregiver education and emotional support should occur outside the meeting, and a strong leader should facilitate the meeting to control efficiency. Finally, the intervention may benefit caregivers of patients with cancer more than others.

Antibiotic Policies and Utilization in Oregon Hospice Programs.

Antibiotics are frequently used in hospice care, despite limited data on safety and effectiveness in this patient population. We surveyed Oregon hospice programs on antibiotic policies and prescribing practices. Among 39 responding hospice programs, the median reported proportion of current census using antibiotics was 10% (interquartile range = 3.5%-20.0%). Approximately 31% of responding hospice programs had policies for antibiotic initiation, 17% of hospice programs had policies for antibiotic discontinuation, and 95% of hospice programs had policies for managing drug interactions. Diarrhea, nausea/vomiting, and yeast infections were the most frequently reported antibiotic-associated adverse events, occurring "sometimes" or "often" among 62%, 47%, and 62% of respondents, respectively. In conclusion, less than a third of participating hospice programs reported having a policy for antibiotic initiation and even less frequently a policy for discontinuation. More data are needed on the risks and benefits of antibiotic use in hospice care to inform these policies and optimize outcomes in this vulnerable patient population.