John D. Loeser, MD, Department Editor
Reviewed by Charles S. Cleeland, PhD
M.R. Rajagopal, David Mazza, Arthur G. Lipman (Eds.), New York, Haworth Press, 2004. Soft cover, 323 pages, ISBN 0789015560, $39.95. Hardcover, 323 pages, ISBN 0789015552, $59.95.
The Minister of Health in Vietnam once asked me, We have malaria, parasites, and many other horrible diseases. We need to vaccinate our children. Why should we care about pain? That question is often in the minds of policy makers in developing countries when approached by those advocating pain relief and palliative care. The burden of providing health care for all people with only a few dollars per capita is crushing. Providing pain relief is, therefore, often seen as an unattainable luxury.
The answer to this central question is not an easy one. Part of the answer is that pain can be relieved, and this relief can be provided without a major strain on health resources. Another part of the answer is that the knowledge base is there; we have methods for relieving pain that work in a predictable way. This book offers many examples of programs that are working toward the goal of providing comfort to those with advanced cancer, AIDS, and other fatal diseases, despite the absence of resources and local expertise in delivering comfort care. It relays many important stories that need to be read by both those in developing countries and those in more developed countries who share the ambition of helping relieve the oceans of pain that engulf millions of sick and dying people all over the world.
A major feature of this recounting of efforts in palliative care is the illustration that there are many approaches that may work. There is no magic bullet that will work everywhere. Culture, healthcare delivery systems and priorities, and resources dictate that there must be tailored strategies for each region, country, and locality.
Kitzes and Domer describe several developmental palliative care programs for American Indians and Alaskan Natives that show a unique sensitivity to cultural traditions. All of these programs enlisted elders of the respective tribes early in the process, and much of the care is provided by tribal people.
Some of the tensions that exist in making pain relief and palliative care available to the underserved of the world are apparent in this book. Kerryn Lum addresses many of the dilemmas in providing pain relief to prisoners in the developed world. Do convicted criminals deserve comfort care? Are those who choose drug addiction entitled to drugs when they are suffering from disease? Who should pay for their care? These issues, central to her report from New Zealand, are of equal importance in the United States and other Western countries. Such issues are amplified when prisoners are from cultures distinct from their jailers.
Another tension is the potential for years of work by dedicated people to be reversed. The chapter by Ghooi and Ghooi is the most disturbing. India was one of the first targets of World Health Organization (WHO) efforts to bring relief to cancer patients, and definite progress was being made. India is a major world supplier of medicinal morphine and has governmental supplies of morphine to treat thousands of people, yet only a fraction of the very poor (and even those who are not so poor) have access to the drug. The enactment of a narcotics drug law in 1985 saw the medicinal use of morphine plummet from 750 kg per year to only 75 kg per year in 1995. According to the authors, only 8 of 28 states in India now allow access to morphine. The Ghoois have had success in the Indian court system, but there has been little effort to support positive court rulings.
Finally, there is a cultural tension that might be thought of in East-West terms. The hospice movement has a very Western (and spiritual or Christian) history. This is recognized by the contributions of Manima and Lunn. Examples are given of forcing a religious viewpoint in providing comfort care. The cultural insensitivity of this is obvious. The more subtle concern is that some may force spirituality without understanding the true meaning of spirituality in a given culture. It behooves those of us who want to help to find out what parts of the package of palliative care are really wanted and acceptable. Sometimes, pain and symptom control are quite enough.
The selections included in this book are only part of the story. Several issues of the Journal of Pain and Symptom Management have told other parts, and those interested in this topic should search those out. There needs to be a history of the development of the three-step ladder by a committee in Milan, Italy, around 1980, and the resultant appearance (in 1986) of the WHO monograph, Cancer Pain Relief. This little book, translated into dozens of languages, was a landmark for the legitimization of pain control as a public health issue in developing countries. It also presented a simple, inexpensive, and effective pain management protocol. Remarkable changes in pain relief in China originated because of the three-step ladder. The selections included in this book are important for those who think providing pain relief for the disadvantaged cannot be done.
Dr. Cleeland is the McCullough Professor of Cancer Research and Chair of the Department of Symptom Research at the University of Texas M.D. Anderson Cancer Center in Houston.
Dr. Loeser is Professor of Neurological Surgery and Anesthesiology at the University of Washington in Seattle.