A Hospice Social Worker on Grief and Empathy
By: Halley Burns
2 years ago
Adam Schoenfarber, an MJHS hospice social worker, has walked a few miles in his patients' shoes. In 2013 he was diagnosed with Myxoid Chondrosarcoma, a rare and agressive type of bone cancer that doesn't respond to radiation or chemotherapy, leaving invasive surgery as the only treatment option. He talked to Legacy.com about grief, empathy and how his own experience has changed the way he approaches palliative care.
What does a hospice social worker do on a typical day?
"I provide social and behavioral counseling to patients who are in the last six months of their lives, who've been told that there are no curative treatments available. I help prepare them for death, and prepare the family for the loss. A bulk of it is talking and listening but it can also mean filling out applications, figuring out what type of finances will be available for the funeral, and figuring out where someone wants to die – at home, in a hospital, or in a hospice facility."
How did your experience with cancer change the way you relate to patients?
“It definitely deepened my appreciation for the work in lots of ways. There were things I never expected would affect me so powerfully, like walking around on a cane or all the sudden really paying attention to the treads of my shoes because my balance isn’t what it used to be. Now, I really understand the feeling of being ‘behind’, of having to take time off and put your life aside. Cancer also gave me a better understanding of pain... when I was diagnosed I developed a lot of neuropathic pain, which I'd never experienced before, and it took a lot to get it under control. Now, I can help patients understand, communicate and find relief from different types of pain."
When you were very ill, what was most comforting to you?
“The biggest comfort was having a strong support system. I have a very patient family... my parents are still together, I have three older brothers who live in different states, and they all came together. I have a wonderful roommate, she helped me a lot. Also Netflix; I did a lot of binge-watching. Mostly really morbidly medical shows like "Grey’s Anatomy" and "Scrubs." I hated how much physical therapy I had to do, so I would always schedule the floor exercises just as Grey’s Anatomy was starting. I’d lay out on a glorified yoga mat and do leg lifts and stretches with an elastic band in front of a TV.”
Before becoming a hospice social worker, you worked with bereaved children. What’s one lesson you learned from working with those kids?
“They’re way smarter than we give them credit for. They know a lot more than we think they do. You might think you’re having a quiet conversation in the background and no one is paying attention, but kids pick up snatches of it. Some of it they might understand, some they might not, but they form their own understanding with the information they have available. When you’re talking to kids who’ve lost a sibling or a parent, don’t say “They’re asleep” or “They’re going on a trip,” because then the kids will process that and say things like “I don’t want to go on a trip, because they went on a trip and never came back,” or “I want to sleep all the time so I can be with them.”
What methods did you use to connect with children in grief therapy?
“I honestly played a lot of Uno. Kids can’t just sit there and talk for 45 minutes, so we’d play and talk about things like "Who taught you to play Uno?" or if someone lost the game, we’d start a conversation about what it feels like to lose something.”
What do you think should be the mission of hospice?
“To provide whatever comfort we can. The beautiful thing about hospice is working with a team… we have wonderful doctors, chaplains, a music therapist. We all have something to contribute there. It may be pain that we’re trying to soothe, or a longstanding familial conflict, or answering a question like “Why isn’t [the patient] hungry?” Our job is to make people comfortable.”
What do you wish more people knew about dying?
“People need to know they have a lot of choice in the matter. People often feel like they don’t have any choices…. insurance decides which doctors are in your network, for example, and your company often chooses the insurance company you’ll work with. And our bodies choose, sometimes in ways we don’t like, what illnesses are going to pop up. But it’s our choice how we want to deal with those things. It’s our choice if we want hospice, if we want treatment. There’s a bill of rights posted in every doctor’s office. We need to make sure we use those rights.”
Written by Halley Burns. Find her on Twitter.