Palliative care is a “type of care focused on providing relief from the symptoms and stress of illness with the goal of improving quality of life for the patient AND the family” (Center to Advance Palliative Care, n.d). Quality of life is often connected to relationships, those that we have with activities or with people. As social workers, we address these areas through our psychosocial assessments. However, how often are we assessing the psychosocial needs of the caregiver as well?
In some care settings, there may be barriers to assessing and documenting interactions with caregivers in a medical record. In 2014, Oklahoma was the first state to pass the Caregiver Advise, Record, Enable (CARE) Act (Mason, 2017). This act requires hospitals to document the caregiver’s name as part of the medical record, inform the caregiver of a transfer or discharge, and educate the caregiver about the medical care that needs to be provided at home. Note: this act is not applicable in all 50 states. Although we know the value of noting these patient details in our assessments, we need to be aware of our organization’s policies for documentation.
When we complete a psychosocial assessment, we anticipate and plan for challenges. For a patient receiving palliative care, their quality of life, and engagement with their support system have already been affected. It is our role to support and advocate for a patient’s entire system of care, promoting the best treatment outcomes, as evidenced by the case example below.
Warren is a 63-year-old male diagnosed with lung cancer. He received multiple rounds of chemo and radiation over three years. He retired from his career as a photojournalist when he was first diagnosed with the disease. He lives with his wife in a rural area and travels over four hours to receive care at a major cancer center. Warren had increased dyspnea and fatigue; he wanted to discontinue treatment. There is no local palliative care team in their area, but the cancer center does have a palliative care team.
The cancer center’s palliative care team agreed to see Warren. Given the distance from the cancer center and his current symptoms, they requested that he travel with a caregiver for his initial appointment. They consulted the social work team to assess his psychosocial needs and provide appropriate support.
Warren’s wife, Priscilla, is eight years younger. They are both in their second marriage. Priscilla has one adult son from her previous relationship. She works for a small commercial real estate company. Her salary is their main source of income, and she holds their medical insurance. She has exhausted her PTO and reports caregiver burnout.
The social worker had several discussions with Priscilla about balancing her role as a provider, wife, and caregiver. With advice from the medical team and input from Warren, Priscilla determined which appointments to attend. The social worker assisted with FMLA paperwork for intermittent leave. When she was not available to travel, Priscilla’s son (or a family friend) agreed to transport Warren. If the medical team addressed physical care needs when Priscilla was not present, the team provided written instructions and arranged home health to teach and train her as the caregiver.
At his appointment with the palliative care team, Warren chose to discontinue treatment and focus on symptom management. Priscilla’s psychosocial needs were addressed, allowing her to balance her employment and caregiving roles. After three months, Warren’s symptoms were appropriately managed. He resumed cancer treatment. Both Warren and Priscilla report a return to “quality life together.”
There may be circumstances when a patient has less support than Warren. As social workers, we need to discuss caregiving needs early on, as it often takes time to initiate appropriate community resources. We should also inform the interdisciplinary team of any barriers to care so that we can develop an appropriate, personalized care plan.
I would like to end with a famous quotation from Rosalyn Carter. “There are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.” If we support those who support our patients, we have the potential to make the care system operate more smoothly and achieve more positive outcomes for all involved.
References
Center to Advance Palliative Care. (n.d). About Palliative Care. https://www.capc.org/about/palliative-care/.
Mason, D. (2017). Supporting Family Caregivers, One State at a Time: The CARE Act. https://jamanetwork.com/channels/health-forum/fullarticle/2760190.
