Exploring the Landscape of Palliative Care

As part of the Fridays at Silver on the Square Series, Clinical Associate Professor Susan Gerbino gave a lively presentation on February 28, explaining the theory and practice of palliative and end-of-life care (PELC). Gerbino, director of the Zelda Foster Studies Program in Palliative and End-of-Life Care, shared her immense knowledge on the subject, while fielding questions from the participants. The first part of the discussion focused on the definition of palliative care. Unlike hospice, specifically for people with six months or fewer to live, palliative care is not only for people who are dying. It is a holistic concept of care that can be used in concert with aggressive treatment, and is especially useful when there is chronic illness or pain. Palliative care teams help patients with living. This can include advocating for enough pain medication, helping with the multiple decisions required in long-term illness, constructing meaning about an illness, and lending ego support to patients and care-givers in crisis.

PELC professionals must also be open to the topic of spirituality and a certain degree of self-disclosure. Spirituality is often an important issue for patients seeking palliative care, so it is important that social workers in this field are willing to look at spiritual beliefs. Illness and death can bring “shattered assumptions,” which patients need to discuss. Along these lines, patients may want to know about the social worker’s own beliefs, and Gerbino advised participants to be comfortable sharing some of this information. She describes psychotherapy in this setting as more of a dyadic process than the traditional psychodynamic model. The work should be a relational process of reflection, with a strong sense of the patient as expert, and limited interpretations.

Gerbino discussed many theories and models, including some that are evidence-based. The Wounded Storyteller by Arthur Frank offers an instructive paradigm for understanding different types of illness narratives. Frank defines three types of narratives: restitution, chaos, and quest. While chaos stories lack coherence, restitution and quest stories have clear narrative arcs. Although the objective of psychotherapy is not to change someone’s narrative, one goal can be to help those with chaotic narratives understand where it is safe to unload those feelings, and where they should aim to have a more linear story about their illness. Research shows that patients who can articulate their illnesses using restitution or quest narratives tend to get better treatment. Other theories discussed included the evidence-based treatments, meaning-based therapy conceived of by Dr. William Breitbart, and dignity therapy created by Harvey Chochinov.

The end of the day’s seminar focused on bereavement. Gerbino stressed some of the misconceptions of grief work, specifically the idea of stages. There is no evidence that everyone needs to talk about their grief, nor that grief should proceed along the same lines for every individual. Professionals in PELC learn to let go of stage theories and understand there is more than one way to grieve. For example, instead of judging a bereaved person’s coping strategies, social workers and others can ask the question, “Is it frightening or is it comforting?” If a ritual such as preserving an article of clothing of the deceased provides comfort, then it is working, despite whatever preconceived notions of “appropriate” we might have. Indeed, the whole enterprise of palliative and end-of-life care, as expertly and passionately discussed by Gerbino, aims to shield patients, care-givers, and the bereaved from ideas of “appropriate” in order to respond sensitively and accurately to their needs.

First-year MSW students interested in pursuing the field of palliative care are encouraged to apply for the Zelda Foster Studies Program in Palliative and End-of-Life Care. Headed by Gerbino, the program is a four-year fellowship beginning in the final year of the MSW program and continuing for three years at the post-MSW level. It provides students with specialized placements in the field of palliative care, provides two years of professional mentorship, and a stipend to further professional development.