Healthy Living: Easing the Burden

 

 When Susan Beckwith, 51, of Wethersfield learned last year that her sore throat and the lump on her neck were actually cancer of the tongue, she didn’t spend any time researching what to do next. She headed straight to Hartford Hospital’s Helen & Harry Gray Cancer Center.

And when Lori Redmer, 43, of Westport found out in January that she had a rare form of aggressive breast cancer that strikes young women, she went to Memorial Sloan-Kettering Cancer Center in New York for a second opinion. But in the end she decided to go with treatment and care at the Smilow Family Breast Health Center at Norwalk Hospital’s Whittingham Cancer Center—especially since she could participate in a clinical trial there.

What these women and thousands of other state residents have learned in recent years is that cancer care in Connecticut is now state-of-the-art, under one roof, patient-centered and usually available less than 40 minutes from home. That’s because 26 of the state’s 30 acute-care hospitals have cancer-care centers accredited by the American College of Surgeons, whose 36 standards cover diagnosis, treatment, physicians and staff, availability of clinical trials and support services. What’s more, these hospitals are guided by a federally mandated cancer-control plan developed by the Connecticut Cancer Partnership (ctcancerpartnership.org), a coalition of 300 cancer specialists from around the state that establishes the state’s goals and priorities for fighting the disease. The main goal is that care be evidence-based and cost-effective.

“Cancer care is an important part of what hospitals do,” says Andrew L. Salner, M.D., past chair of the Cancer Partnership and director of the Gray Cancer Center, which treats 3,000 new patients a year. “It probably represents 10 to 20 percent of their business. We’re fortunate that we have many good cancer centers in Connecticut that have excellent physicians and good resources and have invested heavily in their equipment.” As patients live longer, say doctors, this becomes even more important because patients’ relationships with cancer centers may continue for years for monitoring, treatment, wellness services and survivorship support. 

The American Cancer Society estimates there are 11.7 million cancer survivors in the U.S. today, with 1.5 million new cases projected for 2010—20,750 of them in Connecticut, roughly the annual average. The good news is that cancer incidence and mortality rates have been dropping nationally and statewide for more than a decade, thanks to early detection and better treatment—even the five-year survival rate is inching toward 70 percent. The worrisome news, however, is that 41 percent of men and women will be diagnosed with cancer in their lifetime, according to the National Cancer Institute.

Connecticut doctors anticipate a rise in new cancer cases because of the state’s aging population, which is at higher risk (nationally, the median age at diagnosis is 66). Compounding the problem is the loss of jobs and health benefits, which prevent residents from getting regular screenings, and the fact that the population that has already experienced cancer risks recurrence. “My guess is that most centers are pretty much functioning at capacity,” says Salner. “That’s just how prevalent cancer is.” Virtually every family is impacted, he adds.

So how has the cancer-care community in Connecticut responded differently than, say, 10 years ago? Abe Lopman, executive director of Yale-New Haven’s new $500 million, 14-story Smilow Cancer Hospital, says the movement is toward individualized treatment plans created by teams from across the radiology, medical and surgical oncology disciplines, and integrative medicine that wraps support services around patients and their families to address their emotional and spiritual needs. These support services  can include massage, art therapy, acupuncture, Reiki touch therapy, reflexology, yoga and dance classes, nutrition, aromatherapy, counseling, even pet therapy. Most cancer centers have weekly meetings where doctors review each new case and weekly meetings of the support team, which may include nurses, naturopathic physicians, psychologists and clergy.

 

For all the time and money spent planning and building these programs, and constructing the facilities, a big question remains: Do all these support services improve outcomes for patients? Although there is no concrete data, cancer patients who avail themselves of these services report feeling less fatigued, less stressed and better able to manage their rigorous treatment, their weight and their pain. “Intuitively, we know it makes sense that all these things help,” says Salner.

Griffin Hospital in Derby follows the Planetree approach, developed in 1978. More than 150 health-care institutions across the U.S. and abroad, including at least three other Connecticut hospitals (Stamford, Danbury and New Milford), have committed to this holistic approach which is reflected in their appearance and services.

One important Planetree feature is the “patient navigator,” a trained nurse who serves as the patients’ advocate and helps them deal with emotional or physical issues that arise before, during or after treatment. At Griffin’s Center for Cancer Care, Carrie O’Malley, R.N., Griffin’s patient navigator, is usually the first friendly face a patient sees. At other hospitals, the patient navigator could be a therapist, a trained case manager or even an American Cancer Society representative.

A caring staff attentive to a patient’s needs makes a huge difference. When Susan Beckwith panicked and got claustrophobic from a mesh mask she had to wear during radiation treatment, the Gray Cancer Center staff gently explained several options to alleviate her anxiety. She chose meditation classes at the Institute of Living across the street, which helped calm her down. When Lori Redmer had trouble relating to older patients, Smilow’s family therapist connected her with someone closer to her age with similar life issues. That was extremely valuable, she says. Notes Richard Zelkowitz, M.D., medical director of the Norwak Hospital’s Smilow center, “Most patients end up in the family therapist’s office, and most of the doctors at some point do, too.”

Even though most cancer care takes place on an outpatient basis, offering that care in the right setting is of increasing importance to patients, physicians and staff. That’s where Connecticut has made much progress in recent years. Although there is no template for the size or layout of a cancer center, the new ones have put in place—and the older ones are renovating and redecorating to reflect—an environment that is comforting, peaceful and healing. Patients are met with soothing earth tones and pastel colors, wood trim, attractive artwork (Lopman says the Smilow Cancer Hospital’s art collection is one of the largest in the state), cafés, lots of natural lighting and healing gardens. 

Dr. Pradip Pathare, medical director of Norwalk Hospital’s C. Anthony and Jean Whittingham Cancer Center, which took on 783 new patients in 2009, remembers when, 30 years ago, radiation therapy took place in the basement of the hospital and other services were in locations around the city. “Cancer care was fragmented,” he recalls. “A person sent for radiation walked into the bowels of the hospital between the laundry and the morgue; there was one little closet for a waiting room and one little machine.” Others remember patients who came for chemotherapy and spent hours in an infusion chair in a room with bare cinderblock walls.

“I am a cancer survivor,” says Margaret F. Deegan, vice president of ambulatory services at Griffin. “When I went for treatment long ago, it never really felt comfortable. I had my treatment and then I’d leave. There was a coffee bar and a chapel, even a boutique. But I was never really sure if I should help myself or not. That stuck with me. We’re here to make people as comfortable as they can be during their treatment journey.” Richard Zelkowitz of Norwalk’s Smilow center, whose mother died of breast cancer 22 years ago, says, “Most of us have lived this, as a physician or a family member. You don’t forget what it was like.”

 

Griffin’s Center for Cancer Care, one side of a one-story building that opened in 2008 at a cost of $26 million and serves 400 to 500 new patients a year, looks a lot like a spa or upscale hotel. Hospital officials visited 20 facilities around the U.S., including the Wynn Hotel in Las Vegas, to develop ideas for the design of the courtyard “healing garden” and other features of the center. The result is a lobby that features a circular sanctuary for peaceful reflection and pastoral care, a health-resource center with computer linkage to medical librarians at the main hospital, a baby-grand player piano, and a glass wall through which you can see a lovely garden with a rock wall and waterfall. The garden can also be viewed by every patient receiving radiation or chemotherapy treatments in rooms off the courtyard. Based on input from focus groups (patients and staff), Griffin created single-gender waiting areas with a Southwestern influence, lounge chairs, gas fireplaces and, in the dressing room, terrycloth robes. Patient comfort and privacy were key considerations; for example, those receiving chemotherapy in the infusion section are separated from other patients by undulating walls of colorful, opaque glass.

Yale-New Haven’s 500,000-square-foot Smilow Cancer Hospital, which opened a year ago and consolidated services that had been spread across six buildings, is expected to serve more than 3,000 new patients a year. Hospital administrators there also conducted focus groups and visited sites around the country to inform the design. Lopman even had full-size cardboard models of room layouts built to enable staff and patients to live with the design before it was constructed. 

While the hospital’s final design was influenced by its urban setting and volume of patients, much thought and money was put into the exterior and interior, including a two-story lobby and seventh-floor healing garden with a stream and gazebo that overlooks the city and can also be accessed by the pediatric hospital next door. The hospital entrance features a granite water wall, a café and a boutique like those on cruise ships, where patients can purchase everything from pajamas and hats to jewelry and lotions. Patients who need wigs or post-mastectomy wear and prostheses are fitted in a private room.

Linda Secher, the manager, who says she has designed 24 cancer-center boutiques, was wooed to Connecticut by Lopman to take on the challenge of running “the most complete” cancer boutique available. “We are part of the healing,” she says. “If we can make people feel good, then we’ve done our jobs.”

Besides the latest high-tech scanners and lasers, some cancer centers, such as Smilow and Griffin, are using technology to go paperless. When patients arrive for appointments at Griffin’s cancer center, they register on computerized smart pads and get ID cards that can be scanned to announce their arrival on subsequent visits. The results of their tests and scans are available quickly to medical staff across the center. At the Smilow Cancer Hospital, workstations have been established in the corridors between every two inpatient rooms to enable medical and support staff to review information and add their own. Doctors, nurses and social workers can take “workstations on wheels,” or WOWs, directly to patients’ rooms and enter data on the spot. 
Cancer centers are working hard to get the word out about all they have to offer. Competition and economic pressures have forced hospitals to advertise more heavily to let the public know about their doctors, technology, support services and classes.

Did the opening last fall of the Smilow Cancer Hospital force other hospitals to ratchet up their marketing campaigns? “You bet,” says Salner. “It’s not only about protecting market share. It’s also a declaration that we’re proud of the programs we have and the fact that we deliver good care right here in the community.” Yet there are doctors who bemoan the trend. Pathare in Norwalk says, “We’d rather see those dollars go into patient care than into marketing and billboards.”

 

As for the next priority for cancer centers, according to state experts it’s survivorship programs—support groups for patients with particular cancers, for spouses, for parents and for children. “For the first time, the balance has shifted,” says Lopman of the trend over the past decade. “We have more people who have survived cancer than are in treatment. What does survivorship mean? There may not be one answer.” Says Beckwith, “When the treatment was over, part of me was really excited. But the rest of me thought, ‘You mean I can’t come here anymore?’ I know I’m safe when I come here. You’re kind of paranoid after that.”  

But all these expanded facilities and services come at a high cost—many cancer centers carry the names of philanthropists, such as Bennett, Whittingham, Smilow, Leever, Gray and Neag. Have the donors driven the growth? “The real answer,” says Zelkowitz, “is that without the monies people have donated, we would be in big trouble. They’ve allowed us to expand and give patients the services they need.”

What doesn’t cost money, but adds tremendous value, say cancer patients, are the volunteers, many of them cancer patients or survivors themselves. They find roles working in boutiques, helping with fundraisers and serving as mentors to new patients. Beckwith hopes to volunteer at the Gray Cancer Center partially to thank her caregivers. “They treat you like you’re their only patient,” she says. “It makes you want to become a part of it, but you wonder if you are kind enough.”

Redmer, a marketing executive, says the volunteers at Norwalk’s Whittingham Cancer Center were inspirational and made a big difference in her care, which she estimates involved 50 visits to the cancer center from January to August. “There is no doubt I will be connected in some way,” says Redmer, who is considering enrolling in Yale Divinity School. “Spirituality and healing will be my future. I want to say, when I am 80 years old, that breast cancer was the greatest gift I ever got because it helped me relive my life in the best possible way.”
 

Healthy Living: Easing the Burden

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