Despite advances in cancer treatment and symptom control, pain remains an undertreated symptom for many cancer patients, along with fatigue and dyspnea. Organizations can use the suggestions highlighted throughout this book as a starting point to improve care of dying cancer patients. Improvement teams can work to train health care providers about the usefulness of early referral to hospice and palliative care, the importance of pain assessment and treatment, approaches to advance care planning, and ways to support patients, families, and loved ones.
Significant progress has been made in treating cancer pain. New medications and delivery systems have been developed to improve efficacy and compliance. Advocacy has increased for the appropriate, aggressive use of opioids and for increased physician education about pain management (IOM, 1997; AHCPR, 1994). There are high expectations that pain can be controlled in the vast majority of patients. But significant challenges remain. For reasons described throughout chapter 3 (on pain), groups must attend to the ongoing problem of uncontrolled pain among some cancer patients.
Despite standards for cancer pain management (Zech et al., 1995; AHCPR, 1994), many studies report inadequate treatment (Portenoy, 1992; Du Pen, 1999; Institute of Medicine, 1997). Many physicians lack knowledge about the fundamentals of pain management (Sloan et al., 1998; Cleeland et al., 1986). Elderly and minority patients with cancer pain are at particular risk for receiving inadequate pain management (Cleeland et al., 1997). Patients, physicians, and caregivers continue to fear addiction (IOM, 1997). Physicians worry about regulatory discipline for prescribing opioids (Joranson and Gilson, 1988; IOM, 1997). Lack of understanding about pain management can lead to unfortunate, inaccurate associations between pain control and assisted suicide (for example, the proposed Lethal Drug Abuse Prevention Act of 1998).
Like pain, fatigue is so common at the end of life that it has been seen as a natural consequence of dying, with relief an infrequent option. Fatigue, which can so reduce quality of life, has not been seen as a symptom to be diagnosed, researched, or treated. Yet fatigue is one of the most common and debilitating symptoms in the final months and days of cancer patients' lives (Kuuppelomaki and Lauri, 1998; Cleary and Carbone, 1997; Vogelzang et al., 1997; Coyle et al., 1990).
Although fatigue may be caused by undiagnosed depression (another symptom frequently and incorrectly dismissed as an obvious, and untreatable, companion to terminal illness), other factors may contribute to it. Side effects of medication, sleep deprivation, and inadequate nutrition can cause fatigue, yet their effect may be reduced through interventions tailored to an individual's preferences and disease course. Patients and families, as well as providers, might want to check a Web site devoted to cancer fatigue: http://www.cancerfatigue.org, where visitors can post questions to oncology nurses; learn more about the causes, symptoms, and management of cancer fatigue; and search for educational events in their communities.
Often provider and family education is appropriate, but education alone rarely leads to quality improvement. Only when participants are already motivated to change is there an eagerness to learn that translates into changed behavior. Even so, education can be a useful step in enhancing provider knowledge and skills. Quality improvement teams can work to train physicians and nurses on the need for ongoing pain assessment and aggressive responses to intolerable pain intensity levels.
Many Breakthrough Series teams developed training programs to address problems such as pain and symptom management. In addition, many professional associations and public agencies are developing curricula on end-of-life care, including state-of-the-art pain management. For instance, the Department of Veterans Affairs has launched a systemwide program titled "Pain as the Fifth Vital Sign" and is funding a faculty leader program to develop end-of-life care curricula.
Other professionals, including nursing home administrators and accreditation surveyors, need to learn more about appropriate pain and symptom management. Anecdotes describe nursing homes in which opioids are never administered. Imagine the care provided to patients with severe pain in such institutions: Either pain goes untreated or patients are admitted to hospitals. This problem occurs when some nursing home staff fear that increased use of opioids and psychotropic medications, along with the decreased use of more aggressive (albeit futile) measures, will increase the number of deaths and create suspicion that death was hastened. The fear of being vulnerable to citations and claims of poor care actually causes these groups to provide poor care.
Health care professionals, like patients and families, need to distinguish between developing tolerance to, physical dependence on, and addiction to pain medications. There must be an expectation of "medical equanimity" - that is, an expectation that issues of pain and pain medications, especially opioids, will be addressed in a manner that does not increase patients' and families' worries or fears (Ferrell, 1991).
Many cancer patients are debilitated by fatigue. Despite the dearth of research on relieving fatigue, organizations can apply the Plan-Do-Study-Act model to improving care of patients who are overwhelmed by fatigue. For instance, teams might begin by regularly assessing patients for their fatigue level and its effect on their quality of life. Providers might discuss fatigue and ways to cope with it, then document recommended treatment and its effect.
In the course of improving care for dying cancer patients, organizations can begin to focus on accountability. Teams might consider making - and keeping - promises to patients and families. (Sample promises are described in chapter 2.) As groups test new ways to deal with old problems, leaders can establish ways to measure compliance.
Improvement teams will find many ways to measure quality improvement for pain management; for instance, they can measure the daily percentage of patients with pain intensity below 4 (on a 0-to-10 scale); the assessment of pain every shift (or more often) in hospital or other inpatient settings; the time between pain assessment and medication administration; and compliance with the WHO ladder for pain management.
Process measures for education might include attendance at mandatory educational programs; a passing score on a knowledge/attitude assessment examination; or documented continuing education credits in end-of-life care.
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This online version of the book Improving Care for the End of Life: A Sourcebook for Health Care Managers and Clinicians is provided with permission of Americans for Better Care of the Dying [ www.abcd-caring.org ] and Oxford University Press. All rights reserved.
For further information on quality improvement in end-of-life care visit The Palliative Care Policy Center [ www.medicaring.org ].