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This book is for everyone:
Professionals who want to better advise their clients;
Medical facilities that want to serve their patients but avoid family disputes or ethical conflicts;
Individuals who must make choices for themselves and their families.
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Chapter Outline
SECTION I: THE RIGHT TO REFUSE TREATMENT
Chapter 1:What are our last rights? Court decisions, from the 1891 decision that led to a requirement for informed consent because we own our own bodies, to the landmark Quinlan and Cruzan cases that affirmed the constitutional right to refuse treatment.
Chapter 2: The times they are a-changin’ Social, cultural, and policy changes regarding end-of-life choices, including movies, Dear Abby, Dr. Kevorkian, Oregon’s vote to legalize physician assistance, and Terry Schiavo. Poll results, religious positions, and the evolution of professional organization policies (AMA, nurses, lawyers) are included.
Chapter 3: There oughta be a law! Laws about the right to refuse treatment and allowing advance directives include California’s Natural Death Act of 1976, the first in the nation, and the Patient Self-Determination Act passed by Congress in 1990. This chapter discusses the Act’s provisions, the result of it never being fully implemented or funded, and the recent introduction of new legislation that would standardize the use of advance directives across state lines. Differences in state laws and standards of evidence used in the courts are also identified.
SECTION II. WHY ADVANCE DIRECTIVES ARE NOT ENOUGH
Chapter 4:Whose life is it, anyway? Advance directives may not be honored by your doctor, the medical facility, or across state lines. The reasons run from religious differences to lack of education and training. Family conflicts, choosing the wrong surrogate, or even financial conflicts of interest can mean your wishes are disregarded. What can be done to get the R-E-S-P-E-C-T you deserve?
Chapter 5:Order in the court! Nobody wants to end up like Terry Schiavo, but it can happen, even if you have an advance directive. How do courts deal with these cases, and what can you do to make sure you are protected if that ever happens?
Chapter 6:Who can I turn to? Is there a profession especially trained to fill out advance directives? Lots of organizations distribute free forms tailored to each state’s laws, and many more offer paid services. But how can you assure you are doing the right things to have the best chance of your wishes being honored? This chapter discusses all these issues, and includes some suggested language that others have found helpful, plus language to avoid.
Chapter 7:A bridge over troubled waters No matter how well you plan, conflicts can arise when the time comes that your choices need to be made clear. Children may not agree, or your family may conflict with the medical facility. Outside third parties can attempt to intervene, maybe even the governor! This chapter is a brief overview of the kinds of conflicts that have happened in the past and how they were resolved. Mediation as a valuable alternative to court proceedings is discussed here.
SECTION III. YOU CAN ALWAYS GET WHAT YOU WANT! SUGGESTIONS TO MAKE SURE YOUR CHOICES ARE HONORED
This section of the book has twenty-five suggestions to help prepare for end-of-life decisions. It has practical advice, including ideas based on others’ experiences. For example:
Don’t wait! Complete advance directives well before the need arises, when you can discuss these issues with family, friends, and doctors before you are all confronted with the emotions of an end-of-life situation. When the time comes, everyone should feel prepared for what you want to happen.
Have frank discussions with family members, friends, medical providers, and others, so that if a court procedure is ever necessary your wishes will be clear.
Appoint a surrogate who will not be subject to family pressures or guilt – not a spouse or child, but rather a good friend, lawyer, other relative like an aunt or cousin – someone who will be able to step up and fight for you.
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