In previous posts, I recommended approaches to successful advocacy in hospice. In this post, we’ll adapt the direction to a relevant reality I am working with right now.
I learned about my grandpa’s terminal set of diagnoses a couple months ago, right after taking a pause in full-time hospice social work. There has been a whirlwind of overwhelming emotions and a storm of family members expressing their vulnerability through hostility towards each other. All of a sudden, I found myself in an unfamiliar position in the familiar context. I know hospice and I know social work. Now I’m learning about it from the position of someone in the position of a family member experiencing the anticipatory grief while lamenting the toll my relatives’ inability to get along is having on a sick family member.
Over the next few posts, I’ll share some of what I’m learning about hospice social work through this experience.
Lesson #1: Patients need an emotionally steady advocate
I knew all of these points already, but their urgency has become emphasized and highlighted in a new way for me. After my grandfather sent a letter to his children to inform them about his health status, the response was a loud set of assertive opinions. Everyone had a strong belief about what he needed, and these voices were eclipsing his wishes.
He was tired. He had no energy for the necessary conversations to get everyone on the same page with his desires. So his desires didn’t seem to be a focus.
A good social worker would have been able to have a straightforward conversation with him and his proxy. A SW would have been able to ensure my grandfather knew that he was still in charge of his health, and that there’s a way to assert his wishes without having to confront everyone. A SW would have been able to help the proxy understand her role to help make this happen.
I don’t blame my relatives for their response. I can’t expect people to respond rationally when parent has an illness that may end their life. But the presence of a rational voice supporting the patient’s wishes is necessary. That’s why a social worker needs to get in the door.