Educating Our Future Colleagues: Creating an MSW Palliative Care Practicum

As the number of older adults and those with chronic medical conditions continues to rise, the need to train social work students in palliative and end-of-life competencies becomes critical. To address this growing need, the social work team at a large urban academic medical center in the Midwest developed an MSW concentration practicum in palliative and end-of-life care. During the practicum, students receive immersive training in palliative care social work values and the skills required for these specialized assessments, interventions, and evaluations. Their training culminates in their participation on an interdisciplinary team to provide psychosocial support to patients and families receiving palliative and end-of-life care throughout the medical center. This article describes the curriculum, practice immersion, training manual, teaching modules, and structure of student supervision which is applicable to and adaptable for other palliative care social work field instructors.     

Pediatric Palliative and End-of-Life Care

Abstract

Pediatric oncology social workers are often engaged in the psychosocial care of dying children and their families. Despite their participation on the interdisciplinary team, the role for social work in pe-diatric palliative and end-of-life care has not been clearly defined. This survey of 131 pediatric oncology social workers identified current and best social work practices for care of children and their families at the end of life. Implications for practice, education, and research are discussed.     

Professional Social Work Education in End-of-Life Care

Abstract

Social work education in both BSW and MSW level courses is missing vital content about end-of-life care, palliative care, and bereavement. End-of-life care training opportunities through continuing education programs have also been limited. This deficit is significant because a vast number of social workers are already confronted with end-of-life issues on a daily basis in a variety of practice settings. Through the Project on Death in America, Social Work Leadership Development Awards initiative, many programs and models for professional social work education and training in end-of-life care have been developed and are presented in this article. These include: end-of-life care courses, symposia, training manuals, certificate programs and fellowships. Although the curricula continue to be refined, many of these programs are available to practitioners to advance their knowledge and skills and their curricular models are available to social work educators for possible replication.     

Beliefs,Death Anxiety,Denial, and Treatment Preferences in End-of-Life Care

Abstract

This study examined cultural and religious beliefs, death anxiety, denial, and medical treatment preferences in end-of-life care in a sample of social work students, community residents, and medical students in a mid-western city of 49,000. Results indicated that most social work students, community residents, and medical students preferred palliative as opposed to life-prolonging care during terminal illness. The three groups differed in cultural and religious beliefs and all three reported a moderate amount of death anxiety. Students reported less denial of terminality than community residents. Implications for personal and professional preparation to provide end-of-life care are discussed.     

Vital Conversations with Family in the Nursing Home: Preparation for End-Stage Dementia Care

Family members of persons with advanced dementia may be asked to make complex treatment decisions without having adequate knowledge regarding the risks and benefits. This 6-month, prospective, randomized trial tested the effect of an intervention consisting of a face-to-face, structured conversation about end-of-life care options with family members of nursing home residents with advanced dementia. A comparison group received only social contact via telephone. Structured conversations between a palliative care team and intervention group family members included goals of care and how best to achieve those goals, and provision of psychosocial support. Psychosocial support was also provided via telephone at three 2-month intervals. Family members participated in three telephone interviews: baseline, 3, and 6 months. Specific advance directives for persons with dementia were extracted from medical records. Results showed that intervention families had higher satisfaction with care than comparison families at the 6-month time point, and they were more likely to have decided on medical options listed in residents' advance directives (Do Not Resuscitate, Intubate, Hospitalize) over time. Study findings reinforce the need for increased education and support for families around issues of end-of-life care decisions for advanced dementia.     

“Res Ipsa Loquitur” … It Speaks for Itself … Social Work—Values,Pain, and Palliative Care

Abstract

Despite the mandated and moral imperative to advance linguistic competence in all health care contexts, leadership that addresses this area of practice and study in end-of-life and palliative care is not readily obvious. Because social work is ideally suited to lead efforts to advance linguistically-accessible end-of-life and palliative care, social workers are encouraged to assume the challenge. This article focuses on topics that are elementary yet central to discussions on language diversity and leadership initiatives to advance language access in end-of-life and palliative care contexts: importance and function of language, extent of language diversity, inequity related to language diversity, mandates and standards related to language access, and approaches and competencies that contribute positively to language access.     

“Unexpected and Distressing”: Understanding and Improving the Experience of Transferring Palliative Care Inpatients to Residential Care

The survival of patients with advanced cancer, coupled with the increased presence of end-stage chronic illnesses in an aging population, is leading to a demand in palliative care. Due to the ongoing need for acute-pain and symptom control in hospice/palliative care units, few are able to offer long-stay admission for those whose symptoms have stabilized. When a patient no longer requires specialist palliative care services, transfer from an inpatient palliative care facility may then be necessary. A core component of the role of palliative-care social workers involves working with patients and their families/carers when the care pathway shifts and the option of residential aged care facility (RACF) needs to be considered. This research explored several issues, including the impact of this transition on the patient and their families and on the interdisciplinary health care team treating the patient. An investigation was undertaken to identify concerns and barriers regarding the transition from hospice care to RACF and opportunities were highlighted to improve clinical practice in this area. A tripartite approach was adopted conducting face-to-face interviews with patients, their families/carers, and health care professionals. Members of the interdisciplinary team were interviewed and social workers working in similar inpatient palliative-care facilities undertook telephone interviews to gauge their experiences. A thematic analysis discerned a number of themes highlighting the impact of this transition on key stakeholders and incorporated recommendations to improve or best manage this process. The research has highlighted the difficulties that patients/families encounter in this transition, as well as the emphases of protecting the integrity of the patient and family. This is achieved by holding open and ongoing dialogue, particularly through family meetings and working in collaboration with the patient, the family, and the team. Understanding the experience and impact of this transition on key stakeholders is helpful in building up a knowledge base and to ensure a more effective relationship occurs. This research incorporated the voices of terminally ill patients, families, and members of the health care team in order to understand their views and recommendations for best managing the transition from a hospice/inpatient palliative-care facility to a RACF. This enables their input to have some real impetus in clinical practice and service delivery.     

Advance Care Planning Throughout the End-of-Life

Abstract

Advance care planning throughout the end-of-life is an increasingly important aspect of professional practice with older adults and their families. As the nation's population continues to live longer, more and more people will experience years of functional and cognitive decline prior to death. This article discusses the growing importance of advance care planning using a long-range, holistic perspective of examining care needs throughout the end of life. End-of-life care is conceptualized by three trajectories of decline leading to death, with about two-thirds of all older adults succumbing to four key conditions: congestive heart failure, emphysema, frailty, and dementia. Research regarding the advance care planning needs of older adults with the key conditions is presented. Further research is needed to enhance social work practice in this area.     

Family-Centered Care

Abstract

Recent trends in medicine reflect an attempt to be more patient-centered and while this is progress from the disease- or provider-focused model familiar in healthcare, the experiences and contributions of family as caregivers continue to be overlooked in some settings. The family-centered care model, developed most notably in pediatrics, but emerging in HIV, cancer, and aging, is presented as a resource to increase family involvement at the end of life. In this paper, family-centered care is defined, caregiving trends including support needs of formal and informal caregivers are discussed, and barriers to family-centered services are identified. Reintroducing family into the focus of care at the end of life is the primary goal of this paper. The family-centered model of care offers an appropriate framework for understanding the value of family in end-of-life care and fits well with social work perspectives that understand individuals in the context of their family system and greater environment.     

Developing Practice Tools for Social Workers in End-of-Life Care

Abstract

This article describes the National Association of Social Workers' (NASW) strategies for providing social workers with important practice and policy information about palliative and end-of-life care. With funding from a Soros Foundation's Project on Death in America grant, NASW developed practice standards, a Web-based continuing education course, and drafted a new policy statement to guide social workers in end-of-life care practice. The article provides an in-depth view of the development and scope of these resources for professional social workers.     

Linguistic competence/language access services (LAS) in end-of-life and palliative care: a social work leadership imperative

Despite the mandated and moral imperative to advance linguistic competence in all health care contexts, leadership that addresses this area of practice and study in end-of-life and palliative care is not readily obvious. Because social work is ideally suited to lead efforts to advance linguistically-accessible end-of-life and palliative care, social workers are encouraged to assume the challenge. This article focuses on topics that are elementary yet central to discussions on language diversity and leadership initiatives to advance language access in end-of-life and palliative care contexts: importance and function of language, extent of language diversity, inequity related to language diversity, mandates and standards related to language access, and approaches and competencies that contribute positively to language access.     

End-of-Life Conversations and Hospice Placement: Association with Less Aggressive Care Desired in the Nursing Home

Education about end-of-life care and treatment options, communication between family and health care providers, and having advance directives and medical orders in place are important for older adults with chronic, progressive decline and end-stage disease who spend their last days in the nursing home. This study used retrospective data (6 months before death) of long-stay nursing home decedents (N?=?300) taken from electronic health records to capture the end-of-life experience. Findings showed for almost all decedents, Do Not Resuscitate and Do Not Intubate orders were in place, and just over one-half had Do Not Hospitalize and No Artificial Feeding orders in place. A small proportion had No Artificial Hydration or No Antibiotic orders in place. Overall, there was congruence between documented medical orders and treatment received. Findings showed that use of hospice and discussions about particular life-sustaining treatments each had significant associations with having less aggressive medical orders in place. These results can inform best practice development to promote high quality, person-directed, end-of-life care for nursing home residents.     

An Ecological Understanding of Caregiver Experiences in Palliative Care

Palliative care is specialized health care to improve quality of life for patients with serious illness and their families through prevention and relief of suffering. A Palliative Care Institute was held in western Washington to capture community voices about diverse needs, strengths, and opportunities for improvement of palliative care. Researchers employed qualitative methods to obtain thematic data, provide real-time analysis, and engage in a multivoting technique to reflect stakeholder interest in individual themes and prioritize larger group interests. Bronfenbrenner’s ecological systems framework was used to explore caregiver experiences. Within the microsystem, caregivers reported difficulties in interactions with medical providers as a key challenge. Within the mesosysytem, interactions between patients and medical providers and the impact on caregivers were explored. Within the exosystem, caregivers reported lack of control over the schedules of personal care staff. Macrosystem influences included impact of local culture on the development of palliative care services. Chronosystem influences include de-medicalization of childbirth and its impact on perceptions of palliative care. Implications include the need for social workers to be proactive in fostering trust and effective communication between care providers and caregivers, and the demand for health care provider training in communication with patients and families.     

Advance Care Planning in the Delivery of Adult Protective Services

ABSTRACT

In ensuring the safety and protection of older adults from abuse and exploitation, adult protective services (APS) workers face a variety of situations involving serious illness and end-of-life conditions. Many older adults encountered in APS will present with one or more chronic conditions that may warrant discussion of advance care planning with clients and their families. This study surveyed APS workers (n = 508) in 21 states regarding encounters with end-of-life situations and the practice of future care planning. Results revealed that three-fourths of APS workers encounter clients with serious illnesses and about two-thirds do discuss planning in advance for care. More than one-half of the respondents indicated client incapacity and refusal to address future care needs as barriers to discussing planning in advance for care. Recommendations to enhance advance care planning among APS workers are discussed.     

Professional social work education in end-of-life care: contributions of the Project on Death in America's Social Work Leadership Development program

Social work education in both BSW and MSW level courses is missing vital content about end-of-life care, palliative care, and bereavement. End-of-life care training opportunities through continuing education programs have also been limited. This deficit is significant because a vast number of social workers are already confronted with end-of-life issues on a daily basis in a variety of practice settings. Through the Project on Death in America, Social Work Leadership Development Awards initiative, many programs and models for professional social work education and training in end-of-life care have been developed and are presented in this article. These include: end-of-life care courses, symposia, training manuals, certificate programs and fellowships. Although the curricula continue to be refined, many of these programs are available to practitioners to advance their knowledge and skills and their curricular models are available to social work educators for possible replication.     

All aboard: advancing the social work research agenda in end-of-life and palliative care

Social workers in all practice areas have the potential to contribute to the National Agenda for Social Work Research in Palliative and End-of-Life Care. The purpose of this article is to invite social work practitioners and researchers to identify research needs and work with others to address them. We offer a conceptualization of the broad scope of social work's involvement in end-of-life issues, and articulate the difference between end-of-life care and end-of-life issues in social work. Suggestions are offered to advance the national research agenda.     

Setting an Agenda for Social Work in End-of-Life and Palliative Care

Abstract

This article describes leadership efforts within social work to promote, enhance, and shape the future of social work practice, education, and research in end-of-life and palliative care. The background and outcomes of the Project on Death in America, Open Society Institute's Social Work Leadership Development Award Program, and the 2002 Social Work Leadership Summit on End-of-Life and Palliative Care are reviewed.     

Pediatric palliative and end-of-life care: the role of social work in pediatric oncology

Pediatric oncology social workers are often engaged in the psychosocial care of dying children and their families. Despite their participation on the interdisciplinary team, the role for social work in pediatric palliative and end-of-life care has not been clearly defined. This survey of 131 pediatric oncology social workers identified current and best social work practices for care of children and their families at the end of life. Implications for practice, education, and research are discussed.     

Beliefs, death, anxiety, denial, and treatment preferences in end-of-life care: a comparison of social work students, community residents, and medical students

This study examined cultural and religious beliefs, death anxiety, denial, and medical treatment preferences in end-of-life care in a sample of social work students, community residents, and medical students in a mid-western city of 49,000. Results indicated that most social work students, community residents, and medical students preferred palliative as opposed to life-prolonging care during terminal illness. The three groups differed in cultural and religious beliefs and all three reported a moderate amount of death anxiety. Students reported less denial of terminality than community residents. Implications for personal and professional preparation to provide end-of-life care are discussed.