You won't know if you're improving unless you measure: recommendations for evaluating Hospice-Veteran Partnerships

Growing evidence indicates that there are abundant opportunities to improve the care that patients receive near the end of life. Hospice care has been associated with improvements in these and other outcomes, but hospice is underused by most patient populations. Therefore, the Department of Veterans Affairs (VA) has made hospice access a priority in its plan to improve end-of-life care for all veterans. In addition to committing funding for hospice care, the VA has also established a national network of Hospice-Veteran Partnerships (HVPs) whose goal is to improve access to hospice for veterans. This article describes the results of a nationwide consensus project to develop measures of the success of HVPs and recommends key measures that should be used to track improvements and to identify opportunities for highly successful collaborative strategies.     

Patient evaluation of end-of-life care

The Dutch health care system is characterized by a strong emphasis on primary care. To get insight into the strengths and gaps in end-of-life care in the Netherlands, data are needed about use and patient evaluation of end-of-life care. We assessed the experiences of patients with end-of-life care during the last months of life. We followed 128 patients with incurable lung, breast, ovarian, colorectal or prostate cancer. At inclusion they were interviewed personally at home. During follow-up, every 6 months, we asked them to fill out a questionnaire on the end-of-life care they had received. One-hundred of them died during the research period. Eighty-seven of the deceased patients were able to fill out a questionnaire in the last 6 months of their lives. They reported that, on average, 4.2 disciplines were involved in their care. Most patients indicated to be satisfied with the care offered by their caregivers. Problems in end-of-life care concerned communication, difficulties in coordination, accessibility of end-of-life care and responding quickly to acute problems. We conclude that comprehensive and interdisciplinary end-of-life care may address patients' needs, but that it simultaneously is a challenge to optimal communication among disciplines and between caregivers and the patient.     

A strategy for improvement in care at the end of life: the VA Faculty Leaders Project

Given the commitment of the Veterans Health Administration (VA) to excellent, compassionate end-of-life and palliative care and the VA's extensive system of academic affiliations with the nation's medical schools, there may exist an opportunity to accelerate acceptance of state-of-the-art training for improved care for dying patients. Accordingly, the VA has initiated a project to develop strategies for implementation of benchmark curricula for end-of-life and palliative care. With the support of the Robert Wood Johnson Foundation, this initiative has been implemented in 30 internal medicine residency training programs affiliated with the VA nationally.     

Home-based primary care: the care of the veteran at home

Home-Based Primary Care is a program designed by the Department of Veteran Affairs (VA) to care for frail, medically complex, elderly veteran patients in their home setting. Unique to the VA, the program has similarities and differences in relation to typical Medicare/Medicaid home health and hospice programs. The VA has demonstrated success in maintaining the patients' independence and quality of life as well as exceptional management of chronic disease and prevention.     

Evaluation of a training program for community-based end-of-life care of older people toward aging in place: A mixed methods study

AimsTo evaluate a training program that supports community-based service staff in implementing aging-in-place and end-of-life care programs.BackgroundGlobally, as the population ages, the need for end-of-life care has never been greater. Since Japan is facing the issues of a super-aged population sooner than most countries, there is a particularly urgent need to enhance end-of-life care for older people. Most Japan’s older people wish to spend their final days at home, however, only 11–13% end their lives at home, while 73% die in hospitals. As part of care system, small-scale community-based service for aging-in-place established across Japan in 2006 managed locally. These are flexible services using home or facility care or both for the individual to live long term at their preferred place. We developed the end-of-life care educational training program to encourage behavioral changes in community-based service staff of various readiness levels.DesignMixed methods study design.MethodsA pre-post evaluation of knowledge, confidence and attitude toward end-of-life care, combining quantitative and qualitative data from 53 community-based service staff members who participated in the training program from September 2017 to September 2019. Participants were informed of the end-of-life care process using focus group discussions about end-of-life care and completed surveys evaluating the program before, immediately following and three months after the training. We used the four-level Kirkpatrick model as the evaluation indicator.ResultsQuantitative analysis results indicated that participants were satisfied with the training program. Their knowledge scores regarding end-of-life care significantly improved; they also experienced confidence gains and changes in attitudes, becoming more approving of end-of-life care. Qualitative data revealed details of participants’ satisfaction and what was learned. Through the focus group discussions, they created action plans for implementing end-of-life care programs, which some had accomplished in their local centers by the three-month follow-up.ConclusionsThese results suggest that the training program is effective for promoting end-of-life care through community-based services in Japan. Conducting follow-up training could effectively strengthen participants’ commitment to end-of-life care at community-based services. Use of the training program is expected to promote services to support aging-in-place.     

Pediatric palliative care: starting a hospital-based program

The value of palliative care in pediatrics has received significant attention over the past 10 years. The American Academy of Pediatrics and the Institute of Medicine published recommendations involving children who have a life-limiting diagnosis in a palliative care program early in their disease process. Palliative care is intended to assure an emphasis on quality of life in addition to the current medical treatment, which may be focused on cure, symptom management, and/or end-of-life care. This article describes one hospital's experience in planning, implementing, and managing a pediatric palliative care program. Implementing a hospital-based palliative care program in a children's hospital can be accomplished through careful planning and analysis of need. Writing an official business plan formalized the request for organizational support for this program, including the mission and vision, plans for how services would be provided, expected financial implications, and initial plans for evaluation of success.     

Identifying and Responding to Ethical and Methodological Issues in After-Death Interviews with Next-of-Kin

After-death research with next-of-kin can enhance our understanding of end-of-life care and translate into better services for dying persons and their survivors. This article describes ethical and methodological issues that emerged in a pilot of a face-to-face interview guide designed to elicit next-of-kin's perceptions of end-of-life care. The pilot study was part of a larger Veterans Affairs (VA) Health Services Research protocol to improve end-of-life care in VA Medical Centers. By deconstructing the research process from an ethical perspective and engaging in critical self-assessment, the authors aim to inform other researchers of potential problems involved in after-death research with next-of-kin.     

Identifying and Responding to Ethical and Methodological Issues in After-Death Interviews with Next-of-Kin

After-death research with next-of-kin can enhance our understanding of end-of-life care and translate into better services for dying persons and their survivors. This article describes ethical and methodological issues that emerged in a pilot of a face-to-face interview guide designed to elicit next-of-kin's perceptions of end-of-life care. The pilot study was part of a larger Veterans Affairs (VA) Health Services Research protocol to improve end-of-life care in VA Medical Centers. By deconstructing the research process from an ethical perspective and engaging in critical self-assessment, the authors aim to inform other researchers of potential problems involved in after-death research with next-of-kin.     

Important aspects of end-of-life care among veterans: implications for measurement and quality improvement

To identify aspects of end-of-life care in the U.S. Department of Veterans Affairs (VA) health care system that are not assessed by existing survey instruments and to identify issues that may be unique to veterans, telephone interviews using open-ended questions were conducted with family members of veterans who had received care from a VA facility in the last month of life. Responses were compared to validated end-of-life care assessment instruments in common use. The study took place in four VA medical centers and one family member per patient was invited to participate, selected from medical records using predefined eligibility criteria. These family members were asked to describe positive and negative aspects of the care the veteran received in the last month of life. Interview questions elicited perceptions of care both at VA sites and at non-VA sites. Family reports were coded and compared with items in five existing prospective and retrospective instruments that assess the quality of care that patients receive near the end of life. Interviews were completed with 66 family members and revealed 384 codes describing both positive and negative aspects of care during the last month of life. Almost half of these codes were not represented in any of the five reference instruments (n=174; 45%). These codes, some of which are unique to the veteran population, were grouped into eight categories: information about VA benefits (n=36; 55%), inpatient care (n=36; 55%), access to care (n=33; 50%), transitions in care (n=32; 48%), care that the veteran received at the time of death (n=31; 47%), home care (n=26; 40%), health care facilities (n=12; 18%), and mistakes and complications (n=18; 27%). Although most of the reference instruments assessed some aspect of these categories, they did not fully capture the experiences described by our respondents. These data suggest that many aspects of veterans' end-of-life care that are important to their families are not assessed by existing survey instruments. VA efforts to evaluate end-of-life care for veterans should not only measure common aspects of care (e.g., pain management), but also examine performance in areas that are more specific to the veteran population.     

Mastering improvement science skills in the new era of quality and safety: the Veterans Affairs National Quality Scholars Program

Rationale, aims and objectives Healthcare professionals need a new skill set to ensure the success of quality improvement in healthcare. The Department of Veterans Affairs (VA) initiated the VA National Quality Scholars fellowship in 1998; its mission is to improve the quality of care, ensure safety, accelerate healthcare re‐design, and advance the improvement science by educating the next generation of leaders in quality and safety. We describe the critical need for leadership in quality and safety and interprofessional education, illustrate the curriculum, provide lessons learned by fellows, summarize key lessons learned from the implementation of an interprofessional education approach, and present most recent accomplishments. Methods Narrative review. Results As of 2011, 106 program alumni are embedded in the health care delivery system across the United States. Since 2009, when nurse fellows joined the program, of the first nine graduating interdisciplinary fellows, the tailored curriculum has resulted in five advanced academic degrees, 42 projects, 29 teaching activities, 44 presentations, 36 publications, six grants funded or submitted, and two awards. Conclusions The VA National Quality Scholars program continues to nurture and develop leaders for the new millennium focusing on interprofessional education. The nations' health care systems need strong interdisciplinary leaders in advanced quality improvement science who are dedicated to improving the overall quality of health and health care.     

The role of psychiatric diagnosis in satisfaction with primary care: data from the department of veterans affairs

BACKGROUND: Although patient satisfaction is widely used as a quality indicator, most such measures do not account for patient subgroups such as those with psychiatric illness. There is also very little data on satisfaction of psychiatric patients with their medical care. OBJECTIVE: The objective of this study was to assess the role of psychiatric illness in satisfaction with outpatient primary care services in the Department of Veterans Affairs (VA). METHOD: Data from the VA Customer Feedback Survey (n = 50,532) were merged with administrative data to determine diagnoses and other characteristics. Satisfaction ratings were compared across psychiatric diagnoses and across various aspects of satisfaction with care. RESULTS: After controlling for patient characteristics (eg, gender, age, disability, acute vs. routine visit) and subjective health, patients with schizophrenia, posttraumatic stress disorder, drug abuse, depression, and other psychiatric disorders reported significantly lower satisfaction with their outpatient primary care. Dissatisfaction was particularly reported for access to care and overall coordination of care. CONCLUSIONS: Despite VA characteristics that might be thought to improve satisfaction (eg, easier access to specialty mental health services as a result of the integrated VA system), patients with psychiatric disorders are significantly less satisfied than patients without such disorders. Possible explanations include both lower technical quality of care and poorer interpersonal communication between providers and patients with mental illness, including the negative effects of stigma. These findings highlight the need for satisfaction ratings to be case-mix-adjusted, including the incorporation of health and mental health diagnoses, and the need for further research that elucidates the reasons behind lower satisfaction ratings.     

Managing brain metastases patientswith and without radiotherapy: initial lessonsfrom a team-based consult service through a multidisciplinary integrated palliative oncology clinic

Purpose

A new ambulatory consultative clinic with integrated assessments by palliative care, radiation oncology, and allied health professionals was introduced to (1) assess patients with brain metastases at a regional comprehensive cancer center and (2) inform and guide patients on management strategies, including palliative radiotherapy, symptom control, and end-of-life care issues. We conducted a quality assurance study to inform clinical program development.

Methods

Between January 2011 and May 2012, 100 consecutive brain metastases patients referred and assessed through a multidisciplinary clinic were evaluated for baseline characteristics, radiotherapy use, and supportive care decisions. Overall survival was examined by known prognostic groups. Proportion of patients receiving end-of-life radiotherapy (death within 30 and 14 days of brain radiotherapy) was used as a quality metric.

Results

The median age was 65 years, with non-small cell lung cancer (n?=?38) and breast cancer (n?=?23) being the most common primary cancers. At least 57 patients were engaged in advance care planning discussions at first consult visit. In total, 75 patients eventually underwent brain radiotherapy, whereas 25 did not. The most common reasons for nonradiotherapy management were patient preference and rapid clinical deterioration. Overall survival for prognostic subgroups was consistent with literature reports. End-of-life brain radiotherapy was observed in 9 % (death within 30 days) and 1 % (within 14 days) of treated patients.

Conclusions

By integrating palliative care expertise to address the complex needs of patients with newly diagnosed brain metastases, end-of-life radiotherapy use appears acceptable and improved over historical rates at our institution. An appreciable proportion of patients are not suitable for palliative brain radiotherapy or opt against this treatment option, but the team approach involving nurses, palliative care experts, allied health, and clinical oncologists facilitates patient-centered decision making and transition to end-of-life care.     

The PRISMA Symposium 4: how should Europe progress end-of-life and palliative clinical care research? Recommendations from the proceedings

Within aging European populations, the need to progress end-of-life and palliative care policy is becoming increasingly important. PRISMA, a European Commission-funded project, aimed to identify and coordinate research priorities, measurement, and practice in end-of-life care for Europe. PRISMA conducted a three-year multidisciplinary program to advance science and policy and to enhance coordination of cross-national activity. The final PRISMA symposium was convened to disseminate our new knowledge and activities and was held for European Union-level and national-level policy makers, policy influencers, and funders. Nearly 100 international invited delegates participated in the symposium, with the understanding that European research is aided by international partnerships and the free exchange of ideas and resources across states. The series of invited speakers, roundtables, and floor discussions underlined the necessity for clinical and public priorities to inform holistic outcome measurement research supported by government action informed by policy. Sustainable leadership, clear terminology and pan-European collaborative networks, and protected research funding designated for end-of-life or palliative care were identified as essential to progress end-of-life and palliative care research and innovation in Europe. An agreed set of outcome measures for end-of-life and palliative care that builds on previous pan-European projects is fundamental to a cross-national program of development in order to advance research and innovation within Europe.     

Research and policy recommendations from the SOTA XVI: State of the Art Conference on VA Emergency Medicine

To better understand and prioritize research on emergency care for Veterans, the Department of Veteran Affairs (VA) Health Services Research and Development convened the 16th State of the Art Conference on VA Emergency Medicine (SAVE) in Winter 2022 with emergency clinicians, researchers, operational leaders, and additional stakeholders in attendance. Three specific areas of focus were identified including older Veterans, Veterans with mental health needs, and emergency care in the community (non-VA) settings. Among older Veterans, identified priorities included examination of variation in care and its impact on patient outcomes, utilization, and costs; quality of emergency department (ED) care transitions and strategies to improve them; impact of geriatric ED care improvement initiatives; and use of geriatric assessment tools in the ED. For Veterans with mental health needs, priorities included enhancing the reach of effective, multicomponent suicide prevention interventions; development and evaluation of interventions to manage substance use disorders; and identifying and examining safety and effective acute psychosis practices. Community (non-VA) emergency care priorities included examining changes in patterns of use and costs in VA and the community care settings as a result of recent policy and coverage changes (with an emphasis on modifiable factors); understanding quality, safety, and Veteran experience differences between VA and community settings; and better understanding follow-up needs among Veterans who received emergency care (or urgent care) and how well those needs are being coordinated, communicated, and met. Beyond these three groups, cross-cutting themes included the use of telehealth and implementation science to refine multicomponent interventions, care coordination, and data needs from both VA and non-VA sources. Findings from this conference will be disseminated through multiple mechanisms and contribute to future funding applications focused on improving Veteran health.     

Nurse Practitioner−led Intensive Outpatient Team: Effects on End-of-life Care

In order to enhance care for high-risk patients, many health systems are implementing intensive outpatient programs, often with advanced practice nurses taking the lead. We sought to examine the effects of 1 such nurse practitioner−led program on end-of-life care for patients in the Veterans Affairs health care system. Patients enrolled in the intensive program had higher rates of hospice referral (74%) compared with patients enrolled in standard primary care (44%) (P = .025). Nurse practitioner−led intensive outpatient primary care may increase hospice referrals for high-risk patients near end-of-life.     

Customer focus: patient, organization and EQuIP in collaboration. Evaluation and Quality Improvement Program.

The Australian Council on Healthcare Standards (ACHS) Evaluation and Quality Improvement Program (EQuIP) calls on healthcare organizations to increase their focus on patients by using leadership to coordinate, and continuous improvement to guide, care delivery. At a large acute care private facility in Melbourne, a program has been developed to create a 'care partnership', characterized by shared decision making, collaboration and conciliation. This program enhances patient care through the coordination of three strategies, a patient communication strategy, an evaluation strategy and a quality improvement strategy. The program has resulted in patient guided reforms such as redesign of a patient information booklet, a hospital-wide discharge planning improvement initiative and a hospital-wide strategy to improve pain management. Through the creation of a care partnership, this program helps an acute care hospital focus its services and processes on one of its key customer groups, patients.     

Project ENABLE: a palliative care demonstration project for advanced cancer patients in three settings

At the end of the 1990s, based on data from two major studies of end-of-life (EOL) care, the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT), and the Hospitalized Elderly Longitudinal Project (HELP), a consensus panel report documented the problems and needs of patients with cancer and other life-limiting diagnoses at end-of-life. A national program of The Robert Wood Johnson Foundation (RWJF), Promoting Excellence in End-of-Life Care, attempted to address these needs by funding demonstration projects to test various approaches to improve identified deficits. In 1998, Project ENABLE (Educate, Nurture, Advise Before Life Ends), one of four RWJF-funded cancer center/hospice collaborations of the Promoting Excellence program, began to address these issues. The jointly sponsored Norris Cotton Cancer Center (NCCC)/Hospice of Vermont and New Hampshire (Hospice VNH) program provided an integrated approach to the management of life-limiting cancer. Project ENABLE was aimed at alleviating the symptoms of disease and treatment, enhancing clinician and patient/family communication, offering support for families, friends and other caregivers, addressing emotional and spiritual needs of dying people and providing conceptual and administrative structure to provide EOL care consistent with patients' values and preferences. Although patient symptom data is not yet available, other measures of success included improved access to hospice and palliative care services from the time of diagnosis and a sustained palliative care program at two of the three sites in which the program was implemented.     

Department of Veterans Affairs-Medicare dual beneficiaries with stroke: where do they get care?

This study examined care patterns among stroke patients with diabetes who were dually eligible for Department of Veterans Affairs (VA) and Medicare services. We investigated the location (VA hospital or community-based hospital reimbursed by Medicare) of initial and postacute stroke care during a 1-year follow-up period. We used logistic regression to identify the factors associated with the locations of initial and subsequent stroke care. Of the 6,699 patients studied, 76% received their initial care at a Medicare-reimbursed hospital ("Medicare-first" patients) and 24% at a VA hospital ("VA-first" patients). Patients who were white, married, female, or living farther from the VA were more likely to be Medicare-first patients. During the follow-up period, Medicare-first patients were more likely not only to seek further care but also to use the dual systems than were VA-first patients (71% vs 49%, respectively). The high rates of dual-system use highlight the need for care coordination across systems to address issues of care duplication and continuity.     

End of life care: ethical issues

Nurses spend more time with patients who are facing the end-of-life than any other member of the health care team. Yet, studies have shown that many nurses feel inadequately prepared to provide the comprehensive care so important at the end-of-life. Penny Marshall, RN, PhD nursing professor at Johnson County Community College has recently attended a three-day course on end-of-life care held in Pasadena, CA. The American Associate of Colleges of Nursing (AACN) and the City of Hope (COH) National Medical Center received a 3 1/2 year grant from the Robert Wood Johnson Foundation to conduct this training program for undergraduate nursing school faculty members (Geraldine Bednash, PhD, FAAN and Betty R. Ferrell, PhD, FAAN, Principal Investigators). The training program, entitled End-of-Life Nursing Education Consortium (ELNEC), was conducted by distinguished faculty of researchers, educators, authors, and leaders in the field of palliative care; and aimed to provide faculty with comprehensive information on end-of-life care and resources to integrate into nursing school programs. The following two articles draw on this extensive curriculum to discuss two important aspects of end-of-life care: 1) common ethical dilemmas and complex questions that arise in the practice setting; and 2) symptom management during palliative care.