Hospice: Building Hope with caring hands,
bricks, and mortar
It’s a tragic story, but not one without compassion. Early this summer, a 34-year-old father and his 5-year-old daughter both received jolting news from the doctor. His chemotherapy treatments were no longer effective, and cancer was eating its way throughout his brawny, 6-foot frame. Days later, his daughter – the blonde, bubbly, blue-eyed light of his life – would also receive grim news as one of 110 people in the world diagnosed with metachromatic leukodystrophy. This extremely rare and fatal neurological disease was beginning to advance.
When it became clear that the focus of this pair’s health care should move from curative to quality of life, the family physician referred them to Hospice of Northeastern Illinois (HNI). “When I first went to visit this family, they were overwhelmed with panic and grief,” says Carrie Farella, coordinator for HNI’s pediatric program. “The wife was devastated. In the course of one month she learned that her soulmate and her youngest daughter may not live through the summer.” On the surface, they look like the perfect family. They live in a beautiful Barrington area home that’s adorned with portraits and pictures of family weddings, birthdays, and vacations from happier summers. “In all my years of working in hospice, I’ve never had to care for a parent and their child at the same time,” says Farella. “It’s heartbreaking. But it’s also inspiring, knowing that we can support and care for the entire family, in their own home, at such a critical time. Their pain and symptoms are being managed, but we’re also helping them live each day as fully as they can. This is an unusual case, but it represents one of our agency’s greatest moments.”
The hospice philosophy
Part of HNI’s philosophy of care is to help patients realize their end-of-life goals. Those goals usually include keeping the patients at home and managing their pain or symptoms in a way that allows them to be comfortable and participate in life with their family and friends. To accomplish these seemingly simple goals, each patient is assigned an interdisciplinary team of support, including a specially trained physician, nurse, certified nursing assistant, chaplain, and social worker. Patients can also choose additional care, free of charge, from a full menu of services such as massage, music, reiki, art therapy, and pet therapy.
Often, helping people meet their end-of-life goals requires less traditional actions: covering the cost of special medications or medical equipment not covered by Medicare; purchasing plane tickets for financially strapped family members to reunite at their mother’s bedside; moving a 12-year-old boy from a Minnesota hospital to Barrington so that he can die at home; or making it possible for a father like Leonard Radtke to see his son play professional football for the first and last time.
Wishes granted
Radtke, an Amyotrophic Lateral Sclerosis (ALS) patient who has been in hospice care since July 2007, recently reaped the benefits of a care team that gave him an opportunity he never thought he’d get.
No longer able to walk and on a portable ventilator, Radtke receives regular clinical visits from a hospice nurse and bi-weekly massages from massage therapist Dana Conlon. It was during one of those visits that he talked about always attending his son Lenny’s youth league, high school, and college football games. But due to his illness, he had never watched him play for his arena football team, the Chicago Slaughter.
Once that information was passed on to Radtke’s caregivers, the team sprung into action and, with the assistance of Elgin Medi-Transport, the Chicago Slaughter, and the Sears Centre, Radtke got to the game to watch his son take the field as a professional football player. “It was an amazing experience,” says his wife Deborah. “We couldn’t believe how fast HNI pulled everything together to get Len to the game.”
Radtke’s family members were just thrilled with the experience. “This was a once-in-a-lifetime chance for him to go,” says his daughter, Tami Velasco, who noted that her brother Lenny gave their dad a thumbs-up when he was introduced on the field at the start of the game. “We all kept it together [emotionally] until after the game, when Lenny presented my dad with the game ball. Then there wasn’t a dry eye around.”
Although he admits that it was a physically taxing experience, Radtke said he was so happy to go to the game. “I want to thank everyone at Hospice [of Northeastern Illinois] for this wonderful present,” he says.
Tina Spath, a hospice-certified nursing assistant, visited with the family following the game and saw pictures from the event. “You could tell he was so happy,” she says. “This is what hospice is about. It’s about making the patient’s wishes happen, and making them comfortable and happy.”
Radtke is fortunate. Unlike most people, he sought out hospice care when he felt he needed it. The surprising truth is that thousands of people in northeastern Illinois who need hospice care do not receive it. According to the National Hospice and Palliative Organization (NHPCO), more than 10 million Americans could have improved the quality of their life through hospice last year, but only 1 million received that care. That gap is related to a number of factors, including accessibility, physicians not feeling prepared to have difficult conversations with patients, and the reality that not all patients can be cared for at home.
Expanding care
A year ago, that simple, sad truth inspired the staff and boards of Hospice of Northeastern Illinois to begin a strategic planning process that would help the agency reach more people who need end-of-life care. The process led to a five-year plan that, among other things, called for the construction of a hospice home and center for care right here in Barrington.
According to the hospice philosophy of care, one of the best ways to foster a more natural, holistic, and compassionate approach to care as someone nears the end of life is to care for them at home. However, when that’s not possible, a hospice home allows the patient to be cared for in a warm, home-like setting that comfortably accommodates family and friends who wish to stay the night, prepare and share meals, find temporary respite, and be present with their loved one.
According to Rose Lewandowski, an HNI clinical team manager, “The new building will allow the dying process to take place in an environment of dignity, peace, and compassion, rather than in an environment filled with medical equipment and institutional finishes. It is an alternative to being admitted to the hospital, where medical staff may not be trained nor equipped to manage the pain and symptoms of the dying as effectively as hospice staff.” In cases where the patient does not have a caregiver at home or when the caregiver has become weary and fatigued, a hospice home can be a welcome alternative.
“As great and committed as hospice is,” says Jim Lancaster, an HNI board of trustees member, “it can periodically be held back from fulfilling its mission when a patient’s spouse or caregiver simply runs out of gas. A hospice home will be the answer for those unusual types of situations.”
Despite a growing need for hospice homes, there is only one other in the state of Illinois and only 250 in the United States. According to Dee Beaubien, a member of HNI’s board of directors, “The lack of growth [of hospice homes] in this area may be connected to a general lack of awareness of how hospice care can not only improve a person’s quality of life, but extend it.”
Meeting an accelerating demand
A recent study conducted by National Hospice and Palliative Care Organization (NHPCO) demonstrates that terminally ill patients live longer if they receive hospice care early in their diagnosis. Researchers studied 4,493 terminally ill patients and found longer lengths of stay – averaging approximately 30 extra days – for patients with congestive heart failure, lung cancer, pancreatic cancer, and colon cancer who were receiving hospice care. The study further concluded that hospice patients may live longer because they receive exceptional monitoring and treatment as well as psychosocial care.
The demand for hospice is expected to accelerate for several other reasons as well. America’s population is graying. Aging baby boomers – an estimated 78 million born between 1946 and 1964 – will reshape healthcare. By 2030, Medicare anticipates hospice spending will climb from $10 billion to $45.6 billion. In addition, says Lewandowski, “Hospice is not only the best and most compassionate way to care for patients at the end of life, it is also the most cost-effective option.” According to a recent Wharton School of Business report, it costs the U.S. government less than 1 percent of the Medicare budget to care for hospice patients. The routine Medicare benefit in 2007 was $148 per day for in-home and $657 for general in-patient hospice care, compared to daily acute-care hospital payments of more than $3,000.
Studies from the NHPCO indicate that the need for hospice will outpace capacity as physicians, caregivers, and patients become more aware of, and comfortable with, hospice as a viable health-care alternative. Even today, the number of people receiving hospice care is growing by 14 percent (or 150,000 patients) each year.
Bringing a hospice home to Barrington
HNI’s new Hospice Home and Center for Care will be built on 6.7 acres of picturesque wooded land off of Lake Zurich Road, east of the Barrington Area Library and near Citizens Park and the Pepper Construction headquarters. The facility is centrally located for the agency’s surrounding six-county service area. To help design and build a one-of-a-kind and Leadership in Energy and Environmental Design (LEED)-certified hospice home, HNI has secured the partnership of Pepper Construction, as well as Tom Mullinax, who is one of the country’s leading architects for hospice facilities, and Harley Ellis Devereaux, a century-old national design firm. HNI’s new facility will be Barrington’s second LEED-certified building (Pepper Construction is the first) and one of the country’s first LEED hospices.
Sixteen individual patient rooms will accommodate an estimated 1,100 patients per year. A family room, gathering kitchen, meditation room, play area for children, and a healing garden will envelop patients and families in an environment of comfort and safety. Each family member will have access to support and resources from both the care team and the agency’s Center for Loss and Hope, which will also be housed in the new building.
“This project represents all that is good about our community,” says George Yapp, a member of both HNI’s board of trustees and board of directors. As a campaign co-chair for the new building, Yapp says, “The new Hospice Home and Center for Care will provide a service that is currently not available in our area. We want to ensure that hospice is here to help people both today and well into the future. I’m excited about this project because it is an opportunity to do something significant that will last well beyond any of our lifetimes.”
Lancaster, who serves as the campaign’s other co-chair, concurs, saying, “You never know who will need hospice care. It might be me. It might be you. This hospice home is really important to the community, and I want to do everything I can to make sure it happens. The thing that continues to amaze me is the dedication of the caregivers. I don’t know how they do what they do. I couldn’t do it. When I see how willingly and enthusiastically they care for patients, it motivates me to do whatever I can to help the cause.”
Ironically, many hospice patients share the same selfless commitment that board and staff members carry. Lenny Radtke’s daughter said that after the football game her father attended, he mentioned that he would like to talk with the Chicago Slaughter about arranging a benefit game for HNI. “That’s just the kind of guy he is,” she says. “He wants to give back for all that’s been given to him.”