Follow Us On
Contact Us
info@ampainsoc.org847.375.4715
American Pain Society
4700 W Lake Ave
Glenview, IL 60025
Russell K. Portenoy, MD
Palliative care is rapidly evolving in the United States, both as a clinical approach perceived to be an aspect of quality medical care and as a specialized discipline for various healthcare professionals. Pain specialists have an exciting opportunity to be among the leaders who shape the future of this field. Equally important, pain specialists also have an obligation to contribute positively, case by case, as systems change and pain management for specific populations begins to be offered within the broader palliative care model. Whether leading the way or providing needed services, all pain specialists must understand the evolving definition of palliative care and the issues that will shape the operationalization of this definition in a very complex healthcare system.
All definitions of palliative care focus on patient populations with chronic diseases that may be progressive and incurable, among which are cancer, AIDS, neurodegenerative diseases, and advanced diseases of the heart, lungs, kidney, and liver. Palliative care specialists have variably referred to these diseases as life-threatening, life-limiting, or life-defining. All are chronic illnesses that are characterized by trajectories that often, but not always, lead to death. In some of these disorders, most notably cancer and AIDS, pain is highly prevalent.
Beyond the general agreement that the term palliative care relates to these populations, there is no clear consensus in the United States concerning the definition of the term or the practical elements that define it in institutional or home care settings. Agreement is growing, however, and this will accelerate the development of the field.
The World Health Organization (WHO) defines palliative care as follows: The active total care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms, and of psychological, social and spiritual problems, is paramount. The goal...is achievement of the best quality of life for patients and their families (World Health Organization, 1990). While emphasizing the importance of pain control, this definition also highlights the multiple needs that must be addressed when approaching these illnesses from a palliative care perspective. Even more striking, perhaps, is how this definition distinguishes optimal palliative care from end-of-life care or care of the imminently dying. Although the quality of dying is a critical concern of palliative care, the palliative care approach is focused more broadly on the quality of life. In this aspect, palliative care and pain management share an important foundation.
The WHO definition can be refined to provide additional guidance for the practical implementation of palliative care programs in the United States. Whether viewed as a broad model of care or as a clinical specialty, palliative care can be defined as a therapeutic approach dedicated to enhancing the quality of life of the patient and family throughout the course of a progressive incurable illness, and helping the patient and family face the prospect of death with the assurance that their values and decisions will be respected, comfort will be a priority, practical support will be provided, psychosocial and spiritual issues will be addressed, and opportunities for resolution and growth will be preserved.
Palliative care is an essential aspect of overall quality care for patients with life-threatening illnesses and should be pursued vigorously throughout the course of the disease. Palliative care needs should be addressed even when disease-modifying therapies (e.g., chemotherapy for cancer or protease inhibitors for AIDS) are being provided. Any clinician who contributes to the care of these patients should be able to assess the potential for these unmet needs. With the acknowledgment that pain often accompanies many other problems in medically ill patients, pain specialists who are consulted for a very specific issue can provide a comprehensive evaluation that addresses other factors that may be impairing patients quality of life. Although this assessment might indicate that pain is the overriding concern and that optimal pain management requires only simple interventions, it might reveal the need for a more sophisticated set of interventions that addresses symptoms other than pain, psychological distress, social or familial problems, or spiritual distress. In some cases, the pain consultant could help recognize and redress communication problems, ethical concerns, or deficiencies in the care plan for the complicated needs at the end of life.
Palliative care is also an evolving specialty in medicine and other disciplines, and some pain specialists have begun to accept the mantle of palliative care specialist and develop specialized programs. Not surprisingly, palliative care specialists historically have focused on the particular set of problems that arise at the end of life, which are often the most complex and, therefore, most likely to require a specialists attention. Palliative care specialists strongly endorse a team approach at this critical time and usually provide access to a group of professionals, all of whom have the capacity to provide specialized care for end-of-life concerns. This team usually involves one or more physicians (each of whom brings special skills, such as expertise in treatment of the underlying disease or knowledge of specialized medical therapies or rehabilitative approaches), nurses, social workers, and pastoral care providers, among others.
One of the most important challenges that must be addressed as new specialized palliative care programs develop is integration with the existing specialist program for end-of-life care in the United States hospice. The modern hospice movement, which began with Dr. Cicely Saunders in the United Kingdom, developed as a salutary response to the perceived overmedicalization of the health care provided to patients with advanced disease, particularly those facing death. The end of life was the focus of this hospice movement, but never exclusively so. In the United States, however, the end-of-life focus of hospice became institutionalized through the development of a reimbursement system for end-of-life care the Medicare hospice benefit that limited access to the system to patients designated by physicians as having less than 6 months to live. This hospice system, which had largely developed outside of mainstream organized medicine, is several decades old, focuses on home care, and potentially offers a wonderful approach to comprehensive end-of-life care.
Unfortunately, current hospice programs cannot meet the broad palliative care needs of patients with diverse types of progressive incurable illnesses. A variety of factors, some inherent in the system and others attitudinal, have created a situation in which late referral to hospice is the rule (the median length of stay in a U.S. hospice program is less than 20 days), and the services are used by a small minority of appropriate patients and families (40% of those dying of cancer and about 15% of all others enter a hospice program). In its current configuration, hospice in the United States cannot ensure access to a physician with specialized skills, cannot provide services to patients who wish to continue receiving aggressive disease-modifying therapy, and cannot incorporate costly palliative therapies.
Although it is possible that the future may bring wholesale changes in the way that palliative care services are reimbursed, the more likely scenario is that specialized programs in palliative care will take root in institutional settings and, if the leaders of these programs are wise, attempt to integrate with existing hospice programs. The goal is to provide access to an interdisciplinary team of specialists who can address the complex and changing needs of medically ill patients in the institution and at home, from early in the course of the disease until the end of life.
The challenges in accomplishing this should not be minimized. In most programs, the capitated system of funding for hospice care cannot support the broader palliative care model, and the funding needed to create integrated systems is, in many cases, tenuous at best. Yet, it is possible to create a system that links palliative care and hospice. My colleagues and I have attempted to do this in the Department of Pain Medicine and Palliative Care at the Beth Israel Medical Center in New York. Through this integrated approach, specialized hospice-like care can be offered earlier to patients with complex needs who are not hospice-appropriate, more appropriate referrals to hospice can be encouraged, patients can have added clinician continuity when using hospice services or decertifying from hospice, and deficiencies in hospice (such as the lack of access to a physician specialist) can potentially be reversed.
The leaders who have emerged during this process of program development have originated from relatively few disciplines, one of which is pain management. Pain specialists may be uniquely positioned to assist in program planning because of an economic reality: Successful interdisciplinary pain programs may provide the support necessary to allow well-trained professionals to pursue palliative care as well. As institutions and individuals struggle with the problem of resource planning for new palliative care programs, the possibility of a further linkage between specialized palliative care and specialized pain management may be a feasible approach. Again, the Department of Pain Medicine and Palliative Care at the Beth Israel Medical Center is an example.
This is an odd time of both doubt and opportunity for pain specialists in this country. On the one hand, there is uncertainty about whether the healthcare system will support specialized interdisciplinary pain management, and on the other, there is hope that the essential role of specialists in this area will expand as a discipline even younger than pain palliative care becomes recognized and grows. The opportunity will be lost, however, unless pain specialists acknowledge it and acquire the knowledge and skills they need to contribute.
World Health Organization (1990). Cancer pain relief and palliative care (p. 11), Geneva, Switzerland: World Health Organization.
