Adequate treatment of pain is essential to alleviate suffering, yet studies show that patients with terminal or serious illness receive inadequate pain relief. In the case of terminally ill patients, adequate palliation of pain may be likely to reduce requests for physician-assisted suicide. This issue of the journal addresses barriers to effective pain relief and suggests how treatment of pain can be improved. The symposium features the Pain Relief Act, which is designed to provide practitioners who prescribe controlled substances for pain with protection from inappropriate legal sanctions. The Act is the product of the Project on Legal Constraints on Access to Effective Pain Relief, whose principal investigators were Nancy Neveloff Dubler, LL.B., Sandra H. Johnson, J.D., LL.M., Robert J. Levine, M.D., and Benjamin W. Moulton, J.D., M.P.H.

The Project was supported by the Mayday Fund and the Emily Davie and Joseph S. Kornfeld Foundation.

Pain management has no meaning without the stories of men and women, and boys and girls whose lives are dramatically altered by the presence of pain in their own and their loved ones lives. In this narrative section, four people present their perspectives on the enigma and challenge of pain, its power, and our on-going efforts to limit its hold on our lives.

In the first story, Dr. Robert McQuillan, an anesthesiologist with Creighton University School of Medicine, conveys the fear some patients suffering chronic pain face when seeking pain medication over the long term. Dr. Christine Cassel, chair of the Department of Geriatrics and Adult Development at Mount Sinai Medical Center and immediate past president of the American College of Physicians, recounts the plight of a fellow physician whose pain treatment of a patient led to suspension of his professional license and to personal bitterness after many years of exemplary medical practice.

Mary was angry. Youre going to take my pain medications away, aren't you? These were the first words she spoke as I walked into the examining room. Mary had a complex medical history, beginning with a back injury in 1988 that led to several surgical procedures, multiple injections of local anesthetic and corticosteroids, and placement of a dorsal column stimulator, none of which provided significant relief of her pain. Crippled by severe and sharp pain in her lower back and left leg, she had sought help from several physicians, and had most recently been referred to me specifically, as she put it, to take away the pain medications.

Not that the pain medications had afforded Mary a normal life by any stretch of imagination. She was taking eight to ten moderate strength opioid tablets per day in an effort to decrease her pain. She was not active, choosing to spend most of her time at home. She had quit her job shortly after the work-related accident. In fact, the workman's compensation board is still disputing her claim, and this dispute took a toll on Mary.

Dr. M is a fifty-nine-year-old internist with a successful practice in a major Eastern United States city. He has lived in this city his whole life and is a highly esteemed citizen. Because of his broader social concerns and energetic support of activities to improve access to health care and quality of care for the underserved, Dr. M became involved in a number of local and regional medical organizations and quickly rose to prominence as as a director of a board of a major national organization. In this position, he was an effective, articulate spokesperson, highly respected for his integrity and thoughtfulness.

Before one of the meetings of thithis s board, Dr. M personally contacted the organization's other directors, including me, to warn us that we might be hearing some scandalous news about him. He wanted us first to hear it from him personally. This was the scandalous news.

Dr. M had assumed the care of a patient of a recently retired colleague. The patient was an older woman with multiple musculoskeletal complaints related to lumbar stenosis and advanced degenerative arthritis of the spine, which left her in immense pain.

Pain can be a body-wrenching curse. Yet it is often a life-defining and supporting blessing!

Pain is a distinct physiological event, yet it is also an emotional, social, spiritual, and economic force. Pain in its more destructive form alters lives, changes relationships, and disrupts families.

Quality pain management should not be just a pharmacological response to a medical situation; it must also be a theological, ethical, and societal response to human need. Appropriate pain management is a gift to both the receiver and the provider. As a parish priest, a supervisor of pastoral services, and an ethics resource specialist, I have seen many pain-filled situations that have involved multiples of these dimensions.

Born in 1969, Casey died in 1995, just a few months after his twenty-sixth birthday. Casey was an intelligent, charismatic college student, strong in religious faith, who had few problems … at least until one day in the summer of 1994. That day he began to suffer extreme pain in his lower stomach and bowels.

At age twenty-nine, while a graduate student in computer science at the University of Pennsylvania, Mark Albertson was diagnosed with lymphosarcoma. He died four months later, leaving a wife and two young daughters—Robin, three years old, and Kim, three months. Sandra Albertson, a Quaker, writes about their family’s experience with death and renewal.

The following is reprinted from Sandra Albertson, Endings and Beginnings (New York: Random House, 1980; Ballantine, 1983): chs. 9, 10.

During the past decade, debate has intensified about the role of long-term opioid therapy in the management of chronic nonmalignant pain. Specialists in pain management have discussed the issues extensively and now generally agree that a selected population of patients with chronic pain can attain sustained analgesia without significant adverse consequences. This perspective, however, is not uniformly accepted by pain specialists and has not been widely disseminated to other disciplines or the public. Rather, the more traditional perspective, which ascribes both transitory benefit and substantial cumulative risk to long-term opioid therapy, continues to predominate. According to this perspective, the inevitability of tolerance limits the possibility of sustained efficacy, and other pharmacological properties increase the likelihood of adverse outcomes, including persistent side-effects, impairment in physical and psychosocial functioning, and addiction. If accurate, these outcomes would indeed justify the withholding of opioid therapy for all but the most extreme cases of chronic nonmalignant pain.

Pharmacists, physicians, and other health care personnel practice within an integrated system of laws and regulations that influence many treatment modalities. Capitation, managed care, and other controls strain these relationships by mandating greater oversight of how health care is delivered. From a pharmacists’s perspective, any use of medication requites knowledge of three omnipresent factors: regulatory control, formularies (product selection), and economic decision making. My objective is to raise awareness of these issues as they relate to the prescription of pain medication and to pain management generally.

All practice-oriented drug law and regulation is based on the federal Controlled Substances Act of 1970. The Act, also known as Title II, is part of a much larger piece of legislation, the Comprehensive Drug Abuse Prevention and Control Act of 1970 (CSA). CSA was enacted to regulate the manufacturing, distribution, dispensing, and delivery of drugs or substances that are subject to, or have the potential for, abuse or physical or psychological dependence.

The problem is pain. Patients and their families tell the story:

He is your son. You love him. You want to help him in every way you can, but when he is in that kind of pain, you are helpless in a sense. Im his daddy. It was-what was I supposed to do for him? I felt, you know, helpless.

It terrifies you. You want to run away from it. Pain is something you wish would kill you but does not. Agony results from the pain that does not have the decency to knock you out.

[W]e had a good family, but how much can you watch? How much suffering can you watch from your child, your 7-year-old child, and still keep your mind?

I am a forty-six-year-old registered nurse who specializes in oncology care and education. I am also a patient who suffers from chronic nonmalignant pain, and this malady has been the most frightening, the most humiliating, and the most difficult ordeal of my life .

My purpose is to provide an update on recent Texas regulatory and statutory changes adopted , since the passage in Texas of the Intractable Pain Treatment Act in 1989 (Pain Act) (see Table l). First, I describe the rules adopted by the Texas State Board of Medical Examiners (TSBME) that authorize physicians to prescribe opioids for the treatment of pain (Pain Rules) (see Table 2). Second, I detail recent statutory changes that pertain to education of physicians and medical students about pain treatment. All of these changes attempt to create a better legal environment for the treatment of chronic pain in Texas.

Before describing the Pain Rules adopted in Texas, the question Why adopt rules, rather than simply ask TSBME to issue a policy statement? must be answered. Many states, most notably California, have issued policy statements that clarify for physicians the parameters within which they may treat pain? Policy statements, unlike administrative regulations, do not have the force of law.

The current debate about physician-assisted suicide and the question of whether patients would ask for such help if their pain were adequately controlled place in sharp focus the issue of undertreated pain. Studies have repeatedly documented the scope of the problem. A 1993 study of 897 physicians caring for cancer patients found that 86 percent of the physicians reported that most patients with cancer are undermedicated for their pain. A 1994 study found that noncancer patients receive even less adequate pain treatment than patients with cancer-related pain, and that minority patients, the elderly, and women were more likely than others to receive inadequate pain treatment. Although the problem of undertreatment of pain is multifaceted, I only address how state medical boards contribute to the problem and suggest possible remedies.

The literature on palliative care describes the numerous barriers that impede effective pain management and that result in the inadequate prescribing of pain-relieving drugs for terminally and chronically ill patients.

Physician concern about regulatory scrutiny as a barrier to appropriate prescribing for pain management has been identified and studied. A 1991 Pain Research Group survey demonstrated a need to provide updated information about opioids and pain management to state medical board members. Indeed, a national survey even showed a need to provide more education about pain management to oncology Physicians. Two approaches for responding to these concerns have been undertaken in several states by the state medical boards and the pain management community: the development and adoption of administrative policies designed to bring disciplinary standards in line with clinical practice; and the creation of education programs for state medical board members and staffs. Each can have a substantial impact on removing real and perceived regulatory barriers to effective pain relief.

As medical technology becomes more sophisticate the ability to manipulate nature and manage disease forces the dilemma of when can becomes ought. Indeed, most bioethical discourse is framed in terms of balancing the values and interests and the benefits and burdens that inform principled decisions about how, when, and whether interventions should occur. Yet, despite advances in science and technology, one caregiver mandate remains as constant and compelling as it was for the earliest shaman—the relief of pain. Even when cure is impossible, the physician's duty of care includes palliation. Moreover, the centrality of this obligation is both unquestioned and universal, transcending time and cultural boundaries.

Although universally acknowledged, pain is a complex phenomenon for both the patient and the caregiver, influenced as much by personal values and cultural traditions as by physiological injury and disease.

Recent studies have exposed the startling inadequacy of health care providers knowledge about and practice of effective pain management. For example, in one study, it was reported that 79 percent of a random sample of 454 medical-surgical inpatients experienced pain during hospitalization, and that 58 percent of patients with pain considered the pain horrible or excruciating. In another study, 67 percent of 2,415 randomly selected hospitalized patients had pain during the twenty-four hours prior to being interviewed, and 50 percent reported pain at the time of the interview. In a study of seriously ill hospitalized patients reported in 1996, half of the patients complained of pain, and one-sixth reported that they experienced extremely severe pain at least half the time. According to one literature review, 75 percent of cancer patients have reported suffering pain, and one study estimates that 25 percent of cancer patients die with severe unrelieved pain. Chronic nonmalignant pain has been described as an extremely prevalent problem, and over two-thirds of nursing home residents experience serious pain.

Many advances in public health and medical technology have contributed to the improved wellbeing and overall longevity of Americans. Such benefits, however, have been offset by a change in the nature and prolongation of the dying process. Daniel Callahan offers a challenge to caregivers in his observation of violent death by technological attenuation, and he sets an agenda to identify a more appropriate approach to the needs of the dying.

Over the past quarter century, hospice has increasingly been used as a resource for care at the end of life. However, according to 1995 estimates by the National Hospice Organization (NHO), hospice care presently accounts for only about 15 percent of the care of terminally ill patients in the United States. We will review issues of access and use of hospice services and examine the various institutional, professional, societal, and cultural barriers to hospice principles of care, and consider various options to promote optimal care at the end of life.

We have always had the ability to commit suicide or request euthanasia in times of serious illness. Yet these acts have been prohibited by the Christian tradition from early times. Some Christians, as they see relatives and friends kept alive too long and in poor condition through the use of current medical powers, however, are beginning to question that tradition. Are assisted suicide and euthanasia compassionate Christian responses to those in pain and suffering who face death? Or are they ways of isolating and abandoning them, of fleeing from Christian compassion, rather than expressing it?

The Committee on Medical Ethics of the Episcopal Diocese of Washington recently issued a report addressing assisted suicide and euthanasia. These matters cry out for religious contributions and perspectives, the Committee believes. The group recognizes that religious voices should not determine public policy, but believes they should be heard as we develop a social consensus about assisted suicide and euthanasia.