Long Term Care: The Role of Social Workers in End-of-Life Care
As the nation's baby boomer generation reaches retirement age and life expectancy increases, the need for support care for individuals with an advanced illness grows more urgent. While end-of-life care often is viewed as a part of geriatric services, it also focuses on sudden death, unexpected illness, and anticipated death from illnesses that occurred earlier in life.
A cohesive and standardized approach to end-of-life care addresses issues related to the patient, family, caregivers, and the team of health care professionals involved in providing the care.
Patients who require palliative and/or hospice care can experience extreme challenges, including depression, anger, and anxiety; intense physical pain or discomfort; financial strain; social isolation; and family conflict. This phase of life often carries the added emotional weight of grief and bereavement and frequently involves pain management.
For these reasons, the participation of palliative/hospice social workers is critically important to guide patients and families in navigating the many challenges and pitfalls as well as to identify opportunities to help them with the difficult process of end-of-life planning; manage the mental, emotional, familial, and monetary stressors of debilitating physical illness; understand patients' treatment plans and voice their needs; overcome crisis situations; and connect to other support services in the area.
These specially trained professionals are advocates for patients and their families and bring depth of knowledge about available resources, whether the palliative/hospice services are delivered in a hospital setting or at home.
Palliative/hospice social work is critical in honoring patients with serious illnesses and preparing them for what's next. Because their role can be all-encompassing, practitioners must have strong emotional boundaries to help patients determine their goals of care and achieve them in a realistic way. This includes helping them cope with what can be a challenging process.
Palliative/hospice social workers must be flexible because every situation is unique; they must quickly adjust to each new environment. They play a key role in providing insight and preparing other members of the interdisciplinary team of health care professionals. They're also guides for advanced care planning.
Because it's performed in a stressful time of life for everyone involved, palliative/hospice social work can be challenging, but the rewards include the opportunity to make a deep connection with individuals, to celebrate their life stories, and to have a significantly positive impact on patients and their families.
Differences Between Hospice and Palliative Care
Palliative care is designed to prevent or relieve pain, whether physical, psychosocial, or spiritual, and alleviate any symptoms of the illness. It can be provided at any point during the illness and be used alongside curative care.
In contrast, hospice is a form of palliative care that supports and provides physical comfort at the end of life—typically when life expectancy is six months or less.
While some people may use palliative care and subsequently enroll in hospice care, others begin hospice without prior use of palliative care or may choose palliative care at the end of life instead of hospice.
Character, Knowledge, Skills
• counseling and psychotherapy for individuals, couples, and families, including suicide risk assessment;
• psychosocial education about coping skills, hospice and palliative care philosophy, and nonpharmacological symptom management strategies;
• in-services to other service providers and organizations;
• community education workshops;
• planning for discharge, coordinating care, and helping clients navigate systems;
• facilitating advance care planning and caregiver support;
• crisis intervention;
• conflict mediation;
• advice on legal matters, including finances, medical benefits, and veteran status;
• participating in interdisciplinary team meetings, care planning, and ethics consultations;
• advocating on behalf of the patient and family; and
• addressing safety issues pertaining to the environment and concerns about potential abuse and neglect.
Day-to-Day Palliative/Hospice Social Work
Such information is vital for the entire care team so its members can develop an effective and compassionate care plan. These assessments gather critical patient information, including the following:
• past and present medical condition(s);
• previous and current treatment plans and health care teams, including current primary care physicians, specialists, and nurses;
• mental and emotional health data, including past and present psychological, emotional, and behavioral conditions that affect their physical health; and
• social, cultural, financial, and familial considerations, including socioeconomic struggles, family conflicts, and engagement and/or disengagement with friends and the community.
After completing the evaluation, social workers write recommendations for the types of psychological and social support patients and their families may need. They also use the information to conduct risk assessments—specialized assessments that determine the likelihood a patient will experience a severely negative outcome.
Care coordination is the delivery of effective medical, psychological, and/or social care through the organization of primary and secondary care providers. With their knowledge of systems of care, palliative/hospice social workers serve as important points of contact between different care providers, patients, and the treatment team.
Palliative/hospice social workers also play an important role in the patient intake and discharge process. During intake, they gather crucial data from patients upon their enrollment in a care program via the psychosocial assessment, help familiarize the patients and their families to the care environment, and communicate with the treatment team about patients' ongoing needs.
Counseling and Psychotherapy
They may use a combination of clinical social work modalities to help patients evaluate and manage their thoughts and emotions and overcome behavioral issues. Types of modalities include mindfulness for stress reduction, cognitive behavioral therapy, dialectical behavior therapy, supportive psychotherapy, expressive arts therapy, and narrative therapy.
Counseling and case management are the main forms of intervention, along with life review and grief support.
A narrative therapist believes in the importance of integrating the patients' stories so they are better able to consider a broader view of themselves and their situations.
Many people need to tell the stories of their experiences to integrate and explore themes, come to new insights, and better understand the paths they have taken.
Crises typically are defined as events that cause distress beyond the individuals' ability to deal with them in the near term. These vary and can include the unexpected advancement of a particular condition, difficult family conflicts, physical violence, neglect, or verbal abuse that result in trauma or suicidal ideation.
During a crisis, social workers provide immediate psychological support and counseling while also completing care coordination services by communicating with the rest of the care treatment team so that they can effectively collaborate to resolve the patients' distress.
Patient Education and Resources
They also play a key role in the navigation of discharge plans to make sure patients and families receive ongoing support.
Benefits and Challenges
At the same time, the intimate interactions that palliative/hospice social workers experience with patients and their families can be rewarding. It provides the chance to form connections with people in need and to have a significant impact on their psychological and emotional well-being as they face some of the most challenging or painful moments of their lives. What's more, being part of people's life stories can be meaningful and rewarding. Many social workers involved with palliative care and hospice families believe that the comfort and counsel they bring is a deeply satisfying experience.
Another aspect of the job that social workers find gratifying is being able to help vulnerable patients and families find resources they might not otherwise have been able to locate on their own. Social workers are positioned to voice concerns for those who are unable to be their own advocates.
Palliative/hospice social workers play many roles in the span of one day, changing their approach based upon the immediate needs of each patient and family. Some may need help with caregiving issues or living situations, while others need help for everything from admission to hospice to grief counseling. At each step in the process, social workers are there to help.
— Rhea Go-Coloma, LMSW, is chief administrative officer for Hospice of the West.
2. NASW Center for Workforce Studies & Social Work Practice. Social workers in hospice and palliative care: occupational profile. https://www.socialworkers.org/LinkClick.aspx?fileticket=