The Healing Journey

Paula Golden has dealt with more than her share of cancer. In 1977 she had breast cancer. In 1991 it was stage 4 ovarian cancer, and then in 2003 it was lymphoma. The Syracuse, New York, retired social worker, now 64, calls herself a miracle, but she is also unique in that she has watched a changing medical delivery system that has gone from what she calls the dark ages to the age of enlightenment. That’s right, because unlike most patients, who complain about today’s pressurized managed care medical environment, Golden had exactly the opposite experience because of a group of physicians and a CEO who decided that patients needed more, not less.

When I had my hysterectomy in 1991, I remember one night in the hospital when I felt so lonely and afraid,” Golden recalls. “I asked the nurse if she could spend a little time talking to me. She said she was too busy. When she left, I was so low. I remember thinking that I was ready to die.”

But in 2003 when cancer struck again, Golden walked into the new facility built by Hematology/Oncology Associates of Central New York in Syracuse.

"It was really a team approach. And the facility is like a beautiful hotel,” Golden says. “I would stop and get a massage before my chemotherapy to relax me and then go upstairs and get my chemo. On the way out I would stop and see the nutritionist or social worker if there were other issues I needed to look at.”

No one disputes that the United States offers the best cancer treatment in the world. But others argue that changes in the healthcare system have put pressure on physicians, including those who specialize in cancer, to see more patients and move them more quickly through the system. At the same time, patients want exactly the opposite; they want more time, more choices, more information, more human connection, more options for things they can do to help themselves heal.

In short, a growing number of patients and physicians want to change cancer treatment from focusing on cure, which can be elusive, to focusing on healing and the whole person—no matter the outcome.

The challenge in navigating such a shift for both patient and provider means understanding language, approach, delivery, reimbursement and science in a medical system that has yet to identify a standard or even adopt similar language for integrative medicine.

Indeed, even the term “integrative treatment” is used by doctors or health care systems to mean a variety of things from coast to coast, ranging from hospitals that use it as a marketing term that says all aspects of cancer care are provided in one building to a physician calling his or her approach integrative because of a knowledge of existing external local programs that provide emotional and social support to which he or she can refer patients.

The more accepted definition, according to those who practice and promote integrative treatment, actually involves not only looking for ways to incorporate complementary modalities, such as nutrition, body work and psychosocial programs, but a paradigm shift in the way physicians treat patients, a shift that looks at the whole person not only at the body and its response to surgery and chemotherapy but all aspects of health and well-being. It means, according to those encouraging such an approach, a new kind of medicine that includes adding a number of components to medical school training.

Massage? Nutrition? In the same building? Yes. And more. Patients can also get acupuncture, yoga, lymphatic drainage, foot reflexology, healing touch, and Reiki therapy in the same building where they receive treatment. Or they can go to a support group for those with recurrent cancer or a caregiver’s group.

Golden called it the difference between night and day. The cancer community calls it an evolution into treating the whole person, or integrative medicine, which is popping up in a variety of forms around the country.

The current lack of standard leaves much for the patient to sort out, says Tracy Gaudet, MD, director of the Duke Center for Integrative Medicine (DCIM) and assistant professor of obstetrics and gynecology at Duke University Medical Center in Durham, North Carolina.

"Our definition is that we want a commitment to the best practice of medicine regardless of its system of origin,” says Gaudet. “If something can help our patients, they should be aware of it and have access to it no matter if it comes from a Western conventional medical system or an Eastern system.”

Such modalities have also been called complementary and alternative medicine (CAM). But the word “alternative” brings reaction from some practitioners since they constantly have to fight the perception that they are telling patients to stop standard treatment to use something else. But Gaudet has a problem with the word “complementary,” because she feels it still says these modalities are extra.

Our definition is that we want a commitment to the best practice of medicine regardless of its system of origin. If something can help our patients, they should be aware of it and have access to it no matter if it comes from a Western conventional medical system or an Eastern system.

No matter what they call them, those in integrative practices agree on the set of modalities that are being integrated, which range from mind-body relaxation techniques, such as deep breathing and journaling, to the use of acupuncture and acupressure to spirituality and prayer to more complex areas that include the use of botanicals and herbs.

Duke has had a long-standing commitment to integrative medicine and will soon break ground on a freestanding, 27,000-square-foot facility that will include residential space. Patients can stay for a four-day immersion program to create a personal integrative health plan that will provide them a clinical assessment and diagnostics and introduce them to the appropriate therapeutic approaches in numerous modalities that include Chinese medicine, body work, nutrition, and other complementary modalities. Patients can attend cooking classes, educational experiences, workshops, and one-on-one consultations. There will also be educational programs for professionals and the public.

Linda Smith, director of programs and operations at DCIM, explains that one of the primary goals is to help people look at risk versus benefit of the modalities they are considering to understand where there is science and where there isn’t.

"The potential for harm is great in some areas, so we look at a risk-benefit assessment. That includes all the areas: mind-body, movement, prayer, relationships, communication, herbs and supplements, complementary therapies, and conventional medicine treatments.”

Smith says that empowerment is a huge issue for their patients, who are referred by physicians throughout the Duke system and from across the country as well as self-referred. One such Duke patient, 53-year-old librarian Sarah Hudson, was referred to Smith after her 1999 mastectomy.

"I had great medical care,” Hudson says, “but I was having a lot of problems. I gained 60 pounds on tamoxifen and was really concerned because diabetes runs in the family.”

Hudson met with Gaudet and Smith who did an extensive intake to explore where she was, not only with her cancer but also with her life. Stress from additional family illnesses had taken their toll, Hudson says, and Gaudet and Smith customized a plan for her that included such things as nutrition, journaling, breathing and exercise. Hudson started the program and met with Gaudet every three months to assess her progress.

In 2002, Hudson took part in DCIM’s Optimal Vitality for Life program, an intensive program that not only gave Hudson a plan but also immersed her in classes on how to implement the program.

"I developed plans for nutrition and got a personal trainer. We also learned meditation. I had been serious but this really got me going.”

Today, Hudson has lost 53 pounds, and, after receiving her first massage at age 53, she now gets one at least once a month. “Spiritually and emotionally and physically, I am doing things I never thought about before,” Hudson says.

“We would all be better off with this kind of medicine.”

While the Duke and Syracuse integrative programs are located on the campus of a medical facility, often doctors refer patients to programs they have helped create in their communities, where trained practitioners provide complementary modalities.

Robert Brooks, MD, medical director of patient advocacy for US Oncology, was instrumental in supporting the creation of Tucson-based Sunstone Cancer Support Foundation, which provides classes, workshops and retreats in a wide variety of complementary areas in a remarkably serene and supportive environment. Patricia Harmon, president of Sunstone, calls the approach strength-based.

"We assume empowerment and strength instead of pathology,” Harmon says on a walking tour of the 13-acre property, where weekly classes in bodywork and emotional recovery issues are held at no charge. Last year, 750 local cancer patients and their families used outreach services and almost 200 from other cities visited Sunstone for an immersion retreat.

Brooks says that in his practice new patients are given information about Sunstone by a financial counselor before he goes over the information with the patient during their first meeting, encouraging them to get involved early.

Brooks also recommends a nutritionist and has suggested acupuncture and acupressure for patients when traditional approaches fail in nausea and pain control.

“I don’t know where acupuncture should fit in the whole approach of nausea and vomiting, but I have seen it work. I had a young man with pancreatic cancer and nothing worked for the nausea until he tried acupressure. In my view, if it’s not harmful and makes someone feel better, why not.”

Brooks says oncologists who are reluctant to refer their patients often don’t disagree with the modalities, they are just unaware, having been trained only in Western medicine.

Indeed, to help oncologists understand and better recommend complementary therapies, Barrie Cassileth, PhD, chief of Integrative Medicine Service at Memorial Sloan-Kettering Cancer Center formed the Society for Integrative Oncology (www.integrativeonc.org) in 2003. This organization, which held its first international conference in 2004, is dedicated to optimizing cancer treatment by serving as a scientific forum for complementary therapies in cancer care.

Randy Horwitz, MD, PhD, medical director of the Program in Integrative Medicine at the University of Arizona College of Medicine, has taken part in the shift to integrative medicine, first as a physician and now as director of the country’s first university-based fellowship in integrative medicine.

Begun by Andrew Weil, MD, in 1997 to train physicians in the philosophy of integrative medicine, Horwitz says the two-year fellowship program looks at the practice of medicine as the creation of a relationship between patient and practitioner, utilizing all appropriate therapies, both complementary and alternative, for the board-certified physicians who take part.

Indeed, Horwitz began his career in internal medicine, specializing in allergies, and has a PhD in molecular biology. When he began practicing, he felt that he was missing significant components that his patients needed. In 2001 he entered the fellowship, staying on to become medical director.

People think we say to patients on chemotherapy, ‘No, you should take this plant extract instead. We can cure you with this.’ Nothing could be further from the truth.

Since the clinic often sees as many patients from out of state as from the Tucson area, Horwitz relies on a network of practitioners across the country, many of whom work with fellows trained either onsite or through the program’s new distance learning program.

"We match patients with practitioners in their area and if we don’t know someone, there are ways we have to find them, but we always make sure that the person they are seeing is licensed or certified.”

Horwitz agrees with Brooks that the reluctance of many oncologists to recommend complementary approaches has to do with a lack of understanding of the goals of integrative physicians.

"People think we say to patients on chemotherapy, ‘No, you should take this plant extract instead. We can cure you with this.’ Nothing could be further from the truth. Often, people come here saying they don’t want chemo or radiation and ask us for an alternative. We had a patient last year that had a solitary Hodgkin’s node that was removed surgically and the physician told him the next step was radiation just to be sure. The patient refused.”

Horwitz says both he and Weil tried to convince the patient that radiation was his best chance for an absolute cure, recommending he do radiation and that they would work with him on a regimen of antioxidants to minimize the collateral damage. The patient still refused.

"We tried,” says Horwitz. “And then when he said he was adamant, I said I would support him even though it was not my optimal therapeutic choice.”

Horwitz says the second issue for conventional physicians is the fear that integrative physicians will turn patients against them or counter their advice, which he calls another fallacy. Often, Horwitz says, he sees patients to whom doctors have said, “There is nothing more we can do.”

"Everyone is hoping for a cure,” he says, “and we discuss the notion that, although curing is not always possible, healing is always possible. Some accept it readily and some don’t and we have seen it time and time again. You can be healed and not be cured.”

In most cases integrative medicine remains for those with the private resources to pay, but as therapies become more proven such as acupuncture and acupressure, insurance companies are beginning to come around, says Horwitz, who looks to insurance company recognition of modalities as the best way for broad public acceptance.

The challenge here, Horwitz says, is getting the science. “We don’t yet have studies to show it’s more cost-effective, which is the insurance company’s bottom line. Patient satisfaction is not high on insurance companies’ lists.”

Outcome studies are growing in integrative medicine, but because there are few profits to be made in integrative modalities, the money to fund studies is not there. But Horwitz says that often the things that can be done, such as good nutrition, stress reduction and exercise, are free if the patient has the information to apply them.

Horwitz and others who practice integrative medicine are optimistic about its growth and the number of physicians and, more importantly, medical schools now embracing integrative therapies. In addition to its onsite fellowship program and distance learning program for physicians, Horwitz also welcomes 30 medical students and residents who spend a month-long rotation at the clinic, taking back what Horwitz calls “seeds of change.”

"You have to start changing the way medicine is practiced at its roots and that is medical schools,” Horwitz says. “We now have an academic consortium of 27 medical schools that have made a commitment to integrative medicine, and the dean of each medical school has to be on board.”

Gaudet at Duke agrees.

"Ideally we don’t want to see integrative medicine develop as a subspecialty. We want integration into the whole system. We want it to become medicine. If we educate people differently, they will listen differently and make different recommendations.”