The new book from two sisters, one a lawyer and the other a doctor, challenges us to make important decisions when there is time to reflect, rather than in a moment of crisis, and, more importantly, how to make sure your wishes are followed.
My sister, Dr. Jeanne Fitzpatrick, has a remarkable story to tell. She has worked as an emergency room physician in small, mostly rural towns in Alaska, Washington, Oregon, Hawaii, and New Mexico. Unlike ER doctors on television, she rarely deals with multiple gunshot wounds or catastrophic freeway pileups. Instead, as many as a third of her patients are from local nursing homes—the infirm elderly, the demented, and the terminally ill. Jeanne sees many patients who have exhausted their enjoyment of life and want to die and who have even signed legal papers to that effect, but who are kept alive in a lingering state of suffering despite their clearly expressed wishes.
Death in the modern world is often an unnecessarily prolonged and painful event accompanied by medical technology that separates a dying person from the community in which he or she lives. While most of us clearly state that we prefer to die at home in our beds, 80 percent of us die in hospitals or nursing homes.
As an attorney, I have noted how often nursing homes and other caregivers ignore patients’ legal directives and needlessly prolong suffering at the end of life. Our book takes an open, honest look at this problem and offers a simple five-step Compassion Protocol that people can follow in making the decision to cease medical intervention and allow a natural death to occur. Of course, Advance Directive forms are necessary, but legal forms are dry, static things that cannot hope to define the parameters of an event as individual and dynamic as death. Rather, our solution is communication-based and offers a series of integrative steps that anyone can follow for approaching life’s final event.
Death, this one certainty of life, inevitable and unavoidable, should not be hidden in the closet of social unmentionables. Many of us are dealing with our parents’ end-of-life issues: debility, dementia, nursing homes—the slow decline into dependence.
The current social and medical response to these issues often produces protracted pain and suffering. My sister and I know we can do better, and we invite you to join us in restoring natural death to its rightful place among treatment options at the end of life.
For those people more interested in quality of life than quantity, we offer a straightforward plan for achieving a natural death when you are ready. What do we mean by a natural death? If you rule out homicide and suicide, all other deaths are from natural causes. But some deaths are more natural than others. From antibiotics to the latest gene therapies, advances in medicine have both increased our life span and brought relief from common ailments. Modern medicine can keep us alive a really long time, which is a good thing—except when it isn’t. In this book we use natural death to refer to dying from an illness or infection that a patient chooses not to have treated because that patient felt it was time to die.
Sound radical? It may, but the idea has some precedent in other areas of medicine. Natural childbirth was a radical change from maximum to minimum medical intervention in the process of birth. As a result of the “natural childbirth” movement, childbirth as a life event was rethought and literally reconstructed so as to minimize stress on the infant, mother, and father. Our country has been on the verge of a “natural death” movement since the late 1970s. Some progress has been made with advances such as the growth of hospice care and the advent of Do Not Resuscitate (DNR) orders. But all too often people still do not get the timely natural death they would prefer, as the stories in this book illustrate and statistical evidence supports.
My sister and I wrote this book to bridge the gap between the way most of us would prefer to experience the end of life and the way modern medicine treats dying and provide all the information you need to create a Contract for Compassionate Care, which lets you choose what medical treatment you want or don’t want at the end of your life.
Creating Your Contract
The Contract for Compassionate Care is a simple one-page form important to anyone at any stage of life and presents a new option that is omitted from most current Advance Directives: It gives you the option to choose a natural death. The Compassion Protocol is a process that provides structure for your thinking as you face this difficult decision. It contains five simple steps for planning your end-of-life care. The first step educates you about the options you will have if you want to let a natural death occur. These options are simple medical treatment choices that reject the priority of keeping us alive as long as possible.
In the second step, we lead you through the decision-making process of choosing which option is right for you; you also learn the importance of having a Health Care Decision Maker whom you trust to implement your choices if you become mentally incapacitated.
The third step is all about communication, how to open a dialogue between you and your family, friends and health care professionals regarding your end-of-life care. This dialogue is all too often absent in our society.
In the fourth step, you will sign your Contract for Compassionate Care and formalize the choices you have made. By the time you get to the fifth step you have done the hard work. All that is left is planning the kind of death you want.
Perhaps the Compassion Protocol’s greatest strength is that it is communication based. One recent study found that 80 percent of designated health care decision makers have never discussed end-of-life treatment options with the family member who trusts them to make their choices. In completing the Compassion Protocol you can avoid this predicament by ensuring that all the important people in your life know what you want, and are prepared to carry out your choices.
Reprinted by arrangement with Penguin, a member of Penguin Group (USA) Inc., from A BETTER WAY OF DYING: How to Make the Best Choices at the End of Life. Copyright © Jeanne Fitzpatrick and Eileen M. Fitzpatrick, 2010.