Health Care
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HospiceCare nurse Kristin Keir provides at-home care to William "Mac" McCullough, one of her 15 patients she has under her charge.
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The Business of Hospice Care
September 1, 2009
As reported in the pages of In Business magazine.
"You've got five percent less lung capacity from the latest test," HospiceCare, Inc. nurse Kristin Keir, 34, tells her patient, "but, here you are!"
Defying all the odds, she means.
It's a sunny, summer day, and Keir visits her patient, William "Mac" McCullough, an 80-year-old gentleman with a diagnosis of COPD (Chronic Obstructive Pulmonary Disease). In 2005, McCullough was given six months to live and his family called HospiceCare. There have been several scares since then, but McCullough keeps battling through. Keir has worked with him for the last two years, checking in on a weekly basis, in his home, the way he prefers it.
His condition meets the numeric criteria of HospiceCare, and because he's dependent on oxygen, his hospice benefits continue. But having a two-year relationship with a hospice patient is a rare occurrence.
"So, your lungs are operating at about 20% capacity," Keir tells McCullough, sitting comfortably in a corner of his long-time family home, just steps away from the Lake Mendota shoreline. With oxygen piping into his nostrils, McCullough reacts, "So I don't have much more to go, in other words?"
Keir nods. She takes his vitals. His blood pressure is 110 over 70. "Pooping and peeing okay?" she inquires. He nods. She checks his heart, lungs, and stomach. "I think you're good!" she says, packing up her stethoscope.
This is not a depressing visit. McCullough is charming, witty, and, as we quickly learn, once held a two-year post on Madison's city council. "I've been busy!" he says of his life. His memory is sharp as he recalls controversial votes he made in that capacity. "I got quite an education, and had a great time!"
With a twinkle in his eye, he chides his nurse about a long-standing joke — something about a skinny-dipping party he intends to throw. They banter back and forth playfully. "I'd love to have another cigarette," he suddenly announces, knowing full well those days are behind him.
Within arm's reach are nebulizers McCullough uses to aid his breathing. As Keir checks the apparatus, the patient's mischievous side reappears. With laughing eyes, he jokes about lighting and passing the nebulizer tube around like a marijuana cigarette. Asked how he would know about such things, he just grins, "I've seen it on TV!" he insists. The room brightens.
"Kristin's a good gal," McCullough says. "She takes her job seriously." Keir stays for another half hour as we all learn a bit more about McCullough's life. For those few moments, it's hard to imagine the fate that awaits this proud man and his loving family. McCullough's daughter Sherry, visiting from Colorado, is also present this day. Her mother Betty, McCullough's wife of 56 years, is asleep upstairs.
Keir is one of 134 registered nurses employed by Dane County's HospiceCare, Inc. It is a salaried job she calls her "soul-work." Prior to joining HospiceCare, Keir was an OB/GYN nurse for a multi-disciplined physicians practice. "When I saw the ad for Hospice, something kicked in," she said, admitting that for the first time, she's really happy. "I know that I'm in the right place."
Keir, with HospiceCare since December of 2005, admitted she felt like a novice in the beginning. "I was a pretty big sponge for the first year," she recalled, adding that her previous jobs had not required a lot of physical assessments, or critical thinking related to medication choices. The day she lost her first hospice patient, she remembers going home, standing on her porch and crying.
"I allow myself that every now and then," she said, adding that she also receives a lot of support from family and friends. "It's okay to let people see you be emotional. That's normal and natural. People say, 'Oh, it gets easier,' but I hope I'll never be that nurse that says that. I want to keep everyone special."
Keir describes her hospice duties as holistic. "[My job is to] make sure my patients are comfortable physically. I work with pharmacists, doctors, and families, of course, but part of what I do is bear witness with [my patients] and guide them spiritually and emotionally." Of the 15 patients currently under her care, she says McCullough is in the best condition. He still gets out for dinner twice a week — with the help of a 24-hour live-in assistant — to his favorite haunts: the Avenue Bar and The Esquire Club. [The family pays separately for two assistants not affiliated with HospiceCare.]
"I don't feel like a rare bird," Keir says of her job choice. "[Our patients] are the remarkable ones. They let total strangers in and allow us to help them. At the end of the day, I count myself really privileged to do this work. These are precious times, and many don't have this opportunity. I help people meet some of their end-of-life goals."
The work is hard, she says, and intense sometimes. But the support system she receives from the HospiceCare staff, including other RNs, LPNs, social workers, chaplains, volunteers, and grief counselors, allows her to prioritize her days efficiently.
For the most part, each day is dictated by her patients and their families, though she also works fairly independently. "I'll call doctors to suggest what might work for my patients, and nine times out of 10, they'll just say 'do it.'"
Sometimes, she admits, there is some pushback from physicians who might lack end-of-life experience. Then there are the days where she wishes she could be in five homes at the same time. "I'm thankful I have a backup RN and LPN," she said. On-call backup is available around the clock.
Most important, Keir said, is the ability to always focus on the present and the patient in front of her. That, she says, "is really, really important. There are times when [being in the present] is tough to do if there are a million things going on."
One of Keir's biggest frustrations is that people in the end-of-life stage aren't sent to hospice sooner. "It's never too soon," she insists. Indeed, 50% of those served by HospiceCare are admitted just two weeks prior to death. "That's upsetting when you realize what those patients are missing out on," she says, citing satisfaction surveys that show the top regret of families is that they didn't call hospice sooner. "When patients come in within the last few weeks, days, or hours of death, that's such a short period of time for us to help them emotionally and spiritually for their journey."
And when that final moment arrives, Keir says her role often involves watching how the families react, answering questions they may have, offering pointers on keeping patients comfortable, and observing and translating a patient's verbal or nonverbal communications at life's end.
"If I'm not there, I'm on the phone with the family every day." It all comes back to the patient's individualized plan of care.
Keir says the rewards she gains from her job far outweigh the difficult moments. "I learn so much from my patients," she says. "In the end, I feel like I'm a better clinician. I've inevitably learned a new skill, task, or about a new medication, and often feel like I'm a better person. I've heard husbands and wives interact during their last moments, and it's changed my life. It's easier for me not to get caught up in my own rat race."
Her biggest honor, she says, are the connections she makes with patients and their families; the ability to become "a tiny insider into their lives, helping them meet goals, and watching people die comfortably, when they feared they couldn't." If a patient requests a special dinner, HospiceCare will try everything to provide it. "One person wanted to see the ocean," she said, "so we'll find different ways to bring the ocean to them."
In 2008, approximately 37% of HospiceCare patients had cancer, while 63% had a combination of heart, lung, and kidney disease, ALS, AIDS, or Alzheimer's disease. Patients ranged in age from two days to 107 years. On this day, the nonprofit is serving 630 patients, with just a fraction receiving in-patient care at the HospiceCare facility.
Back in the McCullough household, "Mac's" son Clint has walked in. Sherry and Clint are two of four McCullough children. They speak about the peace of mind they feel, knowing their father is well cared for.
"They are all saints," said Clint, of all his father's helpers. "I don't know how we'd do this without them. They are underpaid and overworked. Hospice braces you for what's coming in an open, gentle way. They're there for you and offer reinforcement."
Unable to avoid the elephant in the room, I ask McCullough what it's like knowing his days are numbered? He shrugs matter-of-factly. "I'm gonna die sometime, why worry about it?"
And that is the day's teaching moment.
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