Feature Articles: End of Life
George R. Wilson, M.D.,
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| How does one define "End-of-Life"? Certainly it is an imprecise phrase that describes a period of time but fails to define when
that time starts. Technically, since no one "gets out of this alive", the end of life period could be the time between birth and death,
however, this is obviously too inclusive and serves no purpose when it comes to discussions about problems that relate to the "end of life".
The phrase is being used more and more in the medical literature, in the news media, by the lay public and now even by some
health-care providers to describe an ill-defined and difficult-to-quantify period of the human life cycle. So, what is the "end of life"? When
does it start, who does it include and what are the consequences of this transition in any person's life?
During the 2000 session of the Florida State Legislature, several bills were passed under the general heading of End-of-Life legislation. Unfortunately the legislature did not define what it meant by the term "end-of-life" in terms related to age, condition, disease process or prognosis. Instead, the legislature used a term "End-stage condition", defined in FS 765.101 to mean "…a condition that is caused by injury, disease, or illness which has resulted in severe and permanent deterioration, indicated by incapacity and complete physical dependency, and for which, to a reasonable degree of medical certainty, treatment of the irreversible condition would be medically ineffective". While this definition does not make clear what "end-of-life" means in terms of time, it does provide some insight into what problems the legislature was trying to address. It is also important to note that no where in this definition, nor in the legislation, is end-of-life tied to either age or prognosis. This edition of Jacksonville Medicine is a multidisciplinary effort to qualify and quantify the issues and problems that are ubiquitous in the lives of patients and families who are confronted with the end of their life, whether that "end" occurs over a period of days, months or years. To facilitate a better understanding of "end-of-life", editorial license allows us to establish our own definition. "End-of-life" therefore, is that period in someone's life that follows an event that significantly alters how that individual lives the remainder of his or her life. This event must have adverse effect on the individual's quality of life, the event must result in a physical condition that is not expected to resolve or improve with time and/or the event must significantly impact the expected length of life remaining when compared to the norm. It is important to note that there are several things that are conspicuously absent from this definition. This definition makes no reference to age or prognosis, it does not address diagnosis, and there is no reference to how long this period might be. It applies equally to infants, children, young adults, middle age and the elderly. With an aging population, an expected increase in the size of various age groups, increased survival of children with serious congenital problems, increasing cost of health care and increasingly limited resources, it is absolutely paramount that the House of Medicine begin now to develop a strategy for providing effective and comprehensive end-of-life care in the future. In order to do this effectively, it is important to address many different aspects of end-of-life. To begin with, the quality of each individual's life must be a goal of any strategy. Providing cost effective, appropriate and timely treatment of curable disease is essential. But, recognition of the futility of some treatments and "cures" and the associated cost, in terms of quality of life, must become part of every health-care provider's thought process. Also, we must include health promotion and disease prevention, appropriate nutrition, provision for day-to-day activity and appropriate high quality long-term care as essentials. All of this must be coupled with a process that insures each individual has the benefit of an ethical decision making process and full protection under our legal system. This month's Jacksonville Medicine tries to address all of these issues. An article on ethical decision making at end of life gives physicians perspective as they work with their patients in deciding the best course to take in addressing health-care needs at end-of-life. Legal issues that patients and health-care providers face as end-of-life decisions are made are extremely important. Insuring that every opportunity exists to provide the best quality of life within the legal framework is essential. A significant issue in providing quality at the end-of-life is good management of pain and other symptoms. Providing this becomes even more difficult when one considers the many variables that define quality for different individuals. Having a consistent and reliable measure for pain and other symptoms has been a challenge. The University of Alberta has developed a grading system, designed to improve the pain assessment process and this is reviewed in this edition. Finally, articles on pain and symptom management for patients whose end-of-life measured in days or weeks (hospice patients) and those with end-of-life measured in months and years (long-term care) are included. Certainly end-of-life issues are many and complex. It is only reasonable to expect that these will increase dramatically as the at-risk population continues to grow. While this edition is not intended to address all of the issues nor even suggest these are the only solutions, we hope that it serves as a stimulus for a new appreciation of what will soon become a national crisis unless positive and definitive action is taken now. May, 2001/ Jacksonville Medicine
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