by Lewis M. Cohen
October 29, 2012
This Election Day, Massachusetts is poised to approve the Death With Dignity Act. “Death with dignity” is a modernized, sanitized, politically palatable term that replaces the now-antiquated expression “physician-assisted suicide.” Four polls conducted in the past couple of months have shown strong support for the ballot question, although a well-funded media blitz by the opposition is kicking in during the final several weeks and may influence voter opinions.
Oregon’s Death With Dignity Act has been in effect for the past 14 years, and the state of Washington followed suit with a similar law in 2008. Despite concerns of skeptics, the sky has not fallen; civilization in the Northwest remains intact; the poor, disenfranchised, elderly, and vulnerable have not been victimized; and Oregon has become a leader in the provision of excellent palliative medicine services.
But the Massachusetts ballot question has the potential to turn death with dignity from a legislative experiment into the new national norm. The state is the home of America’s leading medical publication (the New England Journal of Medicine), hospital (Massachusetts General), and four medical schools (Harvard, Boston University, University of Massachusetts, and Tufts). Passage of the law would represent a crucial milestone for the death with dignity movement, especially since 42 percent of the state is Catholic and the church hierarchy vehemently opposes assisted dying. Vermont and New Jersey are already entertaining similar legislature, and if the act passes in Massachusetts, other states that have previously had unsuccessful campaigns will certainly be emboldened to revisit this subject.
The American right-to-die movement began in the 1980s and 1990s with Derek Humphry’s book, Final Exit, and his organization, the Hemlock Society. It was a reaction to a wave of technological advances, including antibiotics, antifungal medications, ventilators, dialysis machines, cardiopulmonary resuscitation, organ transplantation, and intensive care units. Death appeared to be on the run, cure was truly possible, and patients were politely requested to be quiet and allow physicians to heroically perform miracles. And that is when Dr. Jack Kevorkian—the bad boy of medicine—appeared on the scene.
Kevorkian was a revolutionary. He was beloved by patients and their families because of his gutsy intention to overthrow the medical establishment’s prevailing ethos and hubris about dying. Clad in his nerdy, light-blue cardigan sweater, Kevorkian paraded in front of the cameras to show off homemade suicide gadgets and the Volkswagen van he occasionally drove on house calls to help suffering people end their lives. Before receiving an 11-to-20-year sentence for the second-degree murder of Thomas Youck, a 52-year-old Michigan accountant who suffered from amyotrophic lateral sclerosis (Lou Gehrig’s disease), Judge Jessica Cooper said, “You had the audacity to go on national television, show the world what you did and dare the legal system to stop you. Well sir, consider yourself stopped.”
So let’s fast forward to December 2007, when Cody Curtis was diagnosed with cholangiocarcinoma. This is an unusual and deadly cancer of the bile duct, the tube that runs through the liver. Depending on the size of the tumor and whether it has spread throughout the body, patients with this cancer are offered surgery, chemoradiation, and sometimes a liver transplant. Even with aggressive treatment, however, cholangiocarcinoma is usually a fatal diagnosis.
On a website called How We Die, Cody wrote with characteristic brio and wit:
It’s interesting how I was diagnosed—for my 52nd birthday I had gotten four, count them, four boxes of chocolate. And I ate them all. Afterwards I felt (deservedly) awful. I looked up my symptoms on the Internet and decided I was having a gall bladder attack like my father had earlier that year. It was a Saturday night so I didn’t want to go to the emergency room.
But I thought it was really weird, so a few weeks later I went in to see the doctor. She ordered an ultrasound. When I went back to her office to get the results, she looked at me and burst into tears. She said, “Your gall bladder’s fine, but you have a big mass in your liver.” The tumor was roughly the size of a grapefruit.
After Cody’s primary care physician calmed down, she discussed the implications of the finding and referred her to a local oncology surgeon, Dr. Katherine Morris—whom Cody and her family came to know as Dr. Kate.
Cody’s postings about her illness remained upbeat but realistic:
The good news was the location of the tumor made a resection of my liver possible. Your liver regenerates and within six weeks you have a new liver. I had the first surgery, which cut out about 60 percent of my liver. But there were complications and I ended up in the hospital for 50 days. I couldn’t walk. I couldn’t feed myself. My daughter lives in Washington D.C. She visited for a week and I didn’t know she was there. And a year after the original surgery, the cancer came back, metastasized to the liver, lungs, and lymph nodes.
When Cody and Dr. Kate met for the first time, the surgeon was 39 years old. During the preceding three years, she had established a vibrant solo private practice based in Portland, Ore., while also helping run a research and tumor banking program at a tertiary care center. She was happily married and highly satisfied with her professional life.
When I write medical stories, I routinely ask people to describe themselves and find that most physicians become flustered when asked this question. Although trained observers, doctors spend little time looking in a mirror or wryly considering their own appearance. They are no more or less narcissistic than the general public but rarely manage to put together a coherent description of themselves—let alone one that contains humor and modern cultural references. So I was delighted when Dr. Kate immediately responded: “I am hopeless at this, but will suggest, instead, a series of words to consider and words to avoid.” Among the words and phrases to eschew were “stout, stumpy, Rubenesque, jolly, looks like Austin Powers minus the chest hair.” Among those worthy of consideration are “a less anorexic Angelina Jolie, statuesque, willowy, serene, poised.” She continued: “I’m 5’4″; have dark, shoulder-length hair; kinda hazel eyes; and teeth I should have had straightened as a kid, but refused to have braces.” This was followed by the admission that, “I’ve a tendency to be willful!”
Dr. Kate grew up in a bucolic setting on the outskirts of Olympia, Wash., in a home that abounded with horses, cats, and dogs. One of her earliest lessons was that you don’t allow animals to suffer. She was raised as a Catholic and attended parochial school through eighth grade. She learned other lessons: People are responsible for themselves and their bodies, and autonomy is a cherished ethical principle to always be respected. Dr. Kate moved to Oregon to attend medical school and complete a surgical residency. She then traveled to New York City and Memorial Sloan-Kettering, where she did a surgical oncology fellowship focusing on cancers of the liver and pancreas. Portland, however, is not an easy city to leave, and she returned to establish a private practice and conduct clinical research. When Cody came to see Dr. Kate, she was one of a select group of surgeons specializing in the treatment of this particular kind of cancer.
Thanks to Cody’s case, Dr. Kate is now among the pantheon of a growing number of medical professionals who have been transformed by death with dignity. Perhaps it takes the dramatic actions of a flawed advocate like Dr. Jack Kevorkian to catalyze change that leads to the appearance of more reasonable and likable physician reformers. Physicians of this new generation do not seek out or necessarily welcome the role, but, having accepted it, they are irreversibly changed. Most are modest, highly intellectual, and intensely private professionals who are drawn to medicine because it offers a challenge and an opportunity to help relieve distress. Most are workaholics who accept the drudgery and frequent frustrations of the profession because it is occasionally interrupted by the incomparable pleasure that comes with vanquishing an illness, ameliorating suffering, and saving a life. Few of these physicians would ever have dreamed that their greatest accomplishment might entail helping patients to die. Not one of them would have imagined him- or herself becoming a death-with-dignity advocate.
These doctors defy the deeply ingrained taboo against death and they are soft-spoken combatants in this professional and cultural war. The media has briefly illuminated a few of them. Dr. Timothy Quill is a bioethicist and primary care physician who wrote a provocative New England Journal of Medicine article that is death with dignity’s literary equivalent of Harriet Beecher Stowe’s Uncle Tom’s Cabin. The first-person essay resulted in a grand jury investigation (he faced the possibility of indictment for murder or manslaughter), and it led to his eventual role as a plaintiff in a landmark U.S. Supreme Court case. Tim is this year’s president of the American Academy of Hospice and Palliative Medicine.
Dr. Marcia Angell is another member of this group. She was the first female editor of theNew England Journal of Medicine and has recently been attracting attention in her capacity as an eloquent spokesperson for the Massachusetts ballot question campaign. She fervently believes that it is vastly preferable for dying people to be offered a legal option of death with dignity than to secretly, fearfully, and often brutally kill themselves.
And then there is Dr. Kate Morris. At the time Cody became her patient, filmmaker Peter Richardson, a young native Oregonian, was absorbed by his state’s decision to legalize death with dignity. Cody eagerly agreed to participate in his film, and Dr. Kate grudgingly acquiesced. Both women poignantly described to Peter the aftermath of the surgery, the complicated recuperation, the resumption of a vibrant life, and finally the recurrence of cancer. In the end, the camera respectfully hovered outside of Cody’s bedroom, where her family gathered and where she ingested the lethal dose of barbiturates that allowed her the death with dignity she desired.
When I interviewed Richardson, he was still in shock that How To Die in Oregon had just received the Grand Jury Prize Documentary Award at the 2011 Sundance Film Festival. Since then, it has been broadcast on HBO and is contending for an Emmy. At the festival, Dr. Kate shared a few intense minutes in the klieg lights with Cody Curtis’ widower and her adult children, as they nervously answered audience questions.
Before moving to New Mexico for an academic position, the surgeon helped one more patient to use Oregon’s Death With Dignity Act. She has since volunteered to be the lead physician plaintiff in a case challenging New Mexico’s law against assisted dying.
For people like Cody Curtis and Dr. Kate, death with dignity is not incompatible with palliative care, and data show that 90 percent of Oregon patients who choose assisted dying are simultaneously enrolled in hospice, and 95 percent die at home. Death with dignity epitomizes self-determination at a moment when palliative medicine bumps up against its limits, when patients are undergoing irremediable existential suffering and are in the process of losing everything that is meaningful to them.
After her patient’s death, Dr. Kate concluded, “I think Cody taught me that ‘first, do no harm,’ is different for every patient. Harm for her would have meant taking away the control and saying, ‘No, no, no! You have got to do this the way your body decides, as opposed to the way you as the person decides.’ ”
Dr. Kate’s epiphany goes to the heart of the dilemma faced by physicians who are requested to assist in hastening dying. Most have been taught to adopt a passive stance and resist doing something rather than risk causing more harm than good. The ethical principle of non-maleficence has been a rationale for feigning deafness, and for ignoring or refusing to participate in a death with dignity. However, Dr. Kate has realized that another, more important principle—respect for patient autonomy—should supersede in these cases. Whether or not you would consider assisted dying as a personal option, we should allow others to exercise their preferences. It is time we became pro-choice at the end of life.