Barriers and Facilitators to Scaling Up Outpatient Palliative Care.

BACKGROUND: The Institute of Medicine recommends people with serious advanced illness have access to skilled palliative care. However, the predominant delivery model of nonhospice palliative care is inpatient, consultative care focused on the end of life, with a small specialist palliative care workforce. OBJECTIVE: The study objective was to understand organizational factors that could influence the adoption and scale-up of outpatient palliative care in chronic advanced illness, using the example of heart failure. METHODS: This was a cross-sectional qualitative study. Participants were 17 health care providers and local, regional, and national health system leaders from the Veterans Health Administration (VHA) who were considering whether and how to adopt and sustain outpatient palliative care. Individual interviews using semistructured questions assessed domains of the Consolidated Framework for Implementation Science. RESULTS: Most providers and leaders perceived outpatient palliative care as high priority in the VHA given its patient-centeredness and potential to decrease health care use and costs associated with conditions like heart failure. They also supported a collaborative care team model of outpatient palliative care delivery where a palliative care specialist collaborates with medical nurses and social workers. They reported lack of performance measures/incentives for patient-centered care processes and outcomes as a potential barrier to implementation. Features of outpatient palliative care viewed as important for successful adoption and scale-up included coordination and communication with other providers, ease of integration into existing programs, and evidence of improving quality of care while not substantially increasing overall health care costs. CONCLUSION: Incentives such as performance measures and collaboration with local VHA providers and leaders could improve adoption and scale-up of outpatient palliative care.

Perspectives of Primary Care Providers Toward Palliative Care for Their Patients.

PURPOSE: The need for all providers to deliver basic palliative care has emerged as patients' needs outstrip the capacity of specialty palliative care. Many patients with complex illnesses have unmet needs and are seen in primary care more than other settings. We explore primary care providers' willingness and perceived capacity to provide basic palliative care, and their concerns and perceived barriers. METHODS: We performed semistructured telephone interviews with 20 primary care providers about their perceptions of palliative care, including needs, practices, experiences, access, and what would be helpful for their practices to systematically provide basic palliative care. RESULTS: We identified 3 major themes: (1) Participants recognize palliative needs in patients with complex problems. (2) They reactively respond to those needs using practice and community resources, believing that meeting those needs at a basic level is within the scope of primary care. (3) They can identify opportunities to improve the delivery of a basic palliative approach in primary care through practice change and redesign strategies used in enhanced primary care environments. CONCLUSIONS: Systematic attention along the multidimensional domains of basic palliative care might allow practices to address unmet needs in patients with complex illnesses by using existing practice improvement models, strategies, and prioritization.

Feasibility and acceptability of a decision aid designed for people facing advanced or terminal illness: a pilot randomized trial.

BACKGROUND: Patients nearing the end of their lives face an array of difficult decisions. OBJECTIVE: This study was designed to assess the feasibility and acceptability of a decision aid (DA) designed for patients facing advanced or terminal illness. DESIGN: We conducted a pilot randomized clinical trial of Health Dialog's Looking Ahead: choices for medical care when you're seriously ill DA (booklet and DVD) applied to patients on a hospital-based palliative care (PC) service. SETTING: University of Colorado Hospital - December 2009 and May 2010. PARTICIPANTS: All adult, English-speaking patients or their decision makers were potentially eligible. Patients were not approached if they were in isolation, did not speak English or if any provider felt that they were not appropriate because of issues such as family conflict or actively dying. INTERVENTION: All participants received a standard PC consultation. Participants in the intervention arm also received a copy of the DA. Measurements Primary outcomes included decision conflict and knowledge. Participants in the intervention arm also completed an acceptability questionnaire and qualitative exit interviews. RESULTS: Of the 239 patients or decision makers, 51(21%) enrolled in the trial. The DA had no significant effect on decision conflict or knowledge. Exit interviews indicated it was acceptable and empowering, although they wished they had access to the DA earlier. CONCLUSIONS: While the DA was acceptable, feasibility was limited by late-life illness challenges. Future trials of this DA should be performed on patients earlier in their illness trajectory and should include additional outcome measures such as self-efficacy and confidence.

Feasibility and acceptability of a collaborative care intervention to improve symptoms and quality of life in chronic heart failure: mixed methods pilot trial.

BACKGROUND: People with chronic heart failure (HF) suffer from numerous symptoms that worsen quality of life. The CASA (Collaborative Care to Alleviate Symptoms and Adjust to Illness) intervention was designed to improve symptoms and quality of life by integrating palliative and psychosocial care into chronic care. OBJECTIVE: Our aim was to determine the feasibility and acceptability of CASA and identify necessary improvements. METHODS: We conducted a prospective mixed-methods pilot trial. The CASA intervention included (1) nurse phone visits involving structured symptom assessments and guidelines to alleviate breathlessness, fatigue, pain, or depression; (2) structured phone counseling targeting adjustment to illness and depression if present; and (3) weekly team meetings with a palliative care specialist, cardiologist, and primary care physician focused on medical recommendations to primary care providers (PCPs, physician or nurse practioners) to improve symptoms. Study subjects were outpatients with chronic HF from a Veteran's Affairs hospital (n=15) and a university hospital (n=2). Measurements included feasibility (cohort retention rate, medical recommendation implementation rate, missing data, quality of care) and acceptability (an end-of-study semi-structured participant interview). RESULTS: Participants were male with a median age of 63 years. One withdrew early and there were <5% missing data. Overall, 85% of 87 collaborative care team medical recommendations were implemented. All participants who screened positive for depression were either treated for depression or thought to not have a depressive disorder. In the qualitative interviews, patients reported a positive experience and provided several constructive critiques. CONCLUSIONS: The CASA intervention was feasible based on participant enrollment, cohort retention, implementation of medical recommendations, minimal missing data, and acceptability. Several intervention changes were made based on participant feedback.

Paediatric spinal fusion surgery and the transition to home-based care: provider expectations and carer experiences.

There are more than 12 million children with special healthcare needs (CSHCNs) in the United States, many of whom require specialised health-care to treat chronic physical and developmental conditions. This study is a qualitative investigation of programme, surgical and at-home recovery experiences among CSHCNs and their family carers who participated in a spine surgical care programme at a paediatric hospital in the Western United States. The programme is designed to manage increased surgical risk and the transition of care from hospital to home for children with severe scoliosis undergoing spinal fusion surgery. We conducted 30 semi-structured in-depth interviews with 14 surgical team members and 16 family carers of children who had programme evaluations and spinal surgeries in 2006. Data were collected in 2008 and 2009 in hospital or at home locations to gather programme participation feedback from families and inform the adequacy of programme support to families during at-home recovery. Data were analysed by reflexive team and content analysis methodologies. Results showed the programme was effective at improving preoperative surgical evaluation and helping families to anticipate some aspects of the surgical experience and hospital discharge. However, the impact of spinal fusion surgery and the subsequent transition to home-based care was profoundly emotional for patients and their carers. Our data indicate that programme providers underestimated the extent of emotional trauma experienced by patients and families, particularly during the at-home recovery process. The data also suggest meaningful differences in providers' and carers' expectations for surgery. Carers' disappointment with their recovery experiences and the perceived lack of post-discharge support impacted their interpretations of and perspectives on their surgical experience. Implications of this research for surgical care programmes include the need for assessment and provision of support for physical, social, and emotional burdens experienced by patients and carers at pre-surgical, surgical and at-home recovery phases.

Giving voice to patients' and family caregivers' needs in chronic heart failure: implications for palliative care programs.

BACKGROUND: The American College of Cardiology Foundation/American Heart Association (ACC/AHA) Guidelines for the Management of Heart Failure recommend palliative care in the context of Stage D HF or at the end of life. Previous studies related to heart failure (HF) palliative care provide useful information about patients' experiences, but they do not provide concrete guidance for what palliative care needs are most important and how a palliative care program should be structured. OBJECTIVES: Describe HF patients' and their family caregivers' major concerns and needs. Explore whether, how, and when palliative care would be useful to them. DESIGN AND PARTICIPANTS: Qualitative study using in-depth interviews of 33 adult outpatients with symptomatic HF identified using purposive sampling and 20 of their family caregivers. APPROACH: Interviews were transcribed verbatim and analyzed using the constant comparative method. KEY RESULTS: Overall, patients and caregivers desired early support adjusting to the limitations and future course of illness, relief of a number of diverse symptoms, and the involvement of family caregivers using a team approach. A diverse group of participants desired these elements of palliative care early in illness, concurrent with their disease-specific care, coordinated by a provider who understood their heart condition and knew them well. Some diverging needs and preferences were found based on health status and age. CONCLUSIONS: HF patients and their family caregivers supported early integration of palliative care services, particularly psychosocial support and symptom control, using a collaborative team approach. Future research should test the feasibility and effectiveness of integrating such a program into routine HF care.

Outpatient palliative care for chronic heart failure: a case series.

BACKGROUND/OBJECTIVES: Although the palliative care needs of outpatients with chronic heart failure (HF) are numerous, there is limited published experience in providing outpatient HF palliative care. This article describes the patients seen and the issues addressed in an outpatient palliative care program for patients with HF. METHODS: Case series involving a retrospective medical record review using descriptive quantitative and qualitative analysis. RESULTS: Over a 3 ½ year time period, 50 patients were seen, resulting in 228 total visits. Fifty percent of patients were seen only once. Fifty-eight percent of patients had New York Heart Association (NYHA) Class III-IV HF. Within a year of the initial palliative care visit, 14% of patients died. Depression, anxiety, pain, fatigue, breathlessness, and sleep disturbance were common symptoms addressed during visits. Advance care planning topics were discussed with 48% of patients; hospice and resuscitation status were each discussed with 16% of patients. Fears or concerns about the future arose in 34% of patients. Care coordination was commonly addressed with patients' other health care providers (58%). The most common referrals were to social work (26%) and rehabilitation/physical therapy (20%). CONCLUSIONS: Several findings reflect how outpatient HF palliative care differs from that of inpatient hospital-based palliative care. Many of the issues addressed, including care coordination, advance care planning, and psychosocial issues, imply that palliative HF care is complementary to standard HF care at all stages of the disease process and that future programs should consider dedicating a nurse and/or social worker. Research is needed to test how such a care model affects patient-centered outcomes, utilization, and cost.

Exploring physician decisions about end-of-life opiate prescribing: a qualitative study.

BACKGROUND: Opiates are commonly used for symptoms at the end of life (EOL). Little is known about the decision-making process physicians go through when deciding to prescribe opiates for their EOL patients. The study's objective was to explore physician factors affecting EOL opiate prescribing. METHODS: Qualitative study of 38 physicians in the Denver area in the specialties of outpatient and inpatient medicine, geriatrics, oncology, and palliative care. Semi-structured qualitative interviews by trained interviewers asked physicians about their knowledge, attitudes, and experiences in prescribing opiates, reasons for prescribing opiates, barriers to prescribing opiates, changes in prescribing habits, and perceived patient factors that influence prescribing. Interviews were analyzed using ATLAS.ti qualitative analysis software and independently coded by two reviewers. RESULTS: We found a spectrum of beliefs ranging from the viewpoint that opiates are underused at EOL to overused. We found five key themes: practices in when and how to use opiates, barriers to prescribing, personal experiences drive prescribing, social meaning of opiates, and differences in the role of physician. Physicians interviewed described experiences, both personal and professional, that influenced their opiate-prescribing habits. All respondents expressed positive experiences with prescribing opiates in being able to ease patients' suffering at EOL and to improve their functionality and quality of life. CONCLUSIONS: Differences in prescribing habits, attitudes, and experiences of physicians influence opiate prescribing, which may lead to over- and underprescribing. Knowledge, barriers, and fears about EOL opiate prescribing need to be addressed to ensure EOL patients are receiving appropriate symptom relief.

Returning to work after cancer: quantitative studies and prototypical narratives.

OBJECTIVE: A combination of quantitative data and illustrative narratives may allow cancer survivorship researchers to disseminate their research findings more broadly. We identified recent, methodologically rigorous quantitative studies on return to work after cancer, summarized the themes from these studies, and illustrated those themes with narratives of individual cancer survivors. METHODS: We reviewed English-language studies of return to work for adult cancer survivors through June 2008, and identified 13 general themes from papers that met methodological criteria (population-based sampling, prospective and longitudinal assessment, detailed assessment of work, evaluation of economic impact, assessment of moderators of work return, and large sample size). We drew survivorship narratives from a prior qualitative research study to illustrate these themes. RESULTS: Nine quantitative studies met four or more of our six methodological criteria. These studies suggested that most cancer survivors could return to work without residual disabilities. Cancer site, clinical prognosis, treatment modalities, socioeconomic status, and attributes of the job itself influenced the likelihood of work return. Three narratives-a typical survivor who returned to work after treatment, an individual unable to return to work, and an inspiring survivor who returned to work despite substantial barriers-illustrated many of the themes from the quantitative literature while providing additional contextual details. CONCLUSION: Illustrative narratives can complement the findings of cancer survivorship research if researchers are rigorous and transparent in the selection, analysis, and retelling of those stories.

The impact of physical and psychosocial factors on work characteristics after cancer.

Most previously employed cancer survivors continue to work after treatment, but the impact of cancer symptoms or psychosocial concerns on their work has seldom been assessed. We conducted a community-based survey of cancer survivors from the Colorado Central Cancer Registry to assess the changes in their work and the demographic, clinical, and psychosocial characteristics associated with work changes over the 2 years following diagnosis. Of 100 survivors, 92 returned to work, but 57% of those reduced their work by more than 4 h/week, and 56% noted a change in some aspect of their occupational role. Physical symptoms, particularly lack of energy or nausea/vomiting, and psychological symptoms, particularly feeling bored or useless or feeling depressed, were significantly associated with a reduction in work hours or a change in occupational role. Since changes in work are common and are associated with both physical and psychosocial symptoms, strategies are needed to reduce symptom burden and barriers to work and to improve work capacity for working-age cancer survivors.

Relationship of processes and structures of care in general surgery to postoperative outcomes: a qualitative analysis.

BACKGROUND: With increased focus on improving surgical care quality, understanding structures and processes that influence surgical care is timely and important, as is more precise specification of these through improved measurement. STUDY DESIGN: We conducted a qualitative study to help design a quantitative survey of structures and processes of surgical care. We audiotaped 44 face-to-face interviews with surgical care leaders and other diverse members of the surgical care team from 6 hospitals (two Veterans Affairs, four private sector). Qualitative interviews were transcribed and analyzed to identify common structures and processes mentioned by interviewees to include on a quantitative survey and to develop a rich description of salient themes on indicators of effective surgical care services and surgical care teams. RESULTS: Qualitative analyses of transcripts resulted in detailed descriptions of structures and processes of surgical care services that affected surgical care team performance--and how particular structures led to effective and ineffective processes that impacted quality and outcomes of surgical care. Communication and care coordination were most frequently mentioned as essential to effective surgical care services and teams. Informants also described other influences on surgical quality and outcomes, such as staffing, the role of residents, and team composition and continuity. CONCLUSIONS: Surgical care team members reinforced the importance of understanding surgical care processes and structures to improve both quality and outcomes of surgical care. The analysis of interviews helped the study team identify potential measures of structures and processes to include in our quantitative survey.

A qualitative study of work and work return in cancer survivors.

Few studies have examined the impact of cancer on the survivor's quality of work life. The purpose of this qualitative study is to describe the work experiences among a diverse group of cancer survivors and to explore factors influencing decisions about work after cancer diagnosis and treatment. We interviewed 28 participants with a broad range of socioeconomic backgrounds and primary cancer sites. Qualitative results indicate that after learning about their cancer diagnosis, participants had diverse and complex patterns of work return and work change, and experienced a variety of factors that influenced post-cancer decisions. Experiences at work after cancer also varied in relation to how others responded, changes in productivity, effects of cancer and treatment on work, and feelings about work. Most respondents received little guidance from their physicians about work, and many participants described their cancer as impacting their priority of work relative to other aspects of their lives. Our findings reinforce the complexity of measuring employment outcomes and the range of adaptations made to improve the quality of work life. Additional research is needed to identify prognostic factors that can guide clinical or workplace efforts to restore cancer survivors to their desired level of work function and economic productivity.