Best Practices in End-of-Life Care
Ellen L. Csikai, Ph.D
School 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, goalsetting, 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 noncancer-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-socialspiritual 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:
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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 Hospice
According 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 nonpharmacological therapies such as cognitive
behavioral interventions, expressive therapies, etc.
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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
References
National 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). The
social work assessment tool (SWAT). Journal of Social Work in
End-of-Life & Palliative Care, 2(2), 65-95.