The COVID-19 crisis has amplified the importance of palliative care to countless patients suffering with and dying from this disease, as well as to their families, communities, and the worldwide cadre of overburdened healthcare workers. Particularly urgent is the need for spiritual care specialists and generalists to address spiritual suffering given the degree of isolation, loneliness, and vulnerability caused by this pandemic. Although spiritual care has long been recognized as one of the domains of quality palliative care, it is often not fully integrated into practice. All disciplines are ultimately responsible for ensuring spiritual care is prioritized to improve quality of life and the experience of patients and families facing spiritual emergencies amid the complex life-and-death scenarios inherent to COVID-19. Although the pandemic has revealed serious fault lines in many healthcare domains, it has also underscored the need to recommit to spiritual care as an essential component of whole-person palliative care.
BACKGROUND: The 3 Wishes Project (3WP) is an end-of-life program that honors the dignity of dying patients by fostering meaningful connections among patients, families, and clinicians. Since 2013, it has become embedded in the culture of end-of-life care in over 20 ICUs across North America. The purpose of the current study is to describe the variation in implementation of 3WP across sites, in order to ascertain which factors facilitated multicenter implementation, which factors remain consistent across sites, and which may be adapted to suit local needs.
METHODS: Using the methodology of qualitative description, we collected interview and focus group data from 85 clinicians who participated in the successful initiation and sustainment of 3WP in 9 ICUs. We describe the transition between different models of 3WP implementation, from core clinical program to the incorporation of various research activities. We describe various sources of financial and in-kind resources accessed to support the program.
RESULTS: Beyond sharing a common goal of improving end-of-life care, sites varied considerably in organizational context, staff complement, and resources. Despite these differences, the program was successfully implemented at each site and eventually evolved from a clinical or research intervention to a general approach to end-of-life care. Key to this success was flexibility and the empowerment of frontline staff to tailor the program to address identified needs with available resources. This adaptability was fueled by cross-pollination of ideas within and outside of each site, resulting in the establishment of a network of like-minded individuals with a shared purpose.
CONCLUSIONS: The successful initiation and sustainment of 3WP relied on local adaptations to suit organizational needs and resources. The semi-structured nature of the program facilitated these adaptations, encouraged creative and important ways of relating within local clinical cultures, and reinforced the main tenet of the program: meaningful human connection at the end of life. Local adaptations also encouraged a team approach to care, supplementing the typical patient-clinician dyad by explicitly empowering the healthcare team to collectively recognize and respond to the needs of dying patients, families, and each other.
OBJECTIVES: Clinical use of the creative arts in palliative care is well established, yet there are few evaluation studies of these programs.
METHODS: In this first phase of a 3-phase evaluation of a creative arts program entitled "Tile Tales," we conducted a retrospective thematic analysis of 85 painted tiles and accompanying stories that were publically displayed on a tertiary palliative care unit. Each story was independently coded, using content analysis. Themes were derived through consensus, using the constant comparative method.
RESULTS: Tiles were created by staff (n = 36, 42%), family (n = 32, 38%), patients (n = 9, 11%), or patients and family (n = 8, 9%). Six major themes emerged from the artwork: "Spirituality," "Relationships," "Journey," "Story," "Symbolism," and "Paradox."
SIGNIFICANCE OF RESULTS: These results illustrate how the creative arts can support the expression of diverse palliative care experiences, for patients, their families and palliative care staff, when words alone may not suffice.
BACKGROUND: The Cancer Home-Life Intervention showed no significant effects, and examination of the processes affecting or inhibiting outcomes is relevant.
AIM: To evaluate the Cancer Home-Life Intervention for its processes of implementation, mechanisms of impact and contextual factors.
DESIGN: Process evaluation conducted alongside the randomised controlled trial, using quantitative and qualitative methods (ClinicalTrials.gov NCT02356627). The Cancer Home-Life Intervention is a tailored, occupational therapy-based programme.
SETTING/PARTICIPANTS: This study took place in participants' homes and at hospital. A total of 113 home-dwelling adults (>=18 years) with advanced cancer who had received the Cancer Home-Life Intervention were included, together with five intervention-therapists.
RESULTS: All 113 participants (100%) received a first home visit; 32 participants (26%) received a second visit; and 4 participants (3%) received a third visit. Median number of delivered intervention components were 3 (interquartile range: 2; 4). Identified barriers for effect included unclear decision process for intervention dosage; participants' low expectations; participants' lack of energy; and insufficient time to adopt new strategies. The trial design constituted a barrier as the intervention could only be provided within a specific short period of time and not when relevant. Intervention components working to solve practical everyday problems, enhance enjoyment and increase a sense of safety were perceived as useful.
CONCLUSION: Future interventions can benefit from inclusion criteria closely related to the intervention focus and clear procedures for when to continue, follow-up and terminate intervention. Decisions about dose and timing may benefit from learning theory by taking into account the time and practice needed to acquire new skills.
Background: The assessment of patients’ quality of life (QOL) is essential when evaluating the outcome of palliative care; however, no instruments have been validated for measuring symptoms and QOL in patients receiving palliative care in Chile. We aimed to investigate the content validity of the EORTC Quality of Life Questionnaire Core 15 Palliative Care (QLQ-C15-PAL), replicating the methods used previously to shorten the EORTC Quality of Life Questionnaire Core 30 (QLQ-C30) for use among patients in palliative care.
Methods: This cross-sectional study was conducted from October to November 2017 in four palliative care services. Patients with advanced cancer and health care professionals (HCPs) were invited to individual interviews to determine the relevance, appropriateness and relative importance of the 30 items of the QLQ-C30 for evaluating the outcome of palliative care, and whether relevant additional issues should be included.
Results: A total of 48 patients and 35 HCPs participated. The most important dimensions selected were pain, physical functioning, sleeping difficulties, emotional functioning, nausea/vomiting, fatigue, social functioning, lack of appetite, role functioning and constipation. Qualitative data identified important additional issues not covered by the questionnaire such as satisfaction with care, emotions and psychological support, as well as linguistic issues in the dyspnea and constipation items.
Conclusions: The EORTC QLQ-C15-PAL showed good content validity in the assessment of symptoms and QOL of advanced cancer patients; therefore, we recommend the use of this questionnaire in palliative care in Chile. Dyspnea and constipation items were revised by the EORTC group. More research is needed to add a social dimension for a comprehensive assessment of patients’ QOL.
Background: Symptom assessment is essential in palliative care, but holds challenges concerning implementation and relevance. This study aims to evaluate patients’ main symptoms and problems at admission to a specialist inpatient palliative care (SIPC) ward using physician proxy- and patient self-assessment, and aims to identify their prognostic impact as well as the agreement between both assessments.
Methods: Within 12 h after admission, palliative care specialists completed the Symptom and Problem Checklist of the German Hospice and Palliative Care Evaluation (HOPE-SP-CL). Patients either used the new version of the minimal documentation system for patients in palliative care (MIDOS) or the Integrated Palliative Care Outcome Scale (IPOS) plus the Distress Thermometer (DT).
Results: Between 01.01.2016–30.09.2018, 1206 patients were included (HOPE-SP-CL 98%; MIDOS 21%, IPOS 34%, DT 27%) where of 59% died on the ward. Proxy-assessment showed a mean HOPE-SP-CL Total Score of 24.6 ± 5.9 of 45. Most frequent symptoms/problems of at least moderate intensity were weakness (95%), needs of assistance with activities of daily living (88%), overburdening of family caregivers (83%), and tiredness (75%). Factor analysis identified four symptom clusters (SCs): (1) Deteriorated Physical Condition/Decompensation of Home Care, (2) Emotional Problems, (3) Gastrointestinal Symptoms and (4) Other Symptoms. Self-assessment showed a mean MIDOS Total Score of 11.3 ± 5.3 of 30, a mean IPOS Total Score of 32.0 ± 9.0 of 68, and a mean distress of 6.6 ± 2.5 of 10. Agreement of self- and proxy-assessment was moderate for pain ( = 0.438) and dyspnea ( = 0.503), fair for other physical ( = 0.297 to 0.394) and poor for psychological symptoms ( = 0.101 to 0.202). Multivariate regression analyses for single symptoms and SCs revealed that predictors for dying on the SIPC ward included impaired ECOG performance status, moderate/severe dyspnea, appetite loss, tiredness, disorientation/confusion, and the SC Deteriorated Physical Condition/Decompensation of Home Care.
Conclusion: admissions to a SIPC ward are mainly caused by problems impairing mobility and autonomy. Results demonstrate that implementation of self- and reliability of proxy- and self-assessment is challenging, especially concerning non-physical symptoms/problems. We identified, specific symptoms and problems that might provide information needed for treatment discussions regarding the medical prognosis.
Purpose: This study aims to develop a scale to assess the stress of nurses caring for terminally ill children and to test the validity and reliability of the scale.
Background: Nurses caring for children experience various stressors that are different from those experienced by nurses caring for adult patients. It is important to understand the level of stress of nurses caring for dying children and their families. Instruments to measure these stress levels, however, are not available.
Design: This study used a methodological approach.
Method: The initial items were identified through literature reviews and in-depth interviews. Content validation of the items was evaluated by seven experts. Participants were 357 pediatric nurses working at 11 institutions in six cities. Data were analyzed using item analysis, exploratory and confirmatory factor analysis, internal consistency, and test–retest. This study followed the STROBE checklist.
Findings: The final scale consisted of 22 items chosen and classified into 5 factors (psychological difficulties, conflict with parents, difficulties in communication, lack of end-of-life care knowledge, and restricted working environment), which explained 61.13% of the total variance. The 5-subscale model was validated by confirmatory factor analysis. Cronbach's alpha for the total item was 0.90, and the intra-class correlation coefficient was 0.89.
Conclusion: This scale can be used to contribute toward the assessment of stress among nurses performing end-of-life care for children.
Practice implications: This scale will contribute to the improvement of the quality of life of not only nurses, but also children and their families in pediatric settings.
Background: A community palliative care service (CPCS) identified its after-hours support as sub-optimal in avoiding acute hospitalisation and supporting patients to remain at home. It created and conducted a pilot of an extended hours palliative care service (EHPCS) using current resources.
Aims: To evaluate the efficacy of an extended hours palliative care service pilot.
Methods: Retrospective chart review of after-hours calls taken before the trial, usual care, was undertaken. During the trial, quantitative data was gathered of the outcome of each after-hours call, including outcomes of occasion of service, reason for and length and times of calls.
Findings: The extended hours palliative care service, compared with usual care, showed an almost 50% decrease in acute hospitalisation, nearly doubled after-hours palliative care unit admission and a 17% increase in patients staying in their home. EHPCS was positively received by CPCS staff, despite cost and workforce impact.
Conclusions: EHPCS can positively impact on reducing avoidable hospitalisations and facilitate palliative care patients to be in their preferred place of care.
Background: The use of formalized criteria (or triggers) for palliative care services (PCSs) has been associated with increased use of PCSs in the intensive care unit (ICU).
Objective: To explore the utility/validity of frailty as a trigger for providing PCSs.
Design: This is a prospective cohort study.
Setting/Subjects: Older adults (age =50 years) admitted to ICUs were enrolled.
Measurements: We measured frailty using the Clinical Frailty Scale. We reviewed electronic health records for the presence/absence of six evidence-based triggers, the use and quality of specialty palliative care (SPC), and markers of primary palliative care (PPC). We used descriptive statistics to describe the differences in PPC, SPC, and six-month mortality by frailty and by the presence/absence of triggers.
Results: In a study population of 302 older adults, mean (standard deviation) age 67.2 years (10.5), 151 (50%) were frail and 105 (34.8%) had =1 trigger for PCSs. Of the 151 (55.6%) frail patients, 84 had no triggers for PCSs, despite a 46.4% six-month mortality in this group. Patients with =1 trigger had higher rates of SPC than those without (39.1% vs. 18.3%, p < 0.001); frail patients also had higher SPC than nonfrail patients (32.5% vs. 18.5%, p = 0.006). Patients with =1 trigger had higher rates of PPC than those without (66.7% vs. 44.2%, p < 0.001); no statistically significant difference in PPC was found by frailty (56.3% vs. 47.7%, p = 0.134).
Conclusion: The rates of PCSs and six-month mortality by frailty are consistent with frailty being a valid trigger for PCSs in ICUs; the high prevalence of frailty relative to triggers suggests that ways to increase PCSs would be needed.
Context: Cancer is the leading cause of nonaccidental death in childhood, with the death of a child representing a devastating loss for families. Peer support offers a valuable way to support parents' adjustment in bereavement. The By My Side book provides written peer support by sharing bereaved parents' stories to normalize grief experiences and reduce parents' isolation. It is available free of charge.
Objectives: This project evaluated the acceptability, relevance, emotional impact, and usefulness of By My Side.
Design: Bereaved parents and health care professionals (HCPs) provided feedback via a questionnaire. We used descriptive statistics and qualitative analysis of open-ended responses to analyze the data.
Setting/Participants: We mailed a study invitation and evaluation questionnaire to parents and HCPs who ordered a copy of By My Side.
Results: About 24 bereaved parents and seven HCPs provided feedback. Parents thought the book's length (91.7%) and amount of information (83.3%) was just right. About 75% of parents reported that the book made them feel that their reactions to their child's death were normal and/or appropriate. Parents reported positive and negative emotional reactions to the book (e.g., 87.5% felt comforted, 87.5% felt sadness). All parents and HCPs reported that the book provided useful information about grief. About 83.4% of parents and 85.7% of HCPs would recommend it to others.
Conclusion: By My Side was acceptable and useful to bereaved parents and HCPs. Results suggest that peer support in written form may help normalize aspects of grief and comfort parents bereaved by childhood cancer.
Although clinical ethics consultation has existed for more than 40 years in the USA and Europe, it was not available in Bulgaria until recently. In introducing clinical ethics consultation into our country, the Modular, Ethical, Treatment, Allocation of resources, Process (METAP) methodology has been preferred because of its potential to be used in resource-poor settings and its strong educational function. This paper presents the results of a METAP evaluation in a hospital palliative care ward in the town of Vratsa. The evaluation was based on Beauchamp and Childress’ four principles of biomedical ethics and involves implementation of specific instruments for clinical ethics decision-making. Research tasks emphasised analyses of ethics meetings in the ward. Data were processed by SPSS v.24 using descriptive statistical analysis. Altogether, 32 ethics meetings of an average duration 20.63 min were conducted on cases involving critically ill patients. Most of the participants (86.0%) expressed satisfaction with the ethics process. The principlist approach supported resolution of conflicts between autonomous patients and their relatives, clarified definitions of “medical benefit” and “social good,” and enabled assessments of the risk of unequal treatment. Even as the specific research tasks were achieved, further participant follow-up is necessary to identify any improvement in healthcare personnel’s ethical competence. METAP worked well in end-of-life care settings. Participants experienced several benefits, including improved team communication, better understanding of patient preferences, and confidence in the correctness of decisions. Despite the significant educational potential of METAP, the need for additional and ongoing ethics training of health professionals should not be underestimated.
Du fait des multiples formes de la douleur, sa prise en charge est à géométrie variable. L’évaluation, son retentissement, son traitement, l’évaluation du bénéfice et les effets secondaires sont à chaque fois un modèle singulier.
In New Zealand, as in other industrialised societies, an ageing population has led to an increased need for palliative care services. A cross-sectional postal survey of bereaved carers was conducted in order to describe both bereaved carer experience of existing services in the last 3 months of life, and to identify factors associated with overall satisfaction with care. A self-complete questionnaire, using a modified version of the Views of Informal Carers – Evaluation of Services (VOICES) instrument was sent to 4,778 bereaved carers for registered deceased adult (>18yrs) patients in one district health board (DHB) for the period between November 2015 and December 2016. Eight hundred and twenty-six completed questionnaires were returned (response rate = 21%). The majority of respondents (83.8%) rated their overall satisfaction with care (taking all care during the last 3 months into account), as high. However, satisfaction varied by care setting. Overall satisfaction with care in hospice was significantly higher compared to other settings. Additionally, patients who died in hospice were more likely to be diagnosed with cancer and under 65 years of age. The factors associated with overall satisfaction with care in the last 2 days of life were: caregiver perceptions of treatment with dignity and respect; adequate privacy; sufficient pain relief and decisions in line with the patient's wishes. A more in-depth exploration is required to understand the quality of, and satisfaction with, care in different settings as well as the factors that contribute to high/low satisfaction with care at the end-of-life.
Objectives:To describe the feasibility of a chaplain-led spiritually focused life review interview and the development of a spiritual legacy document (SLD) for patients with advanced diseases and to describe changes in spiritual well-being (SWB), spiritual coping strategies (SC), and quality of life (QOL) after receiving the SLD.
Patients and Methods: In all, 130 patients and support person (SP) pairs were recruited from July 2012 to January 2019. Following enrollment, demographic information was gathered and baseline questionnaires were administered. Functional Assessment of Chronic Illness Therapy'Spiritual Well-Being Scale (FACIT-Sp-12) and a linear analog scale assessment (LASA) measured SWB. LASAs also measured QOL and emotional well-being (EWB). Positive Religious Coping Scale (RCOPE) measured SC. After completion of baseline forms, participants were interviewed (individually) by a chaplain. Interviews were digitally recorded, transcribed, and verified. Transcripts were edited and participants were given the opportunity to make adaptations. The participant-approved draft was then developed into a professionally printed SLD. Follow-up questionnaires were administered to assess change.
Results: Significant improvements from baseline to post-SLD follow-up were found for patients on the LASAs: SWB (average 7.7-8.3, P = .01), QOL (average 6.7-7.3, P = .03), EWB (average 6.9-7.5, P = .01), and on the positive RCOPE (average 1.8-2.0, P = .007). Effect sizes were approximately 0.25. Considering any improvement, 61.0% improved their positive RCOPE score, 46.6% improved EWB, and 39.7% improved SWB. No significant changes were found on the FACIT-Sp-12. No significant changes were found for SPs.
Conclusion: The results suggest that the primary participants who completed the study benefited by significantly increasing their QOL, SWB, EWB, and SC.
Context: High-quality advance care planning (ACP) discussions are important to ensure patient receipt of goal-concordant care; however, there is no existing tool for assessing ACP communication quality.
Objectives: The objective of this study was to develop and validate a novel instrument that can be used to assess ACP communication skills of clinicians and trainees.
Methods: We developed a 20-item ACP Communication Assessment Tool (ACP-CAT) plus two summative items. Randomized rater pairs assessed residents' performances in video-recorded standardized patient encounters before and after an ACP training program using the ACP-CAT. We tested the tool for its 1) discriminating ability, 2) interrater reliability, 3) concurrent validity, 4) feasibility, and 5) raters' satisfaction.
Results: Fifty-eight pre/post-training video recordings from 29 first-year internal medicine residents at Mount Sinai Hospital were evaluated. ACP-CAT reliably discriminated performance before and after training (median score 6 vs. 11, P < 0.001). For both pre/post-training encounters, interrater reliability was high for ACP-CAT total scores (intraclass correlation coefficient or ICC = 0.83 and 0.82) and the summative items Overall impression of ACP communication skills (ICC = 0.73 and 0.80) and Overall ability to respond to emotion (ICC = 0.83 and 0.82). Concurrent validity was shown by the strong correlation between ACP-CAT total score and both summative items. Raters spent an average of 4.8 minutes to complete the ACP-CAT, found it feasible, and were satisfied with its use.
Conclusion: ACP-CAT provides a validated measure of ACP communication quality for assessing video-recorded encounters and can be further studied for its applicability with clinicians in different clinical contexts.
Hospice volunteers are a high-risk group for anxiety and depression owing to their frequent exposure to patients at the end of life and their subsequent deaths. Resilience is known to be a powerful factor that affects the occurrence of anxiety and depression; however, research on this subject is scarce. We investigated the relationship of resilience with anxiety or depression in hospice volunteers. A total of 145 volunteers were included in the analysis. Participants completed self-reported scales, including the Korean version of the Connor-Davidson Resilience Scale, the State-Trait Anxiety Inventory, Patient Health Questionnaire-9, and the Professional Quality of Life Scale version 5. Pearson correlation coefficients were analyzed to identify the relationship of compassion satisfaction and compassion fatigue with anxiety or depression. A PROCESS macro mediation analysis was used to investigate the mediation effects of compassion satisfaction and compassion fatigue on the relationship between resilience and anxiety or depression. There were significant associations of compassion satisfaction and compassion fatigue with anxiety and depression. The relationship between resilience and anxiety/depression was mediated by compassion fatigue, which had indirect effects on anxiety and depression. Efforts to reduce compassion fatigue and increase resilience could help prevent anxiety and depression in hospice volunteers.
A growing population of persons with a serious illness will place higher demands on health care professionals to provide the palliative care needed. A Palliative Care Advanced Practice Registered Nurse (APRN) Externship was developed and implemented as a novel way to increase access to palliative care with the potential to be replicated in multiple locations. Two APRN cohorts with a total of 10 APRNs participated in a 1-week educational program, including both classroom and clinical experiences, in 1 such site. The effectiveness of the program was evaluated by participants through an electronic survey and debriefings. Active learning experiences included role play, case studies, and clinical observation and were rated as highly valuable by participants. An important theme concerning the validation of current practice was identified. Future externship programs should be refined by incorporating participant feedback and continuing to use a variety of techniques to engage learners with diverse learning styles.
Introduction : En France, plus de 618 000 résidents vivent en Établissement pour personnes âgées dépendantes (EHPAD) et plus de 125 000 y décèdent chaque année. Les difficultés éthiques y sont accrues en raison de la polypathologie et des troubles cognitifs. Les prises en charge des résidents en fin de vie ont été l’objet de recommandations de bonnes pratiques. Pourtant, les modalités de mise en oeuvre des soins palliatifs en EHPAD restent peu étudiées.
Objectifs : L’objectif était d’évaluer les pratiques de soins palliatifs en EHPAD.
Méthodes : Quatre Équipes mobiles de soins palliatifs (EMSP) et le Réseau qualité des établissements de santé de Bourgogne-Franche-Comté (REQUA) ont proposé un audit rétrospectif de dossiers dans le cadre d’une Évaluation des pratiques professionnelles (EPP) à 11 EHPAD volontaires de leur région.
Résultats : Dans ces établissements (1 596 places au total), 475 décès étaient survenus l’année précédant le recueil. Un échantillon de 295 dossiers était audité. Dans 91 % des cas les décès étaient survenus au sein des établissements. Parmi les 221 résidents décédés de façon non soudaine, lors de la dernière semaine de vie, 63 % avaient eu au moins une évaluation de la douleur, 47 % une contention (y compris barrières) et 36 % une hydratation artificielle. Dix pour cents des dossiers comportaient la trace d’une information des résidents à propos de leur état de santé. Conclusion : Ce travail identifie des axes d’amélioration des pratiques portant sur la prise en charge des douleurs, l’implication des résidents dans leur propre projet de fin de vie, et la nécessité d’une valorisation institutionnelle de l’interdisciplinarité.
PURPOSE: To characterize the participation of Radiation Oncology (RO) in reporting quality metrics through the Centers for Medicare and Medicaid Services' (CMS) Hospital Compare database, and to describe the association of hospital characteristics with RO-specific quality metrics.
METHODS: Data from CMS Hospital Compare, International Atomic Energy Agency's Directory of Radiotherapy Centre (IAEA DIRAC), 2010 US Census, and CMS Inpatient Prospective Payment System were linked to create an integrated dataset of geographic information, facility characteristics, and quality measures, focusing on the use of EBRT for bony metastases.
RESULTS: Of 4829 hospitals in the Hospital Compare database (HCD), 2030 had access to radiation therapy. Among these, 814 (40%) reported on the rate of guideline-concordant EBRT for bony metastases, a RO-specific quality measure. A total of 33,614 eligible cases of bony metastases treated with EBRT were sampled. Participation in quality reporting varied significantly by geography, population type, teaching status, hospital ownership, hospital type, and hospital size. The median rate of guideline-concordant palliative EBRT utilization was 89%. Nine percent of 814 centers had a compliance rate of less than 50%. On multivariate analysis, increasing number of cases sampled (OR 0.93, p=.028), increasing hospital star-rating, and above-average patient experience rating (OR 0.58, p=.024) remained significantly associated with decreased odds of falling in the lowest quartile of guideline-concordant EBRT utilization.
CONCLUSION: RO participation in a large, national quality improvement (QI) effort is nascent and reveals potential quality gaps between hospitals offering palliative EBRT for bone metastases. More robust RO-specific quality measures are needed.