Hospice Care at Home Empowers Vermonters in their End-of-Life Journey
Program helps Vermonters and their families live well and cope with loss.
“Some people think that if you go on hospice, you’re giving up,” says Erica Lustgarten of Burlington. “But what I say is, ‘If you go on hospice, you’re surrounded by this blanket of love and care and basic medicine, and it’s 10 times better than if you don’t do it.’ It’s really the opposite of what everybody thinks. Instead of ‘I’m going to go die,’ it’s more like, ‘I’m going to be loved and nurtured and visited and cared for.’ And who wouldn’t want that?”
Lustgarten’s mother, Albertine DeGroot, made the decision to seek hospice care from the University of Vermont Health Network – Home Health & Hospice at the age of 88, after a degenerative heart condition left her weak, tired and unable to continue living her full and high-energy life. She had declined a surgery, the outcome of which was uncertain for a woman of her age. And, with most of her immediate family members having already passed away, DeGroot also felt she had reached the end of her journey on earth.
DeGroot and Lustgarten experienced their first of many family losses in 1971, when the oldest of DeGroot’s three children, Margit, passed away at the age of 18. After contracting scarlet fever at three months old, Margit suffered brain damage, and half of her body was paralyzed. “She then went through the rest of her life as a handicapped child, which wasn’t easy in the 1960s,” Lustgarten recalls. “My parents worked really hard with her, giving her as normal a life as they could give her.”
Lustgarten chokes back tears as she talks about her sister’s death, which devastated the family. Then, she brightens as she describes the second phase of her parents’ life together. “They went on to have this full and fabulous life. I mean, camping, hiking, tennis, skiing, biking. You name it, they did it. They went around the world six times.”
Their adventures came to an end when DeGroot’s husband, Willem, died in 2015. When Lustgarten’s brother, Ian, died of cancer in 2019, DeGroot started to shut down. “I just think losing these very important people was too much for her,” Lustgarten says. Without the “big personalities” in her family, and weighed down by fatigue, “she had a broken heart, literally and figuratively.”
When DeGroot’s doctor referred her to Home Health & Hospice, DeGroot and Lustgarten found plenty of support on that journey through the hospice program. Lustgarten talks fondly about her “team of seven” – a physician, nurse, spiritual caregiver, social worker, two volunteers and a bereavement counselor – all of whose names she still readily remembers, eight months after her mother’s passing.
“Judy was my mom’s Hospice nurse, and she was terrific. She just knew how to empower and comfort my mom, and she was really good at giving me clear information on her medical condition so that we could add or subtract things. That was really comforting for me, because it’s a little scary,” Lustgarten says, noting that the program also took care of ordering, filling and managing all of her mother’s many, and frequently-changing, medications. “As a part-time caregiver, that gets overwhelming.”
Hospice Provides Wraparound Care
In the Hospice program, emotional and spiritual support is just as critical as medical care – for the family as well as the patient. The program employs an interdisciplinary Hospice care team to provide wraparound supports for individuals and their families. What does this look like? The care team’s nurse might be coordinating with the physician to manage the patient’s medications for pain and symptom relief while a social worker is counseling a family member coping with the upcoming loss. At the same time, a spiritual caregiver is guiding the patient through coming to terms with the closing of their life. How is this possible? The care team works closely with the patient to develop a plan of care that meets the unique needs of each person (and their family, or chosen family).
Lisy McIntee, DeGroot’s social worker, conveyed that hospice care is about providing support to ensure that people get to live and die how and where they choose. “The earlier we receive the referral to our care, the longer we have to get to know our patients and develop that relationship. It helps us honor our patients by learning what is most important to them, where they want to be, how they want to spend their remaining time and what worries them most about end of life.”
The Home Health & Hospice team encourages Vermonters to talk about hospice with their provider early on, as soon as they, or a family member, receive a terminal diagnosis. (Patients or families cannot “self-refer” to hospice; the connection must come from a medical provider, when they believe the patient is likely to pass away within six months.) An early referral also gives patients the flexibility to receive hospice care either at home, or at the McClure Miller Respite House in Colchester – Vermont’s only Medicare-certified inpatient hospice residence – which can be very helpful for families.
Without the Hospice program, Lustgarten says, “[The caregiving] would’ve fallen all on me, and I think that would’ve been really challenging for my marriage, for my children, for my grandchild and for my relationship with my mother. I’m not certain how I would have navigated that, and if I would’ve come out healthy on the other side.”
‘A Lovely Way to Go’
Lustgarten says the program’s bereavement support, which started during her mother’s care and still continues to this day, has been instrumental in helping her cope with her grief. It was something she wishes she’d had four decades ago when her sister left this world.
“When Margit died, it was really hard on me and my brother,” she recalls. “Everything kind of shut down because there was no counseling. There was no bereavement.”
This time, she felt surrounded by a team she came to think of as a second family.
“I really miss Judy and Nina and Lisy and Ally and Kathy. They became friends and confidantes. To have seven people loving you and caring about your everyday stuff is a lot. Some of us don’t have that in our entire lifetime. It’s such a lovely way to be, and then a lovely way to go.”
The way Lustgarten – and many others – reflect on their hospice experience, says Maya Fehrs, is striking. Fehrs, who is the Director of Development at Home Health & Hospice, shared that after a family member has just passed away, “People say to us, ‘it was a wonderful experience.’ I think that speaks to the power of hospice, you may be grief-stricken, but you know that you and your loved one were well taken care of.”
This resonates for Nancy Long, MD, the program’s Medical Director, and a hospice physician.
“There is no question in my mind that we are needed now more than ever before,” Dr. Long says. “Aging, sickness, dying and grief spare no household; they are experiences common to us all. I want us to reach more of our neighbors in the communities we serve, holding them in the compassionate care that only we can provide, and relieving more suffering. I envision us lifting one another up, and working as a team in everything that we do, as end-of-life care is much too big for any of us to carry on our own. The world needs us all, each and every one of us.”