The Long Goodbye : As a Lawyer-Journalist, the Writer Tracked the Twists and Turns of the Right-to-Die Movement. But When Her Own Father Became Trapped in Intensive Care, the Issues Became Even Darker and More Complicated.
My father always comforted himself with sound: nine kids and, late at night, the TV blaring. The antidote to a lonely only-childhood--to months spent in an orphanage while his parents served time in a Lithuanian prison, accused of being anti-Communist spies. A trial attorney and an athlete, his mind and his body seemed always in motion.
“Nobody can withstand the withering glare of introspection, Janet,” he would tell me when he came upon me writing in the journals I kept since age 15. It took me at least another 20 years to translate that sentence accurately, to realize that the person he was referring to was himself.
I think of him as he is now, at 71, unable to speak and largely unable to move--awake, perhaps, at 3 a.m. in a Connecticut nursing home, the TV turned off and no family present to distract him. And I hope that the doctors are right, that he does not feel emotion. Because I know that if he feels, he feels afraid.
Two years after the stroke that initially left him comatose, and despite his having signed a living will saying he wished to “be allowed to die and not be kept alive through life-support systems if my condition is deemed terminal,” my father is being kept alive--by a feeding tube to the stomach.
To understand how this could happen, it is necessary to understand that none of us made a decision to keep my father alive this way. The decisions that were made were agreed upon by all of us at a time when Dad’s medical prognosis was unknown. We said yes to a respirator, to a feeding tube, to a tracheotomy, to anti-seizure medication and to antibiotics--all within the first 10 days.
Anyone who has spent time with a loved one in an intensive-care unit knows that an uncertain prognosis can be interpreted as a cause for hope. At the time our decisions were made, there was, we believed, a great deal of hope for our father. After all, he had sprung back from a precursor to his stroke (called a transient ischemic attack) in 1986 and had continued to be active despite a stroke that claimed his speech in 1988. Why should he not again triumph over infirmity?
This belief in the power of will to overcome physical adversity was furthered by the force of family mythology. “Don’t take anything for granted” has been our motto. We have heard it all our lives and know it to have worked for our father. His entire life had been a testament to tenacity and accomplishment: Harlem boy turned Yale Law School graduate, well-known domestic-relations attorney, a house in Greenwich, Conn., a loving and brilliant wife, nine good kids, all of them college graduates, six of them lawyers (this is not coincidence, of course, but an example of his influence).
I am 41, the eldest of the children. Much of what I’ve done with my life has been at his direction or in defiance of it. When, several years ago, I decided to leave the practice of law for journalism, it was difficult to tell him. At this very moment his opinion matters to me.
“Janet,” Dad told me when I was a teen-ager, “you’re not the brightest of my kids, but you’ve got something none of the rest of them have--stick-to-itiveness. And that will get you far.” It has taken a good portion of the last two years to teach me that there is a time to give up. Even now, I want to believe that the family motto can prove right. My pessimism about Dad’s prognosis is not shared by everyone in the family, however. Perhaps our definitions of his condition are just Rorschach tests of our varying expectations.
IT SEEMS INEVITABLE, even ironic, that I should write this story. As a lawyer and a journalist, I have written for many years about the issues surrounding the use of life support. In the early 1980s, as a reporter, I covered the preliminary hearing for Neil Barber and Robert Nejdl, two Kaiser Permanente Harbor City doctors accused of murder for withdrawing life support from a comatose patient. Nurses and doctors, ethicists and theologians came from all over the country to testify as to what life was and what death was and who should decide those matters. (In October, 1983, an appellate court would throw out the case, stating its opinion that “a murder prosecution is a poor way to design an ethical and moral code for doctors. . . .”)
Soon, there were many other related cases in the Los Angeles area. William Bartling, a patient at Glendale Adventist Hospital, asked the courts to allow him to turn off his respirator. Bartling’s ailments included emphysema, heart disease and lung cancer. But hospital personnel restrained his arms to prevent him from pulling the plug. They questioned the consistency of his desire to die. After all, they said, he seemed to enjoy watching football games on TV and eating ice cream. In one sense, perhaps, Bartling won: He died of his illnesses before the courts could resolve the dispute.
At the other end of the decision-making spectrum, a young Long Beach couple, Adrian and Ginger Roberts, kept their brain-dead baby Starla on life-support systems at Memorial Medical Center for eight months before agreeing to their removal. Brain-death is a legal definition of death in California, but the parents, devout Pentecostal Christians, believed that a miracle could revive their child.
I wrote about many such stories, and about the efforts of organizations such as the Los Angeles County Bar and Medical Assns., which, working together, drafted guidelines to help clear a path for families and health-care professionals through the legal morass.
Later, I reviewed books on these subjects and discussed the need for living wills and durable powers of attorney for health care, documents I believed could ensure that a patient’s wishes regarding continuation or cessation of treatment would be honored. I was endlessly fascinated by the interweaving and juxtaposition of the legal, ethical, medical and theological concerns that were raised by these issues.
Recently, these matters have become even more timely. The U.S. Supreme Court has decided the Missouri case of 33-year-old Nancy Cruzan--comatose for almost eight years after an auto accident--whose life support her parents wanted to remove. The Court held that when the patient’s wishes are adequately known, the Constitution protects the right to refuse life-sustaining treatment.
And in Michigan, murder charges were brought and then dismissed against Dr. Jack Kevorkian, creator of a machine that enabled Janet Adkins, a Portland, Ore., woman with Alzheimer’s disease, to kill herself.
But this time, I write not about legal cases but about personal experience, and not primarily as a lawyer and a journalist but as a daughter.
WE GREW UP IN GREENWICH. Most of my family still lives there. Three of us now live in Los Angeles, though. On the day in June, 1989, that Mom phoned me to tell us of Dad’s stroke and coma, we felt an earthquake as the three of us drove together to the airport to catch the next plane east. “Dad is trying to protect us,” we told each other. “He got sick so that we would get out of here.” We believed this.
Once home, we went to see him in the hospital. We talked about his coma as if it were a painful love affair. “He’ll get over it,” we told one another. But our disconnected actions contradicted our confident words.
“Would you like a cookie?” my sister Jocelyn asked on our second day in the critical-care waiting room. “Yes,” I said. She got up to bring me one, ate it and sat down. That same day, Mom told my sister Justine that her boss had called. “He was so nice,” Mom said. “What did he say?” Justine asked. Mom started to answer, looked baffled and told her: “I don’t remember.”
I did it, too: I failed to recognize a neighbor I’ve known all my life, and I held an entire conversation with a 6-year-old nephew in which I repeatedly called him by his sister’s name. By the third day, I could barely move. Once seated, I needed assistance to get up. I carried with me the full harsh weight of impending loss. I felt anger, too--at all the acquaintances and even strangers eager to give us their opinions. “Pull the plug,” each one told us, nodding their heads up and down emphatically.
I first encountered this phenomenon when my brother Joel and I left the hospital in search of a strong cup of coffee. We told ourselves that lack of caffeine was to blame for our sluggishness and drove to a nearby bakery. We ended up seated one table away from a client of Joel’s. I had never met her. “Your father wouldn’t want to live like this,” she told me after the briefest of introductions. “You should let him go.”
“Excuse me a moment,” I said politely. I walked out of the restaurant shaking with fury and did not go back.
Joel told me later: “You’ll be amazed at how many people tell us what to do with our Daddy.” He was right. I was amazed. At that point not even Dad’s doctors were sure of the prognosis.
The route between our house and the hospital was a journey through the past: There was the park where, at age 8, I first ice-skated. There was the library where, by age 14, I’d read every book by Anya Seton and Daphne du Maurier at least twice. . . .
Only two at a time were allowed in Dad’s hospital room. I sat in the waiting room, skimming through the personal ads in a month-old magazine. A lot of vivacious, witty, attractive women were looking for handsome, financially secure, elegant men. These women were interested in attending concerts, playing tennis, sharing fine dining and, possibly, romance. I drafted an ad in my head: “Woman. Desperate. Father Dying. Hurry. Hold Me. Losing Ground.”
It was time to see Dad. I crumbled a cookie in my hand before Justine and I walked down the hall to enter his room. I’d been petting dogs or crushing leaves or eating chocolate each time before seeing him. He loves animals and gardening and sweets. Maybe, I thought, these smells could cut through the horrible, competing odors of antiseptics and decay pervading his room and permeating our clothes, our hair and even our bedding. Maybe he’d think chocolate and dogs and gardens were worth coming back to.
Hours later, Mom and I left for the night. Outside the hospital, the smells were wonderful: summer grass and blooming flowers. I looked up, saw a star and made my wish. Mom saw me do it. “Couldn’t hurt,” I said. She nodded her agreement. “I love it here,” Mom said as she drove past picture-perfect homes softly lit by street lamps. “I always have.” She and Dad had lived in Greenwich, in the same house, for 36 years.
“I love you, “ I told her. I wished I had something more to offer. Something to make this go away.
WITH ALL THOSE LAWYERS IN the family, we instinctively first tried to make sense of the situation by using a legal framework. Two days into Dad’s coma, my sister, a Connecticut attorney, handed us copies of that state’s statutes defining life support and detailing the circumstances under which it can be removed, as well as copies of a January, 1989, Connecticut court decision interpreting the statutes. We read them, then discussed how they might apply to Dad--as if we were in law school and this were but a classroom exercise. In retrospect, I think we needed the relief from emotion that this mental exercise provided.
At 8 p.m. my family got up to leave. I spent the night at Dad’s bedside.
There is so much uncertainty over what is known and understood by a person in a coma. I talked to Dad throughout the night, needing him to hear me, wanting him to remember himself as a good father, needing to remember him that way.
“Remember when you took me to Boston with you and we had popovers and rode the swan boats?” I asked. (Dad had been a visiting law lecturer at Boston University. I saw Boston for the first time with him, when I was about 10 years old. Of course I’ve loved it--and popovers--ever since.)
“Remember when you told me my allowance was being cut in half, so I did half of my chores: half the dishes and half the ironing?” (Dad had first congratulated me--I was still 10--on how calmly I had taken this news but raced up the stairs to spank me when he noticed my rebuttal.)
“Remember when I got to see you get sworn in before the Supreme Court?” (I must have been about 8 years old. We drove down to Washington--Mom and my three siblings and I--to watch the ceremony in which Dad would be declared eligible to practice before the Supreme Court of the United States.) “And then (more than 20 years later) I got to watch you watch me.” (I was sworn in before the Supreme Court in 1979.) “Remember? . . . Remember?”
About 2 o’clock in the morning I told Dad I wanted to read him the Connecticut statute. “You have a right to know what we’re discussing,” I said.
And then I read to him about “nutrition and hydration,” “terminal condition,” “comfort care” and “pain alleviation,” until suddenly, I was crying. “Now do you understand why I don’t practice law?” I asked him. “What the hell does all this have to do with you ?”
I FEEL CERTAIN THAT THE FAther I’d always known would choose not to be kept alive under the current circumstances. And I also believe that the living will that he signed said as much. But it is uncertain that a Connecticut court would allow his family to withdraw the feeding tube, even if we were all in agreement about doing so--which we emphatically are not.
The Connecticut statute permitted the withdrawal of life support under limited circumstances, but expressly excluded the provision of “nutrition and hydration” from the definition of a “life-support system.” (By contrast, in California, the appellate court in the case of doctors Nejdl and Barber viewed “nutrition and hydration” as “being the same as the use of the respirator or other form of life support.”)
And although the Connecticut courts found a way to interpret the law to allow for the removal of nutrition and hydration, elimination of those and other life-support devices appeared limited to situations where a patient’s condition is terminal-- the word that’s used in Dad’s living will.
The Connecticut statute defined a terminal condition as “the final stage of an incurable or irreversible medical condition which, in the opinion of the attending physician, will result in death.” There are documented cases of people in comas having lived for about 30 years. Such a condition may be no more terminal than life itself.
As Dad continues to improve to the point where he can no longer be considered comatose (although, not in my opinion to such an extent that allows for appreciable “quality of life”), the odds of being able to ever legally remove the apparatus keeping him alive decrease.
To add to the confusion, the law is not static. On June 26, the governor signed an act, effective Oct. 1, liberalizing the rules concerning living wills. Among other things, this will broaden the definition of a “terminal condition” and include artificial means of providing nutrition and hydration within the definition of a life-support system. Conceivably, it could permit more drastic action in my dad’s case. But after months of uncertainty atop uncertainty, it’s hard to envision pressing the issue now.
It’s clear that my father is no longer in the coma he entered after suffering the stroke. People in comas do not lie in their hospital beds, or sit in the wheelchairs in which they’ve been propped, sobbing and sobbing as he does.
People in comas do not, with their one functional limb (his right arm) make vigorous downward pulling motions in the direction of their feeding tube, as he did when I last saw him.
“I think he’s saying, ‘Pull the plug. I’ve had enough of this life,’ ” I told one sister.
“Maybe,” she said, “Or maybe he’s saying, ‘I’ve had enough of this stuff. Give me some real food.’ ”
If my sister is right, Dad’s desire is now being met. The “trach” was “plugged” in late January, allowing him to receive pureed food by spoon (although a feeding tube is still used if he is to receive sufficient nutrients).
OF COURSE, THE FAMILY DIDN’T intend to ride roughshod over the wishes Dad expressed in his living will; we had no idea what his condition would become. If we’re guilty of anything, it is of an excess of hope. There are about 10,000 people in comas in this country alone. Respirators and/or feeding tubes make their survival possible.
But I urge you to heed this story, to factor it into your thinking processes now. Because, through the fault of no one, the time when you are most vulnerable and the medical prognosis least certain may be the time when you are asked to make decisions that could place you on our same course.
Once those decisions have been made, you may, as we apparently did, set in motion a process that can have no good conclusion: One with no death and no recovery--a half-life at best for our father.
It took me months to reach this point, to give up hope. But I came to believe the words of Dad’s doctor, a gentle soul I have known since my childhood, who told me more than a year ago when I asked his medical opinion: “Your father is in a chronic vegetative state. When your family is talking to him, they are talking to the man they remember.”
Others in the family say that’s no longer true. One sister tells me Dad can sometimes put together a puzzle of several pieces. Another sister showed me where he had signed his name, but I wouldn’t have known that’s what it was. It isn’t that I don’t believe that there’s some progress. I do. It’s that in some ultimate sense I don’t think it matters.
Perhaps I’m wrong to believe that such changes don’t warrant the decisions we made that sustain Dad’s life. Perhaps the members of my family who have perceived his improvements as great strides and expect significant gains in the future are correct. The family’s only choices about Dad’s treatment may lie in prospective decisions about possible future events: whether to revive him should he stop breathing and whether to medicate him if he falls prey to infection.
My mother--a chemist when she married, and a marriage-and-family counselor since getting a master’s several years ago--has told the doctors not to resuscitate. However, she has also told them to provide antibiotics for whatever infections arise, and they have, repeatedly. “He hasn’t given up, Janet, so how can I,” she told me.
The nine children have wildly differing opinions as to Dad’s treatment. At last count I, and from time to time only a sister, believe that to permit him to die by not medicating might be a blessing. I do not think it coincidental that we are the ones most in agreement since I, as a journalist, have been repeatedly exposed to these issues and this particular sister is a scientist.
Other family members hold other views. They consider the not-medicating option not as allowing Dad to die but as killing our father.
What keeps us from one anothers’ throats is a unanimous belief that it is Mom’s wishes by which we should abide. Dad’s medical care has cost hundreds of thousands of dollars. Much of it has been covered by private insurance; some of it has not.
“You don’t have to go bankrupt to prove that you love him,” I told Mom several months into Dad’s confinement (I feel like calling it incarceration ).
“I know that, Jan,” she said.
Yet, bankruptcy may be a real possibility. A year and a half ago, Mom arranged for Dad to be moved from a hospital to a facility that promised a regimen of rehabilitation services.
A representative for the facility’s parent company told Mom that Dad’s insurance carrier had agreed to cover the $1,000 a day or so for his care. Months later, however, facility personnel told my stunned mother that the carrier had denied the claim. They now say Mom owes them almost $200,000.
TWO WEEKS INTO DAD’S COMA, two summers ago, the three of us who live in Los Angeles decided to come home. We couldn’t stand the thought of leaving. Yet we couldn’t wait to escape the hopeless tedium of the hospital waiting room.
Back in Los Angeles, I felt some strength, a sense of mission. “I want to find a support group,” I told my friend Jerry. “I want to help others get through what I’ve come through.”
“You haven’t been through anything yet,” he said. “You’re in the thick of it.”
And in the thick of it is where we remain. Although each family member has created a way of handling the trauma (mine, as you see, is to write about it), each of us remains subject to alternating periods of hope and despair. We’ve been stripping life down to its essentials: relatives and close friends only. There is no energy for more (sometimes it’s hard to distinguish a good sense of values from a deep depression).
For us, the issues go on and on and on. Like Dad, we are living on hold.