By Kim Painter
Special to USA TODAY
ALEXANDRIA, VA — It’s a gray, drizzling Tuesday morning. Kathy McLaughlin has gotten her three kids off to school and is piloting her cluttered mini-van past strip malls and subdivisions.
She’s chatting on a cell phone and glancing at a clipboard, finalizing the day’s appointments.
First, she’ll visit a baby with a life-threatening chromosomal disorder.
Then she’ll drop in on two middle-aged women with terminal cancer. Last, she’ll see an older lady with advanced liver disease.
For McLaughlin, it’s going to be a good day.
McLaughlin, 42, is a home hospice nurse — the sort of nurse many of us will meet when a spouse has terminal cancer, when a parent has reached the last stages of Alzheimer’s disease, when we ourselves are dying.
And we’ll wonder: What makes her tick? How does she do this work? Isn’t it depressing?
Follow McLaughlin around for a few days and one thing becomes clear: She’s not depressed — not by a few clouds or a little drizzle and certainly not by the fact that all of her patients have an official life expectancy of less than six months..
“We’re all born. We all die,” she says. “I just feel privileged to get the chance to meet this person who may not be around much longer… I want to enjoy the moment with this person. And I want them to enjoy the moment with me.”
McLaughlin came into the lives of Joe and Teri Dolsak just two days after they brought baby Sarah home from the hospital.
The homecoming was a victory: Many babies with Sarah’s chromosomal disorder, known as Trisomy 18, die in the womb, at birth or shortly afterward. Fewer than 10% reach a first birthday; most die of heart failure. Those who survive have a limited ability to develop mentally.
But, on this chilly morning, Sarah is a soft, pastel bundle, snuggled on her mother’s shoulder. A fire burns in the family room fireplace. There’s coffee brewing in the kitchen.
McLaughlin sips a cup and kneels in front of Sarah and Teri.
“Hi sweetie,” she says, as she strokes Sarah’s hair. She notices how pink Sarah’s skin is and says, “Good girl.” The color in Sarah’s cheeks means that her heart is still doing its job.
McLaughlin places a stethoscope against the baby’s chest and back. She breaks into a big smile: “Her lungs are perfectly clear,” she tells Teri and Joe. This is good news, because just a few days earlier, Sarah, then four months old, was hospitalized for a respiratory infection.
McLaughlin asks Joe and Teri whether they have the syringes, heart medications and other supplies they’ll need to get Sarah through another week.
Everything is in order. And McLaughlin agrees there’s no need to wake tiny Sarah for a weighing today. “We’ll just let you sleep,” she says.
McLaughlin’s visits are “a real blessing,” Joe Dolsak says.
“Professionally, she has been able to be honest about the reality that we many face losing our daughter,” he says. “Personally, she has been rooting for every success Sarah has made.”
Today, Sarah is succeeding by looking pink and sleeping peacefully. She’s having a good moment. And her nurse is, too.
It’s another morning, another patient. The sun streams through floral lace curtains in the room where Kathryn Francis has lain almost every hour of the past year. Francis has advanced Alzheimer’s disease. The brain-ravaging illness has confused her mind and contorted her body. On many days, she does not speak and appears to understand nothing.
But this morning, she’s answering questions with, “Oh my, yes,” and “Nooo.” She even chuckles once or twice. It just happens to be her 86th birthday. When McLaughlin asks, “How old are you Kathryn,” the white-haired lady answers quite clearly: “I’m really not that old.”
McLaughlin laughs. “You are really chatty today,” she says. “You are just thriving away.”
Now the nurse gets to work, lifting Francis’s frail arm to apply a blood-pressure cuff, gently prying open a fist to find a finger for an oxygen check. McLaughlin and an aide apply lotion to Francis’s hands and cover them in red mittens; the mittens will prevent her from scratching her delicate skin.
And then, McLaughlin turns the patient on her side and begins to look for pressure sores. She always finds some, she says. That’s just what happens to people who spend month after month immobile in bed. And so McLaughlin must count the sores, clean them, dress them and make sure they do not become infected.
“I’ve never been squeamish,” she says. As she continues to work, she talks about her childhood in Connecticut, how she and her brother used to upset their parents by discussing biology experiments at the dinner table. The brother grew up to be a doctor. McLaughlin became a registered nurse and worked in both a geriatric ward and a newborn intensive care unit before settling on a hospice career.
Back in her days on the geriatric ward, McLaughlin says, she learned that she loved working with elderly people. “They have great stories,” she says. “They’re better than novels.” But, she says, she also saw too many people who died in pain, away from home and hooked up to needless machines.
In home hospice care, she says, “I know I’m making a difference.”
Today, she finds that some of Francis’s old sores are healing rapidly. “It’s incredible,” McLaughlin marvels. “Kathryn, did you know that your body is pretty incredible?”
“Ohhh,” Francis says.
Back in her mini-van, McLaughlin takes some notes on a laptop computer. She explains that when she gets home, she’ll send her notes to a database kept by her employer, Capital Hospice. The information will help the nurses who answers patients’ calls on evenings and weekends, when McLaughlin is not on duty. It also will be available to the doctors, social workers and other professionals who make up each patient’s care team.
When the notes are filed and the laptop is closed, McLaughlin will turn her attention to other things. She will play with her four-year-old daughter, tackle math homework with her high school son. On weekends, she’ll ride bikes with her children and her carpenter husband. She’ll work in her yard.
Sometimes, when she is digging in her garden, McLaughlin says, she will glance up and see the two azaleas given to her by a former patient. “They are the only ones I have that bloom twice a year,” she says. “The man died two years ago, but his plants are still thriving in my back yard.”
McLaughlin says she often talks to her children about her work. Her little girl and her boys, ages 12 and 14, even have gone on a few patient visits, she says. It’s good for the patients and good for the children, she says. “They know that people die,” she says.
But, for the most part, McLaughlin says, she draws a line between her work time and her personal time.
Even in a dire emergency, even when a patient is dying, she rarely takes a phone call or makes a visit outside her regular working hours.
The reason is simple: Nurses who worry about their patients every minute, who respond personally to every crisis, are the ones who burn out, she says. The literature on end-of-life nursing is full of such stories, of nurses felled by too much caring and too much grief.
“You can’t be there for everyone, every time,” McLaughlin says. “If you did that, you’d have no goodness left.”
Today, McLaughlin is visiting a 50-year-old woman who is losing her fight with breast cancer. The woman, who would rather not be identified, is struggling with pain, nausea and fear. The cancer is effecting her brain now, and sometimes she believes hospice staffers are trying to lock her in her house. She is just as worried that they will force her out of her house and into a hospital.
“I don’t want you to put me away,” she says.
“We only take you there if you want to go there,” McLaughlin assures her.
And then McLaughlin does all of the things on her official list: blood pressure, pulse rate and oxygen checks, a dressing change, a talk about appetite. But she also asks after the grandchildren playing basketball in the backyard and the daughter and husband waiting anxiously downstairs.
When the patient can’t find a pill bottle, McLaughlin offers to look for it. She goes through closets, refrigerators and plastic bags. In desperation, she starts looking under beds, behind dressers, even in piles of folded laundry.
She can’t find the pills.
If ever she was going to lose her good humor, it might be now. A fast food hamburger is getting cold out in the mini-van, she is one hour late for her next appointment and the missing medication is going to mean extra paperwork later.
But McLaughlin is starting to laugh.
The patient is laughing, too. She motions for McLaughlin to come sit beside her. “I know you’re getting tired,” she says, putting her arm around McLaughlin. “But you’re my nurse.” She puts her head on McLaughlin’s shoulder.
It’s another good day, another good moment.
Postscript: The 50-year-old cancer patient died in her sleep, in her daughter’s home, two days before Christmas.
More than half of Americans who die of cancer and more than one out of four who die of any cause now receive hospice care to ease pain and suffering in their final days, says the National Hospice and Palliative Care Organization (NHPCO).
The organization, based in Alexandria, Va., estimates that about 20,000 nurses like Kathy McLaughlin are involved in hospice care, most of which takes place in patients’ homes. They are part of teams that also include doctors, home health aides, social workers, chaplains and volunteers.
The job often attracts nursing veterans, says Chris Cody, a NHPCO vice president. “It takes a certain maturity,” she says.
But, she says, the work is rewarding for most. While there is a shortage of hospice nurses, it is not as severe as the shortage in conventional hospitals and nursing homes, she says.
Pat Gibbons, a hospice nurse manager in Greensboro, N.C., says the job often is a refuge for nurses frustrated by long shifts and heavy patient loads in other nursing jobs.
“It takes them back to the essence of nursing… hands on care-giving of a patient and a family,” she says. “They know they are making a difference.”
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