I received many emails from readers following my last blog "An Educated Consumer is the Best Customer... Even in a Hospital Setting," asking me what the best way is to "get educated" especially about the greatly varied and broad area of end of life and the ethical issues that arise at the end of life. There are many resources out there, but one of the best, and just off the press, comes from The Hastings Center, an independent, nonpartisan research institute, that addresses ethical issues in health, medicine, and the environment. The Hastings Center has been researching and writing about end of life issues since 1969. In 1987, they published the first edition of The Hastings Center Guidelines on the Termination of Life-Sustaining Treatment and the Care of the Dying. My colleagues, Nancy Berlinger and Bruce Jennings, and, their co-author Susan M. Wolf, have done an incredible job with these new Guidelines. And, while it should be a must-read for all who are in the healthcare profession, I believe it should also be read by the consumers of healthcare -- in other words, you.
This new Guidelines for Decisions on Life Sustaining Treatment and Care Near the End of Life, (Revised and Expanded Second Edition), includes insights from more than 60 experts in medicine, law, nursing and other disciplines, from the disability community, and from patient advocates. Along with the newer initiatives, like palliative care, it also includes important topics like: advance care planning, chronic illness, and continuing or forgoing treatment. It also has a section on pediatric issues that may affect the care of infants, children and adolescents. Also new is a section on the perspectives of disabled patients. This is the resource that gives accurate knowledge of laws and policies and the use of evidence-based practice guidelines.
Because we are living longer, but with chronic conditions that may add decades to our lives, we need to be educated as to whether we, as individuals, want to endure whatever might arise based on the chronic nature of a diagnosis. For some people, living longer, no matter what they have to endure is what they may want to choose. For others, quality of life may be more important than quantity of life. Being educated, and knowing what questions to ask your health care provider can give you knowledge that will enable you to make an educated decision. This book will give you the knowledge you need, and while it will not make you an "expert," it will give you the educational leg-up so that you can speak intelligently about what your wishes are for how you are treated as you near the end of your life. And, it empowers you to be a partner in your healthcare along with those who provide care.
As Margaret Pabst Battan, so remarkably wrote about in the article that appeared in the Sunday Magazine section of The New York Times, on July 17, one doesn't really know what decision one will make when faced with making a decision for a loved one who may be dying, but the importance of understanding the ramifications of your decisions, is a matter of living and dying.