Care of the Dying Patient

Introduction - David A. Fleming and John C. Hagan III

Introduction David A. Fleming and John C. Hagan III More than two million Americans die every year. Healthcare providers are therefore forced daily to confront often agonizing decisions that must be made for dying patients. Patients and their families face difficult choices about the “quality of death” that dying will have and the kind of care they need and want at the end of life. Though death can be dramatically delayed by the ever-expanding capabilities of medical technology, ultimately, death cannot be indefinitely postponed. Unfortunately, the culture of medicine has been slow to accept this reality. Physicians and family often reluctantly and belatedly accept death when further treatment is irrefutably futile. This delay in acceptance tends to delay referral to hospice and palliative-care services at a time when dying patients need them the most. In addition, when death is imminent, physicians may be prone to withdraw from their patients, feeling that their skills of diagnosis and treatment have failed and they are no longer needed or wanted. Paradoxically, trust and ongoing commitment by physicians to care for patients are never more important, or more needed, than when death looms. Over the past several years patients and health-care providers both have recognized these concerns and are developing greater understanding about death and dying. Physicians are now learning the importance of knowing and respecting the wishes of their patients, and they are 1 2 Care of the Dying Patient optimizing care at the end of life, even when further treatment is futile in terms of prolonging life. The American Medical Association’s 1995 Study to Understand Prognosis and Preferences for Outcomes and Risks of Treatments (SUPPORT) documented that dying in this country is unnecessarily painful and costly and that physicians often do not understand or respond to patients’ wishes. In 1997 the Institute of Medicine reported, “People have come to fear a technologically over-treated and protracted death and dread the prospect of abandonment and untreated physical and emotional stress.” In 1996 the Robert Wood Johnson Foundation launched “Last Acts,” a national campaign to promote improvements in care of patients near the end of life. This initiative has promoted changes in health policy and communication with health-care providers and consumer groups about the need to optimize end-of-life care. The Last Acts campaign is working to ensure that seriously ill and dying patients receive the best care available and have the fullest understanding possible about the options available to them. Collectively, these are “quality-of-death” issues. In attempting to address these pressing concerns, the authors of this text offer a series of writings, many of which were originally published as a series of acclaimed articles in the Missouri Medicine medical journal, to further elucidate the issues and offer solutions to providers, patients, families, and caregivers confronted by incurable illness and death. All physicians and care providers must learn that relieving pain and physical suffering, though important and a major challenge, is not the only concern when caring for dying patients . Providers should also know when and how to effectively utilize palliative-care services and to refer patients to hospice in a timely manner. Though increasingly important, these concepts are still poorly understood. All must learn to be responsive to the needs of our patients resulting from their cultural and spiritual or religious beliefs and remain sensitive to the differences that exist in these areas. Physi- 3 Introduction cians and other providers must also be prepared to address the often agonizing forms of spiritual and psychological suffering that dying patients endure, including the loss of hope that often overshadows physical suffering. We also address the burden of caregiving that is typically provided by untrained family members. This must be considered by the health-care team as caregivers become increasingly involved in the coordinated care and treatment of their loved ones near the end of life. Caregiving is an increasingly important concern and extends well beyond the care of patients with cancer. The United States and most developed countries have aging populations with an exponential growth of patients diagnosed with Alzheimer’s disease. This is a major consideration in addressing the allocation of health-care resources and the compelling challenge that physicians have to help older patients and their families make end-of-life decisions. As our country ages, we will have an ever-larger number of patients with cancer and other forms of terminal illness...