Showing papers in "Journal of Palliative Medicine in 2018"
TL;DR: The 4th edition of the National Consensus Project Clinical Practice Guidelines for Quality Palliative Care formalize and delineate evidence-based processes and practices for the provision of safe and reliable high-quality palliative care for adults, children, and families with serious illness in all care settings.
Abstract: Background: The goal of the 4th edition of the National Consensus Project Clinical Practice Guidelines for Quality Palliative Care (NCP Guidelines) is to improve access to quality palliative care for all people with serious illness regardless of setting, diagnosis, prognosis, or age. Objective: The NCP Guidelines are intended to encourage and guide healthcare organizations and clinicians (including nonpalliative care specialists) across the care continuum to integrate palliative care principles and best practices into their routine assessment and care of all seriously ill patients and their family caregivers. Methods: The NCP Guidelines formalize and delineate evidence-based processes and practices for the provision of safe and reliable high-quality palliative care for adults, children, and families with serious illness in all care settings. Results: This article presents the key domains and guidelines of the 4th edition.
337 citations
TL;DR: Improving serious illness care necessitates ensuring that high-quality communication has occurred and measuring its impact, and measuring patient experience and receipt of goal-concordant care should be the highest priority.
Abstract: Background: High-quality care for seriously ill patients aligns treatment with their goals and values. Failure to achieve “goal-concordant” care is a medical error that can harm patients and families. Because communication between clinicians and patients enables goal concordance and also affects the illness experience in its own right, healthcare systems should endeavor to measure communication and its outcomes as a quality assessment. Yet, little consensus exists on what should be measured and by which methods. Objectives: To propose measurement priorities for serious illness communication and its anticipated outcomes, including goal-concordant care. Methods: We completed a narrative review of the literature to identify links between serious illness communication, goal-concordant care, and other outcomes. We used this review to identify gaps and opportunities for quality measurement in serious illness communication. Results: Our conceptual model describes the relationship between communication, ...
189 citations
TL;DR: To ensure seriously ill people and their families receive high-quality primary and specialty palliative care services, rigorous methods are needed to prospectively identify this population of patients and caregivers.
Abstract: Background: To ensure seriously ill people and their families receive high-quality primary and specialty palliative care services, rigorous methods are needed to prospectively identify this population. Objective: To define and operationalize a definition of serious illness for the purpose of identifying patients and caregivers who need primary or specialty palliative care services. Design/Setting: Two stages of work included (1) building expert consensus around a conceptual definition of serious illness and (2) using the National Health and Aging Trends Study linked to Medicare claims data to test a range of operational definitions composed of diagnoses, utilization, and markers of care needs. Measurements: One-year outcomes included mean total Medicare costs, mortality, and percent hospitalized, as well as those reporting ≥2 measures of need and functional impairment. Sensitivity, specificity, and c-statistics (unadjusted and adjusted for age, sex, race, and Medicaid status) were calculated for ...
101 citations
TL;DR: Given the prevalence of persistent suffering and growing acceptance of physician-hastened death as a medical response, it is time to revisit the legitimate therapeutic use of psychedelics.
Abstract: Background: Psychiatric research in the 1950s and 1960s showed potential for psychedelic medications to markedly alleviate depression and suffering associated with terminal illness. More recent published studies have demonstrated the safety and efficacy of psilocybin, MDMA, and ketamine when administered in a medically supervised and monitored approach. A single or brief series of sessions often results in substantial and sustained improvement among people with treatment-resistant depression and anxiety, including those with serious medical conditions. Need and Clinical Considerations: Palliative care clinicians occasionally encounter patients with emotional, existential, or spiritual suffering, which persists despite optimal existing treatments. Such suffering may rob people of a sense that life is worth living. Data from Oregon show that most terminally people who obtain prescriptions to intentionally end their lives are motivated by non-physical suffering. This paper overviews the history of this class...
64 citations
TL;DR: Although racial/ethnic minorities receive more intense, non-beneficial healthcare at the end of life, the role of race/ethnicity independent of other social determinants of heal....
Abstract: Background: Although racial/ethnic minorities receive more intense, nonbeneficial healthcare at the end of life, the role of race/ethnicity independent of other social determinants of heal...
56 citations
TL;DR: A comprehensive public awareness campaign about palliative care (including advance care planning and end-of-life decision making) should be based on clear and shared terminology, use well piloted materials, and the full range of mass media to suit different ages, cultures, and religious/spiritual perspectives.
Abstract: Objective: The right to health includes a right of access to good quality palliative care, but inequalities persist. Raising awareness is a key plank of the public health approach to palliative care, but involves consideration of subjects most of us prefer not to address. This review addresses the question: “do public health awareness campaigns effectively improve the awareness and quality of palliative care”? Background: The evidence shows that public awareness campaigns can improve awareness of palliative care and probably improve quality of care, but there is a lack of evidence about the latter. Methods: Rapid review and synthesis. Results: A comprehensive public awareness campaign about palliative care (including advance care planning and end-of-life decision making) should be based on clear and shared terminology, use well piloted materials, and the full range of mass media to suit different ages, cultures, and religious/spiritual perspectives. Arts and humanities have a role to play in allo...
54 citations
TL;DR: Racial and ethnic minorities may be disadvantaged in the quality of care they receive if they have a serious illness and are unable to make decisions for themselves because most have not talked to anyone about their goals, values, or preferences for care.
Abstract: Background: Few studies have focused on racial and ethnic differences in advance care planning other than advance directives among population-based samples of adults across the lifespan. M...
52 citations
TL;DR: The role of caregivers in existing systems of care is examined, needed changes in structures and processes are identified, and how these changes might be monitored and assessed and who should be accountable for implementing them are described.
Abstract: Background: Although family caregivers provide a significant portion of health and support services to adults with serious illness, they are often marginalized by existing healthcare systems and procedures. Objective: We examine the role of caregivers in existing systems of care, identify needed changes in structures and processes, and describe how these changes might be monitored and assessed and who should be accountable for implementing them. Design: Based on a broad assessment of the caregiving literature, the recent National Academy of Sciences Report on family caregiving, and descriptive data from two national surveys, we describe structural and process barriers that limit caregivers' ability to provide effective care. Subjects: To describe the unique challenges and impacts of caring for seriously ill patients, we report data from a nationally representative sample of older adults and their caregivers (National Health and Aging Trends Study [NHATS]; National Study of Caregiving [NSOC]) to i...
51 citations
TL;DR: A set of concise, clinically relevant recommendations, informed by expert opinion, to improve the state of ACP documentation in the EHR are offered.
Abstract: Objective: To develop a set of clinically relevant recommendations to improve the state of advance care planning (ACP) documentation in the electronic health record (EHR). Background: Advance care planning (ACP) is a key process that supports goal-concordant care. For preferences to be honored, clinicians must be able to reliably record, find, and use ACP documentation. However, there are no standards to guide ACP documentation in the electronic health record (EHR). Methods: We interviewed 21 key informants to understand the strengths and weaknesses of EHR documentation systems for ACP and identify best practices. We analyzed these interviews using a qualitative content analysis approach and subsequently developed a preliminary set of recommendations. These recommendations were vetted and refined in a second round of input from a national panel of content experts. Results: Informants identified six themes regarding current inadequacies in documentation and accessibility of ACP information and opp...
50 citations
TL;DR: In the search for feasible, reliable, and valid palliative care quality metrics, the EHR is an attractive option for collecting quality data on large numbers of seriously ill patients, however, important challenges to using EHR data for quality improvement and accountability exist.
Abstract: Background: As our population ages and the burden of chronic illness rises, there is increasing need to implement quality metrics that measure and benchmark care of the seriously ill, including the delivery of both primary care and specialty palliative care. Such metrics can be used to drive quality improvement, value-based payment, and accountability for population-based outcomes. Methods: In this article, we examine use of the electronic health record (EHR) as a tool to assess quality of serious illness care through narrative review and description of a palliative care quality metrics program in a large healthcare system. Results: In the search for feasible, reliable, and valid palliative care quality metrics, the EHR is an attractive option for collecting quality data on large numbers of seriously ill patients. However, important challenges to using EHR data for quality improvement and accountability exist, including understanding the validity, reliability, and completeness of the data, as wel...
49 citations
TL;DR: Findings suggest that psychotherapy for individuals with serious illnesses appropriate for palliative care can mitigate symptoms of depression and anxiety and improve quality of life.
Abstract: Background: Research on the effectiveness of evidence-based practices in the treatment of depression and anxiety with palliative care populations is primarily limited to individuals having...
TL;DR: Surgeons valued palliative and end-of-life care but reported multilevel barriers to its provision, including culture and lack of documentation and appropriate resources.
Abstract: Background: Nearly 20% of colorectal cancer (CRC) patients present with potentially incurable (Stage IV) disease, yet their physicians do not integrate cancer treatment with palliative care. Compared with patients treated by primary providers, surgical patients with terminal diseases are significantly less likely to receive palliative or end-of-life care. Objective: To describe surgeon perspectives on palliative and end-of-life care for patients with Stage IV CRCs. Design: This is a convergent mixed methods study using a validated survey instrument from the Critical Care Peer Workgroup of the Robert Wood Johnson Foundation's Promoting Excellence in End-of-Life Care Project with additional qualitative questions. Settings: Participants were all current, nonretired members of the American Society of Colon and Rectal Surgeons. Main Outcome Measures: Surgeon-perceived barriers to palliative and end-of-life care for patients with Stage IV CRCs were identified. Results: Among 131 Internet survey respond...
TL;DR: The metasynthesis of effective palliative homecare models, as well as, the values of those who use and provide these services, illuminates the underpinning elements of quality home-based care for patients with a life-limiting illness.
Abstract: Objective: The home is an important and often preferable setting of palliative care. While much research has demonstrated the benefits of specialized palliative homecare on patient and system outcomes, there has been little delineation of the underlying components of these efficacious programs. We synthesized the essential elements of palliative homecare from a combined review of successful programs, perspectives of patients and caregivers, and views of healthcare providers in palliative care. Methods: Five unique palliative homecare studies were included in the rapid review and synthesis—(1) systematic review of the components of efficacious programs; (2) in-depth analysis of 11 effective community-based teams; (3) survey of bereaved caregivers; (4) survey of the general public; and (5) interviews of providers and administrators. A qualitative approach was used to identify transcending themes across the studies. Results: Six essential elements of quality palliative homecare were common across th...
TL;DR: A broad overview on the prognostic value of the PPS tool for survival among multiple patient populations across care settings is provided and consistent reporting of PPS scores would facilitate the comparison of survival estimates across end-of-life diagnoses.
Abstract: Background: The Palliative Performance Scale (PPS) has been widely used for survival prediction among patients with cancer; however, few studies have reviewed PPS scores in heterogeneous p...
TL;DR: As time and resources limit current training, utilization of interdisciplinary educational teams and nationally available PC educational material may improve implementation of PC education in these residency programs.
Abstract: Background: Palliative care (PC) needs in patients with neurological diseases are becoming more recognized by neurologists and PC physicians. Objective: To qualify and quantify the PC educ...
TL;DR: The authors' analyses provide evidence of the reliability and validity of CAHPS Hospice Survey measure scores and highlight important opportunities to improve the quality of hospice care, particularly with regard to addressing symptoms of anxiety and sadness, discussing side effects of pain medicine, and keeping family informed of the patient's condition.
Abstract: Background: Increasingly, dying patients and their families have a choice of hospice providers. Care quality varies considerably across providers; informing consumers of these differences ...
TL;DR: The international evidence that measurement of indicators of desired outcomes improves the quality of and access to palliative care is reviewed, in order to apply them to the Canadian context is reviewed.
Abstract: Background: Measuring performance for palliative care is complex as care is delivered in many sites, over time and jointly to the patient and family. Measures of structural processes do not necessarily capture aspects that are important to patients and families nor reflect holistic multidisciplinary outcomes of care. This article focuses on the question as to whether measurement of patient-reported outcome measures improves the outcomes of quality and access to palliative care. Objectives: To review the international evidence that measurement of indicators of desired outcomes improves the quality of and access to palliative care, in order to apply them to the Canadian context. Design: Rapid review. Setting: Canadian context. Findings: This review identified six systematic reviews and forty-seven studies that describe largely national efforts to arrive at a consensus as to what needs to be measured to assess quality of palliative care. Patient-reported outcome measures (PROMs) are becoming more pr...
TL;DR: Comprehensive national strategies appear to improve access to high quality palliative care for persons with serious illness and their families and a focus on enhancing the evidence base and developing a national system of quality reporting is found.
Abstract: Objective: To identify barrier to achieving universal access to high quality palliative care in Canada, review published national strategies and frameworks to promote palliative care, examine key aspects that have been linked to successful outcomes, and make recommendations for Canada. Background: In 2014, the World Health Organization called on members to develop and implement policies to ensure palliative care is integrated into national health services. Methods: Rapid review supplemented by the author's personal files, outreach to colleagues within the international palliative care community, review of European Association for Palliative Care publications, and a subsequent search of the table of contents of the major palliative care journals. Results: Frameworks were found for 10 countries ranging from detailed and comprehensive multi-year strategies to more general approaches including laws guaranteeing access to palliative care services for “dying” patients or recommendations for the develop...
University of Navarra1, Cairo University2, University of Texas MD Anderson Cancer Center3, Memorial Sloan Kettering Cancer Center4, African Palliative Care Association5, Transylvania University6, George Washington University7, Pallium India8, Catholic University of Korea9, Icahn School of Medicine at Mount Sinai10
TL;DR: This white paper represents a position statement of the PAV developed through a consensus process in regard to advocacy strategies for the advancement of PC in the world.
Abstract: Background: The Pontifical Academy for Life (PAV) is an academic institution of the Holy See (Vatican), which aims to develop and promote Catholic teachings on questions of biomedical ethi...
TL;DR: Managing the medical needs of children with CCI can be associated with clinician and parent burnout, and strategies to support clinicians and families are needed to ensure high quality of care and maintain an appropriate number of clinical providers.
Abstract: Background: Children with chronic critical illness (CCI), those children with repeated and prolonged hospitalizations along with technology-dependence or multiple organ system involvement, are increasing in number. The intensive daily needs of these children, during hospitalization and at home, affect both clinicians and families. Objective: To assess clinician experiences of burnout and clinician perceptions of family burnout in caring for children with CCI. Design: Semistructured interviews with 44 stakeholders known for pediatric CCI expertise were audio-recorded and transcribed. Participants characterized their experiences with provider and family burnout. Setting/Subjects: Stakeholders were from five metropolitan areas, representing a variety of professions (i.e., inpatient/outpatient clinicians, home health providers, and policy professionals). Measurements: Content analysis was performed on interview transcripts. Results: Participants reported that both clinicians and families caring for c...
TL;DR: Prognostic uncertainty is a prevalent source of distress among hospitalized patients with advanced cancer at the time of initial palliative care consultation and is associated with lower levels of preconsultation QOL and with greater pre-post consultation improvement in the QOL.
Abstract: Background: Prognostic uncertainty is common in advanced cancer and frequently addressed during palliative care consultation, yet we know little about its impact on quality of life (QOL) Objective: We describe the prevalence and distribution of distress due to prognostic uncertainty among hospitalized patients with advanced cancer before palliative care consultation We evaluate the association between this type of distress and overall QOL before and after palliative care consultation Design: Observational cohort study Setting & Participants: Hospitalized patients with advanced cancer who receive a palliative care consultation at two geographically distant academic medical centers Measurements: At the time of enrollment, before palliative care consultation, we asked participants: “Over the past two days, how much have you been bothered by uncertainty about what to expect from the course of your illness?” (Not at all/Slightly/Moderately/Quite a Bit/Extremely) We defined responses of “Quite a
TL;DR: A summary of research-to-date on family and medical provider perceptions of communication during pediatric EOL care and how communication between medical teams and families can be facilitated suggests families may benefit from enhanced communication around EOL planning.
Abstract: Background: Communication is key in optimizing medical care when a child is approaching end of life (EOL). Research is yet to establish best practices for how medical teams can guide intrafamily communication (including surviving siblings) when EOL care is underway or anticipated for a pediatric patient. While recommendations regarding how medical teams can facilitate communication between the medical team and the family exist, various barriers may prevent the implementation of these recommendations. Objective: This review aims to provide a summary of research-to-date on family and medical provider perceptions of communication during pediatric EOL care. Design: Systematic review. Results: Findings from a review of 65 studies suggest that when a child enters EOL care, many parents try to protect their child and/or themselves by avoiding discussions about death. Despite current recommendations, medical teams often refrain from discussing EOL care with pediatric patients until death is imminent for ...
TL;DR: The resources required to ensure adequate education, training, and mentorship for nurses and nursing care providers who care for Canadians experiencing life-limiting illness and their families are reviewed.
Abstract: Background: Nurses and nursing care providers provide the most direct care to patients at end of life. Yet, evidence indicates that many feel ill-prepared for the complexity of palliative care. Objective: To review the resources required to ensure adequate education, training, and mentorship for nurses and nursing care providers who care for Canadians experiencing life-limiting illness and their families. Methods: This is a systematic search and narrative review in the Canadian context. Results: Six previous reviews and 26 primary studies were identified. Studies focusing on regulated nurses indicated that even amid variability in content, delivery methods, and duration, palliative education improves nurses' knowledge, confidence, attitudes, and communication abilities, and decreases nurses' stress. Results from palliative education in undergraduate curriculum were less definitive. However, studies on palliative simulation in undergraduate education suggest that it improves knowledge and confiden...
TL;DR: While dementia severity was associated with greater likelihood of having documented any AD, almost 4 in 10 residents with dementia lacked any AD and effective outreach may focus efforts on subgroups with lower odds of any AD or living wills.
Abstract: Objective: To describe prevalence and content of AD documentation among NH residents by dementia stage. Background: The prevalence of advance directives (ADs) among nursing home (NH) residents with mild, moderate, and advanced dementia remains unclear. Methods: Population-based, cross-sectional study of all licensed NHs in five U.S. states. Subjects included all long-stay (>90 day) NH residents with dementia, aged ≥65 years, and a Cognitive Performance Scale (CPS) score ≥1 from the 2007 to 2008 Minimum Data Set 2.0 (n = 180,621). Dementia severity was classified as follows: mild (CPS 1–2), moderate (CPS 3–4), and advanced (CPS 5–6). Measurements: ADs were defined as the presence of a living will, do-not-resuscitate order, do-not-hospitalize order, medication restriction, or feeding restriction). Results: Overall, 59% of residents had any AD and 17% had a living will. Prevalence of any AD increased by dementia severity: mild (51.2%), moderate (58.2%), and advanced (61.5%) (p < 0.001). In adjusted ...
TL;DR: The bucket list is a simple framework that can be used to engage patients about their healthcare decision making and aid clinicians in relating each treatment option to its potential impact on the patient's life and life goals to promote informed decision making.
Abstract: Background: To provide preference-sensitive care, we propose that clinicians might routinely inquire about their patients' bucket-lists and discuss the impact (if any) of their medical treatments on their life goals Methods: This cross-sectional, mixed methods online study explores the concept of the bucket list and seeks to identify common bucket list themes Data were collected in 2015–2016 through an online survey, which was completed by a total of 3056 participants across the United States Forty participants who had a bucket list were identified randomly and used as the development cohort: their responses were analyzed qualitatively using grounded theory methods to identify the six key bucket list themes The responses of the remaining 3016 participants were used for the validation study The codes identified from the development cohort were validated by analyses of responses from 50 randomly drawn subjects from the validation cohort All the 3016 validation cohort transcripts were coded fo
TL;DR: A subanalysis of patients with known date of first pharmacist visit found significantly improved LOS, LTC, and CTD for patients with early access to palliative pharmacy compared to those without early access.
Abstract: Introduction: Palliative care uses a team approach, including physicians, nurses, social workers, chaplains, and pharmacists. The pharmacist's role within palliative care teams is increasi...
TL;DR: A mixed-methods pilot randomized controlled trial in which patient-caregiver pairs were randomized to receive specialty palliative care, in addition to standard oncology care versus standard onCology care alone did not achieve feasibility goals.
Abstract: Background: Patients with advanced pancreatic cancer suffer from high morbidity and mortality. Specialty palliative care may improve quality of life. Objective: Assess the feasibility, acceptability, and perceived effectiveness of early specialty physician-led palliative care for patients with advanced pancreatic cancer and their caregivers. Design: A mixed-methods pilot randomized controlled trial in which patient-caregiver pairs were randomized (2:1) to receive specialty palliative care, in addition to standard oncology care versus standard oncology care alone. Setting/Subjects: At a National Cancer Institute-designated comprehensive cancer center in Western Pennsylvania, 30 patients with advanced pancreatic adenocarcinoma and their caregivers (N = 30), oncologists (N = 4), and palliative care physicians (N = 3) participated. Measurements: Feasibility (enrollment, three-month outcome-assessment, and intervention completion rates), acceptability, and perceived effectiveness (process interviews w...
TL;DR: It is suggested that racial/ethnic minority patients with HM have higher utilization of care at the end-of-life and lower rates of advance directives compared with NHW patients.
Abstract: Background: Racial/ethnic minority patients with nonhematologic malignancies (non-HM) have lower rates of hospice care, advance directive use, and palliative care utilization than non-Hisp...
TL;DR: Exploring place of care trajectories in the last two weeks of life can illuminate end-of-life utilization patterns not evident when reporting solely place of death.
Abstract: Background/Objectives: Place of death is a commonly reported indicator of palliative care quality, but does not provide details of service utilization near end of life. This study aims to ...
TL;DR: The surprise question identifies inpatients with advanced solid or hematologic cancers having poor QOL and frequent depressive symptoms and the surprise question is a practical method to identify those with unmet palliative care needs.
Abstract: Background: Little is known about quality of life (QOL), depression, and end-of-life (EOL) outcomes among hospitalized patients with advanced cancer. Objective: To assess whether the surpr...