Here Allie Shukraft, pediatric palliative care social worker, and Lizzy Miles, geriatrics hospice social worker, discuss their wish lists for additional research to support their respective social work practices. This article is the second article in a series of planned joint conversations into these populations. (See post #1 here)
Allie: Although there is some great writing out there in the field of hospice and palliative care (HPC) social work (The Journal of Social Work in Palliative and End of Life Care, for example), there are still large gaps that exist in the HPC social work literature. First off, there is very little in the way of research on measurable outcomes in psychosocial palliative and hospice care specifically. There is research into this work with specific illnesses (i.e. cancer), or in grief work, but there is still a long way to go in proving that what social workers do with their patients has a positive impact.
Along these lines, there is a lack of information about specific interventions or methods that we can use in addressing psychosocial issues in hospice and palliative care. For example, an article might discuss a theory (such as Family Systems) and/or an approach (maybe Cognitive Behavioral Therapy – CBT), but what still needs to be written is what CBT techniques need to be applied and how these apply theory to practice.
In the coming years, I hope to see more written about specific tools that social workers, especially those new to the field, can use in their practices.
Lizzy: I agree wholeheartedly. In school, we talked a lot about bridging research and practice, but I believe the research side needs to help build the bridge a little more. There are many more practical resources and interventions available for bereavement in the research than for the dying process.
I have a wish list of common hospice situations where I would like more ideas for interventions. In these situations basic social work techniques apply, but I would love for someone to tackle the topics directly and offer techniques or tools specifically addressing these challenges.
- Hospice patients with dementia who have an apparent trauma history
- Reluctant caregivers (especially adult children who feel forced into the role)
- When it’s too late for patient to get POA (i.e. patient has dementia) and the natural caregiver is not the legal next of kin
We would be remiss to have an article about the gaps in the literature without acknowledging our favorite pieces.
Allie: My general approach to working with the anticipatory grief and the grief for the losses that our families face through the illness process often ties into the Dual Process Model of Coping with Bereavement (DPM) initially introduced by Margaret Strobe and Henk Schut. Although there are many articles that describe this model, the journal Omega put out a 2010 issue re-examining this model after a decade of publication, including research into effectiveness of interventions that utilize DPM.
The DPM operates on the principle that adaptive coping involves both confronting the reality of a loss, accepting it as it were, and participating in “restoration-oriented” tasks. They noted that those who seemed to have the least mal-adaptive coping strategies seemed to oscillate back and forth between the loss-oriented tasks (such as grief work) and the restoration-oriented tasks of adapting to a new normal. Although the authors point out that this is not a universal way of grieving that all should participate in, what I like about it is that it takes into account that people can be in many different places all at the same time. I also like the idea of creating a new baseline for life that has room for the person (or skill) that is lost. Similar to Dennis Klass and Tony Walter’s idea of Continuing Bonds, the DPM allows room for the who or what that is lost to still be a part of the griever’s life, just in a new way. However, unlike Continuing Bonds, it also allows for space in the griever’s life without the loss.
Lizzy: The research that I use most often in my day to day work is Harvey Chochinov’s research on Dignity Therapy. Not to be confused with the “death with dignity” physician assisted suicide (PAS) movement, Dignity Therapy is a series of interventions designed to relieve existential distress at end of life. Dignity Therapy starts with one basic Patient Dignity Question (PDQ), “What do I need to know about you as a person to give you the best care possible?". I ask that question at every hospice admission I do. This question can help identify patient stressors. Now I must admit, sometimes the patient responses are unexpected. “I like basketball,” for example.
Beyond the initial question, there is a short Patient Dignity Inventory (PDI) that helps to identify twenty different ways that a patient might experience existential distress, from illness related concerns to role preservation. The research provides further exploratory questions such as "What things did you do before you were sick that were most important to you?" that can be asked of the patient and then suggests multiple interventions for each concern.
Hospice and palliative care researchers who want practitioners to apply their research would do well to model the resources that Chochinov’s research provides practitioners.
Allie Shukraft, LCSWA, MSW, MAT, is a pediatric palliative care social worker for Carolinas Healthcare System in Charlotte, NC where she loves reading and walking with her dogs. You can find her on Twitter @alifrumcally
Lizzy Miles, MA, MSW, LSW is a hospice social worker in Columbus, Ohio best known for bringing the Death Cafe concept to the United States. You can find her on Twitter @LizzyMiles_MSW