Former Oregon Governor John Kitzhaber, MD, is a nationally recognized leader in health policy and a staunch supporter of the Oregon Death with Dignity Act. In 1997, in his first term as governor, he defended Oregon’s law from an attempt by legislators to repeal it, threatening to veto any repeal bill sent to his desk.
Kitzhaber was the keynote speaker at Death with Dignity’s November 8, 2019 event commemorating the 25th anniversary of the passage of the Oregon Death with Dignity Act. Below is a transcript of his remarks.
Thank you for inviting me to join you. As I was thinking about what to say this afternoon, it occurred to me that perhaps the best way I can contribute to recognizing the significance of the work you have done these past 25 years, would be to offer a context through the lens of three personal experiences.
In July of 1973 I watched a baby die. His mother called him Sam. She arrived at the hospital in labor, anemic, malnourished —never having seen a provider over the course of her pregnancy. We delivered Sam in the ER at about 24 weeks, weighing less than two pounds and I was a part of his short life from the moment he was born to the moment of his death two days later.
I can still remember standing by his incubator during that final hour, looking into his eyes, knowing what was going to happen and feeling depressed and helpless. I remember what a quiet death it was. There was nobody there but his mother, a nurse, and myself. Nobody else knew about Sam and his two-day struggle to live. He never made the papers or the evening news. It was an anonymous tragedy that touched the lives of no one but those who were there.
I remember Sam’s death because it offered such a sharp contrast to the second one I watched a few days later, that of a 90-year-old woman named Gladys who had lung cancer. She was not on my service but I used to sit and talk with her during the nights I was on call and we developed a lovely, but brief friendship.
She was scheduled for surgery to remove her right lung and confided in me that while she did not fear death, she feared the surgery. She didn’t want any more pain. She was tired and just wanted to go home to her own bed.
I knew it was her when the code was called on the surgery floor a few days later. I rushed to the room, along with another intern, a surgical resident, two nurses, and a respiratory therapist and we spent an hour in a frantic, yet unsuccessful attempt to save her life.
Now, Sam died because we didn’t know as much then as we do now about how to treat respiratory distress syndrome in newborns. But he also died because somehow nobody had made the token investment to get his mother the prenatal care that could have prevented his prematurity and low birth weight. Gladys died because she was ninety years old and suffering from an incurable disease.
She died because she was ready to die, something she recognized but we couldn’t. And unlike baby Sam’s passing, the last hour of her life was not quiet and involved little, if any, dignity. We stuck tubes into her nose, throat, and bladder, needles into her veins. We pumped her full of drugs and shocked her repeatedly. We “failed,” she died, and we ran up an enormous bill for Medicare to pick up.
I can still remember the contrast between the frenzied efforts of a roomful of people, with all their sophisticated equipment, trying to “save” someone at the very end of a long life, and the quiet and undramatic death of someone at the very beginning of life. I remember the events but at the time I never saw the contradictions. I never considered whether the effort to resuscitate Gladys made sense in the first place—whether the pain and discomfort we caused her was compassionate in the face of her underlying diagnosis of “terminal lung cancer.”
Many years later, I took a friend from New York City on a raft trip down the Rogue River. It was August and the salmon were spawning. One day we drifted by a spectacular male Chinook weighing over thirty pounds. He was still pointed upstream, but fighting the current and his failing strength. His body was scarred, his fins were broken and worn, patches of fungus covered his back and sides. He was still a long way downstream from the gravel bed where he was born five years earlier. He would probably never make it, never spawn—but in his death he would give his body to the river, providing the nutrients necessary for the survival of the next generation.
To me, the life cycle of the salmon is a lovely metaphor, not only for the natural relationship between life and death, but also for the responsibility each generation owes to the next. But my friend just stared at the fish for a long time then turned to me and said, “My God, what’s wrong with that salmon?” And without any hesitation, I replied, “There is nothing wrong with him. He’s just dying.” … There is nothing wrong with him, he’s just dying.”
You don’t hear that too often in the halls of medicine because neither our society or our medical system views death as a natural part of the life process, but, rather, as something abnormal; something foreign. Indeed, when I was in medical school in the early 1970s, and throughout my internship, I was taught that my mission was to “save lives;” that death was a failure; an adverse outcome.
Over the years, however, I have come to realize that this attitude often does a disservice to the very people we are committed to serve. I have come to recognize the difference between prolonging life and prolonging death. In short, I have come to understand the poignant distinction between cure and care.
This perspective was reinforced when I lost my mother at the age of 88. Like most elderly people, both my parents wanted to die at home, not in an acute care hospital bed. And I can clearly remember accompanying my mother on her last visits to see her physician.
She had been suffering from increased muscle pain. She had a very high erythrocyte sedimentation rate, (a nonspecific indicator of inflammation) and a trace of blood in her stool. The differential diagnosis included an undetected cancer and the workup to find out would have been very invasive, including endoscopes, colonoscopies, maybe a temporal artery biopsy—none of which my mother wanted.
This represented a turning point in my mother’s gradual decline when she began to make a conscious distinction between “cure” and “care.” And I will be forever grateful that I was there to help her see this distinction because the “health” care system would have pushed her in the opposite direction.
What she was interested in was being comfortable and enjoying whatever time she had left. She did not want to spend it in the hospital or recovering from various invasive diagnostic procedures. After this conversation, my mother’s doctor said: “Okay, we’ll just check your lab work every few weeks and see how you do.” At which point, I asked, “Why?”
There followed an uncomfortable silence— and after a few moments I said, “If we keep checking the lab work on an eighty-eight-year-old woman, we will keep finding abnormalities. And if we have already decided not to run them all down, then why do the lab in the first place?”
I took Mom home and watched an immediate and almost palpable improvement in the quality of her life. She and my father had been “living around the lab”—around visits to the physician, around diagnostic studies. Running back and forth to the lab, the hospital. In other words, the whole focus of her life had been centered on her illness, her disability and her aging. But now both she and my father let go of that part of their lives which they could not control: the fact that they were mortal, were getting older and would eventually and inevitably die—and, instead embraced what they could control: the joys and blessings of their nearly sixty-five-year marriage.
Mom lived at home for another four months. She never went back to the physician’s office and was never admitted to the hospital. Fortunately, they had the resources to bring in the caregivers—to help with ambulation, meals and housework—which made it possible to honor her desire to stay at home.
When my mother eventually died of congestive heart failure, she was in her own bed, with my father beside her and her family around her. The Messiah was playing on the living room stereo system. It was very sad—but it was also what she wanted—and that made it caring and beautiful at the same time.
In our current system, however, Medicare would pay to have her “lab checked” every few weeks, no questions asked, or to hospitalize her for atrial fibrillation; renal failure; congestive heart failure; and any number of other conditions for which she could have legitimately been diagnosed in the last six months of her life—because our system encourages the use of acute medical interventions towards a cure—when a “cure” in the conventional sense is not possible— and what is needed, in fact, is care.
The reality is that the management of the end of life is not a medical challenge, but rather an interpersonal one involving understanding; emotional support; love and compassion and caring. It is a human proposition, not a technology proposition. And yet, while our system will pay for almost every diagnostic and therapeutic intervention in its growing death-defying arsenal, it will not adequately reimburse a provider to spend an hour or two with someone and their family explaining the difference between “care” and “cure;” discussing what they want the remainder of their life to be like, or—until you came along—giving them some choice and control over the end of their lives.
This recognition of the difference between cure and care—coupled with the courage to talk about it in the face of withering criticism—lies at the heart of what has become known as Death with Dignity. It was not an easy path and I stand here in awe of, and deep appreciation for, the courage, tenacity and commitment of all the people gathered here whose efforts brought a needed measure of compassion, caring and rationality to an increasingly industrialized and impersonal medical system.