POLICY/QUALITY: Reclaiming the right to die; book review by Mitchell Berger

Mitchell Berger volunteered to write a review of  William Colby’s, Unplugged: Reclaiming Our Right To Die in America (2006, American Management Association, 272 pp., $24.95 hardcover), and an excellent review it is too:

High-profile legal cases such as those involving Karen Ann Quinlan, Nancy Cruzan and Terri Schiavo and their families coupled with improvements in medical technology have forced growing numbers of patients and their family members, health care providers, judges, lawyers and legislators to confront difficult end-of-life dilemmas. Because of his own background as an attorney for the Cruzan family for four years, supporter of the hospice movement and contributor to the 1990 Patient Self-Determination Act, which requires hospitals to inform patients in writing about health care advance directives such as living wills, attorney William Colby, author of Unplugged: Reclaiming Our Right to Die in America, brings unique insights to his discussion of these cases, evolving medical technology and the overarching issue of end-of-life care in America.

Colby’s book includes an extensive discussion of the Quinlan, Cruzan and Schiavo cases. He describes how relatively recent advances in scientific knowledge, such as an improved understanding of brain function, brain death and vegetative states and advances such as cardiac defibrillators, artificial respirators, feeding tubes, percutaneous endocscopic gastronomy (PEG) tubes (a method of providing nourishment to patients using a tube inserted through an endoscopic procedure which is simpler than standard feeding tube insertion), have led to new challenges as society struggles to reconcile the benefits of these technologies with respect for the individual’s quality of life and right to live and die in a manner reflecting their beliefs. Colby devotes an entire chapter of his book to explaining the ethical and medical issues associated with feeding tubes and PEG; he explains how PEG tubes, originally intended for pediatric patients, are now used routinely in cognitively impaired elderly persons who can no longer eat on their own.

While many people would want every reasonable measure taken to prolong and maintain their life regardless of their condition, many others would not want to live in a state where they are no longer able to respond to their loved ones and the world around them. When Nancy Cruzan, then a 25-year old Missouri woman, was left in a persistent vegetative state following a car wreck in 1983, her father authorized insertion of a feeding tube. Colby explains that in a persistent vegetative state a patient may be awake and even smile or move their eyes, however these movements are completely involuntary and in fact the patient has “no thinking, no feeling, no consciousness” (p. 10). When it became clear as first months and then years went by that Nancy Cruzan would never recover from her condition, Cruzan’s family tried to act on their shared “belief that  [she] would want the feeding tube removed” (p. 89). After many years of legal proceedings both in Missouri and at the federal level, including a U.S. Supreme Court decision in 1990, the family eventually was granted the right to remove the feeding tube based on evidence of what Nancy Cruzan herself would have wanted. Extensive publicity surrounded this case – indeed the Cruzan family allowed PBS’ Frontline to document their experiences — and Colby describes how the Cruzan family’s experience altered public opinion about end-of-life care both in Missouri and elsewhere and encouraged Missouri Senator John Danforth and others to sponsor the Patient Self-Determination Act.

In perhaps the most interesting portion of his book (Chapters 1-3), Colby provides an informative and balanced discussion of the most recent and perhaps controversial end-of-life care case involving Terri Schiavo. Unlike Nancy Cruzan’s family, Schiavo’s relatives were bitterly divided about what she would have wanted and what was best for her. Colby discusses his own approach to death and dying issues and even includes his own health care power of attorney as an example for others (Chapter 10; Appendix). However, he also notes the limitations of laws and legal documents. For instance, Colby describes the “institutional glide path” which dictates that many hospital patients will receive “aggressive,” often unwanted end-of-life medical care; the “glide path” reflects the tendency of health care providers and institutions to treat patients in customary, technology-intensive ways due to such factors as medical education, institutional culture and fear of litigation.

To help ensure that the end-of-life care we receive reflects our values and desires, Colby emphasizes the importance of talking at length with family members, friends and health care providers about how we would want to be cared for if our capacity to make our own decisions should ever be impaired by illness or injury. This dialogue will help ensure that our family members and health providers are not forced to confront complex dilemmas in tense and emotional circumstances with their loved one’s wishes unclear.

Colby is a strong supporter of hospice as one option for end-of-life care. Indeed, he serves as a Senior Fellow of the National Hospice and Palliative Care Organization in Washington, D.C., and the foreword to his book is contributed by that organization’s chief executive officer. He explains the rise of hospice care, which he characterizes as a “hidden jewel,” and notes that growing numbers of patients are opting for hospice (750000 of 2.5 million Americans who died in 2005). Hospice emphasizes communication between patients, families and health care providers, symptom relief and palliative care (Chapter 15).

Though he clearly has strong opinions, Colby’s book is fair and even-handed in his treatment of the major legal and ethical issues and he includes chapters devoted to concerns about expanded recognition of the “right to die” expressed by religious organizations and persons with disabilities. The book is well-researched and well-documented, with numerous end notes, citations to outside sources, suggestions for further reading and contact information for such relevant organizations as the National Family Caregivers Association and National Institute on Aging. Overall, Colby’s book provides readers with excellent background about the key legal and scientific issues, good ideas for how to approach end-of-life care and strong motivation for initiating these sometimes awkward but critically important conversations with family members and health care providers.

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  1. Thanks for the review. This hits pretty close to home. I just spent 10 days in Israel helping to care for my 97 year old father-in-law who wanted, no that’s not strong enough, insisted on dying at home. He had cancer of the oral cavity. He had refused any more treatment. He begged us to “just give him something” to help him die. He quit eating and drinking. He really couldn’t keep anything down. Most folks who offered us advice said, “Why don’t you take him to the ER for an infusion. He is going to get dehydrated.” His doc warned us not too give him too much fentanyl for his pain…”it will make him confused,” she said. So? Dehydration is not a bad way to go. You get uremic and confused and slowly fade away. And, what’s wrong with getting stoned on narcotics when you are 97, have untreatable cancer, and you want to die. I used to think the health care system was responsible for prolonging dying, but that is not the whole story. People have come to believe dying is failure…of health care, of care-giving, or living. Perhaps we need to start offering courses in the natural history of dying…hospice can help, but only if folks will avail themselves of it.