The role of oncology social work in palliative care has always been to approach the whole individual in the context of their life and to provide support that reflects their personal values and unique experiences. As palliative care clinicians, we often find that as a person approaches the end of life, the prevalence of psychological, emotional, and existential distress increases. The degree of this distress may be associated with past trauma and may create a myriad of challenges for the patient and the medical team providing care. Trauma-informed care has become the framework of clinical practice in palliative care because it supports the person-in-environment, including the traumatic events that have shaped their worldview and their perspectives on both illness and death. The goal of trauma-informed palliative care practice is to promote and protect an individual’s dignity during advanced illness by decreasing pain and symptom burden and relieving emotional and psychological distress without further exposure to trauma. Trauma-informed palliative care is patient-driven care.
Recognizing past trauma in individuals requires a skilled and compassionate approach. The landmark ACE study indicated that multiple exposures to early childhood trauma had a significant impact on chronic illness and mortality in later life. This trauma may often resurface after an individual is diagnosed with a life-limiting illness such as cancer. Compounding this, serious illness is often accompanied by medical trauma such as ICU admissions and hospitalizations, invasive procedures, and demanding treatments such as surgery, chemotherapy, and radiation. Additional research continues to be warranted in the palliative care space so that we can develop clinical interventions that will improve the quality of end-of-life experiences for individuals and assist us in focusing on the patient’s goals of care. Addressing pain and symptom burden, assessing depression, anxiety, and suicide risk, and promoting healthy coping are all important interventions for the palliative care social worker. Understanding the relationship between prior trauma and end-of-life experience will be necessary to develop an appropriate and impactful care plan.
As clinicians, how do we best identify those individuals who have experienced past trauma and are now facing a terminal illness? Patients may present with a cluster of symptoms and behaviors that can indicate an individual has experienced trauma. These include increased acute pain and dyspnea, persistent avoidance or missed visits, mistrust and resistance to care, anxiety, depression and sleep disturbance, increased ER visits and health care utilization, as well as a need or demand for pain medications. Often and sadly, these patients may be facing end of life alone. Symptom clusters such as these can often be an indication that patients may be experiencing a greater deal of existential distress near death related to past trauma and thus can create barriers to our ability to provide the best supportive care.
The psychosocial presentation for individuals who are likely to have experienced either past or present trauma are often the patients we find most challenging to care for. These profound issues may include mental illness, addiction, incarceration, poverty, housing instability, family dysfunction, and social isolation. The goal of trauma-informed care is to avoid re-traumatization by not compelling the patient to relive any part of their past trauma. Focus on what is important for the patient now and let them guide the direction of their care. Maintain patient dignity and autonomy. Promote trust in the relationship by consistent follow-through and open and honest communication. Respect their wishes for what represents a good death. As a clinician, if you find that an individual’s past trauma significantly interferes with the ability to provide appropriate palliative care, a trauma therapist may be able to assist. Considerations such as reasonable time and emotional energy must play a role in this intervention. Approaches such as psilocybin-assisted therapy and EMDR are some methods that are showing promise in this arena and may be of benefit in helping individuals address past trauma and relieve death anxiety.
Lastly, as patient advocates in palliative care, we must look at the institutional barriers that exist that prevent us from delivering trauma-informed care at end-of-life. Policies that promote trauma-informed care reflect and acknowledge the historical context in which we deliver care to the communities that have been consistently marginalized and underserved in traditional, white-dominated health care institutions. A close examination of the institutional policies that create barriers to patient engagement such as access to technology, health literacy, lack of transportation, or a dedicated caregiver will provide an enlightened perspective of the need to constantly strive to do better to reach the most vulnerable at the most crucial time to ensure dignity and promote quality palliative care services. Our commitment to providing the highest level of compassion and caring reflects the values of our knowledge and our profession.
