Event

Helen Moss Breast Cancer Foundation Third Annual Tea
November 24, 2002

click here for photos

Speaker
Susan Bauer-Wu, DNSc, RN (curriculum vitae)
Dana-Farber Cancer Institute, Harvard Medical School

Cancer Survivorship, Quality of Life, and Integrative Therapies

The world of oncology has been an integral part of me, my being, for most of my life. The loss of my mother to metastatic breast cancer when I was 23 was indelible, leaving an unfading impression on me that has permeated who I am as a person and the career path I have traveled. While I, myself, have never had cancer, I have been touched, both personally and professionally, by countless lives of those who have had cancer. As a daughter, a friend, a colleague, a nurse, a retreat facilitator, and a researcher, I've experienced and witnessed the complexities, challenges, and paradoxes that come with cancer. I will now share a glimpse of my knowledge and reflections on "Cancer Survivorship, Quality of life, and Integrative Therapies".

Cancer touches every one's life. No race or ethnicity is immune from getting cancer. Rich or poor, we are all at risk of getting cancer. Though we try to insulate ourselves, we cannot go too far before we are reminded of someone we know who is touched by cancer. The statistics speak for themselves. Specifically for breast cancer, approximately 200,000 women in this country will be diagnosed this year. One in eight women will be diagnosed with breast cancer in her lifetime, and nearly half of all breast cancers are diagnosed in women over age 65. Eighty percent of women with breast cancer do not carry a known hereditary breast cancer gene. For general cancer diagnoses, the latest statistics from the American Cancer Society show that over 1 million people in the United States are diagnosed with cancer each year. One out of two men and one out of three women will get some form of cancer in his and her lifetimes. The majority of these people will live beyond five and 10 years. Needless to say, there are many, many cancer survivors. And cancer changes lives.

To illustrate the paradoxes that can come with cancer, I'd like to share a poem that was written by a woman with breast cancer who had attended a writing workshop that I facilitated a few years ago:

Fast-growing, it comes from nowhere
And takes over
Invades
Strangles
Engulfs
Obscures the beauty of the host.
But wait, what's here?
Can it be, near the end,
That the selfsame strangler is offering
Up a beauty of its own?
Ripe
Passionate
Broken up
Bursting with riotous color!
How so, leech and lover, two-in-one?
Ah, but it's in the name… bittersweet.

The analogy of cancer to the vine with small yellow and red flowers called bittersweet speaks to many. With the psychological and physical assaults that come with cancer, there is also a beauty that presents itself. Oftentimes there is greater appreciation in life or making life changes to live more meaningfully. There may also by more connection with loved ones and deepening of relationships. The bottom line though, it's reasonable to say that most people who have had cancer would have rather skipped that chapter and chosen something else to enrich their lives.

The last couple of months I have experienced such bittersweetness with my father who was recently diagnosed with a malignant tumor in his throat. My father and his dog have moved in with me and my family, and he has been receiving daily radiation therapy and weekly chemotherapy. During this time I have witnessed my father losing his voice, his teeth, his appetite, his energy, his independence and his pride. Despite the challenges and long days, I honestly feel grateful that our relationship is stronger than ever before or I ever imagined it would be. Yes, it would have been nice to experience this kind of connection with my 80-year old father sooner or under different circumstances, but it hadn't happened. Cancer has a strange way of bringing us closer to important people in our lives and refocusing the lens of what brings meaning to our lives.

Cancer also has a way of opening the eyes and minds of cancer patients and families, to ask questions and to explore what all of their treatment options are, both conventional and unconventional, with the goal of living as long and as well as possible. We know that there is no known magic bullet for curing cancer. Current conventional cancer treatments are imperfect and often result in debilitating side effects. Therefore it is common for cancer patients to ask, "What else can I do?"

Let's look at the similarities and differences of conventional and unconventional medicine/health care. Conventional medicine is standard medical care that is routinely practiced at most of the hospitals and clinics around the United States and other Western countries. Most, but not all, conventional therapies have been rigorously researched and are approved by the FDA before they are used. Insurance companies pay for most of these treatments. Conventional medical care is considered by many to be high-tech, impersonal, and the focus is on the disease, not the person. Common conventional cancer care consists of surgery, chemotherapy, radiation therapy, biological therapy, or hormonal therapy.

On the other hand, unconventional health care, frequently referred to as complementary and alternative medicine, or CAM for short, is not the standard of care at hospitals and clinics in the United States. CAM is complementary to or an adjunct to conventional care. Ideally the different therapies, conventional and unconventional, are integrated and the patient uses the best of all available therapies; hence my preference to the term integrative therapies. Integrative therapies are commonly used, but the research in this area is lagging behind its use. Fortunately there is more federal money at the National Institutes of Health to fund research in this area, specifically through the National Center of Complementary and Alternative Medicine and the Office of Cancer Complementary and Alternative Medicine at the National Cancer Institute.

Regarding reimbursement, insurance companies generally do not pay for these therapies. Integrative therapies, frequently but not always, are low-tech, more personal and holistic, and the focus is on the person, not the disease. Examples of integrative therapies are acupuncture, herbal therapy, special diets or nutritional supplements, acupuncture, energy healing, chiropractic and massage, and different mind-body therapies, such as meditation, imagery, and expressive arts.

The statistics on the use of CAM therapies are eye opening. Dr. David Eisenberg at Harvard has published landmark studies in the New England Journal of Medicine related to the use of these therapies. Between 1990 and 1997, the use of CAM in the general population increased by 47%. In 1997, it was reported that there were 629 million visits to CAM providers and it is estimated that current use is even higher. Out of pocket expenditures are in the tens of billions of dollars.

A recent publication in 2002 in the Journal of Clinical Oncology revealed that up to 83% of cancer patients have used at least one CAM therapy. They noted that those cancer patients who are more likely to use CAM are older women who are highly educated.

Earlier this year, after two years of work, the White House Commission on Complementary and Alternative Medicine Policy submitted its final report. This 200-page document is aimed to assure that public policy maximizes the potential benefits of CAM. Some of the reports recommendations include:
" Complementary therapies need to be researched.
" Conventional practitioners need to be educated in CAM therapies, and vice versa: CAM practitioners need to be educated in conventional therapies.
" Dietary supplements need to receive increased analysis and safety checks.
" Individual CAM styles of practice ought to be maintained rather than subsumed into the conventional medical model.

Besides the federal government, other important groups have established statements and guidelines related to CAM:

In April 2002, the Federation of State Medical Boards disseminated model guidelines for the use of CAM therapies in medical practice to be used by state medical boards across the country. The state medical boards are the primary vehicles by which medical practice is regulated in the United States. The thrust of the Federation was to take an evidenced-based approach, whereby conventional and unconventional medicine function with parity. Therefore the standard is good practice, not whether it's identified as conventional or CAM. That way, effective CAM therapies will rise into normal use and ineffective or unsafe CAM and conventional therapies will fade away.

The American Society of Clinical Oncologists says this about CAM:
Many cancer patients explore complementary and alternative medicine in an effort to ease their symptoms or in addition to or in place of standard treatment for their cancer. These therapies should undergo rigorous scientific evaluation to measure their effectiveness and ensure that they do not interfere with conventional treatments. It is the responsibility of physicians who treat people with cancer to ensure that their patients who are considering alternative medicine have sufficient information so that they may make knowledgeable decisions about treatment options.

The American Cancer Society says:
… We also encourage health care professionals to ask their patients about their use of alternative and complementary methods. Health care professionals should listen and know how to communicate with their patients. Open, trusting, non-critical dialogue is essential in this important area.

The consumer-driven CAM movement of the last two decades has led to current changes in policy, professional guidelines, and practice patterns. CAM therapies that used to be only available in the community are now accessible to patients in hospitals including major academic health care centers. In 2000, a survey was conducted of representatives of the National Cancer Institute's (NCI) Patient Education Network, who are from the different NCI-designated Comprehensive Cancer Centers (of which Ireland Cancer Center in Cleveland is one). Twenty-six of the 44 Comprehensive Cancer Centers responded to the survey that looked at CAM services and education available to cancer patients at their centers. Eighty-eight percent of the cancer centers said that there was at least one CAM service offered to their patients.

It is certainly an exciting time as there is more and more happening every day in the area of integrative therapies and cancer. It seems, though, that most cancer centers, if they provide integrative therapies, the options for therapies are limited and the services are used in a consultative manner. In the ideal world, conventional and CAM practitioners meet in the same room, are on the same multidisciplinary team, and each listens to each other's practice recommendations. In addition, they are all involved in research studies: trying to identify clinical interventions that can benefit their patients. This scenario is rarely, if ever, the case.

At the Dana-Farber Cancer Institute, which is part of Dana-Farber Harvard Cancer Center, we don't have a perfect model, but it is actually quite good. I can honestly say that now, having experienced it firsthand with my father as well as my professional observations over time. Dana-Farber is clearly a research-intensive center. Therefore it is no surprise that we have quite a bit of research on integrative therapies. Between the Cantor Center for Research in Nursing and Patient Care Services and the Zakim Center for Integrated Therapies, Dana-Farber has nine studies on integrative therapies that are either in progress or are awaiting funding.

Our Institute also has a high commitment to patient and family-centered care. Rather than having our patients go to an unknown CAM practitioner in the community, they can receive the services right at our cancer center where they receive their conventional cancer therapies. Referrals for CAM services, which include acupuncture, massage, energy therapies, music therapy, and nutritional counseling, may come directly from patients, family members, physicians, nurses, or social workers. Before the services are provided, the primary oncologist is sent a letter that describes the CAM therapy and encourages the oncologist to contact the Zakim Center if there are any questions or concerns.

When I arranged to have my father start acupuncture at the start of radiation therapy and chemotherapy, the oncologist immediately contacted me and the acupuncturist to express his concerns: 1) My father was asymptomatic and the oncologist didn't think he needed the acupuncture. Why not wait till he has symptoms?; 2) My father had mild cardiac arrhythmias and the oncologist was concerned that the acupuncture would make it worse; and 3) The acupuncture needles might be problematic, since my father was taking blood thinning medication.

The acupuncturist and the oncologist had a wonderful interchange. The acupuncturist described one study in the Chinese literature that demonstrated benefits of using acupuncture preventatively with cancer patients, before or as they begin radiation or chemotherapy, to minimize side effects. He also discussed research on the safety of using acupuncture in people with cardiac arrhythmias; in fact, acupuncture has been shown to be effective to actually treat arrhythmias. He also explained that the depth of the acupuncture needle insertion and the size of the needles would not pose a problem with bleeding; in reality, the acupuncture needles are far less invasive than the regular needles used for blood draws and chemotherapy. After this dialogue, the oncologist's eyes were opened and he was receptive to my father beginning the acupuncture treatments.

It's interesting to note that my father has received regular acupuncture treatments, once or twice a week, concurrently with his cancer treatments for the last five weeks. The doctors and the nurses are surprised at how well he has been tolerating his treatments, saying that he ought to be doing a lot worse than he is. I remind them that he's been getting acupuncture. The general response is, "Do you really think that's making a difference?" I just shrug my shoulders and smile.

The beauty here, in this exemplar of my father, is that he, like all of the Zakim Center patients at Dana-Farber, receives all of his treatments, both chemotherapy and acupuncture, under the same roof. The oncologist and the acupuncturist had active and open communication. They agreed on a reasonable plan of care. They also both document their care and progress notes in the same medical record. All of these activities assure for safe and high quality care with less burden on the patient and family. Needless to say I feel fortunate that my father has been receiving such wonderful care.

I am also fortunate to work where I do. Besides the Cantor Center and the Zakim Center at Dana-Farber, the resources at Harvard support our efforts in this field of integrative therapies. The Osher Institute is Harvard Medical School's Division for Research and Education in Complementary and Integrative Medical Therapies. The Osher Institute, directed by Dr. David Eisenberg, was established in April 2001 through a 10 million dollar endowment from the Bernard Osher Foundation of San Francisco. The Osher Foundation also donated a significant amount of money to the University of California San Francisco for a similar program. Harvard and UCSF have held annual conferences for physicians, other health care professionals and scientists that highlight rigorous CAM research and important practice and policy issues.

In addition, an annual cancer-specific CAM conference is the Comprehensive Cancer Conference co-sponsored by Dr. James Gordon's Center for Mind-Body Medicine in Washington, DC. (Helen Moss and I have both had the pleasure of presenting there.) This conference is open to both health care professionals and patients. While the conferences provide an excellent opportunity for learning and networking, the number of participants is merely the tip of the iceberg compared to those who don't attend. I also feel that when I am at these conferences, it's like preaching to the converted.

The next generation of physicians and nurses will be better trained than those in practice now. The reason is that there has been an increasing emphasis on CAM education in medical and nursing schools. For the last few years, there has been a consortium of approximately 12 medical schools whose charge is enhancement of CAM into the medical school curricula. Training programs, many supported by the National Center of Complementary and Alternative Medicine, are training medical, nursing and pharmacy students, medical residents, and nurse practitioners to specialize in CAM. The University of Arizona, Harvard, University of Minnesota, University of Virginia, Duke University, University of California San Francisco, and Rush University in Chicago are among those universities committed to professional education on integrative therapies.

The good news is that there is much happening around the country on integrative therapies with regard to policy, research, practice, and education of new doctors and nurses; but it's still in the very early stages. It seems we have moved beyond the infant stage to the toddler stage. So instead of crawling in circles, we are now standing and beginning to walk with purpose and direction.

The not-so-good news, though, is that there are many physicians and nurses who are currently taking care of patients or are in positions of power as administrators, and they don't have an appreciation of the value or importance to learn about integrative therapies. Since CAM therapies and the philosophical underpinnings of these therapies were not taught to the established health care professionals in their own training programs, they lack the knowledge and feel that they can't be bothered with learning about it now. In general, they are skeptical and closed-minded. Here's a Chinese parable to illustrate this point:

In China, a long, long time ago, the states were governed by two leaders, a Civil Head and a military head, or the General. One time when there was tension and competition between the civil and military servants, the Civil Head invited the General over for tea to smooth things out. The General was a bit reluctant to go over for tea, but he went anyway. While the General was sipping tea, he left abruptly. The Civil Head was puzzled. Some time went by and the Civil Head heard through his civil servants that the rumors on the street were saying that the General was sick and the Civil Head had tried to kill the General by putting a poisonous snake in his tea. Still perplexed, since he knew he had no evil intentions, the Civil Head went back to his quarters to try to understand the rumors. After recreating the encounter in the room with the tea and tea cups, he figured out that an ornamental bow on the wall reflected off the wall at just the right angle to appear like a snake in the tea cup. The Civil Head proceeded to pay a visit to the General and explain his evidence of the bow on the wall. The General immediately felt better, and the two saw eye to eye.

Translation of the Chinese idiom for this parable literally means "Seeing things that aren't there." In essence, if you approach circumstances or people with suspicion, you will see things that aren't there. You won't see things in their true light. The key is to open their minds, provide the evidence, and break the suspicion. Health care professionals trained within the conventional medical model need to have an open mind and a spirit of inquiry about integrative therapies. If they approach it with suspicion, they will see the snake: the faults rather than the potential benefits. All CAM therapies are not good or bad, nor are all conventional therapies either good or bad. They both have their strengths and limitations. Both must be explored and researched with parity, fairly and held to the same standards.

There's another Chinese saying that I have heard said by my husband and also Dr. David Eisenberg. The translation is: True gold withstands the hottest fires. Those therapies, both conventional and unconventional, that are not beneficial will melt, while those that are efficacious will remain solid and will shine.

Oncology physicians and nurses have a professional responsibility: to be informed of the different kinds of conventional and integrative therapies; to dialogue about these therapies with their patients; to identify resources and make appropriate referrals accordingly; and to treat each person as a whole person and with dignity.

In the words of Sir William Osler, an esteemed Canadian physician and Professor of Medicine at Oxford at the turn of the 20th century:
It is more important to know what sort of patient has the disease than, what sort of disease the patient has.

Remember that compassion, respect, knowledge, and thinking out of the box are cornerstones to fine health care. We need not expect anything less.

Photographs

Dr. Susan Bauer-Wu (Dana-Farber), Helen Moss, and Dr. Michael Weiss (board member)

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Dr. Nathan Berger (board member)

Susan Bauer-Wu and Helen Moss