A Day in the Life of a Hospice Social Worker

There’s no such thing as a “typical” day in the life of hospice social worker Judy Weisenfeld. When she arrives at the VITAS Inpatient Hospice Unit at North Shore Medical Center at 7:30 a.m., before she even puts her purse away, there are challenges to face, problems to solve and families to help.

A clinical social worker for nearly 20 years and a hospice social worker for more than seven, Judy spends her days coordinating with medical staff and patients’ families to make sure the patients are getting everything they need and will go home more comfortable and medically stable than they were when they arrived.

The hospice patients who come to the inpatient unit suffer from symptoms that cannot be controlled at home; they need medical attention— blood transfusions, increased oxygen, advanced medications, pain management—that can only be provided in an inpatient setting. 

The goal of the unit’s hospice team is to get symptoms under control so the patient can return to a more appropriate setting. Today, the 10 patients on the unit range in symptoms from extreme agitation to difficulty breathing and swallowing to intractable pain. 

A Team Player Providing Patient-Centered Care

As a social worker of the inpatient hospice team, Judy takes care of the logistics as patients near the end of life. While the inpatient physician and nurses address the patient’s physical well-being and the chaplain offers spiritual support, Judy works with the patient and family to prepare them for what’s to come.

“My first responsibility is always to the patient,” she explains. “I focus on what the patient needs now as well as where they’ll get the best possible care once they are discharged from the inpatient unit. I try to provide a calming presence.”

While they are in the inpatient unit Judy also provides psychosocial support to patients and families—counseling them, listening to their stories, holding their hands as they reflect on the meaning of their lives. “I listen to them express their feelings about loss as they grieve,” she says. “This is a key part of a social worker’s role in hospice.

At 8 a.m., Judy joins the daily nurses’ meeting. The night shift nurses report on each patient, telling the day shift how the patient is doing and what happened during the night.

The meeting is crucial to Judy. She relays any concerns families have to the nursing staff and she uses what she learns from the nurses to assess the options when patients are discharged back to home-based hospice care—and to explain to families what is happening.

“Often,” she explains, “I have to educate them about where their loved one is in the end-of-life progression and help them understand what they can expect.”

Helping the Patient Return Home

Judy has two patients today who are ready to be discharged back to their primary caregivers and hospice teams. From the moment a patient is admitted to the inpatient unit, Judy begins planning their discharge. With notes from the patient’s home team, she assesses the situation at home, learns who the primary caregiver is and “puts the pieces of their life together” to make the best determination about the patient’s care once they are able to leave the unit.

“I try to understand what needs to be done once they’re home and whether the caregiver is going to be able to do it,” she says. Judy will make sure the caregiver has all medications or prescriptions and supplies needed before the patient is discharged.

For some patients it is beneficial to transition to a skilled nursing facility rather than home. Judy works closely with the hospice physician and nurses before making this recommendation to the family. Judy has the resources the family needs to make an informed decision. If they agree, she takes care of the paperwork to get the patient qualified.

Every Day is Different

Every day Judy continually adjusts to the ever-changing nature of the hospice inpatient unit. The unit accommodates up to 14 patients, and there are usually 10 to 12 patients every day. Patients may stay for a few days or a few months, depending on how quickly their symptoms can be controlled. Among today’s patients are a veteran with irreversible brain damage and patients with various end-stage diseases, including cancer, congestive heart failure and chronic obstructive pulmonary disease (COPD).

Earlier this morning, the nurse attending one of Judy’s patients told her that the patient had died. The nurse had been at the patient’s bedside when it happened. Judy has already been on the phone trying to reach the 96-year-old woman’s family to give them the news and obtain verbal permission to have the body released into the care of the funeral home. The death will not come as a surprise to the family, since Judy has prepared them and helped them with funeral planning. She will notify the funeral home and gather all the necessary forms.

After speaking to the family of the deceased patient, Judy turns her attention to the grown son of the patient with COPD. He is a tall man with a big smile and a warm hug for Judy. They walk into his mother’s room. She sleeps quietly, her breathing assisted by an oxygen machine.

Judy has been working closely with the nursing home where this patient will go when she is stable. Judy explains that the nursing home will accept his mother if they can reduce the amount of oxygen she needs. The inpatient hospice doctor believes this can be accomplished over the next few days. 

As the son gently strokes his mother’s leg, he visibly relaxes. He lives in another state and must go back soon. Now he can return to work knowing his mother is taken care of.

Each patient in an inpatient hospice unit comes with family and friends filled with fears and concerns. Unlike her counterparts—hospice social workers helping patients and families in private homes, assisted living communities or nursing homes—Judy doesn’t have the luxury of getting to know the patient and family in more relaxed circumstances. Every patient and family who comes to the inpatient unit is in crisis.

Showing Patients that Even When We’re Dying, We Matter

Today, Judy’s to-do list includes having the veteran with brain damage moved to the VA hospital nearby. He served in the US Army, and it is his sister’s wish to have him transferred. Judy is coordinating the transfer.

In the meantime, she has arranged with the hospice’s veteran liaison to hold a short service to honor the soldier. During the ceremony, as the veteran lies quietly sleeping, the liaison thanks him for his service to his country. She drapes a red, white and blue blanket, crocheted by a hospice volunteer, across his legs. She sets a certificate and a flag lapel pin on his bedside table. Everyone in attendance—the liaison, nurses, chaplain, unit secretary and Judy— salute the dying soldier.

Judy knows that taking the time to present this honor ceremony is important to the patient’s family. She knows that part of her job means helping her patients live in dignity until they die. “Even when we are dying,” she says, “we matter.”

Lessening the Burden on Families

Before lunch, when the inpatient hospice doctor arrives to make his rounds, Judy joins him. She carries her list and notes from the nurses’ meeting. Dr. Alvarez, a hospice physician since 1984, says, “I feel it’s very important to work closely with the social worker. She knows right from the beginning about the family, the home situation, the discharge plan. She can help with families who are having a difficult time.”

Judy and Dr. Alvarez arrive at the room of the 93-year-old woman with congestive heart failure, whose 83-year-old sister has been taking care of her. It has become apparent to Judy that the sister is now incapable of caring for the patient. She arranges a family meeting to discuss transferring the patient to a nursing home when she’s discharged from the inpatient unit.

“It’s important during a family meeting to be clear about what the patient needs, while not diminishing the care they’ve been getting,” explains Judy. “Each patient has a back story, and there are issues. My job is to take care of those issues.

“Once I know there is a support system in place for the patient, I look at the family to see how I can lessen their burden,” Judy explains. “As a social worker, I have to be able to walk in their shoes,” she says. “Support for the caregiver is critical, whether it’s getting a volunteer in the home or working with the home team to get financial assistance or supplemental care. It can also mean having a quiet cup of coffee and listening.

“Sometimes dying isn’t the most complex thing going on,” she says. “These families are dealing with death while also dealing with daily life, and they may need help with so many other things—medical bills, taking care of children, keeping the lights on and food on the table, going to work while caring for a seriously ill loved one. I work hand-in-hand with families to find creative solutions.”

Supporting the Staff

Judy’s responsibilities extend to the staff of the unit as well. “Sometimes, when you have several deaths at one time, it can be pretty unbearable,” she says. “The nurses are the front-line people and it can be very hard on them.”

It’s not unusual for Judy to call on the hospice’s bereavement specialist to come in for a support group meeting when the staff has experienced multiple deaths or very intense cases, such as the 6-year-old boy with brain stem cancer. “In that case, he was here in the hospice inpatient unit for a month and a half. Many of the nurses are mothers of small children. We all felt so connected to him and his mother.”

Over the years Judy has become the mental health advocate for the hospice inpatient team. She makes sure to celebrate patient and staff birthdays, anniversaries, holidays and other special occasions. She keeps the candy jar filled and always has a smile and an encouraging word for everyone.

Hospice Isn’t Always About Sadness

Judy’s day rarely ends at 5 o’clock; she usually stays to complete paperwork, make follow-up calls or to check on her patients and their family members. “I have found joy in my job as a hospice social worker,” says Judy. “In fact, my first week on the job, I coordinated a wedding on the unit. I arranged for decorations and a chaplain to officiate at the bedside of an elderly couple who had been together for a long time. The groom was on hospice. The couple was so happy to be getting married.

“It helped me from the beginning to realize that there can be joy. Since then, I have seen joy on the unit. This job has given me a new appreciation for the people and things in my life that are important.”