“Care of the Dying Patient will fill an important niche in any physician’s library. Well written and extensively referenced.”Allen B. Weisse, M.D., author of Lessons in Mortality: Doctors and Patients Struggling Together
Care of the Dying Patientby David A. Fleming
Although the need for improved care for dying patients is widely recognized and frequently discussed, few books address the needs of the physicians, nurses, social workers, therapists, hospice team members, and pastoral counselors involved in care. Care of the Dying Patient contains material not found in other sources, offering advice and solutions to anyone—professional caregiver or family member—confronted with incurable illness and death. Its authors have lectured and published extensively on care of the dying patient and here review a wide range of topics to show that relief of physical suffering is not the only concern in providing care. This collection encompasses diverse aspects of end-of-life care across multiple disciplines, offering a broad perspective on such central issues as control of pain and other symptoms, spirituality, the needs of caregivers, and special concerns regarding the elderly. In its pages, readers will find out how to •effectively utilize palliative-care services and activate timely referral to hospice •arrange for care that takes into account patients’ cultural beliefs •respond to spiritual and psychological distress, including the loss of hope that often overshadows physical suffering The authors especially emphasize palliative care and hospice, since some physicians fear that such referrals may be viewed by patients and families as abandonment. They also address ethical and legal risks in pain management and warn that fear of overprescribing pain medication may inadvertently lead to ineffective pain relief and even place the treating team at risk of liability for undertreatment of pain. While physicians have the ability to treat disease, they also help to determine the time and place of death, and they must recognize that end-of-life choices are made more complex than ever before by advances in medicine and at the same time increasingly important. Care of the Dying Patient addresses some of the challenges frequently confronted in terminal care and points the way toward a more compassionate way of death.
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Care of the Dying Patient
University of Missouri PressCopyright © 2010 The Curators of the University of Missouri
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Chapter OnePain Management at the End of Life Clay M. Anderson
Pain is a universal aspect of life and part of our sensory experience. It is necessary and adaptive. At the same time, it is a form of suffering that can affect the duration and detract from the quality of human life. Currently, there are both pharmacologic and nonpharmacologic tools that allow us to modify pain in such a way as to minimize its impact on quality of life. This is a miracle of modern medicine. Still, around the world as well as in the United States, most pain sufferers are inadequately treated, for a variety of reasons. In other countries, the necessary medications may not be available. In the United States, the barriers to adequate pain modification include regulatory burdens, cost, myths about pain and pain medicines, and lack of education for the public and for medical professionals.
Significant pain is present in the majority of patients dying of chronic diseases such as cancer, heart disease, lung disease, and diabetes. End-of-life care entails treating patients with these chronic diseases when the diseases are in their final phase, with the focus on bringing about relief of suffering and aggressively treating symptoms caused by the diseases. The common complaint of pain at the end of life is usually eminently treatable now, yet most patients remain undertreated. Here I will describe the problem of pain at the end of life and then show a way to optimally manage pain in this vulnerable population.
The Problem: Pain and Its Pathophysiology
Pain, one of many forms of suffering, is common at the end of life and is usually accompanied by a plethora of other symptoms, including dyspnea, nausea, confusion, anxiety, and depression. Pain seems to be the predominant symptom and also the most feared form of suffering. Pain at the end of life is protean and complicated. No two patients are alike in terms of the pathophysiology of their pain complaints or the psychosocial contexts of their pain. Pain at the end of life is undertreated, which is completely preventable. There is an ethical obligation in medicine and nursing to relieve suffering, and it is this directive that should lead physicians and other providers, as well as society in general, to bring down barriers and optimize pain management throughout life, but particularly at the end of life.
The pathophysiology of pain is complex, with new scientific discoveries in this area occurring frequently. I will now explain the basic concepts of pain pathophysiology so as to inform the rationale for optimal pain-management strategies. Nociception, the most upstream signal in pain physiology, occurs when tissue damage results in the stimulation of peripheral neuroreceptors in tissues, which, in turn, transmit a signal to a peripheral nerve. Transmission is the traversing of a pain signal from the nociceptor to the peripheral nerve to the spinal cord to the brain stem to the midbrain to the sensory cortex to the association cortex. Next is modulation, when, at least at the levels from the spinal cord and above, descending and local signals serve to either dampen or accentuate the ascending pain signals from the periphery. After modulation comes cognition, the final, summed subjective sensation of pain and modifying influences as experienced by the patient. Finally, expression is the communication of this cognition to others, verbally or nonverbally. Although simplistic, this schema allows us to get from a painful site in the body to the point where the person suffering the pain tells the provider about the pain in the context of his or her life and illness, and also shows us the levels at which any intervention might have an impact upon the pain.
Assessment and Therapy
Thorough assessment of pain is absolutely vital in order to treat it optimally and manage the disease causing it appropriately. This is true for diseases in the end-of-life phase as well as eminently curable conditions. Important factors in the assessment of pain include determining the following: location—subjective and anatomic description of where the pain is situated; chronicity—the duration of the pain complaint; temporal pattern—how the pain changes over time; severity—the intensity of the pain complaint, often measured from 0 to 10 (ordinal scale) or on a visual analog scale; character—how the pain is described, as sharp, dull, stabbing, burning, etc.; and associated findings—at the end of life, many other findings may be present, including dyspnea, cachexia, fever, depression, etc. A comprehensive approach to treating pain, one that takes into account both its characteristics and the results of the workup indicating possible etiology and/or a unique pathophysiology, is most likely to be successful.
Assessment, workup, and therapy sometimes occur nearly simultaneously in the real-life situation, but in general, an initial assessment and treatment is usually followed as soon as possible by a thorough workup in the outpatient or inpatient setting. The workup includes a physical examination—a good general examination with special attention to the neurologic and musculoskeletal findings; laboratory examination—judicious use of laboratory tests to confirm or refute suspected conditions causing the pain complaint (for example, infection or bone metastasis); radiographic evaluation—targeted radiographs including plain films, computed tomography, ultrasound, magnetic resonance imaging, and even positron-emission tomography; and other tests—for example, biopsies would be required to confirm a diagnosis of primary cancer or recurrence, and pulmonary-function tests or echocardiogram would address the severity of chronic obstructive pulmonary disease or congestive heart failure at a given point in time. This evaluation narrows the possible causes of pain, which are usually still numerous in dying patients, and allows for targeted therapeutics.
Therapy should occur simultaneously with the workup process, not upon completion of the workup. Either the outpatient or inpatient setting may be appropriate for evaluation and management of pain, depending upon the severity of the symptoms and the ease of control. The primary physician, nurse, psychosocial professional, and consultants should be involved as indicated from the beginning and should have the ability to communicate on a daily and preferably in-person basis. Through the workup and therapy, the target of the efforts should be the pain experienced and described by the patient.
Physicians and nurses both tend to focus heavily on the pharmacologic management of pain, but it is important to point out that there are multiple other therapeutic modalities that can impact pain in a positive way, and that the right mix of modalities for a successful therapeutic plan will be different for each patient. In addition to pharmacologic agents, other modalities include surgical intervention, other interventional techniques, palliative or radical radiotherapy, physiatry, massage, and electromagnetic therapy (for example, ultrasound or electrical stimulation).
The principles of pharmacologic therapy for pain are well-established and have not changed dramatically in over three decades. Unfortunately, these principles are not being applied uniformly or effectively even in the United States. The World Health Organization formulated an analgesic-ladder concept in 1986 to serve as a guide to practitioners around the world regarding rational, effective use of non-opiate and opiate analgesics. Opiates are the mainstay of pharmacologic therapy for pain at the end of life because they are safe, effective, and easy to use from a pharmacologic point of view. There is no maximum dose of any pure opiate agonist. These medications have several drawbacks, including regulatory constraints, limited supplies (in some countries), and the real but uncommon problems of abuse, diversion, and addiction. Opiates come in weak, moderate, and strong agents; single-agent versus combination products; long-acting versus short-acting formulations; and in forms for a variety of intended routes, including oral tablets/capsules, oral liquids, sublingual or transmucosal oral liquid or lozenge preparations, transdermal patches, suppositories, and solutions intended for the intravenous, subcutaneous, or intramuscular route. Most patients with chronic pain including at the end of life will do best with both a long-acting opiate formulation to prevent most pain and a short-acting opiate agent to treat episodic or breakthrough pain. It is relatively simple to choose an appropriate agent(s), dose, route, and schedule, and most of the time, with follow-up and adjustment as needed, this plan of treatment will be successful. If not, switching to another type of opiate often works. This is called opiate rotation, and it is successful about 50 percent of the time. In changing from one opiate agent to another, or from one route to another with the same or a different agent, an equianalgesic dosing table is quite helpful (see table 1.1).
In addition to opiates, other agents can have a direct or indirect effect on pain sensation or transmission. Traditionally, these other medications are called co-analgesics if they have analgesic properties on their own and adjuvant medications if they do not. The lines between these medications are becoming blurred as we learn more about their clinical and pharmacologic properties. Depending upon the type of pain—nociceptive, neuropathic, inflammatory, central, etc.—these other agents may add a great deal to what can be done with an opiate alone. In fact, on the WHO analgesic ladder, the first step is the use of acetaminophen or aspirin (or other nonsteroidal anti-inflammatory drugs [NSAIDs]) alone, without an opiate. These weak analgesics can control mild pain, even at the end of life, in many patients. Other categories of adjuvants or co-analgesic medications include anti-inflammatory agents (corticosteroids and NSAIDs), true adjuvants/neuromodulators (tricyclic antidepressants, anticonvulsants), psychiatric agents (antidepressants, anxiolytics, neuroleptics), and topical agents (lidocaine lotion or patches, capsaicin cream). Other medications are commonly utilized to minimize side effects from opiates and similar medications; these include stool softeners, laxatives, antiemetics, antacid medications, psychostimulants, and sedatives.
Adequate control of pain at the end of life requires aggressive application of multimodality therapy as needed. Of course, the most simple and straightforward plan of care possible would be the preferred one, yet many patients at the end of life truly require multiple complementary medications and other therapies. The plan should be as aggressive and multifaceted as is needed to achieve the goal of reasonable comfort or minimal suffering, along with maximal cognitive and physical function, in the context of the underlying disease process. Rapid, frequent reassessment is vital. Reassessment includes serial pain-scale measurements over time, repeat physician visits with physical exams, appropriate laboratory tests and radiographs, nurse reassessments, and analysis of home health and hospice evaluations. Each assessment should be followed by appropriate alterations to the plan of care, along with updated education of the patient and family caregiver. Changes in old symptoms or the appearance of new ones warrants more thorough investigations to look for treatable etiologies of the new symptoms. Methods of controlling the side effects of the opiates and other effective medications should also be reassessed along the way and changed accordingly.
The problem of undertreated pain at the end of life is still a major challenge for health-care providers. In the United States, all of the resources to solve this problem are at hand. For the vast majority of patients, the full and judicious use of these resources will result in a satisfactory to excellent outcome in terms of control of pain and related symptoms. In only a small percentage of patients will refractory symptoms remain or interventional procedures be required. Still, financial, regulatory, and attitudinal constraints remain as the main impediments to reducing the burden of pain at the end of life. Disseminating knowledge and effecting change in attitudes and policies must accompany the increased application of modern pharmacologic and nonpharmacologic therapies in a multidisciplinary setting. Although new agents are on the horizon, their absence should not be an impediment to success in this arena today.
Chapter TwoRelieving Pain: Today's Legal and Ethical Risks David A. Fleming
In June 2001, a California jury found an internist liable for reckless neglect in undertreating a dying man's pain and ordered the physician to pay $1.5 million to his patient's surviving family members. The finding of negligence in this case was not due to improper diagnosis or treatment of a disease, but was based solely on inadequate pain control. This landmark case marked the first time a jury had determined that physician neglect constituted elder abuse. The physician's argument in this case was that more aggressive treatment with narcotics would have hastened the patient's death by depressing respiration. His fear was that causing the death of the patient in this way would have placed him at risk for civil action, or could have led to disciplinary action or even criminal charges. This case has set a legal precedent. While physicians in this country historically have worried that they could face criminal prosecution or regulatory action for overprescribing controlled substances, this verdict warns that underprescribing may be just as risky legally. As observed by a representative of the Compassion in Dying Federation, "Failure to treat pain is something that physicians can now be held accountable for."
When facing the complexities of care at the end of life, everyone—patient, nurse, physician, and caregiver alike—endorses the importance of providing adequate relief from pain and suffering. This attitude of compassion and caring is the grounding principle of the healing profession. Yet health-care providers in this country still do not do a good enough job of relieving pain, even when the most up-to-date advancements in medical technology and drugs are available. Patients with terminal illnesses often fear pain and suffering more than death itself, which is why many express a desire to end life well before the indignity of suffering is upon them. Such fears are well founded. Between 10 and 50 percent of patients in programs devoted to palliative care report significant pain shortly before death. Investigators in an extensive nationwide study of end-of-life care found that even after an intervention designed to inform physicians about patient preferences and improve palliative care, there was no improvement in either pain control or other aspects of treatment for terminally ill patients.
The barriers to adequate palliative care are substantial. Society as a whole, and subsequently its health-care providers, tends to view the subject of death as anathema to good health care. Death is the enemy; it must be "defeated," not acquiesced to. Other barriers that frequently limit good palliative care are time limitations in busy medical practices and prognostic uncertainty by the health-care team as the patient deteriorates. More often, however, the barriers to aggressive pain control are fear of reprisal, a poor understanding about the use of narcotic drugs and addiction, avoidance of the subject, and otherwise inadequate communication between the patient and the provider.
Physicians understand the obligations of their profession and the oath that they took to help suffering people. However, end-of-life issues historically have not been emphasized in training, and physicians are often ill equipped to meet the challenge of palliative care. Physicians tend to fear reprisal if they are viewed as "giving up" too soon or as prescribing narcotics too heavily. There also may be unavoidable conflict between the expectations of the patient and family, who want pain medication, and the judgment of the physician, who fears professional sanction or penalties from the Drug Enforcement Agency (DEA) when individual prescribing practices are scrutinized. Increasing awareness of this concern has encouraged research and generated numerous published articles underscoring the need for greater understanding of the ethics and laws governing the use of opioids and other controlled substances, as well as better pain-management skills in physicians.
Excerpted from Care of the Dying Patient Copyright © 2010 by The Curators of the University of Missouri. Excerpted by permission of University of Missouri Press. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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Meet the Author
David A. Fleming, M.D., MA, FACP is Professor and Chairman of the Department of Internal Medicine and Director of the Center for Health Ethics at the University of Missouri School of Medicine and Governor of the Missouri Chapter of the American College of Physicians.John C. Hagan III, M.D., is Editor of the journal Missouri Medicine and practices in Kansas City.
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