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.
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.
BACKGROUND: Advance Care Planning (ACP) is essential for preparation for end-of-life. It is a means through which patients clarify their treatment wishes. ACP is a patient-centered, dynamic process involving patients, their families, and caregivers. It is designed to 1) clarify goals of care, 2) increase patient agency over their care and treatments, and 3) help prepare for death. ACP is an active process; the end-stage renal disease (ESRD) illness trajectory creates health circumstances that necessitate that caregivers assess and nurture patient readiness for ACP discussions. Effective ACP enhances patient engagement and quality of life resulting in better quality of care.
MAIN BODY: Despite these benefits, ACP is not consistently completed. Clinical, technical, and social barriers result in key challenges to quality care. First, ACP requires caregivers to have end-of-life conversations that they lack the training to perform and often find difficult. Second, electronic health record (EHR) tools do not enable the efficient exchange of requisite psychosocial information such as treatment burden, patient preferences, health beliefs, priorities, and understanding of prognosis. This results in a lack of information available to enable patients and their families to understand the impact of illness and treatment options. Third, culture plays a vital role in end-of-life conversations. Social barriers include circumstances when a patient's cultural beliefs or value system conflicts with the caregiver's beliefs. Caregivers describe this disconnect as a key barrier to ACP. Consistent ACP is integral to quality patient-centered care and social workers' training and clinical roles uniquely position them to support ACP.
CONCLUSION: In this debate, we detail the known barriers to completing ACP for ESRD patients, and we describe its benefits. We detail how social workers, in particular, can support health outcomes by promoting the health information exchange that occurs during these sensitive conversations with patients, their family, and care team members. We aim to inform clinical social workers of this opportunity to enhance quality care by engaging in ACP. We describe research to help further elucidate barriers, and how researchers and caregivers can design and deliver interventions that support ACP to address this persistent challenge to quality end-of-life care.
End Stage Renal Disease (ESRD) is a life-limiting condition for which hospice and palliative care are not routinely provided to patients and families. While the ESRD mortality rate is close to 25%, patients on dialysis are half as likely to receive hospice services than patients with other life-limiting diagnoses. Nephrologists and dialysis social workers receive little training to effectively lead patients with ESRD and their families through the stages of dying and the completion of advance care planning. The lack of professional training, a need for greater commitment to advanced care planning from dialysis corporations, and reimbursement problems for hospice care, all contribute to low rates of hospice use within the ESRD population. An ESRD advance care training program for social workers is described that was developed as a part of a larger research project designed to increase advance care planning and referrals for hospice for those with ESRD. The goals were to help social workers become better advocates for patients and families, appreciate cultural, spiritual, racial and ethnic differences, and understand the ethical and legal issues in advance care planning. The challenges that emerged included high staff turnover and a paucity of corporate commitment to training.
Nous proposons une réflexion autour de l'accompagnement éducatif de personnes affectées par une maladie grave incurable accueillies en Maison d'accueil spécialisée. Dans l'objectif de problématiser la rencontre entre deux champs professionnels, celui des soins palliatifs et celui du handicap, nous proposons quelques repères nécessaires pour penser et construire la pratique professionnelle dans ce contexte.
Palliative care (PC) is perhaps the most inherently interdisciplinary specialty within health care. Comprehensive PC is delivered by a core team of physicians, nurses, social workers, spiritual care providers, pharmacists, and others who address the broad range of medical, psychosocial, and spiritual needs of those living with serious illness. While PC clinicians are typically skilled in screening for distress, the best path to follow when patients screen positive for psychosocial distress or exhibit mental health challenges may not always be clear. This article brings together the perspectives of experienced social workers practicing across PC and hospice settings. It seeks to identify opportunities and rationale for the integration of palliative social work (PSW) in the provision of quality, person-centered, family-focused, and culturally congruent care for the seriously ill. Increasing recognition of the impact of social determinants of health highlights the critical importance of including PSW if we are to better understand and ultimately address the broad range of factors that influence people's quality of life.
Palliative care addresses the biopsychosocial and spiritual distress of people with critical and chronic illness. Depending on the trajectory of an illness, a social worker in an acute care setting may have a limited number of opportunities to engage in meaningful interaction with an emotionally distressed patient. The social worker is often faced with providing care to a patient who is having the dual experience of maintaining hope for medical improvement and anticipating loss. This article offers therapeutic practice skills needed by social workers to address the experience of anticipatory loss in an acute care setting. Brief psychodynamic and person-centered therapy, provided in combination, are highlighted as one method to explore a patient's feelings and wishes in the face of critical illness. Case-based vignettes illustrate how five open-ended questions help mitigate suffering and heighten a patient's sense of autonomy and self-worth.
INTRODUCTION: Despite being one of the most avoided topics of all time, death is a guaranteed eventuality for us all. However, quality psychosocial care as death approaches is not a guarantee. Where people reside is likely to impact a person's accessibility to quality psychological, emotional, social, spiritual and cultural support. Structural forces such as funding and resourcing will also be a contributing factor. Social workers have specific expertise in the psychosocial domain, yet enablers and inhibitors to social work referrals to support terminally ill clients in rural and remote communities have not been well explored. This study had two primary aims: to investigate the provision of psychosocial care for palliative clients in rural Australian communities and to identify barriers and facilitators of social work referrals to address psychosocial concerns for palliative care clients.
METHODS: Qualitative interviews were conducted with 38 rural participants across 24 rural and remote communities in the state of Queensland, Australia. The researcher travelled 7500 km to conduct these interviews over a 5-week period. The Rural, Remote, Metropolitan Areas classifications provided guidance on determining which communities would be considered regional, rural or remote communities. To explore the aims of the study, four participant groups were selected to participate in semi-structured qualitative interviews: group 1, social workers; group 2, community health nurses; group 3, community workers; and group 4, palliative clients/carers. For a comprehensive analysis, it was important to not only hear the views of those addressing psychosocial needs, but also include the voices of those receiving psychosocial care, resulting in all perspectives being captured. A thematic analysis was utilised, from which prominent, recurring themes were identified to form the basis for recommendations for future psychosocial care provision.
RESULTS: Findings revealed that psychosocial needs for terminally ill clients were addressed in an ad-hoc, inconsistent manner across rural and remote Queensland. Eligibility and access for palliative care program funding impacted service delivery and what support could be provided. Furthermore, social workers were limited in what they could offer due to the vast geographical distances, which inhibited quality face-to-face interventions and the capacity to address urgent psychosocial concerns. This resulted in community nurses assuming the role that social workers would usually undertake in more urban settings. In communities where a generalist social worker was employed, referrals were often impacted by the perceptions of other professionals of social work competencies. Finally, the results highlighted that a disparity exists between the perspectives of palliative care clients and their caregivers and understanding of healthcare professionals of what were identified as important psychosocial concerns.
CONCLUSIONS: Palliative care funding in Queensland is insufficient to effectively address the existing demand. Resourcing for rural and remote palliative care in Queensland is inadequate to ensure holistic and quality approaches to psychosocial care in the end stages of life. Increased resourcing would result in better care, for longer time frames throughout a disease trajectory. Education and training for health practitioners to address skills and competencies in psychosocial care for terminally ill clients is a recommendation for professional development. Furthermore, there is a need for social work to develop national standards and competencies to enhance practitioner confidence to efficiently address psychosocial concerns for terminally ill clients. Whilst this study was undertaken in Queensland, Australia, the findings are echoed in other international rural communities.
CONTENT: Burnout is common amongst palliative care clinicians. Resilience helps to reduce burnout, compassion fatigue and is associated with longevity in palliative care.
OBJECTIVES: We aimed to study palliative care clinicians who have remained in the field for longer than 10 years to deepen our understanding on their views on burnout and resilience.
PATIENTS AND METHODS: We conducted a qualitative study using semi-structured interviews and purposive sampling on 18 palliative care clinicians - 5 doctors, 10 nurses and 3 social workers who worked in various palliative care settings (hospital palliative care team, home hospice and inpatient hospice). The mean age of the interviewees was 52 years old and the mean number of years practicing palliative care was 15.7 years (ranging from 10 -25 years). The interviews were recorded verbatim, transcribed and analysed using a grounded theory approach.
RESULTS: 4 major themes emerged from our analysis - Struggling, Changing Mindset, Adapting and Resilience (SCAR). Intervening conditions such as self-awareness, reflection, and evolution were also important factors. The core phenomenon of our study was that of 'Transformational Growth' - a process which palliative care clinicians have to go through before they achieve resilience. We also further classified resilience into both personal and collective resilience.
CONCLUSION: Our findings highlight the evolving process of transformational growth which palliative care clinicians must repeatedly undergo as they strive towards sustained resilience and longevity. It also stresses the importance of taking individual and collective responsibility towards building a culture of personal and team resilience.
Cet article décrit certains aspects uniques dans les soins des patients de sexe masculin souffrant d'une maladie hématologique, tout au long du processus, depuis l'étape du diagnostic en passant par la phase de traitement jusqu'à la rémission et parfois, malheureusement, jusqu'à la phase de fin de vie. Ce périple peut s'étendre de quelques mois à plusieurs années. Cet article présente aussi le travail effectué auprès de patients de sexe masculin qui suivent une thérapie de groupe au sein du service. Il met en lumière les défis auxquels les hommes sont confrontés, en particulier dans la société israélienne, lorsqu'ils doivent faire face à une maladie potentiellement mortelle.
[Adaptation de l'Intro.]
Aim: In India, the need for rural palliative care is increasing with the rising number of people diagnosed with late-stage cancers. Rural areas also have a shortage of trained medical personnel to deliver palliative care. To address these needs, a home-based palliative care program using community health workers (CHWs) to facilitate care delivery was developed to extend the reach of a cancer center's palliative care services outside of Kolkata, India. The research question guiding this qualitative study was, how feasible, useful, and acceptable was this program from the perspectives of the clinical team and CHWs who delivered the intervention?
Methods: This qualitative descriptive study used a grounded theory approach and the iterative constant comparative method to collect and analyze data from the key stakeholder interviews. Ten qualitative interviews took place at the Saroj Gupta Cancer Center and Research Institute and were conducted with the CHWs who delivered the home-based palliative care intervention (n = 3) and the clinical team who provided them with training, support, and supervision (n = 7).
Results: Three major themes emerged (a) CHWs' desire and need for more training, (b) the need for tailoring of existing intervention protocols and modifying expectations of stakeholders, and (c) the need for considerations for ensuring program sustainability.
Conclusions: The study provided evidence that the utilization of CHWs to facilitate delivery of palliative care is a feasible model worthy of consideration and further research testing in low-resource settings.
The recent controversy around the hospital end of life care has highlighted the vulnerability of dying patients and their families. However, little is known about how social workers provide support and intervention around the end of life in the hospital. Eight hospital social workers provided qualitative descriptions of their clinical practice for adult patients and their families. Highlighting a theoretical orientation towards a person-in-environment approach, social workers develop unique interventions to contribute to multidisciplinary care. Findings emphasize the need to prepare social work students and clinicians for the reality of working with end of life issues.
The current conceptual review sought to identify and describe how the end of life was conceptualized and operationalized in top-ranking, peer-reviewed social work journals considering the highly individualized and multidimensional experience of dying put forth by modern scholars and social work practitioners. An iterative content analysis of included articles (N = 103) revealed six themes within reported definitions and four themes within eligibility criteria. Definitions (n = 66) related to treatment responsiveness, the death process, dying, prognosis, admission to specific services, and old age. Eligibility criteria (n = 18) related to proxy assessment, diagnosis, prognosis, and functional ability assessments. Over one-third of included articles did not define what was meant by the end of life (36%; n = 37) and the majority did not include eligibility criteria (83%; n = 85). In conclusion, the complex lived experience of dying was not manifest within included articles raising important implications for research (e.g., measurement, meta-analysis) and social work practice (viz. service eligibility).