The COVID-19 pandemic presented unique health and social challenges for hospice patients, their families, and care providers. This qualitative study explored the impact of the pandemic on this population through the experiences and perceptions of social workers in hospice care. A survey was distributed through national and local listservs to social work practitioners throughout the United States between May 15 and June 15, 2020. The study was designed to learn the following: (1) Concerns patients experienced as a result of the pandemic, (2) strengths/resilience factors for patients during the COVID-19 pandemic, and (3) the personal and professional impact of the pandemic on social workers. Themes uncovered in hospice care included isolation, barriers to communication, disruption of systems, issues related to grieving, family and community support, adaptation, and perspective. The authors provide recommendations for social work practice related to virtual communication, emergency planning, and evidence-based intervention for Persistent Complex Bereavement Disorder. Recommendations for policy include uniform essential worker status for social workers, telehealth reimbursement and expanded caregiver respite benefits.
Objectives: Determine feasibility, acceptability, and preliminary effects of the Palliative Care Social Worker-led ALIGN (Assessing & Listening to Individual Goals and Needs) intervention in older persons admitted to Skilled Nursing Facility (SNF) and their caregivers.
Design: A pilot pragmatic randomized stepped wedge design of ALIGN versus usual care in three SNFs.
Setting and Participants: One hundred and twenty older adults and caregivers (optional) with advanced medical illnesses.
Measures: Primary outcomes were feasibility and acceptability. We collected exploratory patient-/caregiver-centered outcomes at baseline and three months and conducted a medical record review at six months to assess documentation of Advance Directives (AD). We also collected exploratory health care utilization data, including hospitalizations, mortality, and hospice utilization.
Results: Of 179 patients approached, 120 enrolled (60 ALIGN patients with 15 caregivers and 60 usual care patients and 21 caregivers). Four intervention patients refused ALIGN visits, 8 patients died or discharged before initial visit, and 48 intervention patients received ALIGN visits, with [about] 80% having caregivers participating in visits, regardless of caregiver study enrollment. Quantitative exploratory outcomes were not powered to detect a difference between groups. We found 91% of ALIGN patients had a completed AD in medical record compared to 39.6% of usual care patients (p < 0.001). Qualitative feedback from participants and SNF staff supported high acceptability and satisfaction with ALIGN.
Conclusion and Clinical Implications: A pragmatic trial of the ALIGN intervention is feasible and preliminary effects suggest ALIGN is effective in increasing AD documentation. Further research is warranted to understand effects on caregivers and health care utilization. The current model for SNF does not address the palliative care needs of patients. ALIGN has potential to be an effective, scalable, acceptable, and reproducible intervention to improve certain palliative care outcomes within subacute settings.
Objective: To increase earlier access to palliative care, and in turn increase documented goals of care and appropriate hospice referrals for seriously ill patients admitted to hospital medicine.
Background: Due to the growing number of patients with serious illness and the specialty palliative care workforce shortage, innovative primary palliative care models are essential to meet this population's needs.
Methods: Patients with serious illness admitted to hospital medicine at a quaternary urban academic medical center in New York City and received an embedded palliative care social worker consultation in 2017. We used univariate analyses of sociodemographic, clinical, and utilization data to describe the sample.
Results: Overall, 232 patients received a primary palliative care consultation (mean age of 69 years, 44.8% female, 34% white, median Karnofsky Performance Status of 40%), and 159 (69%) had capacity to participate in a goals-of -are conversation. Referrals were from palliative care solid tumor oncology trigger program (113 [49%]), specialty palliative care consultation team (42[18%]), and hospital medicine (34[14.6%]). Before the consultation, 10(4.3%) had documented goals of care and 207 (89%) did after the consultation. The percentage of those referred to hospice was 24.1%. Of those transferred to specialty palliative care consultation service, nearly half required symptom management.
Discussion: Patients who received a primary palliative care consultation were seen earlier in their illness trajectory, based on their higher functional impairment, and the majority had capacity to participate in goals-of-care discussions, compared with those who were seen by specialty palliative care. The consultation increased goals-of-care documentation and the hospice referral rate was comparable with that of the specialty palliative consultation team.
BACKGROUND: Forty-five percent of hospice patients currently have a primary or secondary diagnosis of Alzheimer's disease or related disorders. However, few programs have focused specifically on assisting hospices in providing evidence-based symptom management to persons living with dementia (PLWD).
OBJECTIVE: To adapt and pilot the training component of Aliviado Dementia Care, a dementia symptom management quality improvement program originally developed for home healthcare, for use by social workers as part of the hospice interdisciplinary team.
DESIGN: A prospective pre-post design was utilized, measuring knowledge, confidence, and attitudes at baseline, and immediately and 1-month post-training. Analysis was performed using paired t-tests and repeated measures ANOVA.
SUBJECTS: Hospice social workers currently practicing in the United States with at least 1 year of experience.
MEASUREMENTS: The Dementia Symptom Knowledge Assessment and a post-training continuing education evaluation form.
RESULTS: Forty-six subjects were enrolled, of whom 26 completed the first post-test and 23 both post-tests. There was a poor baseline level of knowledge and confidence in caring for PLWD. Significant improvements occurred following training, particularly in implementing non-pharmacologic interventions for behavioral and psychological symptoms of dementia (BPSD) (16.64% increase, p < .0001) and confidence in managing behavioral symptoms (16.86%, p = .01) and depression (25.18%, p < .0001). Changes were maintained over time. All respondents were either very satisfied or satisfied with the quality and content of the program.
CONCLUSIONS: The training modules of Aliviado Dementia Care were successfully tailored for use by hospice social workers, showing significant improvement in knowledge and confidence in caring for behavioral symptoms in PLWD. Future work will examine whether the larger program, including this training, can subsequently improve patient outcomes in hospice.
Our world has become more complex and difficult with the emergence of the COVID19 pandemic. We are forced to face challenging situations we have never experienced before.
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"Les soins palliatifs sont-ils en fin de vie ?". Interrogeait le chef du service au Centre hospitalier universitaire (CHU) de Québec lors d'une conférence de presse en décembre 2018 [...].
Au cours des dernières années, les soins palliatifs se sont fait particulièrement remettre en question dans quelques-unes de leurs prétentions ; notamment celle de réhabiliter la mort comme une étape naturelle de la vie, [...].
Si les questionnements se multiplient et s'imposent, les réponses elles, demeurent incertaines. [...] Ultimement, les soins palliatifs ont à être réfléchis [à nouveau !], repensés et rediscutés dans des perspectives philosophiques, éthiques, sociologiques et anthropologiques. En effet, les préoccupations relatives à la fin de la vie humaine et à sa valeur, ne peuvent être réduites à des considérations médico-hospitalières. [...]
La mort et mourir demeurent des réalités humains complexes existentiels. Elles interpellent chaque personne au plus profond d'elle-même et suscitent souvent une quête de sens révélant toute l'incertitude inhérente à ces expériences singulières.
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Social workers provide unique knowledge and psychosocial skills for seriously ill patients and their family. Clinicians often collaborate with social workers when caring for seriously ill patients. In fact, the Medicare Hospice Benefit and the National Consensus Project (NCP) for Quality Palliative Care state that social workers are a core member of a hospice or palliative care (PC) interdisciplinary team (IDT). This Fast Fact will discuss the role of the hospice and palliative care social worker.
Background: Narrative medicine (NM) interventions have positively influenced empathy and burnout to varying degrees in health-care workers. We systematically reviewed the impact of poetry, a form of NM, on empathy and professional burnout.
Methods: A comprehensive search of Ovid MEDLINE(R) and Epub Ahead of Print, In-Process & Other Non-Indexed Citations, and Daily, Ovid EMBASE, Ovid PsycINFO, Ovid Cochrane Central Register of Controlled Trials, Ovid Cochrane Database of Systematic Reviews, and Scopus, from inception to September 25, 2018, for articles published in English, was conducted using search terms related to NM, empathy, professional burnout, and health-care personnel.
Results: Of the 401 abstracts independently screened for inclusion by 2 reviewers, 2 quantitative, 3 qualitative studies, and 1 research letter were included. One research letter, focusing on the use of poetry, found it to increase empathy as measured by a nonvalidated questionnaire. All other studies used mixed NM interventions: 2 quantitative studies, using validated surveys, showed an increase in empathy and 2 qualitative studies showed limited to a prominent finding of increased empathy. There were no studies that used poetry exclusively to assess impact on professional burnout. One quantitative study, utilizing a validated survey, revealed no overall reduced burnout among residents, although high attendance participants had moderately reduced burnout postintervention, and one qualitative study noted limited reduction in burnout.
Conclusion: There is evidence that poetry as part of a NM intervention may increase empathy and limited evidence that it may reduce professional burnout among health-care workers.
"Les soins palliatifs sont-ils en fin de vie ?". Interrogeait le chef du service au Centre hospitalier universitaire (CHU) de Québec lors d'une conférence de presse en décembre 2018 [...].
Au cours des dernières années, les soins palliatifs se sont fait particulièrement remettre en question dans quelques-unes de leurs prétentions ; notamment celle de réhabiliter la mort comme une étape naturelle de la vie, [...].
Si les questionnements se multiplient et s'imposent, les réponses elles, demeurent incertaines. [...] Ultimement, les soins palliatifs ont à être réfléchis [à nouveau !], repensés et rediscutés dans des perspectives philosophiques, éthiques, sociologiques et anthropologiques. En effet, les préoccupations relatives à la fin de la vie humaine et à sa valeur, ne peuvent être réduites à des considérations médico-hospitalières. [...]
La mort et mourir demeurent des réalités humains complexes existentiels. Elles interpellent chaque personne au plus profond d'elle-même et suscitent souvent une quête de sens révélant toute l'incertitude inhérente à ces expériences singulières.
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As people live longer with chronic disease and serious illness in the U.S., palliative care teams are called upon to support patients and their families. Social workers are an integral part of the palliative care interprofessional team, and yet there are disproportionately few training programs for social workers who wish to specialize in this area. The curriculum of a post-graduate palliative care training program for social workers should be based on the current standards for palliative care and social work, as described by the National Association of Social Workers (NASW), Council for Social Work Education (CSWE) and the Center to Advance Palliative Care (CAPC). Trainees should develop skills to care for patients who have chronic or life-limiting illness, patients who are nearing their end of life, patients who are in the active dying phase and their families around end of life planning, medical decision making, grief and bereavement. A post-graduate social work training program that aims to prepare social workers to work in the field of palliative care should consist of clinical rotations at multiple sites, robust didactic curriculum and clinical supervision. Interprofessional learning is necessary and training should include opportunities for scholarly work, quality improvement activities, leadership, and teaching. Post-graduate training programs in palliative care will prepare future social workers to be experts in a sub-specialty skill set to meet the needs of people living with chronic disease. These needs and opportunities call on the social work profession to take action to develop post-graduate training programs in palliative care.
Objective: This study aimed to develop an assessment tool measuring comprehensive interdisciplinary competence in end-of-life care (EoLC) and investigate its content, construct validity, reliability, and their correlates.
Method: Items of the Comprehensive End-of-Life Care Competence Scale (CECCS) were developed according to a comprehensive core competence framework in EoLC and refined by a multi-disciplinary panel of experts. The psychometric properties were further tested through region-wide surveys of self-administered questionnaires completed by health and social care professionals in Hong Kong.
Results: Participants comprised social workers, nurses, physicians, and allied health care professionals (445 participants in 2016, 410 in 2017, and 523 in 2018). Factor analysis validated the construct of the questionnaire which encompassed 26 items describing EoLC core competences in seven domains with satisfactory internal reliability (confirmatory factor analysis: 2/df = 3.12, GFI = 0.85, TLI = 0.93, CFI = 0.94, RMSEA = 0.07; Cronbach's alphas ranged from 0.89 to 0.97): overarching value & knowledge, communication skills, symptom management, psychosocial and community care, end-of-life decision-making, bereavement care, and self-care. Higher perceived levels in these competences were correlated with a higher level of job meaningfulness and satisfaction (r ranged from 0.17 to 0.39, p < 0.01) and correlated with lower perceived stress (r ranged from –0.11 to –0.28, p < 0.05). Regression analysis found that age and work involvement in EoLC were positively associated with the perceived competences in all domains; professionals working in hospices reported higher levels of competence than workers in other settings; social workers showed lower perceived competences in symptom management, but higher levels in bereavement care than other health care professionals.
Significance of results: The validity and internal reliability of CECCS were demonstrated. The levels of perceived competences working in EoLC were significantly associated with professionals’ job-related well-being. Practically, there is still room for improvement in comprehensive competences among health and social care workers in Hong Kong.
Hospice social workers face many challenges in attempts to replicate or supplement the holistic support and unique services hospice provides for individuals discharged alive. This discontinuity in care can impact the types of supports needed by individuals and caregivers, which may or may not be accessible within their community. Patients and families who have access to community-based palliative care programs following a discharge generally tend to navigate the process with fewer challenges. This qualitative study (N = 24) explored both the challenges of the live discharge process and the opportunities within social work practice in the US. Results from this study emphasize the need for a framework to better approach a live discharge to ensure appropriate supports are accessible for all patients and caregivers. Specifically, results highlight both the concrete and psychosocial challenges in live discharges as a result of tension between current eligibility requirements and individual feelings and needs. Social workers also provided suggestions to improve the live discharge process, including attention to communication and preparation. This paper outlines specific challenges of live discharge from hospice, a framework for understanding presented challenges, and implications for policy and practice.
The large scale and rapid spread of the current COVID-19 pandemic has changed the way hospitals and other health services operate. Opportunities for patient-centered decision-making at the end of life are being jeopardized by a scarcity of health system resources. In response, the traditional doctor-initiated advanced care planning (ACP) for critical illness may also need to be readjusted. We propose nurse-led and allied health-led ACP discussions to ensure patient and family inclusion and understanding of the disease prognosis, prevention of overtreatment, and potential outcomes in crisis times. We highlight known barriers and list enablers, long-term and short-term opportunities to assist in the culture change.
At the children's hopital where I work, we palliative social workers are having something of an identity crisis during the Covid-19 pandemic.
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This study explored the experience of pharmacists, social workers, and nurses who participated in Medical Assistance in Dying (MAiD) in a tertiary care Canadian hospital. Consenting staff participated in qualitative semistructured interviews, which were then analyzed for thematic content. This article reports on the broad theme of “support” from the perspective of the 3 professions, focusing on the diversity in perceptions of support, how MAiD was discussed within health care teams, feelings of gratuitous or excessive gestures of support, ambivalence over debriefs, and the importance of informal support. While pharmacists and social workers generally felt part of a community that supported MAiD, nurses more often expressed opinions as highly divergent. The key finding across all themes was the central importance of the culture on any unit with respect to MAiD and specifically the role of the unit manager in creating either a positive open space for communication or a more silent or closed space. Nursing noted that in the latter setting many gestures of support were experienced as insincere and counterproductive, as were debriefs. We outline several recommendations for managers based on the study results with the intent of tailoring support for all professionals involved in MAiD.
OBJECTIVE: At the end of life, the need for care increases. Yet, for structurally vulnerable populations (i.e., people experiencing homelessness and poverty, racism, criminalization of illicit drug use, stigma associated with mental health), access to care remains highly inaccessible. Emerging research suggests that enhancing access to palliative care for these populations requires moving care from traditional settings, such as the hospital, into community settings, like shelters and onto the street. Thus, inner-city workers (ICWs) (e.g., housing support and community outreach) have the potential to play pivotal roles in improving access to care by integrating a "palliative approach to care" in their work.
METHOD: Drawing upon observational field notes and interview data collected for a larger critical ethnographic study, this secondary thematic analysis examines ICWs' (n = 31) experiences providing care for dying clients and garners their perspectives regarding the constraints and facilitators that exist in successfully integrating a palliative approach to care in their work.
RESULTS: Findings reveal three themes: (1) Approaches, awareness, and training; (2) Workplace policies and filling in the gaps; and (3) Grief, bereavement, and access to supports. In brief, ICWs who draw upon harm reduction strategies strongly parallel palliative approaches to care, although more knowledge/training on palliative approaches was desired. In their continuous work with structurally vulnerable clients, ICWs have the opportunity to build trusting relationships, and over time, are able to identify those in need and assist in providing palliative support. However, despite death and dying is an everyday reality of ICWs, many described a lack of formal acknowledgement by employers and workplace support as limitations.
SIGNIFICANCE OF RESULTS: Findings contribute promising practices for enhancing equitable access to palliative care for society's most vulnerable populations by prioritizing front-line workers' perspectives on how best to integrate a palliative approach to care where structurally vulnerable populations live and die.
Background: Palliative care social workers (PCSWs) play a crucial role in optimizing communication and family-centered care for seriously ill patients. However, PCSWs often struggle to demonstrate and receive open acknowledgment of their essential skill set within medical teams.
Objective: This case discussion focuses on the care of patients and families surrounding family meetings to highlight the crucial role of the PCSW in (1) preparing the family; (2) participating in the provider meeting; (3) participating in the family meeting; and (4) following up after the meeting. The aim is to illuminate how the PCSWs can demonstrate their unique and essential skill set to medical teams and as a means of furthering the work of psychosocial clinicians throughout medical systems.
Conclusion: As the medical model continues to shift toward family-centered care, it is crucial for medical teams to optimize their partnership with patients and families. PCSWs can offer a trauma-informed biopsychosocial-spiritual lens that is instructed by continuity of care and exemplary clinical and rapport-building skills. PCSWs can play a critical role in optimizing communication, support, collaboration, and family-centered whole-person care.
Caring for dying patients is often a new experience for ICU residents. End-of-life and palliative training in medical schools is lacking. Many residents experience troublesome emotions during residency. Literature establishes that residents show lower well-being scores than similar populations. To make emotional wellness a priority for residents, monthly mandatory Palliative Care Rounds (PCR) were established in the ICU. The role of the Palliative Care Social Worker (PCSW) is central in planning and implementing PCR. Social workers have unique skills well-suited to this type of activity in an acute care setting. Residents present cases and the PCSW facilitates discussion to explore complex emotions helping residents process their feelings. Forty-five residents responded to a seven-item questionnaire, out of 70 potential resident respondents (64% response rate). Only 60% said they learned about end-of-life and its emotional aspects in medical school. Ninety-eight percent reported the PCR helped them be more aware of their feelings, and would recommend it to colleagues. Ninety-five percent said PCR are important for interns and residents to help them grow professionally and become better clinicians. Through the process of dissecting their emotions, PCR allows for personal and professional growth that improves residents’ ability to become empathic providers.
BACKGROUND: The aging of populations is rapidly accelerating worldwide. Especially, Japan has maintained the highest rate of population aging worldwide. As countermeasures, the Japanese government prioritized the promotion of local comprehensive care systems and collaboration in medical care and social (long-term) care. Development of a system to connect medical and social services in the community is necessary for the increasing older people, especially for the people in the stage of end of life.
OBJECTIVE: This study aimed to assess the effect of a multidisciplinary end-of-life educational intervention program on confidence in inter-professional collaboration and job satisfaction among health and social care professionals.
DESIGN: a cluster-randomized controlled trial.
SETTING/PARTICIPANTS: Three professional groups (home care nurses, care managers, and heads of care workers) in an urban area participated in this trial.
INTERVENTION: We implemented a multidisciplinary end-of-life educational intervention program comprising two educational workshops and an educational booklet to support multidisciplinary care for end-of-life patients during the 7-month study period.
MAIN OUTCOME MEASURE: Confidence in improved interactions among professionals and job satisfaction were assessed with the Face-to-Face Cooperative Confidence Questionnaire and the Minnesota Satisfaction Questionnaire at T1 (before intervention) and T2 (7 months after the intervention).
RESULTS: In total, 291 professionals participated in this study (experimental group n = 156; control group n = 135). Multivariate regression analyses showed significant between-group increases on all of seven subscales in participants' face-to-face cooperative confidence over the study period; no effect was evident regarding job satisfaction.
CONCLUSIONS: A multidisciplinary end-of-life educational intervention program increased confidence in multidisciplinary collaboration among health and social care professionals.