The Role of Hospice Social Workers

VNSNY Hospice social worker Marilyn Dos Santos laughs along with her patient and family caregiver.

VNSNY Hospice social worker Marilyn laughs along with one of her patients and her patient’s daughter.

“I just came from the house of a patient with end-stage liver cancer,” says Marilyn D., a social worker with the Queens North team of VNSNY Hospice and Palliative Care. “The patient’s sister is helping to care for him, but they have a love–hate relationship. He’s angry that she’s trying to take over his life, and he wants to make own his decisions.”

The patient also has hepatic encephalopathy, she adds, leaving him confused and agitated. This disorientation led his sister to bring him to the emergency room at Mount Sinai Medical Center, where’s he’s on the list for a liver transplant. Uncomfortable there, he left the ER in the middle of the night and traveled back home to Queens by subway and bus. Now, working with the hospital’s social worker and his doctors, Marilyn has arranged for him to be admitted directly into the hospital’s palliative care unit, where VNSNY can continue providing hospice care. Another task still remained, however: Telling the patient that the hospital had just taken him off the transplant list.

“His sister didn’t want to take away his hope, but he absolutely needed to know,” she says. “So I sat down with him and said I had to talk with him—that it was a hard conversation, but that he had the right to know. Then I gently told him that he’s no longer on the transplant list and the doctors think he has about a month to live.” Tearful, the patient thanked her for leveling with him. “He told me, ‘I know I can trust you.’”

While this situation was extreme, dealing with tricky family dynamics is commonplace in Marilyn’s work. “The role of social workers in hospice is to help families negotiate uncharted territory,” she says. “I always tell patients that in hospice we work as a team. The nurses help them with the stress inside their bodies, and I help them and their family members cope with the stress outside their bodies. I help them adjust to what’s going on and give them a sense of control.”

To encourage families to open up, Marilyn likes to use humor. “I’ll ask patients and family members to pinkie swear about something. Nine times out of ten they’ll laugh, and then they’ll shake pinkies with me!” she chuckles. While she doesn’t try to fix everything—“If a family had trouble getting along before, they’re not all going to suddenly get along now”—she does try to get families to share their feelings and work through them. “My goal is to help everyone come together so their loved one can feel more peaceful during his or her last days.”

Her work may also involve arranging for home attendants and making sure advance directives are in place and understood. If everything is going smoothly, hospice social workers will typically check in with their clients every couple of weeks. “When it gets closer to the end, though, we visit more often, because that’s when they really need us,” she notes. “Patients need help acknowledging what’s happening, and families need help with their feelings of helplessness and uncertainty. Often we’re the ones who are preventing them from calling 911 and rushing their loved one to the emergency room.”

To help lessen families’ fears, Marilyn and her colleagues have a book they share with families, describing end of life symptoms. “I also remind them that hearing is the last thing to go, so they should keep talking, sharing funny stories with their loved one and reminding them of happy times. That way you’re leaving them with positive memories.”

Ultimately, says Marilyn, a big piece of what she does involves reassuring patients and their families, and helping them find the strength to tolerate difficult and often unwelcome life changes. “I have one elderly patient who is dying from Alzheimer’s,” she says. “She lives with her daughter, who looks after her every minute of the day. The daughter was the baby of the family, and she’s having a lot of difficulty acknowledging that her mother doesn’t have much time left. My goal is to help the daughter reach that point where she’s ready to let go—to help her accept that she’s done a wonderful job taking care of her mom, and that now it’s time to let nature take its course.”

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