Role of the Hospice Social Worker: Providing Presence

I believe it can be a bit of a challenge to understand what hospice care is, and further, to understand the role of each hospice staff member. I have been a hospice social worker for almost five years, and in my experience, one of the roles of the social worker is to be a calming presence for the patient and family.

This is not a role unique to the social worker, by any means.  Nurses, aides, spiritual counselors, volunteers, and others all provide this role of “presence” to the patient and the family.  And being with or being present to the family can be a great challenge to us all, especially in a society that is most often all about “doing” and “fixing.” 

I thought I might share with you a story about a time when I quite unexpectedly had the opportunity to practice presence.  I had arrived at a family’s home with the expressed request and plan to work with the patient’s spouse on completing FMLA (Family & Medical Leave Act) documentation for her employer. 

When I arrived, the spouse and her daughter said that the patient was declining rapidly and speaking very little.  Also, they said his breathing had changed. The patient seemed to be gasping for breath, and they were uncertain about what they should do.  At the request of the patient’s spouse, I entered the patient’s room.  He appeared to be struggling to breathe, and his breathing sounded like gurgling.  It had been some time since I had been present in the room while someone was actively dying, but I was fairly certain that was what was happening.  The wife and daughter were very anxious, so I encouraged them to call the RN. 

The RN recommended they locate the oxygen concentrator, to provide the patient with some oxygen, and said she would arrive soon.  While his spouse and daughter went looking for the concentrator, I remained in the room with the patient, my hand gently laid on his arm.  Even in the short space of time they were looking for the concentrator, the patient’s breathing changed again.  The spaces between his inhales became fewer and farther between, his breath slowing dramatically. 

When his wife and daughter returned to the room, I told them that my experience suggested that the patient was taking his last few breaths, and perhaps it would be more important for them to simply hold him and talk to him gently, tell them they loved him, and that they would be alright.  The family gathered around him and held and spoke with him while I remained in the background of the room as the patient peacefully and quietly died.  It was a powerful moment for the family as well as for me, being in the room with the patient as he let go of life.  I felt grateful and honored to be a part of his death.

There was nothing for me “to do” in this instance.  My role was merely to be a presence for the patient and the family at the time.  We social workers often find ourselves in this role, and it includes being attuned to the needs of the people in the moment we are there and practicing good listening skills, hearing not just what is said, but what is not said, noting what is happening in the moment as well as what is not happening.  And, often there are no obvious rewards. After her husband’s death, the wife thanked me for my presence and witnessing of her husband’s death.

I look forward to sharing more social work stories with you in the future.

By Carol Miller, Hospice Social Worker