Biography Stephen Kiernan was born in Newtonville, NY the sixth of seven children. A graduate of Middlebury College, he also received an MA degree from Johns Hopkins University and an MFA degree from the University of Iowa Writers' Workshop. Over two decades as a journalist he has won 40 awards, including the Bechner Institute's Freedom of Information Award, the Gerald Loeb Award for financial journalism (two time commentary finalist) and the 2003 George Polk Award. He has taught at Middlebury College and the New England Young Writers Conference, and has worked on the staff of the Breadloaf School of English and the Breadloaf Writers Conference. He has served on the board of The Brautigan Library and the Young Writers Project. At present Stephen is travelling the country, speaking to civic groups, colleges, senior centers and churches about ways to improve the end of life. Stephen has also performed on the guitar for many years. In addition to recording 3 CDs of solo instrumentals, he has composed music for dance, the stage, documentaries and TV specials. He lives in Vermont with his two amazing sons. Author Q&A Q. In Last Rights you explain that dying in America has changed. How so? How has this change affected not only the way that we die, but the way that we go through life? Do you feel that we are currently at a cultural moment where we are anticipating our mortality for the first time? The opportunity that Americans now have to shape their final days is unprecedented in human history. Thanks to medical advances in defeating sudden causes of death (heart attacks, strokes, etc.), more and more people are dying of incremental illnesses (cancer, Alzheimer's, etc.). With this slow process, people have an opportunity to live meaningfully right to the last minute. They can mend fences, express love, arrange their finances and set their spiritual house in order. This clarifying of priorities does not happen only to dying people; it also affects their friends and families. In turn their grief is softened, because providing a person with a dignified, pain-free, peaceful final chapter creates a deep and lasting gratification. Last Rights arrives at a time when baby boomers are experiencing the death of their parents and for the first time realizing their own mortality. Since the baby boomer generation has made a major cultural impact at each stage of their lives, what effect will they have on dying and end of life care in America? Can baby boomers push end of life care from being a medical issue to being a consumer issue? Remember in the 1990s, when HMOs required women to leave the hospital within 24 hours of delivering a baby? Health consumers rebelled, demanded greater flexibility, and won the option of a 48-hour hospital stay through an act of Congress. It will take a similar level of consumer insistence to improve end-of-life care. Too many people today experience physical and emotional suffering at the end of their lives that is needless and avoidable. Too many laws and health care policies stand in the way of a pain-free experience for patients. It will take an engaged and energized populace to bring about the change that is necessary. So far that hasn't happened because death is such an isolated experience in this culture. About 6,500 people die in America every day, but these events occur one solitary family tragedy at a time. Last Rights is the first book to tell the stories of ordinary Americans, in all walks of life, as they and their loved ones encounter gradual dying. It shows how these isolated deaths -- good ones and bad ones -- exemplify what millions of Americans have experienced. Until Last Rights, boomers had no way of knowing why their mother died well or their father died badly. Equipped with this information, they will be empowered to demand improvements. The passionate emotions people feel about deaths they have experienced will provide a mighty force for change. Q. In Last Rights you prove that dying is a four part event, one part biological, one part social, one part financial and one part spiritual. Can you break down what this means to a person's overall needs when preparing for death? Today people make many preparations for a world without them in it, but this work is nearly all financial - life insurance, wills, etc. Money is not the most important concern, though, when it comes to the end of life. Biologically, too few people are preparing living wills or advance directives, which can govern their medical care once they are unable to speak on their own behalf. A seven-word advance directive - "Don't put me on a feeding tube" - would have saved Terri Schiavo and her family 15 years of conflict and grief. With gradual dying, it becomes increasingly important for people to exert control over their medical care, to make certain their treatment reflects their values. American culture is unique in the extent to which death and dying are taboo, so nearly everyone today reaches their life's end unprepared socially and spiritually. But this is another area where gradual dying presents an opportunity. Now, as never before, there is time for preparation. A son whose father died of a heart attack a generation ago had no chance for a meaningful final connection. That same son today, as his father wanes over a span of months or years with cancer, has all manner of ways to provide care, to make peace, to offer solace, to deliver lasting comfort. Father and son therefore have the potential to experience a new kind of familial love. Q. What happened within the medical community, the legal community, and insurance companies that forced dying and treatment of death to move in opposite directions? How much of the medical care, or lack thereof, that patients receive is based on a fear of law suits? Basically it is a problem of a delayed response. When infectious diseases were the leading killers, medicine spent years developing treatments and vaccines - eradicating illnesses like polio and smallpox. When heart attacks and strokes were the main causes of death, it took years for society to invent defibrillators, train EMTs, deploy E-9-1-1 emergency phone services, teach CPR courses, etc. These measures were successful too. The shift from sudden to gradual dying has occurred over about 25 years, and health care is responding too slowly. Medical students don't learn care of the dying. Medical textbooks don't even mention it. Doctors aren't paid to help people plan for their care. Health insurers - and the government's Medicare program is the worst offender - create disincentives for higher quality end-of-life care. And hospitals are designed to prolong life no matter what it costs and no matter how torturous the patient's experience may be. Fear of being sued is one of many reasons doctors today feel compelled to everything with a patient that they can, regardless of its futility. Only when health consumers take charge will end-of-life care reflect patients' values, protect their dignity, and provide their families with the gentle caretaking opportunity that can knit everyone more closely. Your own family's personal experiences with dying and death add a strong foundation to not only your inspiration to write Last Rights, but the power of the book's message. What did you learn about dying from the death of your parents? How did your father's death help your family shape and plan your mother's passing? My family had only good intentions when my father was dying. We didn't realize that his situation was futile, that he would never recover. We paid no attention to cost. We erroneously thought that medical care was the same thing as love. So we endorsed his torture, indulged the ICU's predisposition to involve ever-greater technologies, and even advocated for greater interventions and prolonged indignities. At the end he was so bloated and medicated, he did not even look like himself. And I had to say goodbye to a huge, silent form while the machines whirred and clicked. When my mother died five years later, she was at home, in her bed, with family at her side. During our last conversation two days before, I spoon-fed her applesauce laced with medicines - one of the more intimate experiences I ever had with her. There was nothing left unsaid, no issues or problems, just peaceful acceptance and poignant caretaking. Afterward, my grief at my father's death was compounded by guilt and regret. Yet I felt comfort and gratification about my mother's dignified end. What my family learned, American society needs to learn. Q. Much of Last Rights focuses not just on what terminal patients need, but what their families need. Can you suggest five questions that families should ask doctors upon learning that a loved one needs terminal care? 1. What are some of the directions my loved one's illness could take, and how can we plan for those possibilities in advance? Families make better decisions when they can think calmly and clearly, rather than in a time of crisis. 2. How will you know when medical interventions are no longer sustaining life but merely delaying death? Families need to be active partners with health care providers, and maintain control of decisions rather than giving the reins completely to doctors. 3. What is your philosophy about controlling pain? Especially today, when pain medicines are better than ever before, families need to know whether their loved one's doctor will use these tools. Many doctors' training did not include pain management, and most health institutions do a substandard job of reducing pain. Families will need to be advocates. 4. Who will be in charge overall of my loved one's care? Families need to insist on having a medical point person they can speak to and hear from. They also need reassurance that someone will be in charge, to prevent dueling specialists who refuse to meet (a surprisingly common situation). 5. What accommodations are you willing to make so that we can be active participants in our loved one's care? Surveys have found that doctors consider families the primary obstacle to delivering good terminal care. They are mistaken; increasingly families shoulder the caretaking, financial and emotional burdens of a loved ones dying. They are essential partners, and need to establish that role with doctors early in the process.   Q. To research Last Rights you visited hospice care workers and patients. Do you feel that people have the wrong impression of what hospice care is (and isn't)? Can you list 3 things that hospice care is, and three things that it isn't? Hospice is a philosophy of care that puts the patient at the center, that considers comforting as important as curing, that addresses emotional and spiritual needs as well as medical ones, and that engages and supports families from diagnosis through bereavement. Hospice is not alternative medicine, but rather uses established medical principles and tools. It is not a sign of surrender or of hastening life's end, but rather seeks to make life of the highest quality and greatest hope for as long as possible. Hospice is not a kind of nursing home or other inpatient facility, but rather involves nurses, aides and volunteers to enable patients to complete their lives at home among loved ones.   Q. While you were working on Last Rights you became personally involved in the deaths of people you were interviewing for the book. What is the lasting impression writing Last Rights will leave on you? What is the most powerful thing you personally learned from your own book? There were many lessons for me actually, which I why I chose to close the last chapter with several of the most striking ones. The first lesson was that I realized I am going to die. But this was not depressing news. Instead it was inspirational, encouraging me to strengthen my relationships, change jobs, reprioritize my parenting, and make the utmost of the life that I have been given. I also learned a great deal about compassion, because spending time with people who were dying engaged my heart so completely. Whether I was interviewing a person on her deathbed for example, or joining in the family's hug after she had died, the usual reporter's objective distance simply wasn't possible. Being in the presence of a dying person calls forth a gentleness, an acceptance and generosity. I realized that remembering the mortality in every person enabled me to treat people with greater compassion. I even harbor an idealistic hope that people, by reading Last Rights and thinking a little about the limits that exist on everyone's lives, will discover a greater capacity for compassion in themselves.