Terry Jenkins is preparing to die.
From her hospice bed at a local senior living community, she goes through her belongings and makes sure all her paperwork – estate documents, wills and the like – are in order.
She’s also helping to raise the last $5 million for the Hospice House of Hampton Roads, a 12-bed hospice facility a nonprofit board of community leaders hopes to break ground on soon in Virginia Beach.
“Sometimes people wanted to stay at home, but they couldn't. Because maybe their wife or husband is frail and elderly themselves, and couldn't do all the things that needed to be done,” Jenkins said.
“Or if it's a younger person, they didn't want to die at home with their children watching. The only choice they had if they didn't die at home is to end up in a nursing home. And we just felt like we could do better than that.”
Jenkins was diagnosed with clear cell ovarian cancer 18 months ago. She did some treatment, but the cancer aggressively returned and treatment options would’ve likely done more harm, so she entered hospice.
She doesn’t think she’ll be here much past springtime, so she’ll likely miss the official groundbreaking of the hospice facility she’s spent years organizing.
“I had hoped to live long enough to see it built, but I doubt that's going to happen,” she said. “So now I'm just hoping they can raise the money so that they can get the building built and get settled.”
The Hospice House of Hampton Roads will be built on a little more than two acres of land donated by Virginia Beach leaders.
It will back up to water with rooms that open to the outside so patients can enjoy the view and weather.
Westminster-Canterbury, which provides hospice care at its bayfront location in Virginia Beach, will provide medical staff to the Hospice House. Beth Sholom assisted living will help with administration, including Medicaid paperwork.
Beyond that, there will be a bereavement center open to the community because hospice care is more than just medical care, said Dr. Victoria Crenshaw, current medical director at Westminster-Canterbury. She’ll be in the same role at the Hospice House when it opens.
“It really is a very emotional, very intimate experience to be there with your loved one as they're passing away,” she said. “(Hospice is not) for dying – it’s for living the best quality of life that you can for the days that you have remaining.”
Most people involved with the Hospice House project have seen loved ones in end-of-life care. Jenkins was teaching college classes when her sister-in-law entered hospice in North Carolina. Jenkins was one her only living relatives and would often commute from Hampton Roads to Hillsborough, N.C. on a weekly basis.
“One day I was trying to get down there, and to tell you the truth, I hadn't had time to wash my clothes,” Jenkins said. “I just threw them in a trash bag and I thought, I'll find a laundromat somewhere. After I got down there, I was talking to the nurses … and they said, ‘Give me the clothes, I will wash them.’”
Her sister-in-law was also an accomplished dulcimer player. Nurses at the North Carolina hospice found a used dulcimer and found volunteers to play for Jenkins’ sister-in-law at her bedside.
“You're not going to find that in a hospital,” Jenkins said. “Those are the kind of support things that mean so, so much.”
Changing how people understand hospice
Hospice care is under utilized across the nation – and locally.
Nationally, medical providers gauge hospice use by the number of people using the hospice benefit provided under Medicare. It’s an imperfect measure because Medicare only covers elderly people, but anybody at any age can enter hospice.
In Virginia, fewer than half of Medicare recipients use hospice coverage.
Dr. Jerry McQuain is director of palliative and hospice care at Sentara. He said Sentara has more hospice care capacity than the number of patients seeking it out.
“I think families, patients, individuals, clients, community resources are under the impression that hospice is where one goes to die,” he said.
“We need to change that narrative from hospice as a place where you go to die to hospice as a place where you go because you may pass away in the next six months to a year.”
Most people who enter hospice care only get about 18 days of care before dying, according to the National Hospice and Palliative Care Organization.
But most people can be more comfortable and may be able to do more if they enter hospice earlier, McQuain said.
One patient of his was able to go on a trip to Disney World while in hospice. Another former patient of his got to go skydiving.
“Individuals come to hospice and they are still full of life and still have so much living to do,” McQuain said. “We really want to support them in that endeavor.”
Jenkins, who’s using her limited energy in hospice planning to make more space for people seeking care, isn’t interested in skydiving or going to Disney. She wants to make sure her fellow board members are set up to successfully run the nonprofit.
“I'm getting really good care, and I feel so fortunate because so many people don't get that,” she said. “I just need to get done what I need to get done. That's my main concern.”
