Palliative Care Social Work: Bringing Dignity to the Dying
by Elizabeth M. Stroup, LCSW
I have been a social worker for approximately 18 years and have worked in various settings serving others. My passion in social work is palliative care. To say I love being at the bedside in a hospital setting is an understatement. People have said to me numerous times, “I don’t know how you do it,” or, “It takes a special person.” I have never really understood this thinking. In my opinion, being a social worker boils down to one thing: dignity. Dignity is something we all have a right to but do not always receive.
I was in a hospital setting working as a palliative care social worker when I truly learned this lesson. I met a young woman in her 40s, dying from lung cancer. She was on bipap, and her dying wish was to go home to die. She shared that when she was 12, her mother had died in that very hospital. This was not a memory she wanted for her 12-year-old son. She barely had enough lung capacity to communicate to me and the nurse practitioner on my team, but she breathlessly begged us to get her home.
An important caveat to understand, if you have never functioned as a hospital social worker, is that discharge planning is a beast on its own. While the nurse practitioner and I were coordinating with the floor discharge planner, hospice, and other medical services, we ran into barriers. The barriers were administrative in nature, regarding home hospice and bipap. However, knowing the patient’s dying wish, we worked harder to make this happen. I was partnered with a beautiful soul for a nurse practitioner, and we worked synchronously to tackle the barriers. After many hours and phone calls, we succeeded! The liaison from the hospice agency contacted us the next day to say our patient had made it home. She was home long enough to remove her bipap, hug her son to say good-bye, and pass with her family present.
My “aha” moment came later the next day, when the nurse practitioner and I were processing what had transpired. We understood that if it were not for us advocating, our patient would not have made it home, her last dying wish. Dying with dignity. That’s all she wanted. She was able to have her death the way she wanted it, with dignity. This is what I offer as a social worker. The following is from a training my fellow palliative care social workers and I gave to other medical providers as we always felt invisible in the hospital setting. This is an excerpt of my words after an emotionally tough day:
In family meetings, I constantly assess the family’s and patient’s body language to ensure the medical team understands when to provide further explanation, support, or an opportunity for questions. I advocate during meetings.... I am present with my family and patient, hold hands, and wipe tears. I know when to offer support and when to allow for reflection. I help medical teams in the unknown territories of humanizing medical interactions. I have discussions with patients about their goals...assist them in identifying concerns and questions to ask. I assist my team in understanding outlying personal concerns that may be the reason why my patient cannot decide. I offer my patients tools to use when their world begins to shrink as each task becomes overwhelming.... I offer resources to pass time to prevent minds wandering too far into the future.... I encourage families to capture precious moments, so their loved one’s legacy continues. I support nurses and my team when stories are too much. I remind them that it is okay that each patient maintains their autonomy. I support case managers and help problem solve difficult discharges.... I am a licensed clinical social worker, and I bring a set of skills that not everyone has or understands.
Elizabeth M. Stroup, LCSW, has 18 years of clinical social work experience. She graduated with her MSW from Edinboro University of Pennsylvania and began her career working in community mental health. She spent six years working at the bedside in a hospital setting with palliative care patients.