How We Die in America

INTRODUCTION

If you're like most people, you want to live as long as possible, then die quickly and painlessly at home. That's probably not going to happen. Today, 80% of Americans die in an institution. In most cases, they don't die a "natural" death -- someone decides to let them go. Every day, 7000 Americans die by decision. This book is about who gets to make that decision, when, and how.

The article is written by William Colby, the family attorney in the Nancy Cruzan case -- the first right-to-die case heard by the U.S. Supreme Court. The book examines three landmark cases and what they imply about how we are going to die in the future:

• The 1976 case of Karen Ann Quinlan, whose parents had to go to court to have their daughter removed from an artificial respirator.
• The 1990 case of Nancy Cruzan, injured in an automobile accident, whose family fought for three years to have her feeding tube removed.
• The 2005 case of Terri Schiavo, who lived in a permanent vegetative state for 15 years before courts agreed to allow her to die. Colby was stirred to write UNPLUGGED by the Terri Schiavo drama.

In the excerpt, below, Colby illustrates the contrast between how we think we're going to die and how we're actually likely to check out. For example, though a quarter of Americans have a living will or medical directive, less than 5% of patients have a copy in their charts. Not that a living will does much good: two-thirds of physicians say they ignore living wills that contradict their own judgment. Isn't that comforting!

More information about the book, UNPLUGGED, and author William Colby, follows the excerpt. Thanks for considering this material.

Often the written law doesn't end up mattering much in decision making around our dying and death. Medical providers all have stories about living wills or health care powers of attorney not working as intended. A father only makes one copy of his living will, which he keeps in his safe deposit box at the bank, but he's now in a coma, and no one else has access to that box. Or a living will, patterned after a state law passed years ago, speaks mainly of life support and terminal condition. The doctor tells the family that the living will does not help in answering whether their now frail and increasingly demented father would want aggressive antibiotic treatment for pneumonia. Or, very commonly, a clear power of attorney or living will may exist, but the adult children are in conflict about what is "right" for mom, as they've been in conflict on most topics for many years. Medical providers faced with warring relatives usually find that the piece of paper cannot bring resolution to either the broken relationships or the "war" over mom's care.

During such times of difficult decision making, medical providers basically look for help wherever they can find it. They are trying to do what's right and don't have a lot of time or energy left to worry about the law. At a talk I gave in Chicago in the spring of 2005, a lawyer stood during the question and answer period and said he'd enjoyed the talk but worried about how my general advice might be interpreted for his state.

"In Illinois, for a living will to be effective, the language about refusing nutrition and hydration, by statute, must be in all capital letters," he said. We had a good discussion about the constitutional right to make decisions, which I believe would extend to the right to draft a reliable living will in your own words (and even, in my opinion, to exercise that right simply by expressing your wishes orally). Then we moved on. Afterward a nurse came up and said quietly, "I didn't want to contradict the lawyer, but we take anything at our hospice; forms they get off the Internet, handwritten living wills, even what family members tell us they said. We're just trying to get an idea of what the patient would want."

No doubt medical providers look for help wherever they can find it because the questions are complicated. As technology has proliferated, the questions related to its proper use, quite logically, have grown more complex. Judges will decide disputes that technology creates, like the Quinlan, Cruzan, and Schiavo cases, and legislators will pass laws regulating living wills and other documents. But the laws always will have a limited ability to guide families in deciding what is "right" when they face medical decisions for a seriously-ill loved one.

Each spring, lawyers and judges from Kansas City gather together in an Ozark mountain resort for a weekend of meetings and fellowship. I remember sitting at one of these meetings in the early 1990s on an outdoor terrace with a breathtaking view of a white-capped Ozark mountain lake far below, listening to a group of much more senior lawyers talk about when they thought the practice of law had "gone wrong." The obvious thread tying their complaints together was technology. The complaints moved back through time: computers that allowed cutting and pasting of documents had caused a flood of paper; all of it still had to be read. No, it started earlier, another said, with the IBM Selectric typewriter; no, Mag card machines; no, Dictaphones.

They were laughing, nostalgic about a simpler time. The oldest one there had been sipping his scotch and just listening, and then he cleared his throat. "You guys want to know where it went wrong? And I'm serious. Air conditioning," he said. "Before they remodeled the courthouse in, when was it, 1965, 1960? Anyway, it was too hot to do much in the summer, so everybody took it easy. Summer had a nice relaxing pace. We'd come in some days, others we'd play some golf. The damn air conditioning ruined the proactive of law." They all sat there quietly, apparently thinking about the dark side of air conditioning.

It would be interesting to reconvene this group now in 2005, twelve or so years later, and see if e-mail, the Internet, BlackBerry, document scanning, camera cell phones, and law books on CD had delivered to these men their technological promise of greater efficiency and more time with family -- or if they have, perversely, tightened the technological bind of these lawyers to their offices. We live in a time when it's nearly impossibly to fathom how deeply technology affects every part of our world, including medicine. This same discussion among the lawyers happens with doctors, too. A neurosurgeon who testified as an expert for me in the Busalacchi right-to-die case in St. Louis told me that there once was a time when he had a decent handle on most of medicine, not just neurology. By 1992 (the time of that trial) it had grown so complex that he could not even keep up with the reading of the two leading journals in his neurosurgical subspecialty, let alone the broader field of neurology -- or even broader, medicine itself.

Dr. Lown was one doctor in Boston in November of 1959. Out of options, he came up with a radical idea when confronted with a dying heart patient: shock the heart of that conscious patient from the outside. Today, an entire industry exists of doctors and technicians and manufacturers of devices and drugs who carry on the work that began one cold morning in Boston at the bedside of Mr. C. Cardiologists receive specialized training to become electrophysiologists and arrythmologists, spending their days focused solely on diagnosis and treatment of heart rhythm disorders. Specialized technicians called echocardiographers use high-frequency sound waves (ultrasound) to view all four chambers of the heart, the heart valves, the great blood vessels entering and leaving the heart, as well as the sack around the heart. Angioplastic surgeons have learned noninvasive procedures using long probes and balloons to repair damaged hearts.

Pharmaceutical companies invent new heart drugs constantly, such as Coreg and Tiazac and Dilacor. Medical device companies life Medtronic develop new devices, like tiny ICD's, or implantable cardioverter-defibrillators (first approved by the FDA in 1985). These devices- known as pacemakers- are placed surgically just below the skin near the collarbone. Tiny lead wires are threaded through a vein into the heart, and a computer chip in the ICD device tells it when to deliver the electrical shock to control a heart that is beating too fast, and to correct the dreaded V-fib. (At about the time Dr. Lown was shocking Mr.C in November of 1959, Medtronic was a fledgling company founded by two brothers-in-law in Minneapolis -- a former electrical engineering student and a former lumberyard worker- who operated out of a garage, repairing equipment like centrifuges. Medtronic today operations from about 250 manufacturing, sales and research facilities around the world). Walking down airport hallways across the country today, passengers see compact defibrillator paddles mounted on the wall, and airport personnel are trained in their use. The technology to save lives is now available in malls, high school gyms, churches, and many other public areas.

Cardiologists aren't the only medical professionals who have benefited from these technological advances; physicians specializing in other organs including the brain, skin, liver, kidneys, intestines, lymph nodes, uterus, pancreas, bladder, esophagus, intestines, lungs, and so on have as well. Doctors today can treat a sick body from head to toe, part by part, with tools that were pure science fiction when Dr. Plum was naming the persistent vegetative state in 1972.

Advances in medical science have helped to create remarkable improvements in health and survival. In 1900 the average life expectancy was 41 years of age in the United States; by 2000 it had risen to an astounding 77 years, thus nearly doubling in one hundred years. Economist Julian Simon has described this development as "the greatest single achievement in history." Today the elderly in the United States are getting knees replaced, hearts transplanted, arteries ballooned open, and not only living to tell about it, but also thriving. How could we not admire technology?

Our doctors are equally subject to technology's allure. They learn in medical school to assess, treat, and cure. They then move into a hospital culture where a death, even among the aged, is seen as a failing. The young Dr. Lown in 1959 plied the silver paddles on the chest of a living human for the first time, and saw a miracle; a racing, out- of-control heart instantly returned to a normal heartbeat. The young Dr. Potter in 1963 compressed a chest and saved a hardware store owner, and the whole town knew it. Their tools were unbelievably primitive compared to the arsenal available to a young doctor today, but the miracles are equally wonderful. How could we deny today's doctor such joy? Or today's patient? Why in the world would we want to?

In truth, we don't want to, and we shouldn't want to. We want the technology, and we want the cure. When surveyed, the majority of us say that when our dying comes, we hope to be at home, free from pain, surrounded by loved ones, and not hooked up to machines. In the abstract, that's likely true. We also very much want to be hooked up to those machines right up to the very moment when the doctor is sure that those miraculous tools can't fix us. Trying to find that exact line is no easy business.

Often during the public wrangling over Terri Schiavo's fate I heard commentators or advocates argue that "we should let nature take its course." Interestingly, people from either side of the divide attempted to claim this ground to support their version of what was "right" for Terri Schiavo: leave the tube in, or take the tube out and let nature take its course. The dispute makes the point -- the time of nature taking its course for the seriously ill in America is over.

It is frequently stated in the medical and social science literature that dying once took place in the home. It was common, and the "death bed" was familiar furniture. Infection spread quickly, medicine had no real tools to fight it, and death inevitably came. By contrast, today most dying (around 80 percent by the reckoning of many groups) takes place in institutions, either a hospital or nursing home. Over a course of years of living with and battling a chronic illness, dozens of decisions are made about the use of medicines and technologies to beat back an illness. Like a river altered for commerce by locks, dams, and channel dredging, nature has no course in this technological world. The path is chosen and altered. But the river still ends up in the sea.

Most of the questions about dying and medical treatment today do not involve young, recently healthy patients like Karen Ann Quinlan, Nancy Cruzan or Terri Schiavo; they involve the elderly. But the ethical issues are in many ways the same. Dr. Joanne Lynn served as one of two assistant directors on the first President's Commission in the late 1970s into the early 1980s, and she has written and worked to improve end-of-life care ever since. She and I sat together around the PBS roundtable in December of 1989 following the oral argument in Cruzan. That same year she began work as codirector of the largest scientific study of the dying every done in this country, the SUPPORT stud. Dr. Lynn has long been a passionate voice in a world of advancing medical complexity.

I heard Joanne Lynn speak in November of 2005 at a briefing for legislative staffers on Capitol Hill in Washington. She started her talk with this bit of a party trick for the audience: "Let's say that everyone in this room can choose how you will die. How many of you would pick cancer?" Three hands went up, including mine. "How about heart and lung disease?" A few more hands. "Then the rest of you have just chosen to die of old age and frailty, your body and mind dwindling over a period of several years." She laughed then, and less confident laughter made its way around the room to join her.

Lynn just described the three major paths to modern dying. About 2.5 million people die each year in the United States, and a large percentage of those deaths, about 80 percent, follow three basic paths. The first group (the one I chose), includes about 20 percent of Americans, or 400,000 people annually. Cancer patients typically die after a long period of living with a fatal illness, sometimes years, during which they were able to stay fully, or mostly, engaged in life during that illness. Death usually comes with a few weeks or months of rapid decline at the end.

The second group includes about 25 percent of the dying in America or 525,000 annual deaths. With chronic heart failure and emphysema, decline is slower and elapses over a longer time than cancer. That decline is punctuated with acute episodes, hospitalizations and recovery throughout, with overall function declining to some degree with each acute episode. At some point, an acute episode comes and this time, the patient has gone too far downhill to climb back up. Death will come then, within hours or days, or more often weeks, depending on the severity of the acute episode and the amount of the patient's residual function.

The final group is the largest, accounting for nearly 40 percent of all deaths in the United States today, or about one million deaths annually. These patients are the frail elderly, destined for years of declining function, both mentally and physically. About half of these patients have serious mental decline as part of their aging. As these patients lose function, they need increasing care and support, often from a family member or friend. Death ultimately comes at a point of significant physical frailty and as a result of a challenge that would have simply been an annoyance earlier in life to a stronger body, e.g., the flu, a broken hip, pneumonia, a urinary infection. The incidence of cancer peaks around age 65, and chronic heart and lung disease peaks around age 75. For those who make it to age 75, by far the leading cause of death is dementia and frailty.

What are those in the final group -- the one million frail and demented elderly -- dying from each year? In the newest version of the International Classification of Diseases, a list that doctors use to indicate the cause of death on a death certificate, there are 113 possible choices. But "old age" is not one of them. That category was removed from the list long ago, in 1913. Scientists, doctors, and anthropologists today debate whether old age in technological America is a natural part of the dying process, or a disease to be attacked.

Another end-of-life pioneer, Dr. Sherwin Nuland at Yale-New Haven Hospital in Connecticut, conducted some fascinating research in the 1970's. Dr. Nuland suspected that many of his elderly patients were dying of old age (whether he was allowed to write that on their death certificates or not), that their bodies were declining and their systems shutting down across the board. Together with Dr. G.J. Walker Smith, the director of autopsy, Nuland studied the autopsies of 23 patients who died over a two-year period at Yale-New Haven. The subjects were old when they died, with an average age of 88, the oldest being 95. Twelve were men, eleven women.

The result confirmed Nuland's intuition. All 23 autopsies revealed advanced atheromatous disease (thickening and calcification of arteries) in the vessels of either the heart or brain, and nearly all had it in both. Three who died of other causes had cancers that doctors had never known about. Three others had similarly undetected aneurysms, ready to explode if another organ had not failed first. Eleven brains that were studied microscopically showed old infarcts (strokes), even though only one of the eleven had a history of stroke. Several had urinary tract infections. Fourteen had atherosclerotic arteries leading to their kidneys. One man who died of stomach cancer had gangrene in his leg.

"An octogenarian who dies of myocardial infarction is not simply a weather-beaten senior citizen with heart disease," Dr. Nuland wrote about this research. "He is the victim of an insidious progression that involves all of him, and that progression is called aging." And Drs. Nuland and Smith were looking at deaths from 1970 to 1972, long before our country began its technologically-supported aging in earnest.

Aging happens in human beings, like leaks developing in a dike. When technology plugs one hole here, a new leak springs open down there because the water continues its relentless pressure against the entire weakening wall. Joanne Lynn makes the point that the newspaper headlines shouting "New Drug Prevents Heart Disease in Elderly," could just as accurately read, "New Drug Promises Major Increases in Dementia." The Alzheimer's Association estimates that today there are 4.5 million Americans suffering from Alzheimer's disease, and that that number could climb to 16 million by the year 2050 unless a cure is found. When a cure is found, pressure will build in another spot along the dike.

Likewise, the U.S. Census Bureau estimates that the population aged 85 and older will more than quadruple between now and 2050, from 4 million to 18 million. At present, only one person in twenty after age 85 is fully mobile. In the year 2000, only Florida had a populations with at least 17 percent of the citizens age 65 or older. Twenty five years from now, 44 states will look like Florida. My parents retired to Naples, Florida in 1984, and we spent many great Christmas Days on the beautiful Gulf Coast beaches. Parked at the beach one day I saw a hot-rod Camaro with this bumper sticker: "When I Get Old I'm Going to Move North and Drive Real Slow." Changes are coming.

The impact of our aging society is only beginning to emerge. Indeed, it's hard to fathom the questions we will face in a world where technology is advancing so rapidly. And it's perhaps even harder to fathom how many of us will be asking these questions. Likely the idea of nature taking its course will be an even more distant memory as the U.S. population ages. Decisions about the appropriate use of medical treatment will need to be made all the time. The tension will no doubt grow. We will want the machines if the doctor believes she can return us to living life, and we will want a natural dying free from machines if the doctor can't help us. That line, elusive today, will likely grow harder to find as technology continues its march forward.

Yet however elusive that line may be, we still eventually will step across it. Dying then will come to each of us, just as it did to Dr. Lown's Mr. C in 1959, Dr. Potter's Mr. X in 1975, Nancy Cruzan in 1990, and Terri Schiavo in 2005. The machines and new medicines can delay our dying, but they can't stop it. And that ultimate fact, it turns out, is very hard to talk about -- for patients, for families, for doctors, even for lawyers.

William H. "Bill" Colby (Kansas City, MO) is the lawyer who represented the family of Nancy Cruzan in their right-to- die case, the first such case heard by the U.S. Supreme Court, on December 6, 1989. He worked with Senator John Danforth's office on legislation which eventually became Federal law, the Patient Self-Determination Act, and has testified before different state legislatures and legislative committees about law and ethics at the end of life. He has also represented many families who have been faced with agonizing questions about removal of life support from a loved one.

Bill has appeared on Good Morning America, Today, CBS This Morning, Frontline, Media & Society with Fred Friendly, the MacNeil Lehrer Report and other national programs. He has presented at the American Bar Association Annual Meeting, DRI, ASLME, ASPEN and other national legal and medical conferences, and has spoken to groups across the country on the issues we face at the end of life.

Bill graduated from Knox College in 1977 with an English degree and an emphasis in creative writing, and from the University of Kansas Law School in 1982. After law school he clerked at the United States Court of Appeals for the D.C. Circuit, and practiced law in D.C. at the Wall Street firm of Davis Polk & Wardwell. In 1985 he returned to Kansas City and the firm of Shook, Hardy & Bacon. He is a Senior Fellow with the National Hospice and Palliative Care Organization in Washington, D.C., and the author of Long Goodbye: The Deaths of Nancy Cruzan. Bill has taught at the University of Kansas School of Law. He lives in Kansas with his wife, four children, and their dog, Spot.

"Although many other books have covered these topics, few possess Colby's engaging style and judicious insights." -- Publishers Weekly

The time has come for a frank discussion about how we die. UNPLUGGED is the blueprint for that talk.

Medical technology has helped mankind conquer tuberculosis, polio, and countless other once certain-death diseases. It has given us hope against cancer and AIDS, allowed heart and brain surgeries that have saved untold numbers of lives, and delivered us from the pain and crippling legacy of injury. Medical technology, it seems, is a never-ending string of miracles.

But it is also a double-edged sword. More often than not, death today happens because of a decision to stop doing something, or to not do it at all. As the tragic life and death of Terri Schiavo so poignantly illustrated, universal definitions of life, death, nature, and many other concepts are elusive at best. UNPLUGGED addresses the fundamental questions of the right-to-die debate, and discusses how the medical advances that bring so much hope and healing have also helped to create today's dilemma.

This compelling book explores recent high-profile cases, including that of Mrs. Schiavo, and illuminates the complex legal, ethical, medical, and deeply personal issues of a debate that ultimately affects us all. Compassionate and beautifully written, the book helps readers understand the implications of current laws and proposed legislation, various medical options (including hospice), and the typical end-of-life decisions we all must face in order to make informed decisions for ourselves and our loved ones.