I don’t have a day of medical training under my belt. I’ve never taken a course in resuscitation and my knowledge of kidney disease comes solely from direct clinical work. However, like all medical social workers, I know how to talk to patients and their families about their options for end-of-life care. Social workers bring a specific and integral skill set to the table for these discussions–I personally have over five years of experience in kidney disease and a master’s degree in bioethics. But unfortunately, the medical social work role within the context of end-of-life care is not always well understood by the general public or even by other health care professionals. We often wind up advocating for ourselves to be involved in these discussions.
Social workers provide a unique perspective that allows our colleagues to put medical treatment into a wider context. We assess a patient’s home environment, income, education, employment, mental health and social support. This allows us to paint a picture of what a patient’s life looks like when they are not interfacing with the health care system. We are then able to intervene to help meet their needs, which may include income or housing support, financial counselling, or developing coping skills to manage anxiety or depression. We also participate heavily in advance care planning (ACP) discussions, during which we ask patients about their values and who their substitute decision makers are so as to help ensure that their treatment plan aligns with their wishes. One thing is clear: Our primary job in the context of end-of-life care is to bring the patient voice to the forefront and to help them achieve their goals. We are committed to advocating for patient self-determination; we often speak up to other members of the health care team so people can live the way they want for as long as they want.
One of our most important contributions is facilitating family meetings. We initiate them and we coordinate them, inviting key members of a patient’s care team. Our entire focus during a family meeting is to bring the whole picture of a patient’s situation into the minds of the treating clinicians. Before these meetings, we get to know families on a personal level. We find out their religious or cultural backgrounds, we ask tough questions, and we sit with the raw emotions which are often exposed. We are often the people who are most comfortable with the uncomfortable. We learn what families can afford and how much care-providing they can manage at home. During the family meeting we translate medical information, actively listen, and provide empathic responses. We help facilitate the discussion and again bring up the tough questions, all for the benefit of the patient and their family. We help move a care plan forward.
A couple of years ago I was consulted on a patient’s care which has inspired me to this day. I was asked to look into long term care for a *41-year-old patient who had end-stage kidney disease and a neurological condition that was never formally diagnosed. He was no longer walking, speaking or eating on his own. We did not know what exactly was causing such a rapid decline but we did know that the prognosis was poor. He lay in bed for weeks, declining in every way, living a life that looked unfamiliar. In the past, he’d had a stimulating and meaningful career, and was part of a large, close family that regularly got together. Long term care for this patient? I did not believe that this was what the patient would have chosen for himself if he were able to speak. I raised my concerns in morning rounds and suggested that we have a goals-of-care discussion. Some of my colleagues looked at me like I was an alien. They saw 41 as far too young for us to be having discussion of this “nature.” I kept advocating and ultimately a staff physician agreed with me and spoke to the family. They chose to stop all aggressive life-sustaining care.
I had several discussions with the family thereafter to provide emotional support in response to their tough decision. It was as if they needed permission and support from the medical team to let go. Once they were given a choice and informed that conservative management and palliation were legitimate and viable treatment options, they seemed relieved. They were able to say goodbye and watch their loved one die with dignity and with the support of hospital staff. They were spared having to spend an indefinite amount of time visiting their loved one at a nursing home while he was falling apart and unable to communicate.
My hope for the future is that medical social workers will not have to push so hard for these discussions to take place. Our skilled assessment of patients and our ability to work with their families make us uniquely qualified to advocate for patient-centred care, be it prolonging life in the face of adversity or letting go and dying with dignity. Amidst a sea of emotions, we can mobilize the right people to meet the needs of the patient, all the while supporting the family.
Medical social workers must be recognized as integral to the team when it comes to end-of-life care planning. Our skill set is more than unique—it is imperative.
*For the sake of privacy, the patient and family described in this piece are a composite of a number of patients and families the author has worked with and do not represent one specific patient or family.