OBJECTIVES: To consider the impact of juvenile Huntington disease (JHD) from a biomedical, symptom burden, and total pain palliative care perspective.
METHODS: This case report was informed by a narrative review of the literature with inclusion of expert opinion from pediatric palliative care, an adult and pediatric neurologist, and a child psychiatrist. Audio-recorded qualitative interview and coauthorship with the pediatric patient's primary caregiver (his mother).
RESULTS: The JHD impacts all domains of child and family function.
SIGNIFICANCE OF RESULTS: Application of the concept of total pain to JHD informs and guides care for this complex, challenging condition.
BACKGROUND: Expert communication skills are essential for the delivery of effective palliative care across the domains of care. However, few health care providers receive formal communication training. To promote communication education for interdisciplinary palliative care teams, a train-the-trainer course for interdisciplinary hospital-based palliative care teams was developed to prepare them to teach other health care professionals communication skills. Course Design: The curriculum was organized by the eight domains of the National Consensus Project Guidelines for Quality Palliative Care and provided communication skills training for California-based teams. The two-day train-the-trainer course included skill-building exercises and interactive discussions to assist participants in integrating communication skills building into their clinical settings. Using a goal-directed method of teaching, faculty assisted teams in developing three institutional goals for providing palliative care communication training to other health care professionals. Evaluation of the course included immediate postcourse evaluation and follow-up evaluation at six and nine months.
RESULTS: The first statewide interdisciplinary communication training took place in January 2018 with 26 palliative care teams consisting of primarily nurses, followed by social workers, chaplains, and physicians. The 46 course participants' postcourse evaluations demonstrated high satisfaction with the course. On a scale of 1 to 5 (1 = lowest), the course met participants' expectations and objectives (4.8). The teams' precourse goals focused on (1) staff education, training, and mentorship, and (2) institution-wide system changes.
CONCLUSION: Palliative care interdisciplinary teams can incorporate communication skills into their practice and provide communication skills training to their institutions.
BACKGROUND: Palliative care guidelines and quality measures have been developed in many countries to improve the quality of care. The challenge is to implement quality measures nationally to improve quality of care across all settings.
OBJECTIVE: This article describes the development and implementation of National Guidelines for Palliative Care (NGPC) in Singapore.
DESIGN: The NGPC was developed through literature review, multidisciplinary inputs, and modified RAND Delphi method. Quality measures for the guidelines were developed through literature review and multidisciplinary inputs and implemented with an audit of specialist palliative care providers.
RESULTS: The NGPC consisted of 13 guidelines and 64 quality measures. A total of 11 palliative care services (73.3%) participated in the audit from September 2015 to October 2015. National-level and service-level gaps in quality of care were identified and individual providers identified priority areas for improvement.
CONCLUSION: We successfully developed the national palliative care guidelines and quality measures. We implemented voluntary self-assessment among health care institutions in various settings nationally that serve to catalyze quality improvement and cultivate a culture of quality improvement.
Existential suffering is commonly experienced by patients with serious medical illnesses despite the advances in the treatment of physical and psychological symptoms that often accompany incurable diseases. Palliative care (PC) clinicians wishing to help these patients are faced with many barriers including the inability to identify existential suffering, lack of training in how to address it, and time constraints. Although mental health and spiritual care providers play an instrumental role in addressing the existential needs of patients, PC clinicians are uniquely positioned to coordinate the necessary resources for addressing existential suffering in their patients. With this article, we present a case of a patient in existential distress and a framework to equip PC clinicians to assess and address existential suffering.
Background: Therapeutic cannabis is being more widely used by patients to manage multiple symptoms, but the patterns of use in the palliative care population are not well defined.
Objective: The primary aim of this pilot study was to describe the use of cannabis among patients attending a palliative care clinic (PCC).
Design: The study was a retrospective chart review of patients seen at four different interval points during 2017 and 2018 in an ambulatory palliative care setting.
Setting/Subjects: The study was conducted at a 396-bed rural academic medical center in the PCC, where the majority of patients have oncological diseases.
Results: Clinicians saw 299 unique patients during the four one-month time periods reviewed. Eighty-three patients (27%) reported use of any form of cannabis. The most common reasons for cannabis use were pain (n = 49, 59%), anorexia (n = 16, 19%), insomnia (n = 14, 17%), nausea (n = 13, 16%), anxiety (n = 8, 10%), and depression (n = 5, 6%). Twenty-six patients (31%) used cannabis for more than one symptom. Among the 83 patients using cannabis, 60 (72%) were also prescribed opioids with 32% on immediate-release only and 25% on both immediate- and extended-release opioids. These 60 patients on opioids and cannabis represent 33% of all patients prescribed opioids in this clinic. Tetrahydrocannabinol was present in 25% of the 73 urine drug screens.
Conclusions: Our data show a significant minority of patients in a PCC use cannabis. Further research should focus on more detailed information about formulation use, methods of ingestion, perceived efficacy, side effects, cost, and standardization of clinical practices. Given the prevalence of cannabis use, further research into its efficacy, side effects, and safety is needed, including whether patients with prior/active substance use receive more or less benefit or harm from cannabis use.
BACKGROUND: Lung transplant recipients who experience serious illness could benefit from specialty palliative care (SPC), but evidence suggests that referral has been rare.
OBJECTIVE: Examine the characteristics of post-transplant SPC encounters, utilization trends, and patient characteristics associated with SPC at a center with established SPC services.
DESIGN: Retrospective cohort study of SPC utilization by 597 lung transplant recipients transplanted between 2010 and 2015. We collected data on pretransplant demographics and post-transplant SPC encounters, including timing, location, and referral reasons. Cumulative incidence of SPC and patient characteristics associated with SPC were examined by competing risks methods. Utilization in the first two post-transplant years was compared between subcohorts defined by year of transplantation.
RESULTS: SPC cumulative incidence was 27% and 43% at one and five years. More than 60% of encounters occurred in the first post-transplant year including 34% during the index transplant hospitalization. Over 90% of encounters occurred in the inpatient setting. The majority of consults were for symptom management. From 2010 to 2015 inpatient utilization in the first two post-transplant years increased from 23% to 42%, and outpatient utilization increased from 2% to 16%. Accounting for increasing utilization, pretransplant SPC and double-lung transplantation were associated with greater incidence of post-transplant SPC.
CONCLUSIONS: Lung transplant recipients may have palliative care needs early after transplantation. Increasing utilization suggests greater awareness of or changing attitudes about the utility of SPC for lung transplant recipients. Understanding transplant recipients' palliative care needs and transplant physicians' views of SPC is critical to improving the provision of SPC in lung transplantation.
BACKGROUND: New population health community-based models of palliative care can result in more compassionate, affordable, and sustainable high-quality care.
OBJECTIVES: We evaluated utilization and cost outcomes of a standardized, population health community-based palliative care program provided by nurses and social workers.
DESIGN: We conducted a retrospective propensity-adjusted study to quantify cost savings and resource utilization associated with a community-based palliative care program. We analyzed claims data from a Medicare Advantage (MA) plan and used a proprietary predictive model to identify 804 members at high risk for overmedicalized end-of-life care. We enrolled 204 members in the palliative care program and compared them with 600 who received standard, telephonic, health plan case management. We excluded members with fewer than two months of enrolled experience or those with insufficient data for analysis, leaving 176 members in the study group and 570 in the control group for evaluation. We compared differences in utilization and costs (medical and pharmacy), hospital admissions, bed days (acute and intensive care unit [ICU]), and emergency department visits.
SETTING/SUBJECTS: A 30,000-member MA plan and a health system in Central Ohio between October 2015 and June 2016.
RESULTS: Members who received community-based palliative care showed a statistically significant 20% reduction in total medical costs ($619 per enrolled member per month), 38% reduction in ICU admissions, 33% reduction in hospital admissions, and 12% reduction in hospital days.
CONCLUSION: A structured nurse and social work model of community-based palliative care using a predictive model to identify MA candidates for intervention can reduce utilization and medical costs.
The purpose of this study was to describe pediatric oncology nurse managers' (NMs) perspectives of palliative care/end-of-life (PC/EOL) communication. The study, guided by group-as-a-whole theory and empirical phenomenology, was part of a larger, multisite study aimed at understanding pediatric oncology nurses' experiences of PC/EOL communication. Nurses were assigned to focus groups based on length or type of experience (i.e., nurses with <1, 2-5, or >5 years' work experience and NMs). Eleven NMs from three Midwestern pediatric hospitals with large oncology programs participated in one focus group. The participants' mean years of experience was 15.8 in nursing and 12 in pediatric oncology; 90% had a BSN or higher degree; all had supervisory responsibilities. The authors identified 2,912 meaning statements, which were then analyzed using Colaizzi's method. Findings include NMs' overall experience of "Fostering a Caring Climate," which includes three core themes: (1) Imprint of Initial Grief Experiences and Emotions; (2) Constant Vigilance: Assessing and Optimizing Family-Centered Care; and (3) Promoting a Competent, Thoughtful, and Caring Workforce. Findings indicate that pediatric oncology NMs draw on their own PC/EOL experiences and their nursing management knowledge to address the PC/EOL care learning needs of nursing staff and patient/family needs. NMs need additional resources to support nursing staff's PC/EOL communication training, including specific training in undergraduate and graduate nursing programs and national and hospital-based training programs.
The spiritual dimension is considered to be a central component of palliative care. However, healthcare professionals have difficulties incorporating the spiritual dimension into their everyday practice. We propose a new approach by looking beyond the mere functionality of care practices. Rituals and ritualized practices can serve to express and communicate meanings and values. This article explores how ritualized practices have the ability to open up space for the spiritual dimension of care in the context of palliative care.
BACKGROUND: Patients with end-stage liver disease (ESLD) have high mortality, but low utilization of palliative care. A transitional care liver clinic (TCLC), bridging inpatient hepatology care to outpatient clinics, should offer the ideal setting for advance care planning (ACP).
OBJECTIVE: To examine ACP and related outcomes for TCLC patients who died within one year of the initial TCLC visit.
DESIGN: Retrospective chart review.
SETTING: Nontransplant eligible ESLD patients, seen in TCLC postdischarge from an inpatient liver unit.
MEASUREMENTS: Charts were reviewed for demographics, clinical data, ACP discussions, code status, location of death, and palliative care consultations.
RESULTS: Of the 58 patients who showed for the initial TCLC visit, 18 (31%) died within one year. Most patients were men (67%) with alcoholic cirrhosis (72%), Child-Pugh class C (55.5%) and median age of 56 years (37–72 years). There were no ACP discussions in any TCLC visits even after subsequent hospitalizations. Until their terminal hospitalization, 17 patients (94%) remained full code. Palliative care was consulted for 10 patients (56%). Despite late initiation, within two weeks of death for 6 of those 10 patients, palliative care consultation facilitated arrangements for out-of-hospital death: at home or inpatient hospice (70% vs. 12%, p = 0.01).
CONCLUSIONS: Despite a structured program for ESLD patients, there were no ACP discussions until the terminal hospitalization. These findings support the need to integrate palliative care interventions in the management of ESLD patients, especially taking advantage of postdischarge visits.
OBJECTIVE: The objective of this update, presented at the 2018 Annual Assembly of the American Association of Hospice and Palliative Medicine (AAHPM) and the Hospice and Palliative Nurses Association (HPNA), is to identify, summarize, and critique a sampling of recent research that has the potential for marked impact on hospice and palliative clinical practice.
METHODS: In a departure from previous years, we surveyed AAHPM and HPNA members to determine focused topic areas, from which we selected candidate articles. The two topic areas selected by the membership were "Moving into the great beyond: bringing palliative care into the subspecialties" and "Improving the conversation for patients with serious illness." Seven reports of original research published between January 1, 2012 and November 3, 2017 were identified through a systematic search of relevant databases, hand searching of leading journals, and discussion with experts in the field. Candidate articles were scored and ranked independently by four reviewers based on methodological quality, appeal to a breadth of palliative care clinicians across settings, and potential for impact.
RESULTS: We summarize the seven articles with the highest ratings.
PURPOSE: The purpose of this study was to explore compassionate leadership with those involved in leading system-wide end-of-life care. Its purpose was to: define compassionate leadership in the context of palliative and end-of-life care; collect accounts of compassionate leadership activity from key stakeholders in end-of-life and palliative care; and identify examples of compassionate leadership in practice.
DESIGN/METHODOLOGY/APPROACH: Four focus groups involving staff from a range of healthcare organisations including hospitals, hospices and community teams were conducted to access the accounts of staff leading palliative and end-of-life care. The data were analysed thematically.
FINDINGS: The themes that emerged from the data included: the importance of leadership as role modelling and nurturing; how stories were used to explain approaches to leading end-of-life care; the nature of leadership as challenging existing practice; and a requirement for leaders to manage boundaries effectively. Rich and detailed examples of leadership in action were shared.
RESEARCH LIMITATIONS/IMPLICATIONS: The findings indicate that a relational approach to leadership was enacted in a range of palliative and end-of-life care settings.
PRACTICAL IMPLICATIONS: Context-specific action learning may be a means of further developing compassionate leadership capability in palliative and end-of-life care and more widely in healthcare settings.
ORIGINALITY/VALUE: This paper presents data indicating how compassionate leadership, as a form of activity, is envisaged and enacted by staff in healthcare.
BACKGROUND: Many nursing schools have begun to address the gap in palliative care education. Recently released entry-to-practice competencies in palliative care can guide educators as they incorporate such material into their curriculum. In an effort to evaluate learning, educators need a reliable instrument that aligns with the updated competencies.
PURPOSE: This article describes the development of a new instrument to evaluate perceived competence to provide primary palliative care.
METHODS: The psychometric properties and performance of the new instrument in evaluating perceived competence were tested via an interprofessional palliative care simulation with medical, nursing, and social work students. Perceived competence was measured before and after the simulation.
RESULTS: The new instrument demonstrates strong reliability and validity, represents a unidimensional construct, and captures changes in perceived competence across time and disciplines.
CONCLUSIONS: The new instrument is acceptable for assessing perceived competence to provide palliative care, particularly for nursing students.
Background: Learning palliative care is challenging for nursing students. Simulation is recommended as a learning approach. Whether experiences from simulation transfer into clinical practice must be investigated.
Objective: The aim of this study was to explore nursing students' experiences of participating in palliative care simulation and examine how they describe the perceived transfer of knowledge, skills, and competence into clinical practise.
Method: This prospective, qualitative study was comprised of 11 in-depth interviews with second-year bachelor nursing students. Content analysis was performed to analyse the answers to open-ended questions.
Results: From this sample, simulation is a preferred method to gather knowledge, skills, and attitudes towards palliative care. Realistic cases stimulated senses and feelings. Courage grew through active participation and debriefing and influenced the students' self-confidence. Debriefing seemed to alter the situation from one of chaos to control.
Conclusions: Experiences from the simulation were perceived to transfer to practice, serve as a sound basis for clinical judgement, and enable communication with patients and their relatives. Continuity in learning through simulation combined with practice is highlighted.
BACKGROUND: Specialty palliative care (PC) is underutilized for patients with end-stage liver disease (ESLD). We sought to examine hepatologists' and gastroenterologists' attitudes about PC for patients with ESLD.
METHODS: We conducted a cross-sectional survey of hepatologists' and gastroenterologists' who provide care to patients with ESLD recruited from the American Association for the Study of Liver Diseases membership directory. Using a questionnaire adapted from prior studies, we examined physicians' attitudes about PC and whether these attitudes varied based on patients' candidacy for liver transplantation. We identified predictors of physicians' attitudes about PC using linear regression.
RESULTS: Approximately one-third of eligible physicians (396/1236, 32%) completed the survey. Most (95%) believed that centers providing care to patients with ESLD should have PC services, and 86% trusted PC clinicians to care for their patients. Only a minority reported collaborating frequently with inpatient (32%) or outpatient (11%) PC services. Most believed that when patients hear the term PC, they feel scared (94%) and anxious (87%). Most (83%) believed that patients would think nothing more could be done for their underlying disease if a PC referral was suggested. Physicians who believed that ESLD is a terminal condition (B=1.09, p = 0.006) reported more positive attitudes about PC. Conversely, physicians with negative perceptions of PC for transplant candidates (B = -0.22, SE = 0.05, p < 0.001) reported more negative attitudes toward PC.
CONCLUSION: Although most hepatologists' and gastroenterologists' believe that patients with ESLD should have access to PC, they reported rarely collaborating with PC and had substantial concerns about patients' perceptions of PC. Interventions are needed to overcome misperceptions of PC and promote collaboration with PC clinicians for patients with ESLD.
Purpose: Head-to-head comparison of reliability, validity and responsiveness of four patient-reported outcome measures (PROMS) suitable for assessing health-related quality of life (HRQOL) in palliative care settings: EORTC QLQ-C15-PAL, FACT-G7, FACIT-Pal and short-form FACIT-Pal-14.
Methods: Secondary analysis of two phase III randomised trials: ketamine for chronic cancer pain, octreotide for vomiting in inoperable malignant bowel obstruction. Sub-groups were defined by Australia-modified Karnofsky performance status (AKPS) and participants’ global impression of change (GIC). Two aspects of reliability were assessed: internal consistency (Cronbach alpha, a); test–retest reliability (intra-class correlation coefficient (ICC)) of patients with stable AKPS and those who self-reported ‘no change’ on GIC. Construct validity was assessed via pre-determined hypotheses about sensitivity of PROM scores to AKPS groups and responsiveness of PROM change scores to GIC groups using analysis of variance.
Results: FACIT-Pal had better internal consistency (a ranged 0.59–0.80, 15/18 = 0.70) than QLQ-C15-PAL (0.51–0.85, 4/8 = 0.70) and FACT-G7 (0.54–0.64, 0/2 = 0.70). FACIT scales had better test–retest reliability (FACIT-Pal 11/27 ICCs = 0.70, FACT-G7 2/3 ICCs = 0.70) than QLQ-C15-PAL (2/30 ICCs = 0.70, 18/30 = 0.5). Four scales demonstrated sensitivity to AKPS: QLQ-PAL-15 Physical Functioning and Global QOL, FACT-G Functional Wellbeing and FACIT-Pal Trial Outcome Index (TOI). Nine scales demonstrated responsiveness: three in the ketamine trial population (QLQ-C15-PAL Pain, FACIT-Pal-14, FACT-G7), six in the octreotide trial population (QLQ-C15-PAL Fatigue; FACIT-Pal PalCare, TOI, Total; FACT-G Physical Wellbeing and Total).
Conclusions: No PROM was clearly superior, confirming that choosing the best PROM requires careful consideration of the research goals, patient population and the domains of HRQOL targeted by the intervention being investigated.
OBJECTIVE: Collusion is a largely unconscious, dynamic bond, which may occur between patients and clinicians, between patients and family members, or between different health professionals. It is widely prevalent in the palliative care setting and provokes intense emotions, unreflective behavior, and negative impact on care. However, research on collusion is limited due to a lack of conceptual clarity and robust instruments to investigate this complex phenomenon. We have therefore developed the Collusion Classification Grid (CCG), which we aimed to evaluate with regard to its potential utility to analyze instances of collusion, be it for the purpose of supervision in the clinical setting or research.
METHOD: Situations of difficult interactions with patients with advanced disease (N = 10), presented by clinicians in supervision with a liaison psychiatrist were retrospectively analyzed by means of the CCG. Result 1) All items constituting the grid were mobilized at least once; 2) one new item had to be added; and 3) the CCG identified different types of collusion.
SIGNIFICANCE OF RESULTS : This case series of collusions assessed with the CCG is a first step before the investigation of larger samples with the CCG. Such studies could search and identify setting-dependent and recurrent types of collusions, and patterns emerging between the items of the CCG. A better grasp of collusion could ultimately lead to a better understanding of the impact of collusion on the patient encounter and clinical decision-making.
BACKGROUND: Nursing homes are becoming a common site where delivering end-of-life care for older adults. They often represent the junction between the curative and the palliative phase.
AIM: To identify the elements that nursing home residents' family carers perceive as good end-of-life care and develop a conceptual model of good end-of-life care according to the family perspective.
DESIGN: Systematic review (PROSPERO no. 95581) with meta-aggregation method.
DATA SOURCES: Five electronic databases were searched from inception between April and May 2018. Published qualitative studies (and mixed-method designs) of end-of-life care experience of nursing home family carers whose relative was dead or at the end-of-life were included. No language or temporal limits were applied.
RESULTS: In all, 18 studies met inclusion criteria. A 'life crisis' often resulted in a changed need of care, and the transition towards palliative care was sustained by a 'patient-centered environment'. Family carers described good end-of-life care as providing resident basic care and spiritual support; recognizing and treating symptoms; assuring continuity in care; respecting resident's end-of-life wishes; offering environmental, emotional and psychosocial support; keeping family informed; promoting family understanding; and establishing a partnership with family carers by involving and guiding them in a shared decision-making. These elements improved the quality of end-of-life of both residents and their family, thus suggesting a common ground between good end-of-life care and palliative care.
CONCLUSION: The findings provide a family-driven framework to guide a sensitive and compassionate transition towards palliative care in nursing home.