BOISE, Idaho — Through every trial and triumph in her life, Linda Morris says her mother, Shirley Feeney, poured out pure, unconditional love to her. Which is why she yearned to do the same for her in her dying, and why it grieved her so deeply to see her mom suffering so unnecessarily from the effects of ovarian cancer.
“It was a living hell to see her suffer, not from the cancer but because no one could properly manage her symptoms,” Morris says. “I wanted to give back to this beautiful woman who had cared for others her whole life, and I couldn’t.”
That helplessness she and her family experienced revealed what the former Fargo resident describes as a crack — even chasm — in the area’s health care system concerning end-of-life needs, but work is now underway to build a first-of-its-kind facility in North Dakota to help meet those demands.
Feeney required more care than the hospital palliative unit allowed and that the nursing home, where she spent a portion of her last days, was equipped to handle. Hospice, designed for home care, was also insufficient.
“We did every possible thing for our mother, tapping into every resource we could,” Morris says.
Appalled by “this huge area of neglect,” after her mother’s funeral in August 2017, she began diligently searching for solutions. It would be months before she’d make the connection she’d been praying for, but when Morris was directed to Tracee Capron, her heart leaped.
“I recognized instantly God’s hand in her,” Morris says, explaining how the Hospice of the Red River Valley (HRRV) executive director had been prepared through her career as a nurse who’d helped build a hospice house in Ohio.
A hospice house is a peaceful, homelike residence offering an alternative for people who are terminally ill and need short-term care that cannot be provided in their home. It also has room for family members to gather and relish time with their loved one, with emotional, physical and spiritual support. Morris soon discovered her own uncle had helped raise money in his small Michigan community to build such a facility.
“North Dakota is the only state in the nation that doesn’t have a hospice house,” she says.
But thanks to her efforts and HRRV, that is about to change. Capron says coming to Fargo nearly four years ago felt like a summons from God, and she soon learned why. Having worked in hospice care for over 20 years and palliative care for 12, she “was floored” to discover North Dakota lacked a hospice house. Anyone who’s experienced such a service knows the difference it makes, she says.
“There are physicians and nurses and chaplains on site, and everyone is working on the same goal, along with family rooms, areas where kids can play, cooking spaces — just like home,” she says.
Capron says despite a great local health care system, a gap remains.
“There are no do-overs in death,” she says. Or, as noted on a hospice house brochure, “Hospitals are designed to fix and heal, not to provide a comfortable dying process.”
Walter Johnson, an internal medicine physician for Essentia Health, says in years past, a patient at the end of life might have stayed in a hospital for a month and even died there, but that rarely happens now. Additionally, current alternatives cannot accommodate all the needs, resulting in frustrating, fragmented care.
“There’s a unique subset of symptoms that occurs during the dying process, and when they’re not managed, there can be a lot of suffering,” Johnson says. “It’s good to have a place where (these patients) have devoted nursing care equipped to address these needs.”
Janna Kontz, a chaplain and grief specialist for HRRV, says those approaching end-of-life also have unique spiritual needs.
“All the unimportant things have kind of fallen away at that point,” Kontz says. “We come into this world, and we’re going to go out. At hospice, we try to make that going-out a respected and dignified journey.”
‘Such a relief’
Kontz assures that while the local hospice house will be medically equipped, it won’t feel clinical, allowing families a peaceful communion with their loved one. Capron describes a hospice house as a “steppingstone” that, for some, will be a temporary stop before returning home once symptoms are managed. In rural areas, where medical care often requires lengthy travel, a hospice house will be especially beneficial.
“One gentleman lived in a hotel (for months) while his wife was dying,” Capron says, noting that a hospice house would relieve these burdens. She says the future 18-bed facility, for which preliminary plans are already in place, will be “a gem in the community; a diamond for families” needing support at a crucial time. Morris says everyone knows someone who will someday need a service like this, and it makes sense to rally around the effort.
“People are hurting this very minute. For them, it’s already too late,” she says.
It came too late for Terry Brunette. His daughter, Brenda Giere, describes their experiences in her father’s final battle with brain cancer much like the Morris family’s, with confusion, desperation and transfers from one facility to the next. She recalls the anguish she felt learning her father couldn’t stay in palliative care, knowing a nursing home wouldn’t meet his needs or desires.
“Even as I followed my dad by ambulance (to the nursing home), I knew this wasn’t going to work. I knew it wasn’t what he wanted,” she says.
They switched courses, and her father died peacefully at home under hospice care 48 hours later.
“Hospice care allowed me to be able to do the best I could do for him, and execute that in such a wonderful way, upholding all the integrity of who he was,” Giere says. “It would have been such a relief if a hospice house would have been one of the choices for us in that time of need.”
Despite their own great heartache, Morris says her family’s experience has become purposeful. To her, North Dakota’s forthcoming hospice house is “Shirley’s Project.”
“Her whole life was about giving to others and doing anything she could to lighten others’ burdens,” she says. “This is an extension of Mom’s loving heart reaching down from above, helping to meet the needs of others. God and Mom have taken the lead on this endeavor and are guiding it.”
To support the effort, call HRRV at 701-356-1600 or visit www.hrrv.org.
[For the sake of having a repository for my newspaper columns and articles, I reprint them here, with permission, a week after their run date. The preceding ran in The Forum newspaper on Nov. 8, 2019.]