× Expand Illness

by Andrew Smith, MSW

In January 2015, at the age of 24, I began practicing palliative home care social work. In my work, I have experienced the most intense emotions in my life, both moments of deep sadness and intense joy. I have come face-to-face with secondary trauma and at times felt that I had reached my breaking point. Throughout this overwhelming journey, however, I have grown dramatically and have never been more satisfied both in my professional and personal life.

Why I Am Passionate About Palliative Social Work and Hospice

My journey with palliative social work began as a secondary role to my position as a hospice social worker. I graduated in 2012 with a BSW and shortly thereafter had the good luck to secure a position at a nonprofit hospice agency in California. After working in hospice for a year, our sister home care agency developed a palliative program, and I jumped at the opportunity to be part of this promising new experience. It was the perfect opportunity for me, because I was beginning an MSW program, and becoming a palliative social worker would act as both my employment-based internship and an extension of my passion for hospice and working with end-of-life issues.

Hospice care is end-of-life care for individuals who are no longer seeking curative or life-prolonging treatment such as chemotherapy, radiation, and experimental treatments. Palliative care, while similar to hospice, allows individuals to receive treatments that will prolong their lives, but these patients are often living with terminal illness.

My primary motivation for seeking the position, and what continues to motivate me to this day, is the reality that death and dying are extremely taboo topics. Therefore, many individuals do not receive adequate information regarding their end-of-life options. Current research indicates that a major barrier for a patient’s preference to die at home is poor communication between patients and their doctors (Reese, 2013).

Additionally, many individuals in our society do not receive adequate education on the risks and benefits of CPR and Do Not Resuscitate (DNR) orders for someone with a terminal illness, nor do enough individuals receive sufficient education on their rights to elect against pursuing treatment that may only be prolonging a painful dying process. As a palliative social worker, I have the opportunity to address this gap in care and provide the education so many people need when they are living with a terminal disease. Little did I know, however, the enormity of the challenge I was undertaking until I was in the thick of a near-emotional breakdown of my own.

The Challenges of Being a Palliative Social Worker

There is undoubtedly great reward in being a palliative social worker. It is a position that holds a great deal of responsibility, stress, and demand. Reflecting back on when I first began the MSW program and my new position, I realize now that I set enormously high expectations for myself. I saw a problem that I had every intention of fixing—I would close the gap in the end-of-life education that was not happening adequately between terminally ill patients and their physicians. I took the task upon myself to help patients process the information that they were terminal. What an enormous job I had undertaken!

Grief is something I have had to look squarely in the face in this position, and this was not initially a conscious decision. The stress of my placement and the emotional difficulty with palliative care has brought up a tremendous sense of empathy that has also brought a strong sense of grief. Although I had worked in hospice for the previous two years, there is a different sense of connection and purpose with palliative care. Being a hospice social worker means I take a journey with patients to their final days. I entered into it with a sense of optimism that may sound strange to many. It is a beautiful concept that individuals have the ability to remain at home with their friends and family and get the symptom management they need.

Palliative care, however, has a completely different feel. I now regularly encounter individuals who are terminally ill, and everyone in their care network seems to know this except the patient. I am given the monumental task of gently broaching this subject with them. It often results in hours of processing shock, defeat, disbelief, and intense sadness for the patients and their families. It can take an enormous toll.

Self-Care and Finding Meaning as a Social Worker

Through trial and error—and through great support from my instructors, field instructor, and my friends and family—I have developed a new skill set to deal with the stress of this position in a way that creates powerful meaning, and at the same time acknowledges my limitations. As a social worker, I push myself to have these tough discussions with patients, to help them process the information, and to prepare for the end of life. I must also continually confront and accept that every decision, including an individual’s willingness to have this conversation, is the individual’s decision and not my own.

I can and will continue to strive to give energy to every interaction I have with a patient, but I must also live with the fact that not every patient will want to hear what I have to say, and for good reason. These conversations are difficult, traumatic, and exhausting for any individual living with a terminal disease. We in the helping profession must do our due diligence to offer and provide education on services and self-advocacy, and to provide comfort for those in need. We must also acknowledge our own limitations.

We must have hope. I believe in having hope—just because an individual is near the end of life, this does not mean that life has ended at that moment when the doctor gives the earth-shattering news. There continue to be numerous opportunities for joy, laughter, closure, and meaningful change. It is my responsibility to try to impart the knowledge that this opportunity exists. We must have expectations for ourselves as social workers, but not have expectations for our patients and clients. Their decisions, ultimately, are theirs and theirs alone, as it should be.