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Massachusetts Vote May Change How the Nation Dies
Why it matters that Death With Dignity is poised to become the new norm.
Cody Curtis, right, in How To Die in Oregon
Still from Clear Cut Films/IMDB.
Still from Clear Cut Films/IMDB.
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.
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 the New 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.
