Practice Guidelines For Palliative Care Research Articles

Opportunities for Expanding the Integration of Palliative Care in Oncology Care.

Patients with cancer and their families comprise a significant population served by palliative care. Close collaboration between oncology clinicians and palliative care teams has demonstrated improved patient-centered care, especially when this care is integrated early in the course of the disease. The American Society of Clinical Oncology recently released their updated clinical practice guidelines for palliative care in oncology, which provide new opportunities for collaboration to expand the scope of care.

Subspecialty Training: Hospice and Palliative Medicine.

Physiatrists care for patients and families with complex medical needs, and primary palliative care is an important part of the comprehensive rehabilitation care plan. Palliative care improves patient and family quality of life and reduces healthcare costs. Clinical care guidelines for several physiatry patient populations now include the provision of palliative care.Current Accreditation Council for Graduate Medical Education physiatry residency program requirements include foundational palliative care skills. Similarly, current clinical palliative care practice guidelines enumerate standards that apply to the rehabilitation setting. However, there is a dearth of literature on the current state of palliative care training within physiatry programs, and hospice and palliative medicine remains one of the least subscribed physiatry subspecialties.In this article, we describe palliative care, highlight existing literature on palliative care needs within physiatry patient populations, and identify a core physiatry-palliative care skillset. We look both within physiatry and across other specialties to guide recommendations for palliative care education within physiatry residency programs. We also describe opportunities for post-residency fellowship training in hospice and palliative medicine.

Mind the gap: Patients’ experiences and perceptions of goal setting in palliative care

Background: Palliative care aims to support people to live actively until death. A rehabilitative approach which includes goal setting could be an important way of achieving this. Goal setting is well established in best practice guidelines for palliative care. However little is known about how the process of goal setting actually happens in practice, especially from patients’ points of view. We aimed to investigate patients’ expectations, experience and perceptions of goal setting in one hospice.Methods: We conducted 15 semi-structured interviews with a sample of patients who had been admitted to a Scottish hospice for symptom control. Interviews were digitally recorded, transcribed verbatim and analysed using Framework Analysis.Results: Participants understood and valued goal setting but did not always share their goals with hospice staff. These were often participants’ own personal activity-based goals that they worked on in parallel, but not always in partnership with hospice professionals. Participants were able to adapt their goals as their situation changed.Conclusions: Our findings revealed a gap between the goals that participants identified and worked towards compared with those that participants perceived the professionals focussed on. As a result, opportunities were missed for patients and professionals to work together to achieve goals.

Natural Language Processing Accurately Measures Adherence to Best Practice Guidelines for Palliative Care in Trauma

ContextThe Trauma Quality Improvement Program Best Practice Guidelines recommend palliative care (PC) concurrent with restorative treatment for patients with life-threatening injuries. Measuring PC delivery is challenging: administrative data are nonspecific, and manual review is time intensive. ObjectivesTo identify PC delivery to patients with life-threatening trauma and compare the performance of natural language processing (NLP), a form of computer-assisted data abstraction, to administrative coding and gold standard manual review. MethodsPatients 18 years and older admitted with life-threatening trauma were identified from two Level I trauma centers (July 2016—June 2017). Four PC process measures were examined during the trauma admission: code status clarification, goals-of-care discussion, PC consult, and hospice assessment. The performance of NLP and administrative coding were compared with manual review. Multivariable regression was used to determine patient and admission factors associated with PC delivery. ResultsThere were 76,791 notes associated with 2093 admissions. NLP identified PC delivery in 33% of admissions compared with 8% using administrative coding. Using NLP, code status clarification was most commonly documented (27%), followed by goals-of-care discussion (18%), PC consult (4%), and hospice assessment (4%). Compared with manual review, NLP performed more than 50 times faster and had a sensitivity of 93%, a specificity of 96%, and an accuracy of 95%. Administrative coding had a sensitivity of 21%, a specificity of 92%, and an accuracy of 68%. Factors associated with PC delivery included older age, increased comorbidities, and longer intensive care unit stay. ConclusionNLP performs with similar accuracy with manual review but with improved efficiency. NLP has the potential to accurately identify PC delivery and benchmark performance of best practice guidelines.

Inviting Ourselves to the Party: Cystic Fibrosis as a Model for Implementing Palliative Care Practice, Research, and Policy in "New Diseases” (FR439)

•Describe the opportunities and challenges involved in developing an outpatient palliative care clinic for patients with cystic fibrosis.•Describe a patient-centered model for developing a palliative care intervention in a disease population without much palliative care evidence, as well as the challenges in conducting clinical research in CF palliative care. Cystic fibrosis is a chronic, progressive, and fatal disease. Individuals living with CF suffer from myriad physical and psychosocial burdens that dramatically degrade patient and caregiver quality of life. Although the evidence base for palliative care in CF is scant, patients living with CF and their caregivers undoubtedly possess palliative needs. Yet, no established model of PC exists for this population of high-need patients. Distinctive characteristics of CF, such as its lifelong nature, unpredictable trajectory, advancing therapies that may alter the course of illness dramatically for some, and the complexities of lung transplantation merit evaluation of how PC should be designed for CF. CF is one of many underrepresented disease populations with palliative needs, yet without as strong an evidence base or clinical presence as other classic palliative care populations (e.g., oncology). This multidisciplinary, multi-institutional panel of clinicians and researchers in palliative care, pulmonology, and nursing will highlight opportunities and challenges of “breaking into” new disease populations, using CF as an exemplar. First, we will present a multi-pronged approach of identifying palliative needs in CF using qualitative methods and a nationwide survey, to aid in building support for and developing clinical programs. Second, we will describe the process and lessons learned during the development and conduct of the first clinical trial of palliative care in CF. Third, we will share insights on developing an outpatient CF palliative care clinic. Lastly, we will discuss our experiences with developing practice guidelines for palliative care in populations where need and enthusiasm exist, despite little evidence. Lessons learned in this session will be applicable to other fledgling populations with less established research and clinical presence from palliative care. Through shared learning, this forum will nurture future work to level the playing field so that all patients with life-limiting illness benefit from palliative care, regardless of disease.

Patient- and Caregiver-Reported Assessment Tools for Palliative Care: Summary of the 2017 Agency for Healthcare Research and Quality Technical Brief

ContextAssessment tools are data collection instruments that are completed by or with patients or caregivers and which collect data at the individual patient or caregiver level. ObjectivesThe objectives of this study are to 1) summarize palliative care assessment tools completed by or with patients or caregivers and 2) identify needs for future tool development and evaluation. MethodsWe completed 1) a systematic review of systematic reviews; 2) a supplemental search of previous reviews and Web sites, and/or 3) a targeted search for primary articles when no tools existed in a domain. Paired investigators screened search results, assessed risk of bias, and abstracted data. We organized tools by domains from the National Consensus Project Clinical Practice Guidelines for Palliative Care and selected the most relevant, recent, and highest quality systematic review for each domain. ResultsWe included 10 systematic reviews and identified 152 tools (97 from systematic reviews and 55 from supplemental sources). Key gaps included no systematic review for pain and few tools assessing structural, cultural, spiritual, or ethical/legal domains, or patient-reported experience with end-of-life care. Psychometric information was available for many tools, but few studies evaluated responsiveness (sensitivity to change) and no studies compared tools. ConclusionFew to no tools address the spiritual, ethical, or cultural domains or patient-reported experience with end-of-life care. While some data exist on psychometric properties of tools, the responsiveness of different tools to change and/or comparisons between tools have not been evaluated. Future research should focus on developing or testing tools that address domains for which few tools exist, evaluating responsiveness, and comparing tools.

Family caregiving for persons with heart failure at the intersection of heart failure and palliative care: a state-of-the-science review.

Many of the 23 million individuals with heart failure (HF) worldwide receive daily, unpaid support from a family member or friend. Although HF and palliative care practice guidelines stipulate that support be provided to family caregivers, the evidence base to guide care for this population has not been comprehensively assessed. In order to appraise the state-of-the-science of HF family caregiving and recommend areas for future research, the aims of this review were to summarize (1) how caregivers influence patients, (2) the consequences of HF for caregivers, and (3) interventions directed at HF caregivers. We reviewed all literature to December 2015 in PubMed and CINAHL using the search terms "heart failure" AND "caregiver." Inclusion criteria dictated that studies report original research of HF family caregiving. Articles focused on children or instrument development or aggregated HF with other illnesses were excluded. We identified 120 studies, representing 5700 caregivers. Research on this population indicates that (1) caregiving situations vary widely with equally wide-ranging tasks for patients to help facilitate their health behaviors, psychological health and relationships, and quality of life (QoL); (2) caregivers have numerous unmet needs that fluctuate with patients' unpredictable medical status, are felt to be ignored by the formal healthcare system, and can lead to distress, burden, and reduced QoL; and (3) relatively few interventions have been developed and tested that effectively support HF family caregivers. We provide recommendations to progress the science forward in each of these areas that moves beyond descriptive work to intervention development and clinical trials testing.

Teamwork and Perceptions of Palliative Care Quality

Palliative care practice guidelines recommend experts collaborate on interdisciplinary teams to ensure high-quality care. However, there is limited knowledge of how various palliative care teamwork structures and processes influence care quality. This study describes palliative care team structures (eg, certification, setting) and processes (eg, leadership, communication) and examines their influence on perceptions of palliative care quality. A cross-sectional design addresses the research aims. Providers completed an online survey from May 2013 to May 2014 that included demographic and organizational questions, and the TeamSTEPPS Teamwork Perceptions Questionnaire. Of the 460 participants with outcome data, 81.1% were registered nurses; 89.9% were female. Most participants reported care quality as excellent in their settings (50.4%). Excellent quality was associated with male gender (P = .032), formal team membership (P = .001), hospice/palliative care unit employment (P < .000), non–acute care settings (P = .040), less education (P = .016), and collaborating with more disciplines (P = .003). All TeamSTEPPS scales were associated with excellent quality of care (P < .000). In the logistic model, team structure (odds ratio [OR], 1.132; confidence interval [CI], 1.047-1.225; P = .002), communication (OR, 1.095; CI, 1.014-1.182; P = .021), and collaboration with more disciplines (OR, 1.138; CI, 1.030-1.253; P = .011) were associated with excellent care quality. Interprofessional education and enhanced organizational structures to encourage collaboration may improve palliative care quality.

Implementation of NCCN Palliative Care Guidelines by member institutions.

Increasingly, evidence suggests the integration of palliative care (PC) with standard oncologic care can yield substantial benefits. As part of an effort to improve the PC of cancer patients, the National Comprehensive Cancer Network (NCCN) has developed clinical practice guidelines for PC that promote access to quality, evidence-based PC. This study sought to characterize current implementation of the guidelines by NCCN member institutions. Institutional representatives appointed to the NCCN Palliative Care Guidelines Panel were asked to complete an online survey in the spring of 2014. The survey focused on availability of PC services, screening and referral practices for PC, PC education, and quality improvement programs. The survey was completed by representatives from 21 of 25 NCCN member institutions (84 %). A majority routinely provides PC services via interdisciplinary teams; 52 % routinely inform patients of the availability, elements, and benefits of PC. The guidelines are most often used to guide clinical practice; only 10 % reported using the guidelines to formally screen for PC needs and/or make referrals to PC specialists. Among the 62 % of institutions that screen any patients using any available criteria, when a patient screens positive for PC needs, a referral to a PC specialist is made less than half the time. Implementation of PC Guidelines is incomplete and various aspects of the guidelines, such as the recommendation to screen all patients for PC needs, are applied inconsistently. Despite this, most institutions provide PC services in a manner consistent with the guidelines. Greater implementation of the guidelines' recommendations is needed.

Developing Palliative Care Practice Guidelines and Standards for Nursing Home–Based Palliative Care Teams: A Delphi Study

ContextLack of nursing home (NH)-specific palliative care practice guidelines has been identified as a barrier to improving palliative and end-of-life (EOL) quality of care. ObjectivesThe objectives of this study were to (1) assess which of the guidelines developed by the National Consensus Project, and the corresponding preferred care practices endorsed by the National Quality Forum, are important and feasible to implement in NHs; and (2) identify the operational standards for palliative care teams in NHs. MethodsTwo-round mail Delphi study. Based on the existing literature, a set of 7 domains with associated 22 palliative practice guidelines was drafted. We invited 48 NH leaders, including clinicians, to review the importance (10-point Likert scale) and the feasibility (5-point Likert scale) of these guidelines. Participants were also asked about palliative care team composition rounding frequency. ResultsThe response rate to both rounds was 85%. With regard to importance, the mean rating for all guidelines was 8 or higher (ie, highly important), but there was variability in agreement with regard to 5 of the guidelines. The same 5 guidelines were also considered more difficult to implement (eg, costly, unrealistic). Overall, 17 palliative care guidelines were identified for use by NH palliative care teams. Five disciplines (social work, certified nurse assistant, nurse, physician, and nurse practitioner or physician assistant) were identified as comprising a core team and 3 were proposed as extended or ad hoc members. ConclusionThe palliative care guidelines and team standards identified in this study may be helpful in providing practical direction to NH administrators and staff looking to improve palliative care practice for their residents.

Improving the End-of-Life Experience in Singapore: Building Capacity in Palliative Care Education and Research

palliative care skills and knowledge, these opportunities need to be expanded to include other cadres of healthcare professionals such as social workers and pharmacists. The latter groups, in particular, have clear lack of training opportunities in this fi eld. In addition, having clinical guidelines to ensure consistent standards of care across institutions and individual practices will also improve the quality of EOL care being provided. At present, Singapore has no national clinical practice guidelines for palliative care, though talks are underway with the Ministry of Health to address this gap. EOL care can also be improved through high quality research efforts. This research needs to be methodologically rigorous, outcomes based and with clear implications for patient care and policy making. For instance, there is a lack of comprehensive data regarding cost and utilisation of services across the various entities that provide care to dying patients. World Innovation Summit for Health (WISH) EOL Report 2013,5 authored by luminaries in health policy and palliative care, highlighted the importance of quantifying the cost of dying and determining ways to lower costs while improving quality of care. Availability of such data in Singapore could be useful for identifying inappropriate use of services, quality improvement initiatives, resource allocation and budgeting, and for policy analysis, including analyses of upcoming changes to Medishield, which are expected to increase coverage (and likely expenditures) for EOL services. More formative research is also needed in several areas, including pain management, understanding patient preferences, improving fi nancing models, and in health and risk communication, among others. Patient care can be seriously compromised if interventions are accepted into routine practice without high quality evidence of effectiveness in the local context; the type of evidence that typically only comes via randomised controlled trials (RCTs), which are the gold standard in building an evidence base. Take, for example, the Liverpool EOL care pathway. This pathway was widely implemented

Hospices' Preparation and Practices for Quality Measurement

Context Hospice and palliative care organizations need to measure and analyze quality of care, in response to national palliative care practice guidelines and new hospice regulatory requirements. Little is known about hospices' readiness to meet this new mandate. Objectives We analyzed data from a national survey of hospices to describe preparation and practices for quality measurement and research and to examine associated organizational characteristics. Methods Web-based survey of hospice staff responsible for quality of care. Results Survey respondents represented 652 National Hospice and Palliative Care Organization (NHPCO) member hospice organizations; 52% were participating in the NHPCO Quality Partners program. Most of these hospices involve clinical providers in decisions to change care practices (69%) and participate in quality improvement projects (64%), but research participation is uncommon (16%). Many hospices collect data about staff certification and training (76%) and use family surveys to measure care quality (70%). A minority of hospices have clinical data in electronic format (13%–29%). Large size, multiple sites, government ownership, and presence of a change leader in the organization were the characteristics associated with greater preparation for quality improvement and research. Conclusion Current organizational activities, data collection rates, and use of electronic data systems may limit hospices' preparation and practices related to quality improvement and research participation; larger size and designation of a change leader are associated with greater capacity. Hospices may need technical assistance and training to provide for meaningful measurement of quality of care.

The National Agenda for Quality Palliative Care: The National Consensus Project and the National Quality Forum

The release in 2007 of the National Quality Forum (NQF) preferred practices is a significant advance in the field of palliative care. These NQF preferred practices build on the clinical practice guidelines for palliative care developed by the National Consensus Project (NCP). The NQF is dedicated to improving the quality of American health care, and their focus on palliative care recognizes its growing place within the broader scope of health care. This article reviews the work of both the NCP and NQF and presents the domains and preferred practices that should guide quality improvement efforts in hospice and palliative care.