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‘Complementary’ or ‘alternative’? It makes a difference in cancer care
' C o m p l e m e n t a r y ' or 'alternative'? It makes a difference in cancer care B. R. Cassileth
Barrie Cassileth trained as a psychologist and medical sociologist. She was a founding member of the Advisory Council to the USA National Institutes of Health Office of Alternative Medicine, and is a member of the complementary and alternative medicine committee of the American Cancer Society. She has adjunct affiliations in medicine at the University of North Carolina, Duke University, and Harvard University, and is author of The Alternative Medicine Handbook: The Complete Reference Guide to Alternative and Complementary Therapies. ComplementaryTherapiesin Medicine takes the view that systematic research is not the only way to deepen our understanding of health care.As such, we positively encourage the submission of papers that aim to express personal opinions or which describe personal experiences.
Barrie R. Cassileth PO Box 222, 20 Holsberry Road,Truro, MA 02666, USA
There is an urgent need for clarity in the language of health care, particularly given the growth in popularity of what is now termed ' C A M ' , or complementary and alternative medicine. The meaning of those words, and of what they do and do not encompass, differs from continent to continent and, indeed, often from physician to physician and across patients. Clear definitions of these terms, and more care in their use are very much needed, especially in cancer medicine. It is inappropriate to combine truly 'complementary' therapies with those that are promoted as 'alternative' to mainstream care. In cancer care, the former are typically pleasant, nontoxic, and beneficial to cancer patients' quality of life. The latter, conversely, tend to be physiologically active, potentially harmful and in conflict with mainstream care. At best, they are wasteful of patients' time and resources. Varied interpretations of ' C A M ' and of what the acronym includes cause confusion as well as a tendency for some scientists to reject all techniques associated with the term. As a result, cancer patients may be deprived of therapies that could benefit their well-being and improve their quality of life. In the late 1970s, I worked in research and development at a cancer care center in a large USA hospital. At that time, cancer care in the USA included chemotherapy, surgery, radiation therapy and clinical trials of new agents. Very few support services for patients and caregivers were available. Those services that were available were not easily
ComplementaryTherapiesin Medicine(1999), 7, 35-37 © 1999Harcourt Brace& Co. Ltd
accessible to cancer patients. For example, there was no official relationship between our cancer centre and the hospital's chaplains and social workers. Staff from the hospital's pain clinic and department of psychiatry rarely worked with cancer centre patients. Recognizing the needs of our patients and their families, the centre negotiated hard with hospital administrative staff to develop homecare and hospice programmes, and obtain our own speciality nurses and social workers. We established liaisons with pastoral and psychiatric services, in-patient and home-based palliative care, support groups for families, patients and staff, a large volunteer activity. An acupuncturist joined the pain clinic to help cancer patients and others. This was all but unheard of at the time. We also initiated a major research programme in psychosocial aspects of cancer care, and studied the effects and effectiveness of the newly established programmes. I remember the difficulty of selecting a name for this collection of activities: for what became a large complex of programmes. These services were all adjunctive. That is, they were not aimed at curing or even treating the disease of cancer per se. Instead, they dealt with symptom control, coping, rehabifitation, and the management of stress, pain, nutrition, loneliness, emotional and spiritual needs, and other aspects of quality of life. They addressed families' as well as patients' needs. We tried 'Human Resources' but found the title was already in use by 35
36
ComplementaryTherapies in Medicine
the personnel department. We finally settled on 'Psychosocial Programs', even though we targeted so much more than emotional and social issues. Today, I would call this complex of programmes 'Complementary therapies'. In the early 1980s it became obvious that some of our patients were trying treatments that were, by contrast, 'alternative;' that were promoted for use as literal alternatives to mainstream care. These treatments were promoted as cancer cures, not adjunctive therapies. They included unresearched products and methods such as diet cancer 'cures', Immuno-augmentative therapy and the LivingstonWheeler treatment, as well as products already proved useless or harmful, such as Laetrile, highdose vitamin C, and detoxification (metabolic) therapies. Some patients were paying for intensive and expensive courses of treatment in cancer clinics in Mexico, the Bahamas, and elsewhere outside of the USA. This realization along with a strong interest to learn more about the phenomenon led to our bidding for and winning a research grant from the USA National Institutes of Health. The grant enabled a national survey of 1000 cancer patients, recruited from our centre and from alternative cancer clinics around the USA. This study helped bring to light the range of unproved cancer treatments in use, the characteristics of patients drawn to them, and the practitioners who dispensed these therapies. At the time, the provision of such techniques typically was a secret and underground activity in the USA. Simply locating alternative clinics for our survey took 2 years of intense detective work. The existence of alternative techniques was well known to the American Cancer Society (ACS), a voluntary organization that promotes and funds cancer research and educates the public about cancer. The ACS maintained for public review what many called a cancer treatment 'blacklist'. ACS reviews of each cancer 'cure' covered claims made for the therapy and reports of adverse events related to its use. The reviews typically concluded with statements urging cancer patients to avoid the unproved methods and to continue care with their oncologists. Almost 20 years later, what has changed for the better? Fresh claims for alternative cancer 'cures' are even more commonplace. Products that claim to cure cancer and practitioners who describe themselves as alternative now appear very much above ground. They promote their regimens in alternative medicine publications and elsewhere. As far as is known, however, only a small fraction of patients with serious illnesses like cancer refuse mainstream care in favour of alternatives. The great majority of CAM users in the USA buy herbal products for minor ailments such as headaches and colds, visit chiropractors for back problems, and try 'dietary supplements,' as they are termed, to relieve depression, sleep problems, and the like. Hundreds of such products are readily available to the public without
prescription, and massage therapists, herbalists, reflexologists, and other practitioners abound. Adjunctive, supportive therapies are more available to cancer patients today than ever before. Most mainstream physicians and virtually all oncologists remain dismissive about unproved regimens promoted as cancer 'cures.' Other techniques, such as homoeopathy and therapeutic touch, are dismissed because they appear inconsistent with known scientific principles. Good quality information about treatments is scarce and misinformation abounds. All of this is not helped by our sloppy use of terminology: the loose application of the umbrella term 'CAM' to everything that is, or once might have been, outside of mainstream medicine. This term covers too many, disparate types of intervention. There is an urgent need to distinguish between the different approaches used in cancer care in several ways. Instead of uncritically accepting or rejecting ' C A M ' , we need to talk in terms of: •
U n p r o v e d o r d i s p r o v e d i n t e r v e n t i o n s versus those that are well r e s e a r c h e d . Good research,
for example, has supported for decades the quality of life benefits of many relaxation techniques. In addition, data support the use of acupuncture for some types of pain, mint and other teas for indigestion, and ginger for nausea, although research documenting the effectiveness of ginger against chemotherapy-induced nausea is yet to come. More good randomized controlled trials are required to investigate complementary therapies in cancer patients. Alternative cancer therapies occasionally are studied, as was the case recently with the nowdiscredited Di Bella cancer 'cure' in Italy and the now-supported PC-SPES herbal compound for prostate cancer. •
N e w i n t e r v e n t i o n s a n d those l o n g in m a i n s t r e a m use. Individual and group therapy, as
well as other psychosocial approaches, have a history of use in cancer care in the USA. Reach to Recovery and group support programmes, for example, began about half a century ago. Much is known about the successful implementation of these interventions. These and other broadly accepted adjunctive therapies are not 'CAM.' Although components of traditional Chinese and Ayurvedic medicine, such as acupuncture and herbs may be investigated, it is not likely that these and other ancient approaches will be evaluated in their complex entireties in the near future. It is important, however, to appreciate the role that these quasi-religious or quasi-spiritual therapies play for some individuals today. •
Patients' decisions to use alternatives instead o f m a i n s t r e a m treatment, versus u s e of interventions that address s y m p t o m s . Here, we
need to distinguish between the early-stage cancer patient who strives for cure with
'Complementary' or 'alternative'
high-dose vitamins, a radical change in diet or treatment at a Mexican clinic, and those who use complementary regimens to help with the pains and stresses of cancer, treatment, and rehabilitation. A vast array of approaches are contained under the 'CAM' rubric. This merging of varied approaches into one category promotes misunderstanding. In mainstream medicine, particularly in specialty areas such as oncology, terming an accepted complementary therapy 'alternative' may well destroy its value and assign it to an unacceptable category. Patients and healthcare professionals
37
need precise information about cancer choices. We must differentiate between a product or regimen sold as a disease cure and one meant to enhance quality of life. Research concerning the prevalence of CAM use should insure useful and meaningful survey results by providing or requesting specific definitions and information about how a therapy is used (in lieu of chemotherapy to cure disease? to complement mainstream care?). In the meantime, more careful, specific use of the terms 'alternative,' 'complementary' and 'CAM' will assist understanding as well as progress in research and patient care.
Barrie Cassileth trained as a psychologist and medical sociologist. She was a founding member of the Advisory Council to the USA National Institutes of Health Office of Alternative Medicine, and is a member of the complementary and alternative medicine committee of the American Cancer Society. She has adjunct affiliations in medicine at the University of North Carolina, Duke University, and Harvard University, and is author of The Alternative Medicine Handbook: The Complete Reference Guide to Alternative and Complementary Therapies. ComplementaryTherapiesin Medicine takes the view that systematic research is not the only way to deepen our understanding of health care.As such, we positively encourage the submission of papers that aim to express personal opinions or which describe personal experiences.
Barrie R. Cassileth PO Box 222, 20 Holsberry Road,Truro, MA 02666, USA
There is an urgent need for clarity in the language of health care, particularly given the growth in popularity of what is now termed ' C A M ' , or complementary and alternative medicine. The meaning of those words, and of what they do and do not encompass, differs from continent to continent and, indeed, often from physician to physician and across patients. Clear definitions of these terms, and more care in their use are very much needed, especially in cancer medicine. It is inappropriate to combine truly 'complementary' therapies with those that are promoted as 'alternative' to mainstream care. In cancer care, the former are typically pleasant, nontoxic, and beneficial to cancer patients' quality of life. The latter, conversely, tend to be physiologically active, potentially harmful and in conflict with mainstream care. At best, they are wasteful of patients' time and resources. Varied interpretations of ' C A M ' and of what the acronym includes cause confusion as well as a tendency for some scientists to reject all techniques associated with the term. As a result, cancer patients may be deprived of therapies that could benefit their well-being and improve their quality of life. In the late 1970s, I worked in research and development at a cancer care center in a large USA hospital. At that time, cancer care in the USA included chemotherapy, surgery, radiation therapy and clinical trials of new agents. Very few support services for patients and caregivers were available. Those services that were available were not easily
ComplementaryTherapiesin Medicine(1999), 7, 35-37 © 1999Harcourt Brace& Co. Ltd
accessible to cancer patients. For example, there was no official relationship between our cancer centre and the hospital's chaplains and social workers. Staff from the hospital's pain clinic and department of psychiatry rarely worked with cancer centre patients. Recognizing the needs of our patients and their families, the centre negotiated hard with hospital administrative staff to develop homecare and hospice programmes, and obtain our own speciality nurses and social workers. We established liaisons with pastoral and psychiatric services, in-patient and home-based palliative care, support groups for families, patients and staff, a large volunteer activity. An acupuncturist joined the pain clinic to help cancer patients and others. This was all but unheard of at the time. We also initiated a major research programme in psychosocial aspects of cancer care, and studied the effects and effectiveness of the newly established programmes. I remember the difficulty of selecting a name for this collection of activities: for what became a large complex of programmes. These services were all adjunctive. That is, they were not aimed at curing or even treating the disease of cancer per se. Instead, they dealt with symptom control, coping, rehabifitation, and the management of stress, pain, nutrition, loneliness, emotional and spiritual needs, and other aspects of quality of life. They addressed families' as well as patients' needs. We tried 'Human Resources' but found the title was already in use by 35
36
ComplementaryTherapies in Medicine
the personnel department. We finally settled on 'Psychosocial Programs', even though we targeted so much more than emotional and social issues. Today, I would call this complex of programmes 'Complementary therapies'. In the early 1980s it became obvious that some of our patients were trying treatments that were, by contrast, 'alternative;' that were promoted for use as literal alternatives to mainstream care. These treatments were promoted as cancer cures, not adjunctive therapies. They included unresearched products and methods such as diet cancer 'cures', Immuno-augmentative therapy and the LivingstonWheeler treatment, as well as products already proved useless or harmful, such as Laetrile, highdose vitamin C, and detoxification (metabolic) therapies. Some patients were paying for intensive and expensive courses of treatment in cancer clinics in Mexico, the Bahamas, and elsewhere outside of the USA. This realization along with a strong interest to learn more about the phenomenon led to our bidding for and winning a research grant from the USA National Institutes of Health. The grant enabled a national survey of 1000 cancer patients, recruited from our centre and from alternative cancer clinics around the USA. This study helped bring to light the range of unproved cancer treatments in use, the characteristics of patients drawn to them, and the practitioners who dispensed these therapies. At the time, the provision of such techniques typically was a secret and underground activity in the USA. Simply locating alternative clinics for our survey took 2 years of intense detective work. The existence of alternative techniques was well known to the American Cancer Society (ACS), a voluntary organization that promotes and funds cancer research and educates the public about cancer. The ACS maintained for public review what many called a cancer treatment 'blacklist'. ACS reviews of each cancer 'cure' covered claims made for the therapy and reports of adverse events related to its use. The reviews typically concluded with statements urging cancer patients to avoid the unproved methods and to continue care with their oncologists. Almost 20 years later, what has changed for the better? Fresh claims for alternative cancer 'cures' are even more commonplace. Products that claim to cure cancer and practitioners who describe themselves as alternative now appear very much above ground. They promote their regimens in alternative medicine publications and elsewhere. As far as is known, however, only a small fraction of patients with serious illnesses like cancer refuse mainstream care in favour of alternatives. The great majority of CAM users in the USA buy herbal products for minor ailments such as headaches and colds, visit chiropractors for back problems, and try 'dietary supplements,' as they are termed, to relieve depression, sleep problems, and the like. Hundreds of such products are readily available to the public without
prescription, and massage therapists, herbalists, reflexologists, and other practitioners abound. Adjunctive, supportive therapies are more available to cancer patients today than ever before. Most mainstream physicians and virtually all oncologists remain dismissive about unproved regimens promoted as cancer 'cures.' Other techniques, such as homoeopathy and therapeutic touch, are dismissed because they appear inconsistent with known scientific principles. Good quality information about treatments is scarce and misinformation abounds. All of this is not helped by our sloppy use of terminology: the loose application of the umbrella term 'CAM' to everything that is, or once might have been, outside of mainstream medicine. This term covers too many, disparate types of intervention. There is an urgent need to distinguish between the different approaches used in cancer care in several ways. Instead of uncritically accepting or rejecting ' C A M ' , we need to talk in terms of: •
U n p r o v e d o r d i s p r o v e d i n t e r v e n t i o n s versus those that are well r e s e a r c h e d . Good research,
for example, has supported for decades the quality of life benefits of many relaxation techniques. In addition, data support the use of acupuncture for some types of pain, mint and other teas for indigestion, and ginger for nausea, although research documenting the effectiveness of ginger against chemotherapy-induced nausea is yet to come. More good randomized controlled trials are required to investigate complementary therapies in cancer patients. Alternative cancer therapies occasionally are studied, as was the case recently with the nowdiscredited Di Bella cancer 'cure' in Italy and the now-supported PC-SPES herbal compound for prostate cancer. •
N e w i n t e r v e n t i o n s a n d those l o n g in m a i n s t r e a m use. Individual and group therapy, as
well as other psychosocial approaches, have a history of use in cancer care in the USA. Reach to Recovery and group support programmes, for example, began about half a century ago. Much is known about the successful implementation of these interventions. These and other broadly accepted adjunctive therapies are not 'CAM.' Although components of traditional Chinese and Ayurvedic medicine, such as acupuncture and herbs may be investigated, it is not likely that these and other ancient approaches will be evaluated in their complex entireties in the near future. It is important, however, to appreciate the role that these quasi-religious or quasi-spiritual therapies play for some individuals today. •
Patients' decisions to use alternatives instead o f m a i n s t r e a m treatment, versus u s e of interventions that address s y m p t o m s . Here, we
need to distinguish between the early-stage cancer patient who strives for cure with
'Complementary' or 'alternative'
high-dose vitamins, a radical change in diet or treatment at a Mexican clinic, and those who use complementary regimens to help with the pains and stresses of cancer, treatment, and rehabilitation. A vast array of approaches are contained under the 'CAM' rubric. This merging of varied approaches into one category promotes misunderstanding. In mainstream medicine, particularly in specialty areas such as oncology, terming an accepted complementary therapy 'alternative' may well destroy its value and assign it to an unacceptable category. Patients and healthcare professionals
37
need precise information about cancer choices. We must differentiate between a product or regimen sold as a disease cure and one meant to enhance quality of life. Research concerning the prevalence of CAM use should insure useful and meaningful survey results by providing or requesting specific definitions and information about how a therapy is used (in lieu of chemotherapy to cure disease? to complement mainstream care?). In the meantime, more careful, specific use of the terms 'alternative,' 'complementary' and 'CAM' will assist understanding as well as progress in research and patient care.