Hospice care is “a lifesaver” for this Caldwell couple
When Kara Craig’s father was about to die last year, Craig called a death doula.
A doula is a helper who usually cares for women giving birth, not women or men at the end of life. But as the Treasure Valley’s 60-and-older population grows faster than the overall population, the need – and the market – for serving the dying is growing as well. That created a niche for Nancy Compton, 56, a certified nursing assistant and hospice clinician, to also offer this service and comfort.
“I sit vigil with them, but I’m also giving care,” Compton says. “It’s important for people to know that no one walks this journey alone.”
All of Idaho is getting older, partly as retirees move into the state, but mostly as Idaho’s own baby boomers age. And how Idahoans experience aging and end-of-life care is changing.
The first baby boomers turned 65 in 2010, but the people born at the peak of the boomer era — between 1953 and 1960 — will be hitting that mark between now and 2025. This silver wave is set to become a tsunami. It is already expanding the provision of end-of-life care.
Compton, for instance, is the first and only medically certified doula in Idaho, a result of her nursing-assistant training and her certification by the International End of Life Doula Association. She works for Craig, a co-owner of First Choice, a Boise home health and hospice company that now serves 65 hospice patients, up from 35 three years ago.
Craig has hired 10 new hospice employees in the past 18 months.
“We have seen the need for hospice services increase quite a bit in the past few years as the baby boomer population ages,” Craig says.
Nationally, hospice is a $19 billion industry that is growing every year. Idaho now has 50 for-profit hospices, up from 43 in 2013. Many of those are adding more locations as need grows.
The Treasure Valley’s two major health systems – Saint Alphonsus and St. Luke’s – are putting more resources into services for aging Idahoans, including hospice. They are expanding their focus on integrated care, including departments that deal with people who are battling multiple conditions and need palliative care.
Craig’s business has two other units: HouseCalls, which offers home visits by doctors and nurses; and Home Health, which brings therapists and other skilled services to people’s homes. Combined, she now has 96 employees, up from 48 in 2016.
“Going in, we knew there were a lot of hospice companies in the community, but we knew we could find a place for our model of care,” Craig says.
She acknowledges that death as a business can seem crass to people.
“We get that a lot,” she says. “People don’t want to talk about it, but people die every day, and they’re going to die with or without our help. Shouldn’t they get a chance to live their final days with dignity and have a say in how that works?”
Compton began work as a death doula by starting her own company, 11th Hour Care, five years ago. She has held the hands of hundreds of people as they take their final breaths. She also helps a dying person’s family work with medical providers and funeral homes. She often helps with filling out death certificates and arranging burial or cremation.
“I can give them medication, I change them, bathe them, whatever is needed,” Compton says. “When I’m there, they’re with someone who is experienced and educated in the process of end of life.”
As an independent contractor, Compton found that most hospice companies had never heard of a death doula. “They didn’t know what to do with me,” she says.
Finding a home at First Choice changed everything, she says.
She works overnight shifts – 9 p.m. to 8 a.m., or longer when needed. Support at night is the initial need she saw while working at an assisted-living facility a few years ago.
“During the day, hospice has a whole team working,” Compton says “At night, the families and facilities have need for that extra support. They need that extra boost.”
Medicare drives hospice care
The end-of-life doula is a recent trend in hospice care internationally. It’s an added layer of support that families can opt for. But there’s a problem: doulas are not covered by Medicare’s hospice benefit.
Hospice brings an array of services to patients facing a life-limiting illness, including palliative care for pain and symptom management.
The hospice movement started in England in the 1940s. The first U.S. hospice opened in 1974 in Connecticut, and Congress made Medicare’s hospice benefit permanent in 1986.
Medicare dictates what hospice should be, Craig says.
For Medicare to pay, a doctor must certify that a patient is in his or her last six months of life. With a physician’s referral, a patients can enter hospice care on Medicare for up to 90 days and be renewed for an additional 90. If the doctor guessed wrong and the patient is still alive, the care can continue after 180 days, though it is re-evaluated every 60 days.
Medicare fully covers medications, services and equipment. Hospice care costs about $148 a day, according to the Medicare Payment Advisory Commission.
Critical hospice care is covered at $48 an hour. That’s usually when someone is experiencing an extreme amount of pain or is actively dying, says Jon Radulovic of the National Hospice and Palliative Care Organization.
Craig says Medicare offers enough flexibility to let companies tailor care to the individual. Some providers offer pet therapy. Some offer acupuncture and massage.
Because of Compton’s medical certifications, her doula duties can be treated as nursing skills covered by Medicare.
Hospice agencies come in a variety of models. Some, like First Choice, have one location. Others have several; Meridian-based Auburn Crest has four in the state. One of the newest hospices in Idaho is Abode Hospice, a Colorado company that opened a Meridian office in October.
Getting into hospice
Since the first time Jerry Wilson of Caldwell heard about hospice decades ago, he thought of it as a death sentence. Now, after a year of receiving care and support for his wife, Pamela, he thinks it’s a lifeline.
“I had in my mind, that as soon as hospice comes around you’re dead,” he says. “It’s not so. I think she’s lived longer and had a higher quality of life — both of us have — since we started this a year ago.”
Pamela Wilson, 64, struggled with multiple sclerosis, a neuromuscular disorder, most of her adult life. The couple managed her condition and she was stable with therapy and medication for many years.
Fourteen years ago, a massive stroke upended both their lives. Pamela was forced to retire from her teaching career at the Caldwell School District. Jerry, a railroad worker who also managed a 140-acre farm, became a full-time caregiver.
About 18 months ago Pamela fell and broke both her ankles. Bedridden, she spent three months in a nursing home. Then the Wilsons were referred to First Choice.
Pamela is entering her second year of hospice care. “I think she’s lived longer because of the care,” Jerry says.
Getting there sooner
Both of the Treasure Valley’s big hospital systems offer hospice care. Saint Alphonsus offers it in partnership with Frontier Home Health and Hospice. St. Luke’s has expanded its own hospice service that it started 40 years ago, the only nonprofit hospice in Idaho.
People need to access hospice earlier, says Kendra Tietz, clinical manager for St. Luke’s Home Health and Hospice.
Nearly half of all deaths in the country happen through hospice, but about 30 percent of those people are under that care for only one to seven days, according to the latest data from the National Hospice and Palliative Care Organization
“We’ve got to figure this out,” Tietz says.
The No. 1 reason is that many people don’t want to give up the fight, she says.
St. Luke’s is part of a Centers for Medicare and Medicaid Services pilot program called Medicare Care Choices. The idea is to provide hospice-level care while people continue other treatments, such as chemotherapy or dialysis.
“There are barriers, but it’s really empowering the clinicians and beneficiaries and their families,” Tietz says. “It offers a greater flexibility when faced with these life-limiting conditions.”
The centers will look at whether providing this new level of care can improve the quality of life and care for people, increase satisfaction and reduce Medicare expenditures.
The hospital is two years into a five-year study and so far has served about 25 people.
Saint Alphonsus, meanwhile, opened a palliative care clinic in 2016 to provide the same services hospices do: pain and symptom management, emotional support, advance care planning ‑ - plus clarifying goals for treatment. But it aims to provide them sooner in a patient’s life.
“There is a growing awareness that referrals happen too late,” says Chad Boult, a physician who heads the hospital system’s Enhancing Care Initiative.
The guideline for entering palliative care is the prognosis of a year of more to live, he says.
‘We need to learn how to die’
Compton says serving people at the end of life is deeply satisfying.
Most Americans today have aren’t as prepared for the shock of a loved one’s death as past generations were, she says.
“We lived in multigenerational homes and saw grandma die in the same bed she was born in,” Compton says. “We’re really removed from that.
“What we know is what we see on TV: They’ve got their makeup on and their hair done. They close their eyes, and it’s like they’re sleeping. That’s not how people look. They’re not beautiful. And it can be really hard for families.”
The oldest person Compton has served was a 104-year-old woman. As she lay dying, she told Compton: “It went so fast.”
Compton says, “We need to learn how to die. There’s no getting around it. We’re all going there. The more you fight, the harder it is. When we disengage from our body, we just slip away. I’ve seen it hundreds of times. It’s a miracle. It’s awe-inspiring.”
This article is part of special coverage of health, with a focus on aging, in the March 21-April 17, 2081, edition of the Idaho Statesman’s Business Insider magazine. Dana Oland: 208-377-6442, @DanaOland
How Idaho’s population is changing
According to the 2010 U.S. census, residents 65 and older made up 12.5 percent of Idaho’s population of 1,571,450 — about 196,000 people. By 2016, they made up 15.2 percent of Idaho’s estimated population of 1,683,140 — about 256,000 people. That’s an increase of about 60,000 people.
Only 8 percent of Idaho’s new seniors are retirees moving into the state. The rest are Idahoans growing older.