Best Practices in End-of-Life Care

Ellen L. Csikai, Ph.DSchool of Social Work

The University of Alabama

Critical Areas for Social Work Intervention

• Decisions to end aggressive cure-focused medical treatments or forgo life-sustaining treatments

• Transition to end-of-life care • Support through the dying process• Support for family caregivers• Grief/Bereavement

Cancer Diagnosis and End-of-Life Issues

• Intervene with Fears, Anxieties, Issues of loss – Immediately following diagnosis• First thoughts: “Am I going to die?” • Treatment decisions

– Longer term survival– End of Life • Encouraging hope – in the face of dying• Saying final goodbyes

(Cancer Survivor Toolbox)

Critical Roles for Social Workers

Liaison– between patients/families and health care

providers to gain access to information necessary for decision making

Counselor – works with individuals who are dying and their

families on issues related to values clarification, emotional assessment, crisis intervention, goal-setting, decision making, dealing with transition and loss, active pursuit of interpersonal growth, and the pursuit of peace of mind

Advocate – for patients’ access to medical care; aggressive

pain relief; financial assistance; access to mental health services and care for spiritual concerns

Interdisciplinary team member– help patient and family identify and communicate

symptoms of physical pain and suffering; achieve a good dying process

– helps fellow team members with their emotional concerns related to providing end-of-life care

Who uses hospice services in the U.S.?

• In 2005, about one-third of all those who died used hospice services

• 3/4 of hospice recipients died in a place that they considered “home”

• majority of hospice users are women• 4 out of 5 hospice patients were over age 65• 1/3 were over age 85• Hospice use tends to increase with age

Diagnoses of patients receiving hospice services:

• In 2005, three of the top 10 diagnoses were cancer-related (lung, prostate, breast)– Accounts for a little more than 50% of all hospice

patients

• Alzheimer’s Disease is the fastest growing non- cancer-related diagnosis

• Diseases that had a more predictable prognosis leading to death

• Diseases that tend to impose a high burden on caregivers

• In 2005, the average LOS was 59 days. • The median LOS was 26 days • Increase in the number of recipients receiving

services for greater than six months • Decrease in the number of recipients receiving

services for less that 7 days

Hospice Admission Visit/Initial Assessment

• Conducted with the new enrollee and their identified primary caregiver(s)

• The purpose is to gather initial assessment information regarding biological, psychological, social, and spiritual issues that may be important

• Social work participation in the admission visit contributes to positive outcomes

(Reese & Raymer, 2004)

• If not present for the admission visit, the social worker will make a home visit to complete a comprehensive psycho-social-spiritual assessment.

The Social Work Assessment Tool (SWAT)

• Trend toward better assessing social work outcomes

• The SWAT is useful if used at each visit with patient and caregiver

• Psychosocial domains addressed in the SWAT:– spirituality– death anxiety– social support– denial– end-of-life care decisions

– cultural group– safety– comfort– suicidal ideation– preferences about environment– assistance with financial resources– complicated anticipatory grief

(Reese et al., 2006)

Social Work Interventions in HospiceAccording to the National Hospice and Palliative Care

Organization: • Assess, diagnose, screen, and document• Stimulate internal and psychosocial coping skills

through the use of models demonstrated to be effective

• Provide crisis intervention• Provide specific symptom relief through non-

pharmacological therapies such as cognitive behavioral interventions, expressive therapies, etc.

• Enhance the responsiveness of the environment• Engage in evaluation of one’s own practice • Information and referral • Counseling re: dying process• Counseling re: anticipatory grief/bereavement• Reminiscence and life review/legacy projects• Decision making • Management of pain and suffering– relaxation therapy– resolving unfinished business

NASW Standards for Palliative and End-of-Life Care (2004)

• Describes the background of the field, including definitions, enumerates standards of professional practice and standards for professional preparation and development

• Developed in a collaborative effort between NASW and experts in the field

• The standards for practice cover: ethics and values, knowledge, assessment, intervention/treatment planning, attitudes/self-awareness, empowerment and advocacy, documentation, interdisciplinary teamwork, cultural competence, continuing education, and supervision, leadership, and training . These standards provide guidance to professionals and to agency administrators as to the appropriate and expected role of social workers in end-of-life care.

Educational Resources

• NASW Webed Courses– Understanding End-of-Life Care– Achieving Cultural Competence to Reduce Health

Disparities in End-of-Life Care

• Social Work End-of-Life Educational Program• Post-masters Certificate Programs• Palliative Care Fellowships for Social Workers

• Journal of Social Work in End-of-Life and Palliative Care

ReferencesNational Association of Social Workers. www.naswdc.org

National Coalition for Cancer Survivorship. Cancer Survivor Toolbox.

www.canceradvocacy.org/toobox

National Hospice and Palliative Care Organization (2008). Hospice Facts & Figures. www.nhpco.org

Raymer, M., & Reese, J. D. (2004). Relationships between social work involvement and hospice outcomes: Results of the national hospice social work survey. Social Work, 49(3), 415–422.

Reese, D. J., Raymer, M., Orloff, S. F., Gerbino, S., Valade, R.,Dawson, S., Butler, C., Wise-Wright, M., & Huber, R. (2006). Thesocial work assessment tool (SWAT). Journal of Social Work in End-of-Life & Palliative Care, 2(2), 65-95.