ussell Kelley, Dick Wilderman and Gary Searcy toss out witticisms as quickly as their cards during a recent game of pitch in Kelley’s kitchen. The three men play cards once or twice a week in his Carlisle, IA, home, often joined by Kelley’s son Larry.
“I’m just here to let Russell win card games,” says Searcy, frowning at another bad hand. He teasingly accuses Wilderman of cheating. “This is the first time I’ve seen Dick in short sleeves,” he points out.
This would be a typical scene among three retirees except for the many feet of tubing that tethers Kelley to the oxygen concentrator crouched in the living room. Wilderman and Searcy, both volunteers for HCI Care Services of Central Iowa, have known Kelley for only a few months. Before the card game started, the group included Dana McCarthy, an HCI social worker, and Kathy Smith, a registered nurse who’s certified in hospice and palliative care.
“I’m the eyes and ears of the doctor,” says Smith, who visits Kelley twice a week. “I educate Russell on his medications and what he shouldn’t be doing.”
“Then I tell her what I should be doing – then we compromise,” Kelley jokes.
His pulmonary fibrosis and chronic obstructive pulmonary disease clearly don’t inhibit the banter.
“What Russell doesn’t know,” Wilderman says in an obvious joke, “is that Gary pinches his oxygen tube if he’s losing at cards.”
End of life: Let’s not go there
MANY AMERICANS with debilitating conditions like Russell Kelley’s, such as heart and lung disease, cancer and dementia, receive care in hospitals and care centers, not in their homes. If you ask 10 people where they’d want to receive care for such illnesses, though, chances are – after jokes about in the embrace of Scarlett Johansson or George Clooney – they’ll say at home, surrounded by loved ones. The problem is that in our death-denying culture, too few of us make the proper plans or even have the conversation with loved ones until deep into the disease – or later.
“Having conversations about end of life is not what we want to do with our time,” says Rita Lepeska, M.P.H.’06, R.N., director of Mercy Hospice in Des Moines.
In general, doctors aren’t comfortable having those conversations with their patients, either. Despite the fact that death is the one absolute certainty for every living creature, doctors and other health care providers, understandably, want to do all they can to fend it off.
In an article last August in The New Yorker, Atul Gawande, M.D., a surgeon, writer and associate professor at Harvard Medical School, stated: “Our medical system is excellent at trying to stave off death with eight-thousanddollar- a-month chemotherapy, three-thousand-dollar-a-day intensive care, five-thousanddollar- an-hour surgery. But, ultimately, death comes, and no one is good at knowing when to stop.”
In the article, Gawande followed the experiences of patients, including a new mother with terminal lung
cancer and an older woman with a ruptured colon
who’d suffered a heart attack, whose care providers
were highly reluctant to end aggressive treatment. While this drives up the cost of health care, he noted the costs of failing to meet such patients’ emotional, social, psychological and other needs should be measured in more than dollars.
“The hard question we face,” Gawande stated, “is not how we can afford this system’s expense. It is how we can build a health care system that will actually help dying patients achieve what’s most important to them at the end of their lives.”
In a geriatrics course on end-of-life decision making, Denise Hill, J.D., M.P.A., assistant professor in DMU’s health care administration program, asks students to close their eyes and contemplate what they know about how a loved one would want to die: Would they want life-sustaining procedures? Who will speak for them, if they can’t, about medical care and finances? What do they want to happen to their children and possessions? Do they want their organs donated? Cremation or burial?
Hill then asks students to close their eyes again and consider: Do their loved ones know how the students themselves would want to die?
In our death-denying culture, too few of us make the proper plans or even have the conversation with our loved ones until deep into the disease – or later.
In general, doctors aren’t comfortable having those conversations with their patients, either.
“It’s important we plan for death and incapacity when we have the ability to make decisions,” Hill says. The advantages of doing so include peace of mind for the individual and his or her loved ones, the chance to make good financial plans and the knowledge the individual’s decisions – not those of an unknown judge or doctor – will be fulfilled.
As a paramedic, Garrett Feddersen observed the consequences of not making those plans. “It can tear families apart and place a lot of stress on providers if end-of-life wishes are not clearly discussed and documented,” he says. Now a thirdyear DMU osteopathic medicine student and president of the Emergency Medicine Club, he and classmate/club vice president, Mary Haas – who witnessed similar issues as an emergency department technician – wanted to do something about the problem.
At Hill’s suggestion, their club teamed up with the DMU American Health Lawyers Association Student Group and Drake Law School students to produce a brochure, for distribution at DMU’s annual Senior Health Fair and other events, on key end-of-life choices, including:
- ADVANCE DIRECTIVES: The two legally recognized in Iowa are living wills that detail life-prolonging medical procedures a person would want and would not want; and power of attorney, which identifies someone to make decisions regarding health care, finances and other matters, should an individual become temporarily or permanently unable.
- DNR, or “do not resuscitate,” is a document that tells family members and medical providers an individual does not want cardiopulmonary resuscitation if his or her heart stops beating.
- ORGAN DONATION for transplant, education or research purposes.
‘Just try and ruin my day’
IN MARCH 2010, Brian Pritchard, a loan officer with Wells Fargo in Des Moines, noticed a lump under his right arm. His wife, Stacey, then a second-year student in DMU’s doctor of physical therapy program, persuaded him to see their family practice doctor for what she initially thought was a fluid-filled sac from a muscle pull.
The next day, April 1, Brian was noshing on Stacey’s veggie stir-fry in the Wells Fargo lunchroom when his doctor called. Minutes later, Stacey – who was in class in DMU’s Lecture Hall 2, ignoring her vibrating phone – saw an e-mail message on her laptop sent by her husband: ANSWER THE PHONE.
The Pritchards’ doctor suspected Brian’s lump indicated lymphoma.
“My body felt like bricks. I dropped everything,” Stacey recalls. An oncologist wanted to see them the very next day, over his noon hour.
“We knew if he was moving that fast, it wasn’t good,” Brian said last fall.
As bad as that day was, the eventual diagnosis from Mayo Clinic made things worse: Brian had stage-four non-Hodgkin B lymphocyte with T cell activity lymphoma. Cancer had invaded his spleen and bone marrow and “was present pretty much anywhere he has a lymph node,” Stacey said. She and Brian went from being a young, relatively carefree married couple to discussing whether to bank his sperm. They cried together.
“Our life was split into two halves – before cancer and after cancer,” Brian said.
In a feat of strength unknown to most humans, the Pritchards decided to pass on a pity party. Within the month, while Brian underwent surgery and began chemotherapy, the couple launched a blog named after Brian’s college motto, “Just try and ruin my day.” They ordered 300 black wristbands emblazoned with the phrase in gold letters, reflecting the colors of Brian’s beloved University of Iowa Hawkeyes.
“I made the decision early on that no matter what the outcome or result, I was going to live each day like I wanted to,” Brian said. “Our mantra was this was not a death sentence, but a life sentence – a reason to live, a wake-up call to life.”
In their blog, the couple frequently praised the great support of family, friends, Brian’s coworkers and Stacey’s classmates and faculty. Brian managed to maintain his work hours, spending a week each month in the hospital for intensive chemotherapy. They spent time with family, danced at friends’ weddings, tailgated at Hawkeye football games and, above all, endeavored to cherish each day. In September, their team was the top fundraiser for a local “Lymphomathon” that supported lymphoma research; by then, they were optimistic that high doses of chemotherapy and a stem cell transplant would wipe out his cancer. Their doctor told the couple, “We’re going to get you to be an old grayhaired man,” Brian said.
Counseling potentially terminally ill patients is hard enough for many health care providers, but it’s especially tough when the patient is as young and relentlessly positive as Brian Pritchard. “Brian always had to have hope,” Stacey says. “And our doctor always had more options for us.”
By late November, however, his treatment plan had failed to clear him for the stem cell transplant. He was sleeping a lot, getting daily blood transfusions and spending more time in the hospital, feverish and dizzy. He fell one night at home and broke his foot.
“Having cancer is like holding your breath a month at a time,” he said last fall. “It’s a roller coaster.”
Once, when their oncologist was on vacation, Brian asked the rounding physician about a procedure; she told him that he had “about a five percent chance he was going to beat this,” Stacey recalls.
“That was when chemotherapy stopped working for Brian,” she says. “By that time, his cancer was the size of a centimeter. But all he could think about was that five percent.”
On Monday, Feb. 7, Stacey looked at her husband and decided they needed to be with family in Cedar Rapids, IA. She put Brian and two oxygen tanks in the car; they spent the night in a hospice center. Less than a month shy of his 26th birthday, Brian Pritchard died the next day.
Focused on living life to the fullest
RUSSELL KELLEY WAS admitted into hospice care not on the advice of his doctor, but rather thanks to Cindy Swoyer, M.P.H.’07, a bereavement counselor with HCI Care Services. He’d lost his wife of 44 years, Jessie, on Sept. 16, 2010; she’d been transferred from a local care center to the hospital and then back to the care center, where a staff member suggested hospice. Although Jessie received that care less than a week before she died, the experience made an impression on her spouse.
“I saw how nice they were to my wife,” he says.
While counseling Kelley in the months after Jessie’s death, Swoyer detected a “drastic decline” in his daily activities. “I saw he wasn’t running errands, mowing his lawn or going to therapy,” she says. He agreed with her suggestion to join the estimated 1.56 million patients enrolled in hospice services, according to the National Hospice and Palliative Care Organization (NHPCO).
That number has grown steadily over the years, in part because palliative medicine – the specialized care, of which hospice is a subset, for people facing serious illness – has become “recognized as mainstream” and increasingly taught in medical schools, says Norma Hirsch, M.D., FAAP, chief medical officer at HCI Care Services.
“Hospice is not about beating death, but about living your life to the fullest while you’re alive. It’s giving people choices,” she says.
Still, recommending palliative care like hospice services may make physicians feel like they’re “giving up” on their patients, Swoyer says.
“I can see where they’re coming from. The Hippocratic Oath tells them to keep patients from harm,” she says. “But health care professionals need to understand that hospice is a philosophy of care that not only provides end-of-life care and comfort and pain management, but we also can keep those patients out of the hospital and out of the ER.”
Rita Lepeska, with Mercy Hospice, says hospice has a reputation to some as “a place to die.” While that isn’t true, it can be a self-fulfilling prophecy because many patients don’t understand the option or they put it off until they’re close to death.
“On our satisfaction surveys, the most common wish among patients is they wish they would have come sooner,” she says. “We can talk about what services and resources patients and their families need.”
Hospice care does not mean stopping a patient’s treatment or medications or procedural options, Hirsch notes. It’s a team-based approach to holistic care that focuses on the patient and his or her loved ones. An associate professor in medical humanities and bioethics at DMU, Hirsch recently told students in a campus lecture, “We have to ask ourselves, ‘What is this person’s goal?’ – not what is our goal for this person. And that’s hard in medicine.”
Adding to that challenge for health care providers are the financial incentives America’s health care system provides to perform tests and procedures rather than giving patients the option of opting out. Many physicians feel pressure to see as many patients as possible in a day, so they can’t take the time for the kinds of “ongoing conversations” terminally and chronically ill patients may need, Hirsch says.
“Patients are much more scared of getting dead than being dead,” she says. “They’re worried about tests, medications and pain.” A hospice team, she adds, can help patients and their families work through those fears and concerns while they remain in the care of their own physicians. It’s proven to work: According to NHPCO, a 2007 study showed that among patients who died within a threeyear window, hospice patients lived 29 days longer than non-hospice patients.
Hirsch and her colleagues focus on asking patients lots of open-ended questions such as how they want to be remembered, what they look back on and feel good about and whether they have any regrets.
“It’s about legacy-leaving. Not what building they’ll have their name on, but how they want their grandchildren to live on better because they had the patient in their lives,” she says.
Going onward, guilt-free
AFTER HER HUSBAND DIED, Stacey Pritchard took a road trip to Indianapolis, Nashville and Knoxville, TN, walked trails in the Smokey Mountains and cut her long blond hair into a bob. She struggled to adjust to the fact Brian wasn’t there. She struggled with getting the smell of his urine out of the carpet (baking soda proved to be the secret). Most of all, she struggled with the concept of making plans and decisions based just on herself, which she hadn’t done since she and Brian married in 2008.
“Now it is time to focus on Stacey. I’m not sure what I want or what I’m going to do,” she wrote in her March 20 blog post. “All ‘self’ ideas went out the window five years ago…and those ideas are different now, because I’m different, I’ve changed.”
Going back to school and work was a challenge, too. Working on a hospital floor next to the oncology department was hard. So was seeing people for the first time after Brian died, whether it was in class, in church or even in the pharmacy she had frequented for his many medications. While she appreciated people’s sympathy, it was overwhelming at times. She hated being told, “Sorry for your loss.”
“I did lose the love of my life, but we did everything in our power to fight, we fought so hard, we loved each other so much, we lived life as much as we could, we relied on our faith and our faith got us through,” she wrote in the blog. “I gave it my all and I don’t regret anything.”
That in part is because amid the optimism they strived to maintain throughout Brian’s treatment, they also talked a lot about their wishes – as a couple and for each other.
“When I came back to school, people said, ‘I can’t believe you’re here.’ But Brian had told me how he wanted me to finish school and, if I met someone, what he’d want that person to be like,” Stacey says. “We had those conversations so I felt like I carried out his plan. That’s why I feel at peace now.”
Per his wishes, she bagged up most of his clothes – keeping the quilt she’d made from some of his T-shirts – and gave them to a homeless shelter. While seeing the newly empty side of the closet hit her “like a thousand bricks,” driving away from the shelter was the “most freeing” moment she’d had in some time.
“Brian doesn’t want us to sit here sad and miss him,” she says.
Stacey, who graduated from DMU in May, gained insights from her and Brian’s experiences that make her wise beyond her years. Personally, she learned that “if there is something you want to do, don’t put it off.” Professionally, she understands that health care providers need to give patients the right balance of faith and reality. They need to view a patient as someone’s spouse, child, parent, sibling, friend, with emotional as well as physical needs. She also can relate to patients who lose hope.
“Being a long-term patient, in and out of hospitals, you’re in this tiny room with nothing familiar around you,” she says. “I understand why that patient might not want to get out of bed. I think I can motivate them.”
Also critical is having a care coordinator, someone to help patients and their loved ones understand all the information about their condition, care, medications, resources and options during what’s often a confusing and highly stressful time.
“That’s important if we’re really going to move to patient-centered care,” Stacey says. “That’s also why I chose physical therapy. I like that I get to spend 45 minutes with patients and really get to know and educate them.”
Taking it one day at a time
YEARS AGO, Gary Searcy’s mother was struck by colon cancer that spread to her pancreas. She lived with her son her last six months while receiving hospice care; she spent her final eight days in one of HCI Care Services’ Kavanagh Houses, two roundthe- clock care centers.
“They said if she wakes up at 3 a.m. and wants a piece of pie, they’ll get it for her,” he recalls. “They took such good care of her and of us.”
Dick Wilderman’s mother also died at a Kavanagh House. Both men say their families’ experiences motivated them to become hospice volunteers. “We get lots more out of it than what we give,” Wilderman says.
On a recent sunny day, the two men were getting plenty of good-natured sass from Russell Kelley. Sitting in his living room with his card-playing pals, social worker and nurse, Kelley, when asked how he was feeling that day, replies, “With my fingers.” Then he sobers.
“I feel extra good today because I got all these nice people around,” he says. “You name it, they’ve been it for me. I appreciate them a lot.”