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BACKGROUND: COVID-19 significantly impacted care delivery to seriously ill patients, especially around including family and caregivers in patient care. AIM: Based on routinely collected bereaved family reports, actionable practices were identified to maintain and improve care in the last month of life, with potential application to all seriously ill patients. DESIGN: The Veterans Health Administration's Bereaved Family Survey is used nationally to gather routine feedback from families and caregivers of recent in-patient decedents; the survey includes multiple structured items as well as space for open narrative responses. The responses were analyzed using qualitative content analysis with dual review. SETTING/PARTICIPANTS: Between February 2020 and March 2021, there were 5372 responses to the free response questions of which 1000 (18.6%) responses were randomly selected. The 445 (44.5%) responses from 377 unique individuals included actionable practices. RESULTS: Bereaved family members and caregivers identified four opportunities with a total of 32 actionable practices. Opportunity 1: Facilitate the use of video communication, included four actionable practices. Opportunity 2: Provide timely and accurate responses to family concerns, included 17 actionable practices. Opportunity 3: Accommodate family/caregiver visitation, included eight actionable practices. Opportunity 4: Offer physical presence to the patient when family/caregivers are unable to visit, included three actionable practices. CONCLUSION: The findings from this quality improvement project are applicable during a pandemic, but also translate to improving the care of seriously ill patients in other circumstances, such as when family members or caregivers are geographically distant from a loved one during the last weeks of life.
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COVID-19 , Terminal Care , Humans , Critical Care , Critical Illness , Quality of Health Care , Family , Caregivers , Palliative CareABSTRACT
BACKGROUND: Normalization Process Theory (NPT) is an implementation theory that can be used to explain how and why implementation strategies work or not in particular circumstances. We used it to understand the mechanisms that lead to the adoption and routinization of palliative care within hemodialysis centers. METHODS: We employed a longitudinal, mixed methods approach to comprehensively evaluate the implementation of palliative care practices among ten hemodialysis centers participating in an Institute for Healthcare Improvement Breakthrough- Series learning collaborative. Qualitative methods included longitudinal observations of collaborative activities, and interviews with implementers at the end of the study. We used an inductive and deductive approach to thematic analysis informed by NPT constructs (coherence, cognitive participation, collective action, reflexive monitoring) and implementation outcomes. The NoMAD survey, which measures NPT constructs, was completed by implementers at each hemodialysis center during early and late implementation. RESULTS: The four mechanisms posited in NPT had a dynamic and layered relationship during the implementation process. Collaborative participants participated because they believed in the value and legitimacy of palliative care for patients receiving hemodialysis and thus had high levels of cognitive participation at the start. Didactic Learning Sessions were important for building practice coherence, and sense-making was solidified through testing new skills in practice and first-hand observation during coaching visits by an expert. Collective action was hampered by limited time among team members and practical issues such as arranging meetings with patients. Reflexive monitoring of the positive benefit to patient and family experiences was key in shifting mindsets from disease-centric towards a patient-centered model of care. NoMAD survey scores showed modest improvement over time, with collective action having the lowest scores. CONCLUSIONS: NPT was a useful framework for understanding the implementation of palliative care practices within hemodialysis centers. We found a nonlinear relationship among the mechanisms which is reflected in our model of implementation of palliative care practices through a learning collaborative. These findings suggest that the implementation of complex practices such as palliative care may be more successful through iterative learning and practice opportunities as the mechanisms for change are layered and mutually reinforcing. TRIAL REGISTRATION: ClinicalTrials.gov, NCT04125537 . Registered 14 October 2019 - Retrospectively registered.
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Diving , Palliative Care , Humans , Swimming , Delivery of Health Care , Surveys and Questionnaires , Qualitative ResearchABSTRACT
Prognostic conversations present many challenges for patients, caregivers, and providers alike. Most research examining the context of prognostic conversations have used a more siloed approach to gather the range of perspectives of those involved, typically through the lens of patient-centered care. However, the mutual influence evident in prognostic conversations suggests a relationship-centered care model may be useful in cancer communication research. Similarities and differences in preferences for and experiences with prognostic conversations among oncology patients, caregivers, and providers (N = 32) were explored. Identified themes were then mapped to the principles of the relationship-centered care framework to extend our understanding of prognostic conversations and contribute to a new direction in the application of relationship-centered care. Findings suggest fewer similarities than differences, point to important discrepancies among participant perspectives, and reinforce the utility of relationship-centered care in identifying communication practices that enhance the prognostic conversation experience.
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BACKGROUND: The Palliative Care: Promoting Access and Improvement of the Cancer Experience (PC-PAICE) initiative is a team-based, palliative care (PC) quality improvement (QI) project working to promote high-quality PC in India. As a PC QI initiative, PC-PAICE implementation relied upon building interdisciplinary teams, providing the ideal context for understanding facilitators of team cohesion that compelled clinical, organizational, and administrative team members to work together. There is an opportunity to leverage the intersection between QI implementation and organizational theory to inform and improve implementation science. PURPOSE: As a subaim of a larger implementation evaluation, we aimed to identify facilitators of team cohesion within QI implementation context. METHODOLOGY: A quota sampling approach captured the perspectives of 44 stakeholders across three strata (organizational leaders, clinical leaders, and clinical team members) from all seven sites through a semistructured interview guide informed by the Consolidated Framework for Implementation Research (CFIR). We used a combination of inductive and deductive approaches informed by organizational theory to identify facilitators. RESULT: We identified three facilitators of PC team cohesion: (a) balancing formalization and flexibility around team roles, (b) establishing widespread awareness of the QI project, and (c) prioritizing a nonhierarchical organizational culture. PRACTICE IMPLICATIONS: Leveraging CFIR to analyze PC-PAICE stakeholder interviews created a data set conducive to understanding complex multisite implementation. Layering role and team theory to our implementation analysis helped us identify facilitators of team cohesion across levels within the team (bounded team), beyond the team (teaming), and surrounding the team (culture). These insights demonstrate the value of team and role theories in implementation evaluation efforts.
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Palliative Care , Quality Improvement , Humans , Quality of Health Care , Implementation Science , Qualitative ResearchABSTRACT
BACKGROUND: In August 2021, up to 30% of Americans were uncertain about taking the COVID-19 vaccine, including some healthcare personnel (HCP). OBJECTIVE: Our objective was to identify barriers and facilitators of the Veterans Health Administration (VHA) HCP vaccination program. DESIGN: We conducted key informant interviews with employee occupational health (EOH) providers, using snowball recruitment. PARTICIPANTS: Participants included 43 VHA EOH providers representing 29 of VHA's regionally diverse healthcare systems. APPROACH: Thematic analysis elucidated 5 key themes and specific strategies recommended by EOH. KEY RESULTS: Implementation themes reflected logistics of distribution (supply), addressing any vaccine concerns or hesitancy (demand), and learning health system strategies/approaches for shared learnings. Specifically, themes included the following: (1) use interdisciplinary task forces to leverage diverse skillsets for vaccine implementation; (2) invest in processes and align resources with priorities, including creating detailed processes, addressing time trade-offs for personnel involved in vaccine clinics by suspending everything non-essential, designating process/authority to shift personnel where needed, and proactively involving leaders to support resource allocation/alignment; (3) expect and accommodate vaccine buy-in occurring over time: prepare for some HCP's slow buy-in, align buy-in facilitation with identities and motivation, and encourage word-of-mouth and hyper-local testimonials; (4) overcome misinformation with trustworthy communication: tailor communication to individuals and address COVID vaccines "in every encounter," leverage proactive institutional messaging to reinforce information, and invite bi-directional conversations about any vaccine concerns. A final overarching theme focused on learning health system needs and structures: (5) use existing and newly developed communication channels to foster shared learning across teams and sites. CONCLUSIONS: Expecting deliberation allows systems to prepare for complex distribution logistics (supply) and make room for conversations that are trustworthy, bi-directional, and identity aligned (demand). Ideally, organizations provide time for conversations that address individual concerns, foster bi-directional shared decision-making, respect HCP beliefs and identities, and emphasize shared identities as healthcare providers.
Subject(s)
COVID-19 , Vaccines , COVID-19/prevention & control , COVID-19 Vaccines , Delivery of Health Care , Health Personnel , Humans , United States , United States Department of Veterans Affairs , VaccinationABSTRACT
BACKGROUND: Development and prioritization of quality measures typically relies on experts in clinical medicine, but patients and their caregivers may have different perspectives on quality measurement priorities. OBJECTIVE: To inform priorities for health system implementation of palliative cancer and end-of-life care quality measures by eliciting perspectives of patients and caregivers. DESIGN: Using modified RAND-UCLA Appropriateness Panel methods and materials tailored for knowledgeable lay participants, we convened a panel to rate cancer palliative care process quality measure concepts before and after a 1-day, in-person meeting. PARTICIPANTS: Nine patients and caregivers with experience living with or caring for patients with cancer. MAIN MEASURES: Panelists rated each concept on importance for providing patient- and family-centered care on a nine-point scale and each panelist nominated five highest priority measure concepts ("top 5"). KEY RESULTS: Cancer patient and caregiver panelists rated all measure concepts presented as highly important to patient- and family- centered care (median rating ≥ 7) in pre-panel (mean rating range, 6.9-8.8) and post-panel ratings (mean rating range, 7.2-8.9). Forced choice nominations of the "top 5" helped distinguish similarly rated measure concepts. Measure concepts nominated into the "top 5" by three or more panelists included two measure concepts of communication (goals of care discussions and discussion of prognosis), one measure concept on providing comprehensive assessments of patients, and three on symptoms including pain management plans, improvement in pain, and depression management plans. Patients and caregivers nominated one additional measure concept (pain screening) back into consideration, bringing the total number of measure concepts under consideration to 21. CONCLUSIONS: Input from cancer patients and caregivers helped identify quality measurement priorities for health system implementation. Forced choice nominations were useful to discriminate concepts with the highest perceived importance. Our approach serves as a model for incorporating patient and caregiver priorities in quality measure development and implementation.
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Neoplasms , Terminal Care , Caregivers , Death , Humans , Neoplasms/therapy , Pain , Palliative Care/methods , Quality Indicators, Health CareABSTRACT
BACKGROUND: Current pain management recommendations emphasize leveraging interdisciplinary teams. We aimed to identify key features of interdisciplinary team structures and processes associated with improved pain outcomes for patients experiencing chronic pain in primary care settings. METHODS: We searched PubMed, EMBASE, and CINAHL for randomized studies published after 2009. Included studies had to report patient-reported pain outcomes (e.g., BPI total pain, GCPS pain intensity, RMDQ pain-related disability), include primary care as an intervention setting, and demonstrate some evidence of teamwork or teaming; specifically, they needed to involve at least two clinicians interacting with each other and with patients in an ongoing process over at least two timepoints. We assessed study quality with the Cochrane Risk of Bias tool. We narratively synthesized intervention team structures and processes, comparing among interventions that reported a clinically meaningful improvement in patient-reported pain outcomes defined by the minimal clinically important difference (MCID). RESULTS: We included 13 total interventions in our review, of which eight reported a clinically meaningful improvement in at least one patient-reported pain outcome. No included studies had an overall high risk of bias. We identified the role of a care manager as a common structural feature of the interventions with some clinical effect on patient-reported pain. The team processes involving clinicians varied across interventions reporting clinically improved pain outcomes. However, when analyzing team processes involving patients, six of the interventions with some clinical effect on pain relied on pre-scheduled phone calls for continuous patient follow-up. DISCUSSION: Our review suggests that interdisciplinary interventions incorporating teamwork and teaming can improve patient-reported pain outcomes in comparison to usual care. Given the current evidence, future interventions might prioritize care managers and mechanisms for patient follow-up to help bridge the gap between clinical guidelines and the implementation of interdisciplinary, team-based chronic pain care.
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Chronic Pain , Pain Management , Bias , Chronic Pain/therapy , Humans , Primary Health Care , Randomized Controlled Trials as TopicABSTRACT
BACKGROUND: The COVID-19 pandemic led to rapid adaptations among palliative care services, but it is unclear how these adaptations vary in relation to their unique organizational contexts. AIM: Understand how the pandemic impacted the implementation of new and existing palliative care programs in diverse hospital systems using the Dynamic Sustainability Framework. DESIGN: Twelve in-depth interviews with 15 key informants representing palliative care programs from seven hospital systems between April and June 2020. SETTING: Public, not-for-profit private, community, and academic teaching hospitals in the San Francisco Bay Area with existing palliative care programs that were expanding services to new clinical areas (e.g. new outpatient clinic or community-based care). RESULTS: Six themes characterized how palliative care programs were impacted and adapted during the early stages of the COVID-19 pandemic: palliative care involvement in preparing for surge, increased emphasis on advance care planning, advocating for visitors for dying patients, providing emotional support to clinicians, adopting virtual approaches to care, and gaps in chaplaincy support. There was variation in how new and existing programs were able to adapt to early pandemic stresses; systems with new outpatient programs struggled to utilize their programs effectively during the crisis onset. CONCLUSIONS: The fit between palliative care programs and practice setting was critical to program resiliency during the early stages of the pandemic. Reconceptualizing the Dynamic Sustainability Framework to reflect a bidirectional relationship between ecological system, practice setting, and intervention levels might better guide implementers and researchers in understanding how ecological/macro changes can influence interventions on the ground.
Subject(s)
COVID-19 , Humans , Pandemics , Palliative Care , Hospitals , Qualitative ResearchABSTRACT
BACKGROUND: There is growing recognition of the importance of involving patients and families with lived experiences of illness in healthcare service quality improvement, research and implementation initiatives. Ensuring input from people with palliative care needs is important, but how to enable this is not well understood. AIM: To seek the perspectives of Australian patients with palliative care needs, and their family members, to elicit their views on how to best contribute to inpatient palliative care quality improvement initiatives. DESIGN: An exploratory qualitative study, using semi-structured interviews. SETTING/PARTICIPANTS: Eligible participants were adult patients with palliative care needs receiving care within a hospital setting, and their family members. Recruitment occurred through: five hospitals in New South Wales, Australia; and snowballing. RESULTS: Fifty participants took part (21 patients and 29 family members). Results confirmed four themes: (1) Mechanisms for providing feedback about care quality need to be supportive and individualised; (2) The clinician-patient/family power imbalance makes real time feedback challenging to provide; (3) Willingness to contribute varies according to diagnosis, timing and role and (4) Face to face feedback is preferred for health service improvement work. CONCLUSIONS: Enabling meaningful consumer input to quality improvement requires careful consideration due to the unique requirements of the palliative care population. Embedding tailored outcome and experience measures to inform real-time care provision coupled with focussed opportunities for input into service improvement may best foster improvements in inpatient palliative care, founded in what matters most for people requiring this care.
Subject(s)
Family , Palliative Care , Adult , Australia , Hospitals , Humans , Palliative Care/methods , Qualitative ResearchABSTRACT
BACKGROUND: Quality improvement (QI) methods represent a vehicle for fostering locally initiated innovation cycles. We partnered with palliative care services from seven diverse practice settings in India to foster locally initiated improvement projects. OBJECTIVE: To evaluate the implementation experiences of locally initiated palliative care improvement projects at seven diverse sites and understand the barriers and facilitators of using QI to improve palliative care in India. PARTICIPANTS: We use a quota sampling approach to capture the perspectives of 44 local stakeholders in each of the following three categories (organizational leaders, clinic leaders, and clinical team members) through a semi-structured interview guide informed by the consolidated framework for implementation research (CFIR). We use standard qualitative methods to identify facilitators and barriers to using QI methods in seven diverse palliative care contexts. RESULTS: Across all sites, respondents emphasized the following factors important in the success of quality improvement initiative: leveraging clinic level data, QI methods training, provider buy-in, engaged mentors, committed leadership, team support, interdepartmental coordination, collaborations with other providers, local champions, and having a structure for accountability. Barriers to using QI methods to improve palliative care services included lack of designated staff, high patient volume, resources, patient population geographic constraints, general awareness and acceptance of palliative care, and culture. CONCLUSIONS: Empowering local leaders and medical personnel to champion, design, and iterate using QI methods represents a promising powerful tool to spread palliative care services in developing countries.
Subject(s)
Palliative Care , Quality Improvement , Health Personnel , Humans , India , Leadership , Qualitative ResearchABSTRACT
BACKGROUND: The United States Veterans Health Administration National Center for Ethics in Health Care implemented the Life-Sustaining Treatment Decisions Initiative throughout the Veterans Health Administration health care system in 2017. This policy encourages goals of care conversations, referring to conversations about patient's treatment and end-of-life wishes for life-sustaining treatments, among Veterans with serious illnesses. A key component of the initiative is expanding interdisciplinary provider roles in having goals of care conversations. AIM: Use organizational role theory to explore medical center experiences with expanding interdisciplinary roles in the implementation of a goals of care initiative. DESIGN: A qualitative thematic analysis of semi-structured interviews. SETTING/PARTICIPANTS: Initial participants were recruited using purposive sampling of local medical center champions. Snowball sampling identified additional participants. Participants included thirty-one interdisciplinary providers from 12 geographically diverse initiative pilot and spread medical centers. RESULTS: Five themes were identified. Expanding provider roles in goals of care conversations (1) involves organizational culture change; (2) is influenced by medical center leadership; (3) is supported by provider role readiness; (4) benefits from cross-disciplinary role agreement; and (5) can "overwhelm" providers. CONCLUSIONS: Organizational role theory is a helpful framework for exploring interdisciplinary roles in a goals of care initiative. Support and recognition of provider role expansion in goals of care conversations was important for the adoption of a goals of care initiative. Actionable strategies, including multi-level leadership support and the use of interdisciplinary champions, facilitate role change and have potential to strengthen uptake of a goals of care initiative.
Subject(s)
Communication , Veterans , Delivery of Health Care , Hospitals , Humans , Patient Care Planning , Qualitative ResearchABSTRACT
Quality is central to healthcare and even more so in the field of palliative care. Palliative care approach is centered around discovering facets of care crucial to improving the quality of life of the patient; be it symptom control, emotional concerns, impact on social roles or reviving the sense of spiritual connectedness. Although there are essential and desirable standards for quality of services, the journey taken by a service, toward quality improvement (QI), is often complex and uncharted. It is up to individual service units to strive toward improvement and reach higher levels of quality. Evidence suggests using a structured methodology for successful improvement in healthcare quality, as most problems are complex and multifaceted. This article introduces the concept and application of QI methodology in the field of palliative care in India and provides an overview of the first cohort of QI projects, facilitated through an international collaborative. The sequence of training, the tools, and the key ingredients for success are enumerated.
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OBJECTIVES: Oral cancers have high epidemiologic burden in India, and most oral cancer patients at the All India Institute of Medical Sciences present in advanced stages. Their symptomatic needs are often not adequately addressed and the referrals to palliative medicine clinic are for severe pain or terminal stages. Using quality improvement methods, we aimed to provide early referral to palliative care for advanced oral cancer patients. MATERIALS AND METHODS: Duration (number of days) between registration at the head-and-neck cancer clinic and referral to palliative medicine clinic at baseline and postinterventions. Interventions: Understanding current perceptions of oncologists for referral to palliative medicine clinic, educating them through departmental meetings, fostering clinician and patient-family awareness through pamphlets, defining process and screening guidelines for referral, including symptom burden charts in head-and-neck cancer clinic notes, soliciting regular feedback from oncologists at review meetings. RESULTS: The number of days for the referral to the palliative medicine clinic decreased from an average of 48 days to 13 days in 6 months. CONCLUSION: A multicomponent intervention included oncologists and patients and families, education, workflow modification, standardized assessment, documentation, and clinician feedback, and succeeded in improving the timeliness of palliative care referrals of advanced oral cancer patients.
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The article collates the narratives of experiences of the international faculty who mentored the quality improvement teams from India since 2017.
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RATIONALE & OBJECTIVE: Elicitation and documentation of patient preferences is at the core of shared decision making and is particularly important among patients with high anticipated mortality. The extent to which older patients with incident kidney failure undertake such discussions with their providers is unknown and its characterization was the focus of this study. STUDY DESIGN: Retrospective cohort study. SETTING & PARTICIPANTS: A random sample of veterans 67 years and older with incident kidney failure receiving care from the US Veterans Health Administration between 2005 and 2010. EXPOSURES: Demographic and facility characteristics, as well as predicted 6-month mortality risk after dialysis initiation and documentation of resuscitation preferences. OUTCOMES: Documented discussions of dialysis treatment and supportive care. ANALYTICAL APPROACH: We reviewed medical records over the 2 years before incident kidney failure and up to 1 year afterward to ascertain the frequency and timing of documented discussions about dialysis treatment, supportive care, and resuscitation. Logistic regression was used to identify factors associated with these documented discussions. RESULTS: The cohort of 821 veterans had a mean age of 80.9±7.2 years, and 37.2% had a predicted 6-month mortality risk>20% with dialysis. Documented discussions addressing dialysis treatment and resuscitation were present in 55.6% and 77.1% of patients, respectively. Those addressing supportive care were present in 32.4%. The frequency of documentation varied by mortality risk and whether the patient ultimately started dialysis. In adjusted analyses, the frequency and pattern of documentation were more strongly associated with geographic location and receipt of outpatient nephrology care than with patient demographic or clinical characteristics. LIMITATIONS: Documentation may not fully reflect the quality and content of discussions, and generalizability to nonveteran patients is limited. CONCLUSIONS: Among older veterans with incident kidney failure, discussions of dialysis treatment are decoupled from other aspects of advance care planning and are suboptimally documented, even among patients at high risk for mortality.
Subject(s)
Advance Care Planning , Hospital Records , Kidney Failure, Chronic/psychology , Patient Preference , Veterans/psychology , Age Factors , Aged , Aged, 80 and over , Comprehensive Health Care , Decision Making, Shared , Female , Goals , Hospitals, Veterans , Humans , Male , Palliative Care , Professional-Patient Relations , Renal Dialysis/psychology , Resuscitation/psychology , Retrospective Studies , Risk , Sampling Studies , Terminal CareABSTRACT
BACKGROUND: Human connection is at the heart of medical care, but questions remain as to the effectiveness of interpersonal interventions. The purpose of this review was to characterize the associations between patient-provider interpersonal interventions and the quadruple aim outcomes (population health, patient experience, cost, and provider experience). METHODS: We sourced data from PubMed, EMBASE, and PsycInfo (January 1997-August 2017). Selected studies included randomized controlled trials and controlled observational studies that examined the association between patient-provider interpersonal interventions and at least one outcome measure of the quadruple aim. Two abstractors independently extracted information about study design, methods, and quality. We characterized evidence related to the objective of the intervention, type and duration of intervention training, target recipient (provider-only vs. provider-patient dyad), and quadruple aim outcomes. RESULTS: Seventy-three out of 21,835 studies met the design and outcome inclusion criteria. The methodological quality of research was moderate to high for most included studies; 67% of interventions targeted the provider. Most studies measured impact on patient experience; improvements in experience (e.g., satisfaction, patient-centeredness, reduced unmet needs) often corresponded with a positive impact on other patient health outcomes (e.g., quality of life, depression, adherence). Enhanced interpersonal interactions improved provider well-being, burnout, stress, and confidence in communicating with difficult patients. Roughly a quarter of studies evaluated cost, but the majority reported no significant differences between intervention and control groups. Among studies that measured time in the clinical encounter, intervention effects varied. Interventions with lower demands on provider time and effort were often as effective as those with higher demands. DISCUSSION: Simple, low-demand patient-provider interpersonal interventions may have the potential to improve patient health and patient and provider experience, but there is limited evidence that these interventions influence cost-related outcomes.
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Burnout, Professional , Quality of Life , Delivery of Health Care , HumansABSTRACT
BACKGROUND/AIMS: We examined the quality of palliative care received by patients with decompensated cirrhosis using an explicit set of palliative care quality indicators (QIs) for patients with end-stage liver disease (PC-ESLD). METHODS: We identified patients newly diagnosed with decompensated cirrhosis at a single veterans health center and followed up them for 2 years or until death. We piloted measurement of PC-ESLD QIs in all patients confirmed to have ESLD using a chart abstraction tool. RESULTS: Out of 167 patients identified using at least one sampling strategy, 62 were confirmed to meet ESLD criteria with chart abstraction. Ninety-eight percent of veterans in the cohort were male, mean age at diagnosis was 61 years, and 74% were White. The overall QI pass rate was 68% (64% for information care planning QIs and 76% for supportive care QIs). Patients receiving specialty palliative care consultation were more likely to receive information care planning QIs (67% vs. 37%, p = 0.02). The best performing sampling strategy had a sensitivity of 62% and specificity of 60%. CONCLUSION: Measuring the quality of palliative care for patients with ESLD is feasible in the veteran population. Our single-center data suggest that the quality of palliative care is inadequate in the veteran population with ESLD, though patients offered specialty palliative care consultation and those affected by homelessness, drug, and alcohol abuse may receive better care. Our combination of ICD-9 codes can be used to identify a cohort of patients with ESLD, though better sensitivity and specificity may be needed.
Subject(s)
End Stage Liver Disease/therapy , Liver Cirrhosis/therapy , Palliative Care/standards , Quality Indicators, Health Care/standards , Terminal Care/standards , Veterans Health Services/standards , Aged , End Stage Liver Disease/diagnosis , End Stage Liver Disease/etiology , End Stage Liver Disease/mortality , Humans , Liver Cirrhosis/complications , Liver Cirrhosis/diagnosis , Liver Cirrhosis/mortality , Male , Middle Aged , Pilot Projects , Time Factors , Treatment OutcomeABSTRACT
OBJECTIVE: Screening for pain in routine care is one of the efforts that the Veterans Health Administration has adopted in its national pain management strategy. We aimed to understand patients' perspectives and preferences about the experience of being screened for pain in primary care. DESIGN: Semistructured interviews captured patient perceptions and preferences of pain screening, assessment, and management. SUBJECTS: We completed interviews with 36 patients: 29 males and seven females ranging in age from 28 to 94 years from three geographically distinct VA health care systems. METHODS: We evaluated transcripts using constant comparison and identified emergent themes. RESULTS: Theme 1: Pain screening can "determine the tone of the examination"; Theme 2: Screening can initiate communication about pain; Theme 3: Screening can facilitate patient recall and reflection; Theme 4: Screening for pain may help identify under-reported psychological pain, mental distress, and suicidality; Theme 5: Patient recommendations about how to improve screening for pain. CONCLUSION: Our results indicate that patients perceive meaningful, positive impacts of routine pain screening that as yet have not been considered in the literature. Specifically, screening for pain may help capture mental health concerns that may otherwise not emerge.
Subject(s)
United States Department of Veterans Affairs , Veterans , Adult , Aged , Aged, 80 and over , Female , Humans , Male , Middle Aged , Pain/diagnosis , Pain Management , Primary Health Care , Qualitative Research , United StatesABSTRACT
BACKGROUND: The majority of expected deaths in high income countries occur in hospital where optimal palliative care cannot be assured. In addition, a large number of patients with palliative care needs receive inpatient care in their last year of life. International research has identified domains of inpatient care that patients and carers perceive to be important, but concrete examples of how these might be operationalised are scarce, and few studies conducted in the southern hemisphere. AIM: To seek the perspectives of Australian patients living with palliative care needs about their recent hospitalisation experiences to determine the relevance of domains noted internationally to be important for optimal inpatient palliative care and how these can be operationalised. DESIGN: An exploratory qualitative study using semi-structured interviews. SETTING/PARTICIPANTS: Participants were recruited through five hospitals in New South Wales, Australia. RESULTS: Twenty-one participants took part. Results confirmed and added depth of understanding to domains previously identified as important for optimal hospital palliative care, including: Effective communication and shared decision making; Expert care; Adequate environment for care; Family involvement in care provision; Financial affairs; Maintenance of sense of self/identity; Minimising burden; Respectful and compassionate care; Trust and confidence in clinicians and Maintenance of patient safety. Two additional domains were noted to be important: Nutritional needs; and Access to medical and nursing specialists. CONCLUSIONS: Taking a person-centred focus has provided a deeper understanding of how to strengthen inpatient palliative care practices. Future work is needed to translate the body of evidence on patient priorities into policy reforms and practice points.
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Inpatients , Palliative Care , Australia , Hospitals , Humans , New South Wales , Qualitative ResearchABSTRACT
OBJECTIVE: For patients with Parkinson's disease (PD), effective communication during neurology encounters is critical to ensuring the treatment plan maximizes quality of life. However, few research studies have engaged neurologists as key experts in identifying opportunities to optimize the clinical encounter. In this study, 16 neurologists from 4 clinic sites participated in hour-long semistructured interviews targeting opportunities to better address patients' quality of life needs. MAIN FINDINGS: Neurologists identified opportunities to meet needs across 4 domains: (1) PD patient education materials and self-management tools to facilitate clinical communication; (2) techniques for improving clinical communication, including strategies for eliciting nonmotor symptoms and contextualizing symptoms to better meet patient quality of life needs; (3) addressing system-level barriers, including time constraints and the lack of an identified specialist referral network; and (4) training in how to lead difficult conversations. PRINCIPAL CONCLUSIONS: Neurologists identified specific barriers, and proposed solutions, to improving care delivery for patients with PD. Integrating practice tools to address quality of life needs, training neurologists in communication around end-of-life care, and strengthening referral networks for rehabilitation and psychosocial support hold promise for improving quality of life for patients with PD.