As a clinical social worker, one of the most important skills is to develop a relationship with a patient. In hospice work, the primary focus is the patient and their family. I’ve been thinking about what it is like to be a part of a person’s life at the end of their life and the personal feelings that develop between a patient and their family and the hospice workers that are honored with this role.
Many people mistakenly believe that hospice social workers come into the home and want to talk about “death and dying.” The reality is that we generally talk about life and living. Sometimes people want to review the past and sometimes people want to focus on the present situation and how to cope with it. Most of the conversations are about loved ones and interests. Sometimes there are questions about what to expect, and pre-planning for end-of-life decisions related to advance directives, but mostly it is about life. How to continue living knowing one is dying.
One of my adult patients who I will call Mr. Ford, was an ideal patient in that he wanted to review his past, educate himself on his present condition and prepare for the future, ensuring that all was in order for his loved ones who would be left behind. All important topics for him and a joy for a social worker to work with. However, what I remember most about him now is how he introduced me to Kozy Shack Tapioca pudding and how he wanted me to visit and hold his hand when he was too weak to talk any longer. Our final visits were with me by his bedside, holding his hand and making sure he was comfortable.
One of my pediatric patients, who I will call Michael, was close to death and his twin sister who I will call Michelle, was running around the living room as a toddler will do. She had an awareness that something was happening because her parents were very focused on her brother, but she wanted to play. I would like to tell her when she is older what it was like the day her brother died. That it was a beautiful sunny day and I picked her up and we walked outside and looked at the leaves on the trees and the flowers in the yards and how she had the chance to pet a neighbors’ dog. How happy and cute she was and how life continued for her despite the fact that it ended for her brother that day.
People will often say to hospice staff “I don’t know how you do it, being around dying people,” but hospice staff understand that we are “around” people who are living until their last dying breath. And we are dealing with grieving families who will continue to live. Hospice work is all about life. And also about love. We care about each patient, but there are some patients and families that hold an extra special place in one’s heart. There can be a special kind of love between a patient and family members and a hospice worker. I would even go so far as to say that I sometimes have the feeling that I “fall in love” with some patients and their families. When the patient dies and the families gradually separate from their team and begin to work with the Bereavement Counselor, there is a sense of loss not unlike a “break-up.” This love is encased in professional boundaries and is appropriate to the setting, but it is a meaningful part of the hospice workers’ life. Perhaps that is one explanation as to how we do it and why we do it.