The Hospice Social Worker

When a loved one is dying, families are stressed emotionally and physically. The hospice social worker is on the team to assess patients’ and families’ psychosocial and practical needs as well as their understanding of the disease and prognosis. In some ways, the hospice social worker functions as a traditional social worker, helping families navigate legal and financial barriers. For example, social workers can assist families in obtaining powers of attorney, do-not-resuscitate orders and advance medical directives. They can guide families through community resources such as Medicaid, Meals on Wheels and any other services available through to a state’s department of social services.

But the hospice social worker’s portfolio goes beyond such traditional services. It is his or her job to evaluate the strength of the family and support system and how hospice might be able to fill the deficits. “Some people question why they need a social worker — there’s a negative connotation,” says Sara Moody, MSW, medical social worker for AseraCare in Richmond,Va. “But I try to let them know that social work doesn’t just mean helping with finances. It also means emotional support. We’re with the families and patients in a supportive role, providing active listening. We’re someone they can talk with and validate their feelings.”

“We try to keep an eye out on mental health issues, bereavement, and provide crisis intervention,” says Anna Fleck, hospice social worker for AseraCare in Altoona, Pa. “But our involvement depends upon the structure and dynamic of the family as to whether they feel comfortable with us or not. We are there to give them what they need, not what we think they need. We try not to force ourselves on them.”

We will preserve the dignity of death for our patients and families so that no one will ever die in pain or alone.

Often family members and caregivers have conflicting feelings and guilt about their loved ones and the burden of caring for them. The nurse helps them understand the dying process for their loved one, but the social worker is there to help the family and caregivers understand the process for themselves. “We encourage them to talk and express their feelings,” says Anna. “For example, many times a family member will say that he or she just wants it to be over — and then they feel guilty. We’re there to help explore and give them a safe space to talk about those feelings — the pretty and the not-so-pretty — and to let them know they are normal and OK to talk about. When you have a safe space to talk, it is a great relief. When families are in danger of caregiver breakdown — we can help them keep their loved one at home.”

Anna recalls Fred, an elderly widower facing his own death, who had emotional and spiritual regret about the death of his wife a few years earlier. “He felt he made some wrong decisions that caused his wife some physical pain and suffering. He was very tearful about it,” recalls Anna. “We talked about his feeling of guilt and his sorrow. I told him something the minister said at my mother-inlaw’s funeral — that once you are in heaven for five minutes, every pain you had was a million years ago. Fred got an incredible smile on his face and said, ‘Thank you.’ He was able to let go of that conflict and pass away in peace.”

“When you are privileged to make this journey with a patient, you get these glimpses of how you can make things better,” Anna adds. “It’s not always an incredible huge story, it’s often small things that make a difference.”

Often, as patients get to know and feel comfortable with the care team, they like to talk to the social worker about their lives. One of the tools to help patients is called a life review. It allows patients and families to relive happy times, or even times that were not so happy but were defining for them. “There is a real need for people, when facing death, to assign some meaning to their lives,” says Peggy Durkin, former social worker and now regional vice president of hospice services for AseraCare. “They can review and deal with issues over which they have lingering regret or that they need to resolve with family or friends. It helps them gain perspective. At first patients are hesitant to open up, but once we’ve gotten to know each other for a month or two, we become friends and can chat about their past life — children, job, social activities. It kind of puts their life into a story form.”

Social workers seem to have magical connections to facilitate a patient’s last wish.

Often social workers will ask patients if they would like to create a memory book, or a recording to leave behind. For example, Peggy recalls Janis, a woman in her early 20s who was diagnosed with cancer right after giving birth to her first child. She entered hospice when her son was about five months old. “She was sad that her son would never know who she was or what her hopes and dreams were for him,” says Peggy. “So we spent several months making recordings about what she wanted him to know about her childhood and growing up and some of her happy memories. We created a scrapbook that told the story of her anticipating his birth and what her dreams were for his future. It was very comforting for her to be able to leave that behind.”

Peggy was also able to help Janis’s husband, who was facing raising his son without his life partner. “We could talk about his fear and emotional pain,” she says. “He had no one else to confide in.”

Social workers seem to have magical connections to facilitate a patient’s last wish, such as visiting family members in other states or going to a specific place that was meaningful for their family. “We work with the families and utilize our community resources or churches to help sponsor the wish,” says Sara. “At the request of some patients, we’ve been able to track down estranged family members whom they would like to reconcile with, particularly children.”

Sara tells the story of helping a man in a nursing home to have quality time with his son before he passed away. “Billy was in his 40s and had a 13-year-old son,” she recalls. “We arranged with the nursing home for the son to have a sleepover at the nursing home with his father. We got together some things that would be fun, like silly string and games. They had a wonderful evening together. It not only made them both happy, but Billy could feel good that he’d had that time with his son and his son had a wonderful memory after his dad passed away.”

Sometimes the social worker can use her contacts to make things happen for patients and families that might otherwise be impossible. Ronette Bailey was able to help Peggy, a patient with pulmonary fibrosis. “When we admit a patient to hospice, we ask if there are any uncompleted tasks that the patient wishes could be addressed,” says Ronette. “Peggy stated that she had a son in prison, and she knew that soon she would be unable to make the seven-hour drive to visit him that she had been able to do for many years. She didn’t want to die without being able to see her son in the final weeks. One of our nurses mentioned that perhaps we could have her son moved to the prison facility in Nashville, Tenn., nearer to her home. I went to the State Department of Corrections with a letter describing Peggy’s terminal illness and her desire to be nearer to her son. The son was indeed transferred to the Nashville prison, and Peggy was able to visit him six days before she died.”