A Dying Wish
The white wood house at 1795 Quince Avenue in north Boulder used to be a hive of activity. Young children came to visit their grandparents. Florists made stops there on birthdays and Mother's Day and Easter. Doctors and massage therapists, community volunteers and musicians all came and went. The home, with its well-landscaped grounds, was where ailing elderly people came to spend the remainder of their lives. Now it sits empty.
Two former residents of Anam Chara, a personal-care boarding home that was a haven for the aging since 1997, are now living just a few blocks away with the organization's founder, Peggy Quinn. New-age music plays in Quinn's house. Angel figurines peer out from bookshelves and from above doorways as if keeping watch over the inhabitants. Incense is burning strongly, but not strongly enough to mask the odor of urine. A nurse is there discussing with Peggy and her boyfriend, Don Henderson, the care of a patient named Wanda; she explains in detail how they must administer suppositories for the elderly woman, who is dozing in a chair as they speak.
Another woman, 87-year-old Jong Shim, whom everyone calls halmoni, Korean for "grandmother," is also napping, slumped on a couch between Henderson, a certified nurse's aid, and another caregiver; she's clutching Henderson's arm and resting her head against his shoulder. Shim had been living on her own in New Jersey just a few months earlier when she began suffering serious memory problems and lapses of mental clarity. At the same time, she began having difficulty swallowing food and suffered from malnourishment as a result.
Her son in New Jersey couldn't care for her, so he placed her in a nursing home. When her other son, Jae Shim, who practices alternative medicine in Boulder, visited her there, he was appalled. "It was a huge place with sixty residents. They ran it like a cattle farm," he says. "They were giving my mother psychoactive drugs to calm her down, over my objections, and they restrained her in a wheelchair all day -- even when I was visiting."
Jae Shim had previously met an Anam Chara caregiver through a friend, and he wondered if it might be a better place for his mother. So he visited the Boulder home and talked to the people who worked there and to the families of the residents. He was impressed by the attention the caregivers paid to the residents, and he liked the small, homelike setting.
"I went back to New Jersey and brought my mom here, not thinking it would ever close," he says.
When Jong wakes from her nap, she turns to Henderson. "Bbo," she says. "Bbo." Henderson has learned that bbo means "kiss" in Korean, and he plants one on her cheek. She stands up and puts her arms around her other caregiver, nuzzling her head against the woman's arm like a cat. Jong loves to cuddle with anyone who will indulge her. Even though she's regaining weight, Jong still feels like a small child in your arms. Despite her frailty, she remains feisty; although she's not supposed to wander outside, as soon as no one's looking, she's out the door and into the back yard. Her penchant for troublemaking keeps Quinn smiling.
Jong and Wanda are living with Quinn now because the Anam Chara home on Quince Avenue was shut down in March, after Quinn and a new board of directors reached a standstill over the organization's future. For the last ten months, Quinn has watched as her mission of making the last moments of life more meaningful for "elders," as she affectionately calls them, has fallen apart.
Quinn has never been good with numbers; they distract her from her purpose. She considers herself a visionary, as do most people who hear about Anam Chara's mission of "nurturing a conscious journey through the passages of life." Quinn began developing that mission even before there was an Anam Chara home.
She spent the first twenty years of her career as a medical technologist specializing in virology and bacteriology at Saint Joseph Hospital in Denver. Death in the hospital was a sterile, solitary event; it didn't usually involve family members, and it certainly wasn't celebrated or treated as a passage to something else. When patients died, they were -- and still are -- covered up and carted off to the morgue.
After her own mother died in a hospital, Quinn decided there had to be a more dignified way to handle the last moments of life. She realized what it was when she met Elisabeth Kübler-Ross at an AIDS fundraiser in Boulder fourteen years ago. In her 1969 book, On Death and Dying, Kübler-Ross laid out the five now-familiar stages people go through after they've been diagnosed with a terminal illness or after they've lost someone they love: denial and isolation, anger, bargaining, depression and acceptance. The Swiss-born psychiatrist spent the next three decades trying to convince people to come to terms with death, and her work helped the hospice movement gain momentum in America.
Quinn decided to create a place where people could live out the last months or weeks of their lives surrounded by family and friends -- a place where their deaths would be regarded as a transition as natural as birth. But she didn't know what to call it until she attended the 1987 International Conference on Dying, Death and Healing in Scotland. There she met a Scottish man who said her idea sounded like the modern-day version of an Anam Chara, a Gaelic term meaning "soul friend," after the village person in ancient times who assisted townspeople with both births and deaths.
Quinn put her vision into practice a few years later by opening two Anam Chara homes -- one in Boulder and one in Denver, at 3119 Josephine Street. The Denver home can serve eight people at a time; the Boulder home, when it was open, had the capacity for ten. At either home, people could be assured of a comfortable existence for the rest of their lives. The residents don't have to be elderly -- although most are -- nor do they have to be terminally ill; they simply must need assistance with daily living. Family members are encouraged to visit anytime, and the staff provides 24-hour care. Both homes have large, well-tended yards designed to serve as retreats. Some residents have their own bedrooms while others share. All get home-cooked meals. They watch television in the living room. They work on arts and crafts and listen to music. All religious holidays are honored. Birthdays are celebrated. So are deaths.
The approach to caregiving is holistic: While some residents are visited by hospice workers and take prescription drugs to control pain, they also receive aroma, massage and herbal therapy. "We don't just drug them out," Quinn says. "We hug them, sleep with them, love them. Love is the most potent prescription you can give."
When a resident dies, his body often remains in the home, on dried ice, for a few days while relatives and friends say goodbye.
Because of Quinn's work, Chuck Stout, executive director of the Boulder County Health Department, nominated her for a $130,000 Leadership for a Changing World grant from the Ford Foundation; Quinn was recently named a finalist. "Anam Chara was ahead of its time," Stout says. "We need alternatives to a medicalized death experience for people. There are a lot of people who don't want to be warehoused in a nursing home, and Anam Chara has provided that alternative. I would like to see this kind of compassionate care at the end of life in all communities."
"Until Anam Chara came around fourteen years ago, there was no in-home setting in Colorado to go to die. People had to go to a hospital or a nursing home," Quinn says. She speaks of Anam Chara as though it has been around that long, but the first Anam Chara home, in Denver, didn't actually open until 1992; the Boulder home followed in 1997. And Anam Chara isn't the first organization to offer an in-home setting for elders; the state health department started licensing personal-care boarding homes in 1987.
To Quinn, though, dates aren't important, and neither are the dollar amounts in her budget. Love and compassion for elders are the most important parts of her business.
But love and compassion can't pay the bills in the expensive end-of-life industry, and Quinn has often struggled just to meet her payroll. For the past several years, she has somehow managed to find last-minute windfalls to cover her monthly costs -- a new private-pay patient to replace a Medicaid patient who died, or an unexpected grant or donation. Her business has subsisted on unwavering faith. But Quinn's faith, as well as her stubbornness, have led to Anam Chara's undoing.
Anam Chara opened without a solid fundraising plan or a realistic budget. But it took nine years and a new group of shrewd boardmembers for Quinn's lack of business acumen to catch up with her.
Quinn had never employed anyone to raise money or expand the business, but more than a year ago, she decided it was time to hire a development director. She'd met Karin Simpson two years earlier, when the women were on a Boulder County Aging Services Task Force together. The group was charged with defining the problems that society will face in another ten years, when the largest segment of the population -- the baby boomers -- grow old. Simpson had been working in nursing homes for twelve years, and she liked the Anam Chara philosophy of allowing people to decide how they want to handle their own deaths. So when Quinn asked her to join the board of directors -- which then consisted of Quinn and two other women -- Simpson agreed. She was on the board for a year before Quinn hired her to be the full-time development director. But Simpson didn't know the first thing about fundraising, and Quinn certainly wasn't equipped to train her.
"The whole time I was on the board, we only met a couple of times," Simpson says. "What I learned over the first six to eight months on the job was that a nonprofit needs a strong, active board. I went to grant-writing and fundraising workshops and learned that foundations won't even consider you if you have a ghost board, so I told Peggy this, and she gave me the go-ahead to recruit more boardmembers." The two women began to look for people from diverse backgrounds who had good business sense and a passion for elder care.
But when Simpson began interviewing prospective boardmembers, Quinn says she felt like she wasn't part of the process. "When I told her I wanted to meet a specific candidate, Karin would say, 'You're micromanaging and not letting me do my job,'" Quinn recalls. "Certainly the founder ought to be involved in the decision-making."
Simpson says Quinn's habit of meddling bothered her, but more than that, she became worried about the financial health of the organization. "I had heard Kert Hubin, the business manager, talk about things being tight. I was very surprised at how the budget was managed; the numbers changed all the time, and Kert told me there was a practice-type budget that wasn't really followed. When I asked Peggy what our annual budget was, she said she didn't know. I said, 'Peggy, you need to know the budget!'" Simpson says.
Hubin, who worked first as a caregiver at Anam Chara and later as the business manager, says there was constant "monkeying" with the budget. "We had a line item in the income section of the budget for grants and donations. No administrator with a head on her shoulders would allow that to be a line item, because it's theoretical money," says Hubin, who quit out of frustration, along with Simpson, last September. "We'd put in the average of the donations we'd received in the prior year. Her logic was that we couldn't do any worse than last year."
Quinn is the first to admit that business is not her forte. "My gift is with people. I knew I was at a juncture, as the demand for Anam Chara was growing, where I needed to have people to support me," she says.
Like Simpson, Quinn hoped that a new, strong board of directors would make Anam Chara more attractive to donors. By the end of July 2000, five new members had been seated: Jan Bezuidenhout, president and CEO of Namaste Comfort Care, a for-profit hospice; Mark Berzins, a local restaurant and bar owner; James Wall, a partner with Freeman Group Public Relations; Lou Raskin, a volunteer senior peer counselor with the Boulder County Mental Health Department; and Kim Yuskis, who works for the Boulder County Aging Services Division. The new group joined Quinn and Simpson on the existing, but previously inactive, board, which included Darcelle Harris, a Denver antique store owner, and Judy Morgan, a physical therapist and Anam Chara employee.
The first thing the new boardmembers did was form a finance committee to come up with a fundraising plan; its members included Berzins, Bezuidenhout, Morgan, Raskin and Quinn. Berzins quickly emerged as a leader. The other boardmembers respected his business judgment; he owns the Spot Bar and Grill near Washington Park, a restaurant of the same name in Golden, and Three Dogs Tavern in northwest Denver. Berzins had decided that he wanted to give something back to the community that patronized his businesses, so he'd started researching nonprofit organizations in need of boardmembers; he found Anam Chara through a board bank operated by Metro Volunteers.
"There were hundreds of organizations in the board bank, but I liked the mission of Anam Chara," he says. "I have elderly grandparents in failing health, and I'm concerned about the quality of nursing care in this country."
At the first meeting of the finance committee, Berzins laid out objectives for raising money and said that in order to attract donors, the homes needed to be repaired and painted. "But the most important thing we needed to do before trying to raise money was to get a realistic budget in place," he says.
Berzins says Quinn budgeted as though both homes were full and counted on fundraising dollars that hadn't been committed. The budget for the approaching 2000/2001 fiscal year was $470,000, and it provided for only the bare essentials; the boardmembers thought more services could be offered if they trimmed some of the management positions in what they saw as a top-heavy organization.
When the finance committee reconvened in September, Berzins suggested budgeting on the assumption that one bed in each house would always be empty. "Peggy's biggest concern was whether she and her employees would still get their salary increases and get medical benefits," Berzins says. "Here we were talking about how to squeeze blood from a stone, and she's saying everyone needs a wage increase. We just didn't have any money for that."
The finance committee members proposed restructuring the management of the homes: Instead of having a high-paid manager running each one, an experienced caregiver in Denver and one in Boulder would take over as team leaders. (They could have saved more money by getting rid of the arts coordinator, who arranges for volunteers from the community to visit the homes and work on art projects with the residents, but they decided that her role was one of the things that made the organization special.) Quinn, however, didn't like the idea of eliminating Sherry Irby, the longtime manager of the Boulder home, so the board agreed to keep her on in another, less costly position.
"Peggy said she needed Sherry to keep managing the home during the transition to the team concept, so we authorized her to continue being paid at the same level for another six to eight weeks," Berzins says.
Personality conflicts began to surface on the board around this time, however, and in October, Raskin resigned. "I lost confidence in the board to move the organization forward," he says. "I knew we weren't marching together."
In November, one of the Boulder home residents died, and two private-pay residents ran out of money and switched to Medicaid. Personal-care boarding homes such as Anam Chara get $1,440 a month for Medicaid patients; Quinn charges private-pay patients $3,500 a month. So the organization had always tried to make sure that at least half of the residents were private-pay. When that changed that month, the Boulder home began losing money. "We told Peggy to market open beds to private-pay families," Berzins says.
At the November board meeting, Quinn said she needed Irby to stay in her management position a little longer, and the boardmembers allowed her to continue working, at her same salary level, until mid-December (Irby could not be reached for comment for this story). For the next several hours, boardmembers discussed fundraising strategies and other business matters. Then, at the very end of the meeting, Quinn dropped a bomb: She told the board that she didn't know if she'd be able to make payroll at the end of the month.
"That should have been our first order of business!" Berzins says.
By this time, some of the boardmembers were losing confidence in Quinn. She did make payroll in November, Berzins says, but just barely.
"This organization had eighteen people in its care. You can't not meet payroll," says Simpson, who remained on the board after she resigned from her job as development director. "If you can't guarantee the caregivers that they'll get paid, it will affect the quality of care. But more than that, if we ran out of money, where would these people go? Not every facility accepts Medicaid patients, and some have limits on the number they can take. We had real humanitarian concerns."
On the night of the December board meeting, Quinn surprised the group again -- a couple of times. No private-pay patients had been found, although Quinn assured her colleagues that one was coming and that a grant was on its way. Then Irby announced that she didn't know if the nonprofit could make payroll that month, either. Quinn had an answer to the dilemma, however: She and Bezuidenhout had worked out a deal. Bezuidenhout's company, Namaste Comfort Care, would lease the Denver home for $1,000 a month for two years and pay all the bills there. That way, Quinn and the board would only have to worry about the Boulder home, and Namaste could pocket the income from the Denver home.
"Leasing the Denver home was my idea," Bezuidenhout explains. "It came to me one morning after a long board meeting where Peggy said she didn't know if she'd be able to make payroll. I was in the shower, and I thought, 'I want a residential care facility for Namaste, and Peggy can't afford to run it, so what if we do a two-year lease agreement?'
"Namaste has a fully developed business plan for residential care that has always been part of our mission. Anam Chara had the residential component that we wanted and didn't have," she continues, adding that she wants to buy property in Wheat Ridge for a 110-bed facility, but she hasn't yet raised enough money to purchase the land and build the home. "I figured [the lease agreement] would give Namaste a chance to see what it would take to run a residential care facility before the Wheat Ridge deal was done."
But Bezuidenhout soon began to regret her decision to lease the Denver home. She asked Quinn several times for the amount of the mortgage payments, but was answered with three different numbers. "As a boardmember, you count on the executive director to be the conduit between policy-making and the day-to-day business. But how can you count on an executive director who doesn't even know what her bloody mortgage is or how many years she's been open?" Bezuidenhout says. "She sees the world through Peggy-colored glasses."
Berzins was skeptical of the plan. "Peggy said it would eliminate the shortfall, but I'd heard that the Denver home was cheaper to run because the staff there was paid less," he says. "Then Peggy dropped a new budget on our laps that provided for Sherry to stay on at full pay and eliminated the volunteer arts coordinator. We had given specific directions on how the homes were to be structured, and we had said it was important to keep the arts person. To me, it was insubordination."
And Quinn's new solution had some other drawbacks. "We were making an assumption that the Denver home would solve the problem," continues Berzins, "but I didn't believe it would cut the deficit, because then we'd have just one home supporting Peggy's and Sherry's salaries. I told Peggy that she needed to bring a breakdown of the costs for the Denver and Boulder homes over the last three months to the January board meeting."
Despite Berzins's questions, the board authorized Quinn and Namaste to proceed with their arrangement, in which Namaste would run the Denver home.
As promised, Quinn came to the January meeting with expense reports on both homes. Berzins found what he had expected: The Boulder home was, indeed, losing money while the Denver home was making money. According to the budget documents, the Boulder home lost $10,342 in October and $12,563 in November; it was ahead by $1,682 in December. The Denver home made $1,012 in October, $8,869 in November and $4,400 in December.
"I told Peggy to rethink the Namaste transaction because losing the Denver home would hurt us, and the first words out of her mouth were that the numbers must be wrong. She said she'd get new numbers that would show the opposite," Berzins says.
Quinn insists that the Boulder home was actually supporting the Denver home. "Those figures were wrong," she says of the spreadsheets she gave Berzins. "There was an addition mistake."
But Quinn's assurances weren't enough to satisfy Berzins. "I left that meeting feeling that I had no confidence in the information I was being given," he says. "I started thinking, 'I can't believe anything she tells me anymore.' So I started looking into things myself."
The first thing Berzins investigated was the alleged private-pay patient Quinn said she had found: A 55-year-old homeless alcoholic man whose brother was supposedly going to pay his expenses. Berzins called Quinn's administrative assistant and got the telephone number of the resident's brother; when he reached him, the brother told Berzins that he'd been receiving pressure from Quinn and Irby, who were reportedly telling him that the homeless man would be evicted if he didn't pay up. "After I talked to him, he agreed to pay $300 a month to keep his brother in Anam Chara, but even that wasn't enough. I told Peggy that he's completely inappropriate -- residents were complaining that he made them uncomfortable with his drinking." (Quinn says she would never threaten to evict a resident.)
In January, things took a drastic turn for the worse: Five patients died, bringing the total number of empty beds in the Boulder home to six -- a higher vacancy rate than Anam Chara had ever had at one time.
"I was at a point where my wife told me, 'Why are you doing this? You're a volunteer; this is supposed to make you feel good,'" Berzins says. "So I called Jan [Bezuidenhout] and told her that I was thinking of resigning. Jan said that some of the others felt the same way, so we had a meeting to discuss what to do."
Boardmember Wall remembers that meeting clearly. "We deliberated a long time over whether we should all resign and say, 'Peggy, this is your deal.' But we all felt a tremendous sense of responsibility," he says. Wall had heard about Anam Chara through Berzins, a longtime friend, and had decided to join the board because, he too, deeply believed in the organization's mission; his grandfather had died all alone in a nursing home in the United Kingdom a couple of years ago, and Wall didn't want anyone else to have to die that way.
"We realized it would go down the tubes without us," Wall continues. "Peggy is a dogmatic visionary who has her own very clear, almost religious-like agenda. It works extremely well when applied to the right things, like elder care. But when things get tough, the dogma seems to take over everything else. We started thinking that we had to take control, and the only way to do that was to ask Peggy to resign as executive director."
On February 5, the board did just that.
Quinn went to the meeting clueless about what would happen. In fact, the 3:30 p.m. gathering started out exceptionally well, she says. Quinn knew that her boardmembers didn't always see eye to eye with her. They argued over her request for them to spend time in the homes; she thought it was their responsibility to visit with the residents, and they said that as volunteer boardmembers with their own jobs and families, they were too busy to do that. She also requested several times that they enter into mediation to work out their differences, but they refused. And then there was the bad blood between her and Karin Simpson.
"I shouldn't have let her have so much autonomy," Quinn says. "Karin was telling prospective boardmembers that I was a danger to Anam Chara -- that I wasn't business-minded enough to run it, so they came in with that mindset. I found out later that she intended to get me off the board from the very beginning." (Simpson vehemently denies this.)
So Quinn was pleasantly surprised when Simpson opened the meeting by asking everyone to explain how they came to be involved with Anam Chara. "I thought that was beautiful," Quinn says.
After the boardmembers shared their stories, Bezuidenhout read a letter from board secretary Kim Yuskis announcing her resignation, for which Yuskis offered no reason. (Yuskis declined to comment for this story.) After that, they nominated Simpson to replace her as secretary, and even though Yuskis's resignation came as a surprise to Quinn, she voted in favor of Simpson's appointment. Then they discussed adopting a new set of bylaws and reviewed the bank statements and grant contracts they'd asked Quinn to bring to the meeting.
Finally, at 6 p.m., Wall announced the real reason for the meeting.
The board spent the next three hours regaling Quinn about a host of concerns they had about the homes: When one resident's medication ran out, the caregivers would sometimes replace it with another patient's medication; gloves weren't used when residents were treated; caregivers didn't always wash their hands before preparing food; residents didn't have their diapers changed often enough; employee paychecks bounced twice; there was high employee turnover in the Boulder home; and only two of the eight Denver residents had contracts to live in the home.
Quinn was badly shaken. "At 9 p.m. I stood up. I had to leave," she says. "They gave me three days to resign and they said that if I didn't step down by the ninth of February, they'd fire me." She left not knowing what to do.
Looking back on that night and at everything that's happened since, she says sadly, "Anam Chara is my calling, my blessing and my curse."
Anam Chara's financial struggles aren't that unusual. Elder-care programs everywhere -- and hospices, in particular -- have difficulty making ends meet. Although Anam Chara is licensed by the state health department as a personal-care boarding home and differs in many legal ways from a hospice, its financial difficulties are similar.
A personal-care boarding home is defined by state law as "a residential facility that makes available to three or more adults not related to the owner of such facility room and board and personal services, protective oversight and social care due to impaired capacity to live independently, but not to the extent that regular 24-hour medical or nursing care is required." (Because Quinn and Henderson are now caring for just two people in their home, it doesn't have to be licensed as a personal-care boarding home. Instead, they are currently contracting with a home health agency that pays them $9 an hour, forty hours a week to care for Jong Shim and Wanda, even though it's a round-the-clock job.)
Patients don't have to meet any particular criteria to enter these homes, of which there are 537 in Colorado; it's up to the director of the home to determine if the caregivers can meet the patients' needs. The caregivers themselves don't have to meet any stringent criteria, either; all they have to do is complete a two-hour training on administering medication.
Hospice care, on the other hand, is governed by numerous regulations. To enter hospice care, a patient must be told by a doctor that he has six months or less to live, must agree not to receive any life-prolonging treatment and must sign a do-not-resuscitate order. Most hospice companies don't have their own residential-care facilities, as hospice was designed to allow people to live out the last days of their lives in the comfort of their own home, assisted by a team of people trained in managing pain and in helping family members prepare for and cope with the impending death of their loved one. Hospice teams usually include a doctor, a nurse, a nurse's aid, a social worker, a chaplain and volunteers; the patient and his family are part of the team, too, and are involved in every decision. Hospices provide all of the pain-control medication patients need, along with all medical equipment, supplies and staff.
Despite their regulatory differences, hospice teams do work out of personal-care boarding homes, as well as private homes, nursing homes and hospitals. Anam Chara used the Hospice of Boulder County to work with patients before signing up with Namaste.
"As the saying goes, hospice is a philosophy, not a place," says Bev Sloan, CEO of Hospice of Metro Denver, the largest hospice in Colorado. (Hospice of Metro Denver is one of only seven hospices in the state that operate their own residential-care facilities; it has one in Aurora and one on the Presbyterian/St. Luke's campus in Denver. Of the approximately 3,000 hospice programs in the country, only 300 have such facilities.)
The word "hospice" comes from the Latin "hospitium," meaning a rest stop for sick or weary travelers. The modern hospice movement started in England in 1968, with Dr. Cicely Saunders's St. Christopher's Hospice outside of London. The first hospice in the United States started in New Haven, Connecticut, in 1974, and the Hospice of Boulder County, which came along two years later, was the first in Colorado.
Most hospices receive Medicare reimbursement, and some are also Medicaid certified. Medicare covers medical services, such as pharmaceuticals, medical equipment and doctors' and nurses' salaries, while Medicaid covers social services, such as food, shelter and non-professional caregivers' salaries. Since personal-care boarding homes do not provide medical services, they can qualify only for Medicaid reimbursement. The reimbursement rate for hospices is more than double that of personal-care boarding homes simply because hospices cost a lot more to run: Wages for hospice workers range from about $20 an hour to $200 an hour, and medication alone can cost $100 a day per patient; caregivers in personal-care boarding homes, by comparison, earn only $8 to $10 an hour. Hospices get about $113 per patient per day from Medicare, while personal-care boarding homes get the equivalent of $48 per patient each day from Medicaid.
Although the two types of programs are funded differently, they're both in the same situation: Medicaid and Medicare reimbursement rates haven't kept pace with the cost of services.
About 80 percent of hospice patients in Colorado and the rest of the nation are on Medicare, according to Al Canner, executive director of the Colorado Hospice Organization, an educational and charitable nonprofit. A small percentage are on Medicaid, and the rest have private insurance, pay out of pocket or have no insurance. But Medicare funding has been cut every year, while the cost of pharmaceuticals has increased by about 20 percent annually, Sloan says.
And hospices are facing another problem, too: Medical advances have given dying patients more options, meaning hospice care is considered only after every kind of treatment has been considered. As a result, patients sign up for hospice care with only a few weeks or days left to live.
"People reason, 'If I continue on a strict regime of radiation or chemotherapy, maybe I can lick this cancer,'" Canner says. "When someone elects hospice, they have to cease that treatment. Also, doctors don't have much training on having difficult discussions with patients. It's easier to say, 'There's a new chemo treatment that might help,' than it is to say, 'Let's discuss quality of life for your limited time here.'"
In the 1980s, patients received hospice care for two to three months; now they stay about a month. Colorado ranks at the bottom in the country in that regard; the median length of hospice stay in Colorado was 19.2 days in 1999, compared to 35 days nationwide. And since hospices receive Medicare reimbursement by the day, shorter stays mean less money. The most expensive days of hospice occur at the beginning of a patient's stay, when all of the team members are on hand to assess physical problems and to coordinate a care plan with family members, and at the end of the stay, when more medication is needed to control pain, funeral arrangements need to be made and government paperwork must be completed.
Bezuidenhout has been trying to get patients to stay with Namaste longer. "We lose our shirts if a patient stays less than seven days. We get about $113 a day [from Medicare] whether we spend $2,000 a day or $2 a day. The costs are almost always triple the per diem," she says.
"I would suspect that 100 percent of hospices in the country are struggling to survive," Canner adds. "The only way hospices are able to stay in existence these days is because of the generosity of the community."
Since January 1999, six hospices in Colorado have closed because of financial problems, a shortage of nurses or a lack of community support: Hospice of the Rockies in Glenwood Springs; Hospice of Custer County in Westcliffe; St. Vincent Home Care & Hospice in Leadville; Banner Hospice in Sterling; Life Source Services in Trinidad; and Caring Unlimited in Walsenburg. There are now just 36 hospices in Colorado.
Hospice of Metro Denver has recently overcome serious financial struggles. "We had some patchy times, but in the last twelve months, we tightened our belt and took stock. Now we're on strong footing again," Sloan says.
Rising costs and dwindling Medicare reimbursement forced the hospice to cut sixteen jobs in the last year. The nonprofit also streamlined its services to save money; for example, it used to include chaplains in every patient's caregiving team, but now only those who request one receive that part of the service. In 1998, Hospice of Metro Denver held its first Mask Project, a huge fundraising endeavor in which celebrities and local journalists designed masks for auction at a gala benefiting the hospice; the project netted $400,000 that year and $600,000 last year. Sloan hopes that the next Mask Project Gala, in 2002, will raise $1 million. "None of us breaks even from what the government or commercial insurance pays us, so all hospices have to hold big fundraising events," she explains.
And that's what sets organizations like hers apart from Anam Chara: Sloan's nonprofit knows how to raise money. Anam Chara hadn't the first clue.
By February 9, Peggy Quinn decided she wouldn't willingly resign as executive director of the organization she'd founded, so the board removed her (they had agreed to let her remain on the board, however).
With just five residents in the Boulder home at the time -- all of them on Medicaid -- money was scarce. "In late February, I announced at the board meeting that we'd be lucky just to make payroll," Berzins says. "We had no money to operate the Boulder home after March 1."
By this time, Namaste was managing the Denver home, but without a contract, and although the boardmembers never got a final answer on the budgets of the two homes, they decided to continue to let Namaste run the Denver home while they focused on the Boulder one.
When Berzins asked Anam Chara's accountant for a year-end financial statement for the Boulder home, it showed that donations of $10,000 and $4,000 had been made. Berzins was relieved; they needed that money to run the Boulder home until they could figure out what to do with it. But when Berzins called the bank to confirm the balance in the donation account, he learned that it contained only $4,000. Quinn says she hadn't deposited the $10,000 check because the donor didn't want the new boardmembers to be able to use it unless Quinn was running Anam Chara.
The staff members at the Boulder home were worried about getting paid, so the board set up a meeting on February 27 to discuss what to do. Despite everyone's hope that the Boulder home could remain viable, the boardmembers realized it would have to be sold. The plan was for Namaste to operate the Boulder home until then.
But Quinn had rallied a group of her own supporters, including employees of the Boulder home and family members of the Boulder residents, who showed up, uninvited, at the meeting. The employees shocked the board by threatening to quit unless all of the members stepped down. The family members also demanded the board's resignation.
"It was really intimidating," Wall remembers. "We were outnumbered."
"The family members were freaking out," Berzins adds. "One person said, 'I'm not taking my mom out of the home no matter what.' People were banging on tables and pointing fingers."
Quinn was quick to suggest ways to keep the Boulder home afloat. "She said she had $30,000 in donations pledged and a new board ready to step in," Berzins says. "I asked her if she'd share with us where those pledges were coming from and who this new board would be, and she said, 'No.'"
Although she didn't tell the board at the time, former boardmember Raskin had just formed a group called Concerned Friends of Anam Chara, and its members were willing to step in and assume control of the organization in case the boardmembers agreed to resign. The group included Quinn's boyfriend, Henderson; Jong Shim's son, Jae; Maria Asztalos, a former Naropa gerontology student who had interned at the Denver home; and Tom Altgelt, a landscape architect who had designed the gardens at both homes.
While everyone was bickering, Bezuidenhout was sketching out a plan to keep the Boulder home open: Namaste could run it for two years, she decided, while the board figured out what to do. But for the plan to work, the Boulder employees had to stay, because Namaste couldn't afford to hire temporary employees.
"We turned to the staff and said, 'Will you stay on to allow us to keep the Boulder home open?'" Berzins says. "They said, 'No, we won't work for a for-profit.' So we had no choice but to close the Boulder home."
Shortly thereafter, seven of the ten Boulder staff members quit, leaving hardly enough people to provide constant care for five ailing residents. Although the board issued the residents and their relatives thirty-day eviction notices, as required by law, "we were 24 hours away from having elderly people in a house and no one to care for them," Berzins says. "We were in freak-out mode." So Bezuidenhout decided to cut into her own business and send some of her employees to operate the Boulder home until the end of March.
On March 1, the board met with Bezuidenhout and her attorney to draft a contract formally allowing her to operate the Boulder home for a month and to run the Denver home -- which she had been doing since February with the staff that was already in place -- until June 30. At that point, Bezuidenhout resigned from the board to avoid a conflict of interest (although Quinn now believes it was a conflict of interest for Bezuidenhout, a boardmember, to involve Namaste in any business negotiations with the board), and Wall became chairman.
"She was our white knight," Berzins says of Bezuidenhout. "Namaste jumped in and saved the day."
Later that day, the boardmembers agreed to remove Quinn from the board (the by-laws allow boardmembers to be removed) because they believed her interests were no longer those of the board. Then they changed the locks at the Boulder home and posted signs on the door directing Bezuidenhout's staff to call 911 if Quinn came onto the property; they also banned her from the Denver home.
"Peggy is a visionary, and a visionary, by my definition, is one who fuzzes the edges, who knocks off limitations," Don Henderson explains. "Peggy scared them to death because she fuzzed the edges wherever they could be fuzzed."
Two weeks later, the Concerned Friends of Anam Chara came up with another tactic to keep the board from selling the Boulder home. At a meeting, the group (Quinn happened to be out of town at the time) presented the board with a copy of an agreement Anam Chara had made with the City of Boulder a few years earlier in which the city's housing department had given Anam Chara a $100,000 grant to help buy the home. As a condition of receiving the money, Anam Chara had promised to return the money -- plus interest -- if it ever sold the home.
The board was again taken by surprise. The agreement meant Anam Chara would have to take a huge financial hit if the Boulder home was sold, so they reached a compromise with the Concerned Friends: The board would reverse course and sell the Denver house to Namaste or to another elder-care organization and use the profits to cover the expenses Bezuidenhout had incurred over the last couple of months. The remaining profits would be used to reopen the Boulder home. At that point, the current board would resign and the Concerned Friends would replace them, so long as Quinn was given a "more appropriate founder-type role," Berzins says.
The boardmembers thought everything was finally settled.
But when Quinn returned from her trip and heard what the Concerned Friends had agreed to, she convinced them to back out of the plan. Instead of selling the Denver home to pay the debts of the Boulder home, she believed that money could be raised from donations. In the meantime, she and Henderson would care for the remaining Boulder residents. (One resident had already made plans to move in with a daughter, another went to a nursing home, and the alcoholic man left of his own volition; he was arrested sometime after that for harassing people while drunk.)
"There were alternatives," Berzins admits. "But they had a high degree of risk. We did not feel at all comfortable rolling the dice. We were dealing with human lives. We had to make decisions not in the best interest of the founder, but in the best interest of the organization and its mission, which is to care for these elders."
The board held off on its decision to sell the Denver home, but on March 31, the Boulder home closed, and the two residents who hadn't made other arrangements, Jong Shim and Wanda, moved in with Quinn and Henderson.
Bezuidenhout knows how it must look: The president and CEO of a for-profit hospice that has always planned to open a residential care facility of its own serving on the board of a struggling nonprofit that already owns two such homes. But she says her intentions were always honorable.
Bezuidenhout began working in the hospice industry in 1985. But she was always troubled by people's impression of hospice care. "Our society is death-defying and death-denying. We're scared to death of death, and people think hospice equals death," she says. "That attitude was a motivating factor for starting Namaste. We wanted to open up care for people scared of hospice."
So three years ago, Bezuidenhout, along with a doctor, two social workers and a nurse, started Namaste Comfort Care. The word "namaste" is a Sanskrit greeting meaning "the divine inside of me bows to the divine inside of you." It was just the phrase they wanted to describe their business of honoring people at the end of their lives. Bezuidenhout and her partners originally wanted to form a nonprofit, but she says banks wouldn't loan them money because they weren't established yet, so Namaste incorporated as a for-profit instead.
"We mortgaged our houses and cars to start it," she says. "I personally put $50,000 on high-interest credit cards to start it. I'm so in debt I can't even tell you."
Namaste offers much more than just hospice care: People who have been diagnosed with a serious or terminal illness but who don't necessarily have fewer than six months to live can take advantage of a program in which Namaste employees help clients handle the decisions and tasks associated with their illness. Namaste will teach them about treatment options, refer them to doctors, help them apply for Medicare and Medicaid, assist them with living arrangements and show them how to write wills. Seriously ill people can also enroll, for free, in a six-week workshop in which they learn how to find information about their illness, develop questions to ask their doctors and weigh the pros and cons of their end-of-life options.
Through Namaste, Medicaid and private-pay patients can also be paired with a personal-care provider who goes into a patient's home to offer companionship and do household chores that the patient can no longer perform. While other hospices are struggling to cover the high costs of medical care for patients who are with them only a short time, Namaste is making a small profit. (In fact, the company just received the Emerging Business of the Year Award from the Denver Metro Chamber of Commerce.) Bezuidenhout's strategy is to attract people before they're gravely ill; they aren't as frightened, and, as a result, tend to sign up with her business sooner and remain longer. Her patients typically stay in hospice ten times longer than the median nineteen days of other Colorado hospices.
Namaste employs 55 people and has had approximately 550 clients since its inception. Employees care for patients in their homes, in homeless shelters, on the streets and in personal-care boarding homes such as Anam Chara. The only thing Namaste lacks is a residential care facility of its own. Bezuidenhout says she didn't set out to take over Quinn's business: "I never considered buying the home or entering into a long-term relationship with Anam Chara -- that wasn't in my business plan." She says her desire to open a home "existed long before I met Peggy."
That meeting actually took place in November 1998; one of Namaste's first clients was a woman living in the Boulder Anam Chara home. "We've had a strong relationship with them ever since -- we've referred clients to them and they've referred clients to us," Bezuidenhout says. "Both organizations see themselves as agents of social change. So when Kert [Hubin] called and asked me to be part of the board, I agreed. I knew when I joined the board that Anam Chara was making it on a wing and a prayer."
Despite what Bezuidenhout says, Quinn wonders whether she was planning to take advantage of Anam Chara's weak financial position -- as well as Quinn's trust -- all along. And for the last couple of months, Quinn has portrayed Bezuidenhout as a conniving businesswoman concerned only with her own bottom line to anyone who would listen, including out-of-state friends and relatives who responded with a barrage of vicious and threatening e-mails and phone calls to Bezuidenhout and other boardmembers.
"Peggy has tried to polarize this issue as a greedy for-profit trying to consume a nonprofit, which is not the case," Bezuidenhout says. "That has made me really sad; in fact, it's made me cry."
But this isn't the first time someone has accused Bezuidenhout of questionable activities. Three years ago, Bezuidenhout's former employer, Life Source Services, a Lakewood hospice, accused her of stealing its trade secrets and using them to start Namaste; the company also accused her of committing computer crime. Bezuidenhout was hired as Life Source Service's chief operating officer and chief executive officer on June 1, 1997. When she resigned on May 18, 1998, Life Source alleges, she took much of its proprietary information along with her, including the company's policies and procedures manual, training materials, brochures, forms, customer lists and even its strategic plan. Life Source vice president Jay Analovitch wouldn't comment on the matter because he says it's company policy not to discuss former employees, but a Lakewood Police Department report lays out his accusations.
According to the report, Analovitch hired private investigator Janet Bayless to gather information before going to the authorities. "On the day of her resignation, Mr. David Sebbag (the principal stockholder of Life Source Services, Inc.) discovered that Ms. Bezuidenhout intended to open a competing hospice called Namaste Care Group. Mr. Sebbag immediately advised Ms. Bezuidenhout that she was not to enter the premises of Life Source Services, Inc. Mr. Sebbag later learned that Ms. Bezuidenhout had entered the building during the evening of May 18, 1998, and had removed items from the office. Mr. Sebbag had the locks changed the next day," the police report states.
The Lakewood police officer who filed the report went on to note that, "Ms. Bayless told me that in early 1998, Ms. Bezuidenhout had the secretary/receptionist for Life Source Services, Inc., Katherine A. Perry, download all information from Life Source Services, Inc., onto diskettes...Ms. Bezuidenhout said she wanted this material to be copied on diskettes so she could take the diskettes to a safe place off-site in case of a natural disaster."
The report also states that Perry briefly worked for Bezuidenhout while on vacation from her job at Life Source; after Bezuidenhout left the company, the report continues, Perry was told by Bezuidenhout to call up the documents she had downloaded several months earlier on a computer in an office where Bezuidenhout was working. "She was then instructed to bring up each document, and everywhere she saw 'Life Source Services, Inc.' she was to replace those words with 'Namaste Care Group.' Ms. Bezuidenhout paid Ms. Perry for her work with a personal check. Apparently, Ms. Perry did not feel right about what was occurring, so she went to Mr. Analovitch and told him what was going on.
"Mr. Analovitch said that he believed Ms. Bezuidenhout had orchestrated this since before the beginning of the year. He said that all records relating to bereavement work, that are required by Medicare of all hospice facilities, are missing from the patient files. He said they had to mail a form letter to more than 300 families of deceased patients to rectify this violation. This cost his company in excess of $5,000...Mr. Analovitch added that Ms. Bezuidenhout has recruited many of his employees to come and work for her," according to the report.
Bezuidenhout deferred comment on the allegations to a December 11, 1998, letter her attorney wrote to the Lakewood police detective who investigated the claims. "Through her attorney, Ms. Bezuidenhout reported that the material that Life Source Services claimed was stolen from them she had developed before coming to work for Life Source Services and that the material was all original works of Ms. Bezuidenhout," the police report states. "Additionally, as there was no agreement which prohibited her from using the material, she did not believe that there would be a problem taking it. However, to avoid any problems, Ms. Bezuidenhout returned the material. Ms. Bezuidenhout denies that she removed any paperwork from patient files. It is Ms. Bezuidenhout's belief that the case was filed in retaliation for her leaving Life Source Services." According to the letter written by her attorney, Bezuidenhout left Life Source Services because she had not received the salary or the benefits she'd been promised.
The Lakewood Police Department turned the case over to the Jefferson County District Attorney's Office, which declined to prosecute, saying the damages listed as a result of the computer crime are civil in nature. "They are incidental damages that, while certainly real, are not considered damages in the criminal case," explained then-deputy district attorney Brian Boatright in a report. He added that in order to issue a summons on the theft-of-trade-secrets charge, he would need to establish, beyond a reasonable doubt, what was done with the customer lists and where the other allegedly stolen paperwork originated.
In late April, Concerned Friends Raskin and Henderson and the Anam Chara board of directors met in hopes of finally resolving their differences.
They came to the same conclusion they'd reached in March: The most reasonable option would be to sell the Denver home -- to Namaste or to another elder-care organization -- and use the money to repay Namaste for running the Denver home and paying the mortgage on the Boulder property. (When Namaste's lease agreement ends in late June, Anam Chara will owe the company $50,000 to $60,000, Bezuidenhout says.) Any money that was left over could be used to reopen the Boulder home. The board would then resign and allow the Concerned Friends to take over.
But when Raskin and Henderson reported back to Quinn on what they'd agreed to, she became furious: Over her dead body was the Denver home that she had worked so hard to open nine years ago -- the first Anam Chara home of what she hoped would some day be many -- going to be sold.
Raskin decided he'd had enough. On May 2, he wrote a letter to the board of directors informing them that he was disbanding the Concerned Friends of Anam Chara, which he'd formed. "This course of action is found necessary due to the refusal by Peggy Quinn to acknowledge the facts and circumstances defining the situation," he wrote. (Shim, Altgelt and Asztalos, among others, still support Quinn, although some of them say they've come to realize that her stubbornness is largely to blame for the organization's downfall.)
Since Quinn no longer had any authority, the board of directors could have gone ahead with the sale of the Denver home without her cooperation. But Bezuidenhout was nervous about proceeding because of a new development: A friend of Quinn's named Steve Young had started threatening Namaste and the Anam Chara board with a lawsuit.
Neither Bezuidenhout nor any of the boardmembers knew who Young was at the time or what he planned to sue them for, but he was worrying them.
As it turns out, Young runs a nonprofit company that trains people to work with the elderly, and some of his students had worked at Anam Chara in the past, which is how he met Quinn. He says he only got involved because the situation reminded him of something that had happened to him back in 1971, when he was the coordinator for the National Council on Alcoholism's Boulder County chapter. A man who was grateful for the organization's help had willed his house to the council, and he wanted the local chapter to use it as a halfway house for recovering alcoholics. But when a new director was hired and a new board of directors took over, they sold the house to a battered-women's shelter and used the money from the sale to pay the director's salary. Eventually, the money ran out and the Boulder chapter closed.
"That appears to me to be what's going on here," Young says. "I'm going to actively oppose [the sale], not because I'm a friend of Anam Chara but because I'm a citizen. Transferring the assets of a nonprofit to a for-profit is theft." In fact, Young says, he is acting independently of Quinn. "I'm not part of the Peggy Quinn defense organization," he says wryly. "All of this has happened because Peggy has her head up her ass, and I'm angry at her for that."
Despite his threats, the board finally decided in mid-May to put the Denver home up for sale. Although Wall says the board intends to sell it to Namaste, the board put the home on the open market at Bezuidenhout's insistence because she wanted the transaction to be fair. The asking price is $300,000; boardmembers say Bezuidenhout plans to make an offer soon.
In a May 12 letter that Bezuidenhout sent to the families of the Denver home residents, she assured them that their loved ones won't be displaced if her company buys the house at 3119 Josephine Street, but she also suggested that some residents may no longer wish to stay.
"Admission will not be dictated by the length of time that someone is expected to live," Bezuidenhout wrote in her letter. "It is possible that some people who are currently involved with the home will not feel comfortable as the focus shifts. For those people, we will provide information about other options and assistance with placement if need be. We do not plan to insist that anyone leave the home within a specific time frame because of philosophical incompatibility."
Bezuidenhout never explained in her letter just what those focus shifts will entail, but she says now that what she meant to convey was that emphasis will be placed on quality of life, not on quantity. And that means residents won't be allowed to leave the home for lengthy hospital stays. When Quinn was in charge of Anam Chara, she would reserve a resident's place in the home even if he had to seek treatment in a hospital or rehabilitation center for a few weeks. But having a bed sit empty is too expensive, Bezuidenhout says, so that practice will cease. "There will be contracts with the residents totally defining the terms of their stay. One of the key admission criteria will depend on their goals," she says. "We won't kick anyone out, but if they want to extend their life, it may not be the place for them."
Marsha Miller, who put her eighty-year-old mother, Mildred Schlepp, in the Denver Anam Chara home in November after she suffered a stroke, says the letter makes her worry that the Anam Chara philosophy will disappear with Namaste. And she shares Quinn's suspicions about Bezuidenhout. "Since she had planned to open a home all along, it makes me suspect that she orchestrated this thing from the very beginning," she says. "It looks like she viewed Peggy as an easy victim."
Quinn's ouster from Anam Chara made Miller furious. When Quinn was in charge, she visited the Denver home weekly and got to know every resident. With the help of family members, Quinn wrote profiles on the residents so that the caregivers would have, on file, a history of who they are, what makes them tick, what brings them comfort.
"The value of Anam Chara is the entire psychological, spiritual and emotional support the residents get," says Miller. "Peggy sat and knitted with my mother. Peggy established a relationship with her; she did that with every resident. Every resident got a hug from Peggy. She enriched their lives. Mother knew when Peggy was banned from the house, and she was enraged. Jan doesn't visit the house regularly. My mom doesn't even know who she is."
Although the same caregivers are still working in the Denver home, Miller worries that without the organization's visionary guiding them, the emotional part of the caregiving will become secondary. "The staff no longer has the thread woven through it that brought everyone together and kept them following the same philosophy," she says.
Miller also worries that some residents will feel they need to leave once Namaste takes over. "[Bezuidenhout] is attempting to sound supportive, but to me, the letter says she's going to change everything. I'm sure Jan will make things uncomfortable for the Medicaid people so that they'll leave."
Bezuidenhout insists that she won't limit the number of Medicaid patients, however.
After the Denver home is sold to Namaste, there will still be the question of what to do with the Boulder property. The head of an elder-care facility is apparently interested in purchasing it, but Wall wouldn't identify the prospective buyer. Another option is to sell the home on the open market, pay the City of Boulder back for its $100,000 grant, and use the remaining money to create an Anam Chara foundation that would award grants to organizations with similar missions.
A decision probably won't come for a while, but one thing Berzins is sure of is that Quinn won't have any part in it. "The Boulder home will almost certainly not be returned to any kind of Friends of Anam Chara-type group," he says. "After the original Friends of Anam Chara disbanded, it would be irresponsible to hand it over to another group that might become similarly frustrated with Peggy."
Whatever happens, it's the end of Anam Chara as Quinn knew it. And yet she still hasn't let go. She continues to refer to Anam Chara as her own and to speak of the "real" board that will eventually take over. She recently applied for a license to run the Boulder home even though she has no authority to do so, and she says she also plans to get hospice certification so that Anam Chara can someday qualify for more Medicaid reimbursement.
Simpson, the woman responsible for assembling the board that ousted Quinn, says the reason her former boss won't give up is simple: "Peggy wanted to be everything to Anam Chara because Anam Chara was everything to her."
"The way I see it, Peggy made some mistakes," says Jae Shim, "and I think the boardmembers had some good reasons for the actions they took. But their actions were too drastic, too destructive. The Friends of Anam Chara were willing to take over and keep the Boulder house open, and I think we could have done it. But the board was adamant about closing the home."
And though Shim supports Quinn and is grateful for the care she's given his mother, he questions her tactics as well. "I'm finding out that Peggy is a very stubborn woman, and I kind of respect that, but I think she should soften her position."
At Quinn's house, Jae's mother, Jong Shim, has emerged from her bedroom. Her nap is over, and she doesn't want to sleep anymore. "Go. Go," she says. "Go. Go."
She repeats this over and over again while she shuffles about. She taps Quinn's shoulder and points to the back door. Does she want to go outside? Before Quinn can ask, Jong moves toward Wanda, who's sleeping on the couch. She nudges Wanda and repeats her insistent plea. "Go."
Wanda wakes up agitated; she wants to rest, and it's impossible with Jong walking around. Quinn gently coaxes Wanda back to sleep. "It's okay," she whispers in a sing-song tone, as if to a baby. "It's okay."
Quinn then finds Jong, who is on her way back to her bedroom. She puts her arms around the small woman who, right now, is completely dependent on Quinn. "Shhhh," Quinn says softly, as she strokes her hair. In Quinn's arms, Jong finally calms down.
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