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Progress Since the Strategy Session
Keynote Address: A Call to Action
John C. Duffy, Assistant Surgeon General of the United States
The View from the Public Health Service
Theodore M. Pinkert, Interagency Committee on Pain and Analgesia
The Opportunity for Progress
David P. Friedman, National Institute on Drug Abuse
Report on the 55th National Institutes of Health Consensus Conference: Pain Management
Laurel Archer Copp, University of North Carolina School of Nursing
The National Cancer Institute Effort
Carrie Hunter, National Cancer Institute
A Global View
Jan Stjernswärd, World Health Organization
Problems of Cancer Pain Management in India
S. C. Shah, Indian Society for Study of Pain
The Perspective from Mexico
Juan Romero Romo, National Cancer Institute of Mexico
The Cancer Pain Patient
Kathleen M. Foley, Memorial Sloan-Kettering Cancer Center
The Wisconsin Cancer Pain Initiative is a voluntary effort by many individuals representing clinical, educational, and professional organizations and government. Composed of health professionals from many disciplines, the Wisconsin Initiative is implementing a comprehensive set of proposals developed at a strategy session hosted by the Johnson Foundation at the Wingspread Conference Center in Racine, Wisconsin in December 1986. This report describes the development of the Initiative and the subsequent progress in mobilizing health professionals and the public to make treatment of cancer pain a priority in Wisconsin. A special section presents the speeches given at the Strategy Session which provided a moving call to action.
After a review of the literature and consultation with cancer pain experts and oncologists, the Board determined that effective drugs for cancer pain were already available,3-5 but they were not being used appropriately. The Board concluded that the availability of heroin would not improve the management of cancer pain 6,7 and decided to couple its opposition to the heroin bill with a positive action: to work to develop a comprehensive program to reduce cancer pain in the State of Wisconsin.
Informal Steering Committee: The Board's next step was to convene an Informal Steering Committee. The initial Committee comprised Madison area health professionals representing medicine, nursing, pharmacy, social work, pain research, hospice, medical education, and the American Cancer Society.
Although the under treatment of cancer pain was well documented in the medical literature, not everyone at the first meeting of the Informal Steering Committee agreed that the problem warranted special attention. Consequently, a special effort was made to present evidence, especially the results of survey research, which showed that a large proportion of Wisconsin residents with cancer experienced significant levels of pain during the course of their illness.8
Preliminary Proposal. An important step in the process was the development of a proposal to focus the Committee's attention on key issues and formulate a plan of action. After extensive review and careful consideration, the Committee concluded the following:
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Factors that Contribute to the Cancer Pain Problem* Health Professionals
Patients and Family Members
The Health Care System
* A listing of the original literature references from which these factors were abstracted is available on request. We are grateful to Amy Bachmann, pharmacist and Controlled Substances Board Staffing Assistant for conducting the extensive literature review. |
Broadening the Effort. Considerable time and attention were devoted to understanding the system of care already in place for cancer patients in the state. Cancer patients are treated by physicians, nurses, pharmacists and others in many different settings including major cancer centers, community hospitals, nursing homes, hospice facilities, medical clinics and patients' homes. The Initiative staff met with practitioners from all these settings.
Special attention was given to involving the nursing profession in the planning process. Nurses are most directly involved in the care of patients, yet in the traditional medical hierarchy may be excluded from the clinical decision making process. A conference sponsored by the National Institutes of Health in 1986 emphasized the special role of the nurse, and concluded that "many opportunities exist for nurses to enhance the effectiveness of care delivery to individuals with pain." Representatives of care facilities, nursing organizations, and the schools of nursing in Wisconsin were brought together at a special meeting to discuss the role of the nursing profession in the response to the cancer pain problem. This meeting set in motion activities in nursing research, education and clinical care. It also reinforced the determination of the Wisconsin Initiative to use an interdisciplinary approach in programs to improve cancer pain management.
After the plenary session, participants divided into nine work groups, many of which were interdisciplinary. They were:
In these work groups participants discussed specific obstacles to cancer pain management and developed recommendations for solutions. Participants met again in plenary session the following morning to discuss and refine the proposals that had been developed by the work groups.
Finally, cancer pain was the featured topic for a series of public lectures offered during the month of October by the University of Wisconsin Clinical Science Center and has been the focus of discussion at various service club meetings in the state.
Medical school curricula at the University of Wisconsin and at the Medical College of Wisconsin have been reviewed. Elective courses on cancer pain management for fourth year students are being developed. The University of Wisconsin School of Pharmacy has added problem-solving sessions on pain management in a required clerkship course. One of the school's faculty members has also developed a computer-simulated cancer pain case for use in the teaching program. Finally, nursing school curricula and inservice education needs are being surveyed, and a state-wide nursing education conference is planned for 1988.
Surveys have been conducted or are in progress to determine the attitudes and knowledge of medical and pharmacy students and medical residents and fellows. The information will be used to revise existing curricula and residency training programs.
Finally, a variety of professional meetings held at numerous locations throughout the state have included presentations on cancer pain assessment and treatment.
A survey of Wisconsin pharmacists revealed that narcotics are generally available in Wisconsin pharmacies. This contrasts with the results of a New York City survey.9 Lack of prescriptions and fear of robbery are cited by Wisconsin pharmacists as the two most important reasons for limiting the amount and type of narcotic analgesics in stock.
2. Angell M. Should heroin be legalized for the treatment of pain? N Eng J Med 1984; 311:529-30.
3. Foley KM. The treatment of cancer pain. N Eng J Med 1985; 313:8-95.
4. Portenoy RK. Management of pain in patients with advanced cancer. Medical Times 1987; 115:4-53.
5. A short course on the management of cancer pain. J Pain Sympt Manag (Suppl) 1987;2:S3-28.
6. Kaiko RF, Wallenstein SL, Rogers AG, Grabinski PY, Houde RW. Analgesic and mood effects of heroin and morphine in cancer patients with postoperative pain. N Eng J Med 1981; 304:1501-5.
7. Inturrisi CE, Max MB, Foley KM, Schultz M, Skin S-V and Houde RW. The pharmacokinetics of heroin in patients with chronic pain. N Eng J Med 1984; 310:1213-7.
8. Daut RL, Cleeland CS. The prevalence and severity of pain in cancer. Cancer 1982; 50:1913-8.
9. Kanner RM, Portenoy RK. Unavailability of narcotic analgesics for ambulatory cancer patients in New York City. J Pain Sympt Manag 1986; 1:15-7.
Surgeon General Koop is very much committed to the goals of this Initiative. He too is concerned that there is a great deal of unnecessary pain and suffering, particularly in cancer. His desire is to make this single issue visible at the national and international levels.
It is always dangerous to single out individuals, but in this case it would be quite appropriate to recognize the efforts of the Wisconsin Controlled Substances Board and its chair, Dr. June Dahl. You have also heard of David Joranson's commitment to this project. Other professional organizations in the United States and elsewhere are also taking the problem of cancer pain seriously and incorporating it into their agendas at national meetings. I recently attended the first international conference on continuing medical education; we discussed the fact that continuing medical education has not been successful in changing professional attitudes about pain management.
This meeting at Wingspread is different. Why? Because the problem is not being discussed as something that ought to be looked into. The World Health Organization is beyond that, the Public Health Service is beyond that, and enlightened professional leadership in the State of Wisconsin is well beyond that. This meeting is the first in which the deeply distressing problem of cancer pain is being confronted not only as something to be understood, but as something to be managed and controlled.
I hope to convince you of the commitment to dealing with cancer pain that we have not only in the Office of the Surgeon General, but in the federal government as well. There are things we don't fully understand yet, and we need further research in many of these areas. But as the philosopher Immanuel Kant advised his colleagues two centuries ago, "If we know what should be done and we know enough to do it, then that is the thing we should do."
Call to Action. So it is then, for us, the moral imperative to act. We know we must do something to mitigate pain endured by cancer patients. We actually know how to do it. We might be imperfect in that effort, but we know enough to have, at the very least, a mitigating effect. Therefore, we are morally, and I emphasize this point, morally bound to do just that. Arriving at this junction of logic, however, is not a conclusion. It is the initiation. For us, for you now, the real work begins.
As the list of involved parties to this conference amply illustrates, no single profession or interest group can effectively do the job alone. I think it is clear and unmistakable that we are engaged in a collaborative action. That is what we have here in Wisconsin where there is active participation of all the key forces in public health: medicine, nursing, pharmacy, hospital, hospice, clinic administration, government, and higher education. No one of these has all the answers to the question, nor does any one group have a particular corner on that rather wonderful and beautiful feeling that we call compassion. But all of them working collaboratively together can make a difference.
The Challenge of Cancer Pain. When pain strikes, it is a leveler and an equalizer among us. It arouses the most fundamental of human responses of fear and anguish by those who experience it directly, and it arouses responses of sympathy and compassion among those who observe pain at work. So the partnership evident at this conference is especially appropriate.
For some of us, the challenge of cancer pain is especially troubling. I speak of those of us in medicine who have been trained that success is to cure, to win our battles against disease and disability. Pain, in many respects, is the antithesis of victory. Pain in medicine is a failure, and a patient in pain is a rebuke. It is a rebuke to the system, to the physician's ability, and to the nurses who are responsible for the day-to-day care. We respond to rebuke and failure with very defensive psychological mechanisms.
It shouldn't be too surprising that most physicians know very little about pain. Pain is generally not taught in medical schools; it is relegated to a minor concern for junior house officers. Pain is seen by house staff as a burden, one that frustrates them enormously. This attitude is pervasive in spite of many efforts over the years to convince health professionals that pain is a legitimate and functional challenge in health care. It is not a subject that we like to teach optimistic and enthusiastic medical students. The average physician does not listen to the patient, which is a critical niistake. Why don't they listen to patients? Because health professionals believe that patients are not informed, and patients sometimes threaten young doctors.
So we have a system in place with health care providers who often relegate pain to a circumstance of annoyance, irritation and defensiveness. Thus, pain is almost universally badly managed.
We need to keep in mind the extremely uneven level of knowledge about this subject among practicing physicians and other health professionals. This is a problem not only in the United States; it is a problem worldwide. The uneven level of knowledge not only pertains to pain in the cancer patient but also to medicine's response to pain. What to do, in terms of treatment and drugs, and how to do it are the issues.
The Problem of Drug Availability. Central to these questions is drug availability. Throughout the world, availability of effective drugs and technologies is not an even phenomenon. There are many parts of the world, for example, where morphine cannot be prescribed or given to a patient, and other places where morphine is simply not available.
Many drugs are available in the United States, of course, and they can be assessed on the basis of their strength. You will hear about the analgesic ladder, which is an imaginative way to portray an approach to analgesic management. It is the aspirin, codeine and morphine ladder. There are lots of other substances available as well: the anti-inflammatories, the synthetic opioids, and increasingly more powerful adjuvants.
I don't want to give the impression that I think this issue could be resolved if only drug usage was escalated for cancer patients in pain. Would that it were that simple, but it is not. As I indicated, physicians are not that familiar with the different kinds of drugs for pain, and, therefore, reasonably enough, they prefer not to prescribe them. This is conservative, defensive medicine, and it is probably the most common among attending physicians and house staff.
The Human Dimension. What is unique about what you are going to do here in the next few days is that you are going to talk about patients and families and their rights. Many families, whose consent and understanding are essential throughout the course of terminal cancer, are uninformed and frightened. Thus, they join the health provider in being conservative and defensive about pain-killing drugs for their loved ones.
These families have real and human sorts of questions. Those of you who have dealt with cancer patients and their families have heard these questions hundreds of times. Will the drugs change the personality of a loved one? Will his or her final days be spent as a different person-a strange, confused, disoriented individual with no recollection or resemblance to the person that they love? Is that how he or she is going to be remembered? Will the drugs be welcomed by the patient? Is the pain really so great that he or she will prefer having the drugs? Is experiencing less pain, but having less control over thought processes and behavior, really the best thing for the person they love? And finally, will the strongest drugs, the narcotics, turn this person who has been so dear, into some sort of addictive monster, a junkie, a victim no longer of cancer pain, but of drugs and even more sinister, the drug conspiracy? Well, those are the wrenching questions that face family members who may also be adjusting to a final vigil over the ebbing life of someone who has grown so dear to them.
Some questions, such as the one concerning addiction, are virtually irrelevant for most patients. If a powerful, addicting drug is indicated for a patient suffering from the profound pain of an advanced primary bone tumor, for example, we are talking about helping a patient who is not going to live long enough to develop what some describe as an "insatiable million dollar habit". As all of you know, this is pure nonsense. Science and research have shown that addiction simply is not and never has been a problem for the terminal cancer patient.
Patients do have great defensiveness and concern about the administration of these drugs. Patients feel not only that drugs pose a terrible risk, but that these drugs might even be a signal that death is almost assuredly on the way. They wonder why they are receiving the stronger drug if there is hope of recovery.
They must, therefore, assume that all hope is gone and that they are being made comfortable during their last hours alive on earth.
A strong natural response is to refuse the drugs and thereby hold off the certainty of death. When patients do demonstrate these and other forms of denial, their attending health workers and family members usually don't know how to respond. Sadly, they and too many health professionals tend to turn away from these patients. Unwilling and unable to confront their needs and their concerns, the health workers and families choose to ignore it.
As you know, we can never lose sight of one very important issue, which is the subjective quality of pain. This has been the most challenging and difficult aspect of pain. Physicians, and often many other health professionals, simply are not willing to set up a close, intimate, personal relationship with the patient. That, though, is the sine qua non of a successful pain management program. Until health professionals are willing to engage themselves in a humane, compassionate, and personal involvement with those patients for whom they assume the responsibility of care, I can assure you the greatest pain drugs and technologies in the world will fail. If you exclude the human dimension, this is a wasted endeavor.
Cancer Pain: A Complex Issue. Let me share with you the interdependent levels of complexity present in this cancer pain issue which you will address at this meeting. We have the human level, in which we operate as simple human beings. You and I and our patients. None of us wants to be hurt, nor wants to see people we love undergo intolerable suffering. Yet we are burdened and confused by attitudes and concepts we have absorbed from childhood. Then there is the professional level where physicians, nurses, pharmacists and others are functioning, unfortunately with less than complete information. They are concerned about a possible conflict between the moral imperative to do something and a professional ethic they feel advises them to use great caution. Finally, there are the scientific and technological levels where data regarding the usage of all types of analgesics as well as the development of alternative non-drug technologies are being generated on a daily basis.
Now these three are not levels of interest that exist in isolation, but are interwoven and will always remain that way. Despite every wish we might have to disentangle one from the other and deal with them separately, we simply cannot. We are human, we are health professionals, we are scientists and we cannot sacrifice any one of these aspects of our world, for simplicity, ease or comfort. So, in this conference, while reflecting the total collaborative interdisciplinary approach to the issue, we must capture the interest, the imagination and the good will of every person who recognizes the significance of the issue.
The Dinosaurs Are Roaming. I feel sometimes, particularly as a professional having spent most of my life teaching medical students and residents, that the subject of cancer pain is as intractable as the pain itself. It is easy to become discouraged. Issues like these are like dinosaurs from my past that I have heard during my more than 25 years of health care practice and teaching. I can assure you that the dinosaurs are still roaming the fields and still as powerful as ever.
The horror for those of us who indeed care and are concerned is that we know, as we sit here this morning, that hundreds of cancer patients suffer the agonizing pain of their cancer every day. Thousands more around the United States and millions around the world are also suffering.
So we must remain morally impelled to approach our task with compassion and high purpose. Perhaps what will happen here in these two days, to take a phrase that captured my imagination, is that you will develop a "fire in your belly." You are going to have to learn to do what you want to do. You are going to meet resistance. You are looking at 20 to 30 years of attitudes that will not change, in fact that have not changed one bit.
Fire in the Belly. But the extraordinary thing about the human condition is that if you do care, if you do have a "fire in your belly," you will make a difference. Let's talk about the Wisconsin Initiative. You have many organizations in your state to work with, and they indeed will respond. The citizens of your state who live with this terrible problem will benefit. One of the exciting things is that you cannot keep a good secret. The world will know about Wisconsin. Indeed, and why not? Why shouldn't it come from the heartland of America? Why not from a semi-rural family sort of state? You have a great opportunity here, and in some respects the world is looking at what you will do.
Your imperative, of course, will be to assure that we do not fail in this endeavor. You have started the Initiative and simply have no other choice but to carry it forward. Each person invited here is affirming life. You are affirming it even in the midst of death. More than that, we are affirming that as long as it may last, each and every life should be of a quality that is ennobled despite the ravages of an unfair and lethal disease.
Cancer denies life, and the pain of cancer denies the quality for whatever life may remain. We know that can happen, but we also know that it need not be the case for every patient for the entire course of his or her disease. We cannot yet be victorious over every case of cancer, but isn't it hopeful and isn't it exciting to realize that we can conquer much if not all of the pain of that dread disease?
I will just leave you with one comment. Earlier I referred to the philosopher Immanuel Kant and his instruction to "do what is right if we know enough about what to do." Ladies and gentlemen, we certainly do, and we should.
In my first medical school pharmacology course back in the early 1960s, only one lecture out of an entire year's course in pharmacology dealt with opiate drugs. We were taught in that lecture that codeine was a good antitussive drug for cough control, that morphine was an effective drug in reducing pulmonary edema in someone with heart failure, and that, by the way, be cautious when using this class of drugs for the treatment of pain because "you can make addicts out of people."
I trust that pharmacology courses have improved substantially since then, but it is obvious that vestiges of earlier attitudes persist. We must dedicate ourselves to changing those attitudes. We must create a climate in which people who suffer pain due to cancer, their families and the professionals who treat them, would no more accept the idea of permitting such patients to remain in pain than any person in this room would accept having a tooth drilled without at least the offer of some form of analgesia from their dentist. We must change the level of public acceptance of pain management and treatment as serious subjects of medical concern, thereby changing public and professional attitudes.
We have learned several things during the first year and a half in the life of the Interagency Committee on Pain and Analgesia. First, we have learned that it only requires a nucleus of a few hard-working people to make progress in this area. Second, it does not require tremendous sums of money or an army of people to get things rolling. Third, it is not superstructures or infrastructures that actually accomplish goals, but dedicated people. We also learned that we were not alone in our concern about the quality and availability of treatment for severe pain due to cancer. When we spoke with people from every walk of life about the issue of improved pain management, we were impressed with their desire to contribute their ideas, their time, and their contacts with others. We found, as you have here with the Wisconsin Initiative, that when you reach out to people for help in an important effort like this, they will come forward.
The Wisconsin Initiative for Improving Cancer Pain Management is a unique opportunity. There has never been a state-wide program like this which has as its focus the changing of old attitudes and behaviors that have prevented patients in severe pain from receiving the optimal relief to which they are entitled.
Without question, we know a good deal about treating cancer pain. Our major failure has not been in generating the information needed to treat cancer pain, but rather, in implementing, on a wide scale, what we already know. This is not to say, however, that there is not much we don't know about treating cancer pain. In an effort to make the research community aware of areas that have been overlooked or not sufficiently emphasized, the Interagency Committee on Pain and Analgesia of the United States Public Health Service has prepared a program announcement calling for new research on pain and analgesia.
For example, it may surprise you to hear that there is still a lot to learn about the pharmacology of opiate drugs, especially when they are used for prolonged periods of time. There is also a great deal to learn about certain kinds of cancer pain. Our understanding of the pain that occurs when cancer invades deep structures, like bone or viscera, or when it encroaches upon the nervous system is especially poor. When we ablate portions of the nervous system to help relieve pain, it is very common, after a period of analgesia, for the pain to return, indicating that some neural reorganization is taking place. We know nothing about these processes which severely limit our ability to use neuroablative procedures.
We are also very interested in finding out how to better treat children who are in pain. This has been one of our major failings. At least in part because we don't know how, we simply do not treat children in pain as well as we could.
To help you understand the nature of the task you have undertaken, I would like to explain for you our Pain Relief Project. Last summer we met with representatives of 13 health care provider groups including the American Pharmaceutical Association, National Hospice Association, American Society of Clinical Oncology, American Academy of Neurologists, National Medical Association, Area Health Education Centers, Pharmaceutical Manufacturers Association, American College of Family Physicians, American Society of Hospital Pharmacists, American Medical Association and the American College of Surgeons. We wanted to see what they could do to help with the cancer pain problem by enlisting the people in their organizations who have the expertise to deal with this problem on a grass roots level. In working with major national organizations we ran into many of the same kinds of problems and bureaucratic barriers that we run into when working within the federal government. We discovered that the best chance for progress is present when the planning and action occur at the same organizational level: that is, the level of your Strategy Session. As a result, you all hold in your hands the real opportunity for progress.
In your workshops, you must concentrate on developing specific projects that will lead to accomplishment. I urge you not to overlook even the simplest kinds of things, because they probably have not yet been tried, and they can be truly effective. For instance, if we look around the country, we would probably find very few nurses' stations that have charts showing the dosage equivalence for various kinds of analgesics or what the typical starting dose might be. Because it is very common for narcotic drugs to be under-prescribed in dosage and interval, even such simple information, which already exists, would obviously be helpful if it were widely available and easily accessible. Some have argued that the constant visibility of this information would make underprescribing more difficult because everyone would be aware of proper dosages and who was not using them.
We also need to keep in mind what we have already tried. The editorials in major medical and professional journals, the continuing education courses, and the major meetings for all their benefits, have not yet led to the improvements in pain management we are seeking. Thus, one of your major changes at this Strategy Session is to come up with approaches that may not have yet been tried. We know what we have done and we know what has not been successful on the large scale at which we are working, so now is the time for something new.
At the NIH Consensus Conference, the Integrated Approach to the Management of Pain, held last May, the Consensus Panel was presented with the task of writing a statement that answered five questions. These questions were:
We developed an interdisciplinary and intradisciplinary consensual statement to address those five questions.1 Our consensus basically is that pain accountability should be written into existing quality control measures. We do not need a new unit or agency, but we need to examine what exists, and then we must strive for greater accountability in pain management.
In determining the consensus statement, it was uplifting that any conclusion could equally represent pharmacy, dentistry, law, theology, biostatistics, epidemiology, internal medicine, oncology, anesthesiology, psychiatry, nursing service, nursing education, hospice nursing, and oncology nursing. One theme discussed at the NIH Consensus Conference was the difficulty of defining cancer pain. Pain associated with trauma, pain associated with disease, pain associated with therapy, pain associated with the decision not to pursue treatment, all these things could be cancer pain.
Very often at the NIH Conference, researchers discussed consulting the primary source, and yet we did not have a pain patient on our Consensus Panel. The rich language of the pain patient must be made available to us. We must be careful to communicate what the patient actually said. For example, one patient said, ". . . then the pain grew intense again, like some huge grizzly bear taking me between its paws. I screamed from the sheer shock of it and I could not help myself from shrieking, feeling that if I bore the agony a moment longer, it would split my skin."2 When the nurse called the doctor to discuss the patient, was the message "I think he is getting uncomfortable"? Clearly, something is often lost in the translation of the patient's pain.
I commend the NIH Consensus Conference because it improved the understanding of pain. Prior to the last conference, pain had been alluded to as some sort of disembodied spirit, but at this recent conference it became clear that pain is more than a concept. Pain can be to anyone at any moment a dehumanizing life experience. If we are to understand pain, we must keep the pain experience ever with us.
We also discussed the issue of the lack of pain management and litigation and the unethical aspects of not attending to pain. We concluded that even though pain is assessed, it often is not acknowledged. Pain is not anticipated; it very often is not interpreted properly. This inattention becomes a political, economic, and ethical issue.
Because pain is a critical issue, the accountability that you are displaying at this Strategy Session is exceedingly important to us all.
2. De-la-Noy M. Denton Welch: the making of a writer. Harmondsworth and New York, Viking, 1984.
Pain due to cancer continues to be one of the more difficult diagnostic and therapeutic problems in the health care community. While improvements in the treatment of some forms of cancer have resulted in increased survival, pain due to cancer continues to affect the quality of life of many patients. The physical, psychological, emotional and socio-economic morbidity associated with chronic cancer pain is great; new research initiatives and transfer of existing knowledge into effective management practices are needed.
To deal with this problem and to promote the use of the technology currently available, the National Cancer Institute is supporting studies in several areas of pain research and control. These studies include research on the pharmacologic control of pain, and clinical research on the assessment of pain management techniques, coping strategies and educational interventions. Through the application of existing pain management techniques, the majority of pain due to cancer can be controlled. In spite of current pain management technology, impediments remain to the adoption by health professionals of the optimal available approaches. Changes in professional and patient attitudes and the adoption of better management practices are keys to achieving an improvement in cancer management.
The National Cancer Institute is also supporting studies of the relationship between the pharmacokinetic factors and pharmacologic effects of narcotics commonly used as analgesics. Innovative delivery methods for analgesia and the minimization of side effects in pain treatment are also being addressed. Several scientists are conducting research on psychological interventions to enhance coping mechanisms including stress reduction and other behavioral approaches for cancer patients with pain due either to the tumor or the effects of therapy.
Investigators are studying oral pain as it relates to toxicity associated with chemotherapy. They are also researching biological and biosocial factors which affect the incidence and severity of toxic complications, and how these factors influence pain management, hospitalization, and cost. The National Cancer Institute supports educational efforts directed towards improving knowledge of pain assessment methods and the delivery of appropriate pain management. Patient and family member attitudes concerning pain and treatment and the physician-patient interaction in pain management are also areas of interest and support.
Future National Cancer Institute initiatives will support research on pain reduction in pancreatic cancer patients through clinical trials assessing the effectiveness of conventional and innovative treatment approaches to pain management. We are also planning research to develop methods for improving drug delivery systems as well as improving ways to implement optimal cancer pain management in community settings.
We are very interested in the methodology for increasing the transfer of technology and pain management, thus improving the quality of life. We welcome the model developed through the Wisconsin Initiative for Improving Cancer Pain Management. The information obtained from this model will be useful for communities in other states and will be followed closely by many people locally and nationally.
Usually we say that after all is said and done, there is usually more said than done. I think, though, that with very little said, the Wisconsin Initiative has done very much. I think it is a global pace setter, a unique initiative with an approach that translates from the state level down to the patient and the family.
I urge you to monitor your programs to show the rest of the world your progress. We can then send people here to learn what should be done. The Wisconsin Initiative is unique because it involves all the professionals, the public, and the patient. It is also unique because it addresses cost effectiveness. Escalating costs of health care cannot continue, and since pain relief is very important, it should not be very costly.
Furthermore, as Dr. Duffy would say, one of the "dinosaurs" has changed direction. We see many of these comprehensive cancer centers, looking only for excellence, for more publications and competition in therapy. But here, we have one of the world's leading comprehensive cancer centers that has shown its leadership internationally in Africa, and now in Asia, that is also reaching out to its own community with pain relief. Pain is usually the stepchild of all these comprehensive cancer centers I visit around the world. There is very little on pain relief.
We have great expectations and look forward to what will come out of the Initiative. I think you have some outstanding and devoted individuals here, Dr. Dahl, David Joranson and others, and I am sure that we will have results very soon.
Prevalence of Cancer Pain. Globally, two thirds of our cancer patients end up needing pain relief. But there is little that is being taught or being done for there are few resources in comparison to the problem. Globally, one of ten dies of cancer.
More than half of the world's cancer patients are in the developing countries from which we have two distinguished representatives here beside me: Dr. Shah from India and Dr. Romero Romo from Mexico. I would say that at least 80% of patients in the developing countries are, at time of diagnosis, incurable. Pain relief is the only realistic, pragmatic and humane thing we can give these patients. But in India, for instance, which represents one sixth of the world's population, there is not a single tablet of oral morphine available in the health services. They have ten comprehensive cancer centers, and I visited four of them recently. Every patient that was there on the second step of the pain ladder (aspirin, codeine, morphine), was under-dosed with codeine. There was not enough to go around.
So again, I think the Wisconsin Initiative will be a pace setter to show that this simple approach we hear from Dr. Duffy is true, that we have had this knowledge for years and years, but nobody had reacted to it in a cost-effective way.
Cancer pain is also a problem in the developed countries, like the United States, so we at WHO are not trying to sell a second-rate approach to the developing countries. We hope in the future to be able to send people here to learn from your experience on how to handle drugs and how to reach out to the community and involve families. We would also like those people we send to tell how WHO can serve you,and how you can use WHO as your organization.
I will just mention briefly what our program is doing. Out of four priorities in the global WHO cancer control program, cancer pain relief is one. The others are primary prevention, early referral of cases linked with adequate therapy, and finally, national cancer control programs that match priorities with available resources.
It is an illusion to think that you can give more money to cancer globally, so we have to change the whole concept. Again, just to give you one example, in Africa, excluding South Africa and the Mediterranean countries of Africa, there are 290 million people and less than 75 specialists. These specialists- surgeons, chemotherapists, epidemiologists, cancer nurses, and cytologists-serve all 290 million people there, so we think pain relief is one of the first feasible approaches in health care there.
WHO data show that there are eight most common cancers. Stomach cancer is the most common, but lung cancer will soon overtake the incidence of stomach cancer. Lung cancer is a self-induced, unnecessary, avoidable and preventable cancer. Then comes breast, colon, cervix, mouth, esophagus and liver cancers.
We can see that some cancers are definitely preventable, like liver cancer, mouth cancer, pharynx cancer and lung cancer. Stomach cancer, through diet, has gone down four-fold in incidence every 12 years globally. The United States is the leader here. That has happened without the medical establishment intervening. Better diets and better storage of food have contributed to this.
We have big breakthroughs in children's tumors and more rare tumors, but the very common tumors escape in high percentage from any curative therapy. It is serendipity if the surgeon has been there with his knife. It is serendipity whether the patient survives or not. It is determined by the biology of his tumor, but 90% of the resources go to therapy. Very little goes to cancer patients, even in developed countries, where the greatest need is for pain relief.
In all my medical training, I never got a single hour of training in pain relief. I think this simply means that we need to train nurses and doctors about pain. This training should be included in the compulsory training schedule of doctors and nurses, and it should be a question of exam.
You can change things. So if you have the Wisconsin Initiative, the political will, and the vision to change, you can do it cost effectively. Globally, the great majority of cancer patients need us to help with cancer pain, and this is where we are failing them. In the developing countries, where half the world's cancer patients are, this is the only pragmatic, humane and realistic thing to do for years to come. So the world will look to your Initiative to determine what can and should be done.
WHO estimates that 3 1/2 million patients suffer daily with moderate to severe pain, and only a fraction of them receive adequate pain relief. There are deficiencies in the developed countries, in terms of pain relief, so you can imagine then the deficiencies in developing countries.
If you take India, WHO estimates with Indian colleagues that there are 350,000 patients daily with severe pain who need relief. Less than 5% to 10% of the cancer patients in India are receiving that relief. Only an estimated 5%, or 16,000 people a year, are getting pain relief. Those that do get pain relief are those who happen to come and knock at the door and present themselves. But there is no active health policy to go systematically and use the three-step ladder. If you would take a public approach to pain relief, you could, with simple means, cover 80% to 90% of the patients who need pain relief.
WHO and Cancer Pain Relief Efforts. Let's discuss what WHO has done. We have identified pain relief as a priority. We have 167 member states now. When they ask us to help them to set up priorities for a national cancer control program, we always include anti-tobacco measures. We very much admire the Surgeon General's approach in this country on anti-tobacco activities. One third of our cancer globally is caused by tobacco smoking. We also always include pain relief.
So, big mother India, with one sixth of the world's population has in its program of work doubled the federal budget for cancer. They are reallocating 50% of that budget to primary prevention, early referral and pain relief. We have just received commitments from five states representing 160 to 170 million people in India, to include pain relief and to make more opiates available.
Through the WHO member states, we heard repeatedly that the mandate of the politician comes not from the doctor, not from the nurses, but from the public. If the public demands pain relief, we will change things. We made press kits with feature stories that have produced stories of pain relief and the need for pain relief in 122 member states. Furthermore, we addressed official meetings. Many who never before dealt with pain relief are now doing so.
Furthermore, we work through the governments on health policy. We have also produced a cancer pain flier that we sent to every government, every comprehensive cancer center, every nursing school, and to the public.
In addition, with funds from a private foundation in Italy, and from the Federal Republic of Germany, we had the first international consensus report on how to treat pain. The chairperson of that meeting, Dr. Kathleen Foley, guided the organization to create a standard curriculum book on teaching about pain, which is now being reproduced in 11 different languages.
Since we know that 80% to 90% of pain can be managed, we want to change health legislation to make the necessary drugs available and support it through our essential drug program.
Progress. We are very pleased that the Wisconsin Initiative agreed to be a demonstration state for WHO. It's a very important step. The most important step is to go from big organizations, big institutions to a new type of working through networks. I think that is the future. We are trying to "network" and support those that have vision and ideas on pain relief. We do this, for instance, through the International Association for the Study of Pain. Again, Dr. Foley is the chairperson of the subcommittee for teaching. WHO doesn't have the staff for that, so we have to draw on the world's best experts. The World Federation for Cancer Care now pledges to provide teaching faculty to help us. The International Society of Nursing in Cancer Care president is Dr. Tiffany. He will promote cancer pain treatment in the routine curricula of nursing schools all around the world. Again, the United States is the leader here.
We have tried a mechanism of establishing WHO collaborating centers to get the expertise we need. We have collaborating centers in Milan, hopefully soon here in Wisconsin, and in Oxford and New York with the world's best experts to implement this.
If you go to a country like India, a big center like Tata Memorial Hospital for oral cancer, or if you go to a cervical cancer center in Bangalor, then you have women present with back pain, bleeding, or a big fungating oral cancer. Between 30% and 38% of these patients are returning home during the first week. Can you imagine? I thought that this was because they want a loving hand at the stern and wanted to die at home. But it is probably based more on pure economic reasons. The main thing is to get them in early. But for years to come, pain relief is the only realistic thing to offer these patients.
This is why we need your help in the Initiative to show what can be done and to show people how to overcome the excess drug restrictions of drug commissioners and drug regulators from other nations.
Goals. To be concrete, what are the goals of the coming five years? One indicator for the global program is to have as many countries as possible to introduce pain relief as a part of the national health policy. Definitely all those countries that have a national cancer control board and advisory board should have pain relief on their agenda. We will monitor that.
We will have five demonstration countries that we will negotiate and see if we can change things during five years' time. It will be shown in a steplike fashion that you can, from the comprehensive cancer center, go out to the district's provincial hospital and try to reach the community and then those patients who want the privilege of dying at home. With help, the majority of patients in developing countries can die at home and at the same time receive cancer pain relief.
We want to have six regional training courses. From each of the 167 member states or as many as possible, we want to identify one national achiever who can change things. Then we want to have an international teaching faculty of a lawyer, a journalist, (because we have to address the public and journalists are very important), a nurse, a pharmacologist, a cancer specialist, and a public health person. Then we plan to call these together in six different parts of the world and support them and share experiences.
I hope Wisconsin's Initiative will be a pace setter of what can be done, showing us how to overcome the diversion of drugs, what can be expected in terms of handling drugs and drug safety, and also how drug legislation in other countries can be changed. We will also look for guidance in getting the nurses involved because they are really key persons, much more important than doctors to get this delivered. Furthermore, we need to make the people aware that freedom from cancer pain is their right. And if the people know that freedom from cancer pain is their right, I am sure they will demand it. That certainly will change things.
In greater Bombay, where 8.6 million people live, 3.5% of all deaths are due to cancer. These deaths are primarily due to cancer of the head and neck in men and cancer of the cervix and breast in women. It's estimated that pain is associated with those cancers in 50% to 60% of the cases.
While we have adequate information about the management of pain, our most critical difficulty is the lack of narcotics and analgesics to treat the pain. We have an acute shortage of injectable morphine, and we have not yet seen oral morphine preparations in India.
To help relieve some pain, we have been preparing 300 mg of aspirin and 30 mg of opium in tablet form and giving them free to patients when the drugs are available. The availability depends on the supply of opium by the government, but the supplies tend to be very irregular and inadequate.
We would like to follow the three-step ladder suggested by the WHO, provided the drugs are available to us. We now appeal to the WHO to help us by recommending to the government of India that drugs which are essential should be made available so that we may properly treat victims of cancer and cancer pain.
We suffer in Mexico because of our lack of education and because of our economic crisis. Because we lack the resources to adequately treat cancer, doctors in Mexico must dedicate themselves to treating patients from the palliative rather than the curative point of view.
For the many cancer patients who come to our Institute, we offer the few drugs we have available. We only have two derivatives of morphine, but they are strictly controlled by the government, and the patient can't get them easily. The patient who wants pain relief has to go to a physician who has been given permission by the government to dispense such drugs.
Though we have had a pain clinic in Mexico City for 15 years, there has been little treatment for cancer patients. We have built our own National Cancer Institute now, and we often use neurolytic blocks, and intraventricular pumps for the delivery of morphine. We are encouraged that the Wisconsin Initiative has invited us to the Strategy Session so that we might create a collaborative program between Mexico's National Cancer Institute and the University of Wisconsin for the treatment of cancer pain. We are grateful that your state has given thought to our problems in Mexico, and we thank you for sharing your wisdom and enthusiasm in creating a program for cancer pain treatment.
I see cancer patients with pain every day. These patients tell us what the cancer pain issues really are. In fact, a room full of patients and families can tell much more moving stories than anything I can relate.
The cancer pain problem needs to be publicized. We have to make information about the proper management of cancer pain available to the public who will then expect appropriate treatment from their health care providers. Therefore, our first and major goal must be to educate the public as well as the health care professionals. We need to begin this effort in a positive fashion. Rather than blaming any group for their failings in cancer pain treatment, we need to admit that we have a problem, that we have to solve the problem, and that education is the way to do this.
Pain v Suffering. We need to teach patients and health care providers the distinctions between pain and suffering. The word pain should be used to refer to the perception of a nociceptive stimulus in the peripheral or central nervous system and associated with an affective response. Suffering has a significantly more global component and may occur in the absence of a nociceptive stimulus. Approaches to treat pain as well as to recognize and to treat the suffering that occurs in cancer patients have been described and should be made known to health care providers. For example, we have developed at Memorial Sloan-Kettering Cancer Center, a pain measurement scale called the Memorial Pain Assessment Card (MPAC)1. This is an 8 1/2 by 11 inch card which contains a visual analog scale for pain, pain relief and mood and series of words describing a patient's pain. Patients rate their pain, their pain relief, and mood. By using this tool repetitively, the patients learn greater insight into a language to express pain and changes in pain and mood. Similarly, a series of happy/sad faces has been devised to assess pain in children between the ages of two and eight years. Children over eight are able to use the adult MPAC. Communication between the patient and the health care provider is crucial to provide better pain management. These measurement tools provide a first approach for communicating with the cancer pain patient.
Types of Patients with Cancer Pain. For purposes of discussion, cancer patients can be categorized into five groups.2 This classification provides physicians with a framework when considering a variety of therapeutic approaches. Group I consists of patients with acute cancer-related pain. A subgroup of this category includes patients in whom pain is the major symptom leading to the diagnosis of cancer. For this group, pain has a special meaning as the harbinger of their illness, and occurrence of pain during the course of their illness, or after successful therapy has the immediate implication of recurrent disease. Determination of the cause of the pain may present a diagnostic problem, but effective treatment of the cause is usually possible and associated with dramatic pain relief in the majority of patients. The second subgroup includes patients who have acute pain associated with cancer therapy. The cause of their pain is readily identified, and its course is predictable and self-limited. Such patients endure pain for the promise of a successful outcome.
Group 2 consists of patients with chronic cancer-related pain who often represent a difficult diagnostic and therapeutic problem. This group can be subdivided into patients with chronic pain from tumor progression and those with chronic pain related to cancer treatment. Both groups have pain that has persisted for more than six months. In those patients with chronic pain associated with progression of the disease, the pain escalates in intensity, and combinations of anti-tumor therapy, analgesic drug therapy, anesthetic blocks and behavioral approaches are all attempted with varying degrees of success. For this group, psychological factors play an important role as they represent patients in whom palliative therapy may be of little value and is physically debilitating. The sense of hopelessness and fear of impending death may add to and exaggerate the pain, which in turn contributes to the overall suffering of the patient. Identification of both the pain and the suffering component is essential to the provision of adequate therapy. Patients with chronic pain associated with cancer therapy usually require treatment directed at their symptoms, not the cause, and treatment of their pain is often limited by the lack of available methods to remove the cause of the pain, eg, a traumatic neuroma in a patient with postsurgical pain syndrome. This group of patients closely parallels those from the general population with chronic intractable pain. Identification of this group is necessary because recognition of the cause of the pain as independent of cancer recurrence markedly alters the patient's therapy, prognosis and psychological state. This group is increasing in size and accounts for 25% of patients referred to a cancer pain clinic.
The third group includes patients with a history of chronic nonmalignant pain who have cancer and associated pain. Psychological factors play an important role in these patients whose psychological and functional status is already compromised. Identification of this group of patients as high risk helps to improve their psychological assessment and intervention.
The fourth group of patients includes those with a history of drug addiction who have cancer-related pain. Attention to the medical and psychological needs of these patients requires individualized assessment and consultation with experts in drug-related problems. Undertreatment with analgesic drugs occurs most commonly in this group of patients. Assessment of reported pain by physicians and nurses is colored by the fact that the pain symptoms are confused with drug-seeking behavior.
The last group of patients includes dying patients with pain. In this group, diagnostic and therapeutic considerations should be directed at maintaining the comfort of the patient. Again, the issues of hopelessness, death and dying, become prominent, and the suffering component of the illness must be addressed. Inadequate control of pain exacerbates the suffering and demoralizes both the family and the medical personnel, who feel that they have failed in treating the patient's pain at a time when adequate treatment matters most. Each of these types of patients points out the necessity of understanding the psychological needs of the patient in order to assess the pain and manage it appropriately.
Cancer pain has also been classified according to a series of common pain syndromes and their pathophysiologic mechanisms.3 The pain syndromes that commonly occur in patients with cancer have been divided into three major categories. The first, and the most common, cause of pain in patients with cancer is that associated with direct tumor involvement. This accounted for 78% of pain problems in a survey of the Memorial Sloan-Kettering Cancer Center inpatient population and for 62% of problems in an outpatient survey.
Metastatic bone disease, nerve compression or infiltration, and hollow viscus involvement are the most common causes of pain from direct tumor involvement.
The second group of pain syndromes includes those associated with cancer therapy and the pain that occurs in the course of or as a result of surgery, chemotherapy, or radiation therapy and accounts for approximately 19% of pain patients in an inpatient population and 25% of problems in an outpatient population.
The third category of pain syndromes includes those unrelated to the cancer or the cancer therapy. Approximately 3% of inpatients have pain unrelated to cancer or cancer therapy, and this figure increases to 10% when an outpatient population is surveyed.
The pathophysiologic mechanisms of these common pain syndromes are not well understood, but they account in part for the differences in the responses of various types of cancer pain to analgesic, neurosurgical and anesthetic approaches. At the current time, however, drug therapy represents the mainstay in the treatment of patients with pain and cancer.
Controversy in the Use of Narcotic Analgesics. Traditionally, the narcotic analgesics have been used to manage acute pain. Long-term use has been discouraged because of the development of tolerance, physical dependence, and psychological dependence. Tolerance is a state in which escalating doses of drugs are needed to maintain analgesic effect. Physical dependence is characterized by the onset of acute symptoms and signs of withdrawal if the narcotic is suddenly stopped or a narcotic antagonist is administered. Psychological dependence or addiction is separate from physical dependence and tolerance and is a concomittant behavioral pattern of drug abuse, characterized by a craving for the drug and overwhelming involvement in obtaining and using it. Because of the misconception by both clinicians and patients that physical dependence and addiction (psychological dependence) are interchangeable terms, the use of narcotic analgesics in patients with acute or chronic pain remains inadequate at best. This overriding fear of addiction, coupled with physicians' lack of knowledge about the clinical pharmacology of narcotic agents further limits effective use of these drugs.4 Without question, for the patient with pain and cancer, one of the overriding fears is that the drugs that they take to relieve their pain will make them drug addicts. Similarly, we surveyed the parents of children dying with cancer to ask them how they viewed the use of narcotic analgesics in the management of pain in their children. These parents were worried that their children might survive and would grow to adulthood as addicts. Yet, in fact, the majority of these patients who required large doses of narcotic analgesics were terminally ill. This becomes even a greater problem in the management of the adolescent with pain in which families see this adolescent at high risk of abusing drugs and have a great deal of difficulty understanding the legitimate use of analgesics in the management of their pain.
The truth is that addiction is not the issue for cancer patients, and informing health care professionals and patients about the distinctions between tolerance, physical dependence and psychological dependence is crucial. From our clinical use of analgesics in patients with pain, we have come to recognize that tolerance is a complicated phenomenon with multiple contributing factors. In the cancer patient, progression of disease is most commonly associated with escalation in the requirements for narcotics to provide effective analgesia. We have come to recognize that there is no limit to tolerance and that patients can be maintained relatively pain-free over long periods of time with appropriate drug management. Where does this fear of drug addiction come from? This fear of drug addiction comes from a historical view that narcotic analgesics should not be used to maintain patients in chronic pain and that their major role is for the management of acute pain. The use of analgesics by the hospice movement and by programs promulgated by Drs. Cecily Saunders,5 Robert Twycross,6 and Raymond Houde7 have pointed up the fact that narcotic analgesics can be used safely and effectively for long periods of time in patients with pain and cancer.
In reviewing the studies on chronic opioid use in patients with chronic pain and their risk of addiction, there is a dearth of available data. In a prospective study, Porter and Jick8 monitored the incidence of narcotic addiction in 39,946 hospitalized medical patients. Of the 11,882 who received at least one narcotic preparation, there were only four cases of reasonably well-documented addiction in patients who had no history of addiction. This point, taken from a survey of a general population, suggests that the medical use of opioids is rarely associated with the development of psychological dependence. A series of studies of the abuse of analgesics in patients with chronic illness and pain reported abuse of sedative hypnotic and analgesic combinations to be more common than the abuse of opioid analgesics. Several recent studies have described the use of chronic opioid therapy in patients with nonmalignant pain and have reported that chronic use is not associated with substance abuse or psychological dependence.9 These later studies support the concept that drug use alone is not the major factor in the development of psychological dependence but that other medical, social, psychologic, and economic factors seem to play an important role. The clinical experience in the use of opioid analgesics in the management of patients with pain has suggested rather important distinctions between the development of physical and psychological dependence. The chronic use of opioid analgesics in the cancer patient has provided the model with which to study the components that may predispose individuals to substance abuse and psychological dependence.
Conclusion. In summary, there are many changes that need to be implemented to improve the management of patients with cancer pain. Presenting information to the health care team regarding the assessment and treatment of cancer pain should be the initial approach. Unconditional, positive regard for the patient with pain and for the members of the treating team is an important component of this approach. It must be recognized that treating cancer pain requires a team approach by health care professionals. Every hospital, both cancer center and community hospital, should have a physician and nurse with expertise in pain management who can act as a liaison for their community in the management of such patients. These individuals should be given the time and opportunity to be trained so that they can assume the role of an expert. Besides training health care professionals, patients need education as well. We must give patients information so that they can deal more effectively with their own cancer pain. Finally, I think it is important for respectable people to respect the complaint of pain. If respectable physicians respect cancer pain treatment, then their respectable colleagues will respect it as well. When patients are cared for in this manner, they begin to regard their own pain treatment with respect.
2. Foley KM. The treatment of cancer pain. N Eng J Med 1985; 313:8-95.
3. Foley KM. Pain syndromes in patients with cancer. In: Foley KM, Payne R, eds. Med Clin N Amer 1987;7:169-84.
4. Kanner RM, Foley KM. Patterns of narcotic drug use in a cancer pain clinic. Ann NY Acad Sci 1981; 362:161-72.
5. Saunders CM. The management of terminal illness. London: Edward Arnold, 1967.
6. Twycross RG, Lack SA. Symptom control in far advanced cancer: pain relief. London: Pitman, 1984.
7. Houde RW, Wallenstein SL, Beaver WT. Evaluation of analgesics in patients with cancer pain. In: Lasagna L, ed. International encyclopedia of pharmacology and therapeutics. Section 6, Clinical Pharmacology, Vol. 1. New York: Pergamon Press, 1966:59-97.
8. Porter J, Jick H. Addiction rare in patients treated with narcotics. N Engl J Med 1980; 302:123.
9. Portenoy RK, Foley KM. Chronic use of opioid analgesics in non-malignant pain: report of 38 cases. Pain 1986; 25:171-86.
We express our appreciation to all those dedicated and hardworking individuals who are the Initiative. They have given and continue to give freely of their time and talents to improve the quality of life of cancer patients.
Joranson, David E. Preliminary Proposal to the Informal Steering Committee for Improving Cancer Pain Management, August 1985.
Bibliography on Cancer Pain. Wisconsin Initiative for Improving Cancer Pain Management. Madison, Wisconsin, June 1986.
Epidemiology of Cancer Pain: A Review of Studies. Wisconsin Initiative for Improving Cancer Pain Management. Madison, Wisconsin, June 1986.
Matrix Analysis: What Are the Factors that Contribute to the Cancer Pain Problem? Wisconsin Initiative for Improving Cancer Pain Management. Madison, Wisconsin, June 1986.
Press Briefing Packet on the Wisconsin Initiative.
1986 Strategy Session Program (including list of participants).
1987 Resolution on Cancer Pain by the Wisconsin Legislature.
Wisconsin Patient Education Brochure on Cancer Pain (in press).
Cancer Pain: Diagnosis and Treatment. An Instructional Manual for Physicians. (in press).