LIHUE — For the first time since its grassroots beginning in 1983, Kauai Hospice has its first full-time medical director.
Nancy Long, a licensed hospice physician since 2002, spent the last 10 years serving as Hospice Maui’s medical director before she started her new job as medical director for Kauai Hospice last month.
She and Lori Miller, executive director at Kauai Hospice, sat down for an interview Monday to talk about the services they provide in hopes of raising awareness among the island’s residents who may need their help but aren’t aware it is available.
“I think the most important thing we’re trying to do is reach more people in the community,” Long said.
She hopes to educate people about hospice and to dispel myths about the service.
According to the website for the National Hospice and Palliative Care Organization, hospice is a specialized care for those facing life-limiting illnesses. The care extends to the patients’ families or caregivers and is provided in their home, with the goal of making patients as comfortable as possible, allowing them to make the most the time that remains.
Hospice is not just for people with only a few days to live, Long said. The care provided by Long and other physicians with Kauai Hospice is available to anyone diagnosed with a terminal illness and a life expectancy of six months or less, and the service is covered by Medicare and Medicaid.
“It’s not about giving up. It’s about living every moment to the fullest,” Long said. “Hospice services can help people live longer and better.”
“People think they’re helpless and hopeless, not in control,” Miller added. “We see the opposite.”
Despite the fact that the people in hospice care face rapidly-dwindling lifespans, Long said she has learned that rushing to get things done is the last thing her patients need. In fact, a big factor in her decision to come to Kauai was that she felt the slower-paced lifestyle would be more conducive to good hospice care.
“When you’re caring for the dying, you have to slow down to the pace of nature,” she said.
Nancy Long was a pre-med student in her 20s when she lost her mother to cancer. By the time she was diagnosed, the disease had already progressed to an advanced stage, and Long watched helplessly as her mother deteriorated in a hospital bed.
What she wouldn’t learn until later, was that another option existed.
Long was left to navigate the confusing waters of late-stage cancer treatment on her own, a process she now says could have been so much better if she had been aware that hospice care was available.
“I wondered why nobody ever connected us,” she said, reflecting on a time she described as simultaneously confusing and heartbreaking. “I kind of made it my mission that nobody else would have to go through that.”
The loss of her mother would later influence her in ways she couldn’t have anticipated. When she lost her mother, Long said she didn’t even know what a hospice physician was. But years later, as she worked 36-hour shifts while completing her residency training at Brown University Hospital in Rhode Island, she found herself inspired by the doctors there who cared for the terminally ill.
“I felt a calling,” she said. “It just felt like I was born to do this work.”
Two decades later, Long said she is still driven by the same passion.
When asked how she copes with losing every single one of her patients, Long responded in an interesting way. She explained that it’s all a matter of perspective.
“It’s sad but not depressing,” she said, describing what it’s like when one of her patients dies. “We see it as a natural part of the life cycle.”
Beyond quality of life, Long said she was drawn to the island by an affinity she felt for the team at Kauai Hospice, which she called “a group of very dedicated, compassionate, professional practitioners.”
Miller and Long said one of their shared goals is to build an in-patient facility at Kauai Hospice for patients whose home is not conducive to receiving long-term, intensive medical care. Long was able to organize funding for a similar improvement at Hospice Maui and hopes it can be done on Kauai, as well.
For Long, the rewarding part of her work comes from the love and care she witnesses from her patients and their families.
“We receive in return so much more than we give,” she said.
According to Long, when people reach the point in their lives where death becomes an impending reality, they take time to reflect and tell their loved ones things they were never able to say before.
“There’s a tremendous gift in that,” she said.