In her viral video, Brittany Maynard explains why she has scheduled her death. Diagnosed with an aggressive form of brain
cancer on New Year’s Day, she was originally given up to possibly 10 years to
live. As she notes, for a 29 year old,
this was still like being told you’re going to die tomorrow. In April, after experiencing increasing
headaches and painful seizures, doctors upgraded her status to stage 4
glioblastoma and estimated she had only six months left. Learning her death would be horrible and
painful, she and her family moved from California to Oregon, which provides the
option for terminally ill patients to die with dignity. She has now met the statutory requirements to
obtain the medication that will allow her to die peacefully, when the pain of
her illness becomes too great, on her own terms. She and her husband both describe the relief
they feel knowing that the choice of when and how Brittany will die is now in
her hands and her mom is glad her only child can remain the intelligent,
autonomous person she has always been.
“I don’t look at it every day,” Ms. Maynard says of the
medication she keeps in two prescription bottles in a zippered purse. In fact, as of the latest report, fewer than 65% of the patients who are prescribed the medication have actually chosen to take
it, but having the choice preserves for these patients some of the power and
autonomy that terminal illness and prolonged immersion with the healthcare
system can otherwise drain away.
In recognition of the fact that many people diagnosed with
terminal illness across the country will not have the resources and support
system to do what she did and move to a state with death with dignity laws, Brittany is working with Compassion & Choices to tell her story to spread awareness and raise funds in the hopes of prompting
legislative change in other states. Even
though I personally think it is such a remarkable act of sacrifice to invite an
often-hostile public into such a private time in her life, so that less
judgmental minds might be opened, I am still sorry she could not die with
dignity at home in San Francisco. I am
sorry she had to uproot and move away from so much that is familiar and loved
and come to what will be a chilly Northwestern fall in order to pass away
peacefully as she wants to, and as my state (now her state too) says she
can. I am glad that Oregon could welcome
her and her family, that we could be her home away from home for this purpose,
but I also wish (in all possible ways) that she did not need us at all.
Oregon voters first approved Oregon’s Death with Dignity Act
as Measure 16 on November 8, 1994. I was
13, well before I had any engagement with politics, and even I remember that the
vote was incredibly close (51.3% for and 48.7% against) and incredibly
controversial in the state. I am from a conservative
area of the state geographically (woo, District 2!) with a concentrated Christian
presence that makes up in fervor what it lacks in population density. This means that religiously controversial ballot measures
get heavy opposition locally in op-eds and airwaves, but often pass when they
carry the more heavily-populated, and also more liberal-leaning population
centers throughout the Willamette Valley (Portland, Eugene, etc.).
The voters were ahead of the legislators on this
one, though, and it took three more years to get the law enacted. The legislature even sent it back to the
voters as another ballot measure, Measure 51 in November of 1997, which would
have repealed Measure 16, to be like “hey, are you guys sure you really want to
do this?” Measure 51 failed by a 10 point margin so yeah, Oregon voters were
sure. This kicked off about a decade of
legal and legislative attacks on the law, which seem to have cemented it in
Oregon lore as a point of pride. We are
one of only five states in the country that allow death with dignity and we
were the first. The more politicians
from outside try to take it away, the more Oregonians rally around it as our
own.
After the years of legal and legislative wrangling
following the passage of Measure 16, on October 27, 1997, Oregon became the
first state to allow “physician-assisted suicide,” which is what we in Central
and Eastern Oregon called it at the time – and which I now realize is politically
charged and somewhat of a misnomer.
The term “physician-assisted suicide” brings Dr. Kevorkian
immediately to mind, but what we have in Oregon is significantly different than
the way he brought about the deaths of 130 of his patients. Kevorkian would hook his patients up to a
machine that delivered a deadly dose of intravenous chemicals, or a gas mask
filled with carbon monoxide. The patient
then pushed a button that would start the machine and end the patient’s
life. At the time, Kevorkian was
practicing without a medical license, which had already been revoked by the state
of Michigan.
In Oregon, for one thing, the doctors involved have to have
their licenses, but I’ll get to the statutory requirements in a minute. The basic difference is that there are no
scary machines with terrifying names (Kevorkian named the IV machine the
Thanatron and the gas machine the Mercitron).
The patient is written a prescription for pills, which she, her physician, or an
identified agent of the patient can fill at a pharmacy. She can then take the pills (or choose not
take them) on a day and time of her choosing, in her own home, surrounded by
people who love her. The pills produce a painless
death in which the patient essentially goes to sleep and her breathing and
heart stop.
I say that the adjective “physician-assisted” is perhaps a
misnomer because although the attending physician writes the prescription, the
patient herself decides if and when to take it.
The doctor is not standing over her bedside “assisting” her in flipping
a switch. Once the doctor has met the
statutory requirements, her presence may not even be needed again until it is
time to sign the death certificate.
What are the statutory requirements you might wonder? How do we make sure that family members and
caretakers worn down by medical expenses don’t pressure patients into the
suicide option? How do we ensure that
depressed or mentally ill patients don’t make decisions to end their lives
based on a negatively skewed view of their situation?
Under the Act, two doctors (the patient’s attending
physician and a consulting physician with a specialty in the patient’s disease)
must agree that the patient has an incurable and irreversible disease which
will produce death within six months.
The patient must be, in the opinion
of a court or in the opinion of the patient's attending physician or consulting
physician, psychiatrist or psychologist, “capable” of making and communicating
health care decisions to health care providers.
The patient must make an informed decision based on a number of factors:
(a) His or her
medical diagnosis;
(b) His or her prognosis;
(c) The potential risks associated
with taking the medication to be prescribed;
(d) The probable result of taking
the medication to be prescribed; and
(e) The feasible alternatives,
including, but not limited to, comfort care, hospice care and pain control.
While the attending physician must advise the patient of
these factors to inform her decision, the consulting physician must confirm
that the patient has been so advised, and that her decision is therefore an “informed
decision” under the statute. There are numerous
safeguards built into the process, requiring objective witnesses and the
possibility of mandated counseling if either physician suspects depression, to
guarantee that the patient is capable and making a voluntary, informed, and
unimpaired decision.
There are also built in waiting periods to allow the
patient time to consider her decision. The
patient must request the medication orally and in writing, and then must
reiterate the oral request to her physician at least fifteen days after the
first oral request. There must be at
least fifteen days between the patient’s first oral request and the writing of
the prescription, and there must be at least 48 hours between the patient’s
written request and the writing of the prescription.
No one can willynilly move into Oregon one day to take
advantage of the law the next. You have
to be able to demonstrate Oregon residency in order to be a qualified patient
under the Act. Some of the factors
demonstrating residency include possession of an Oregon driver’s license,
registration to vote, evidence that the patient owns or leases property in
Oregon, or filing of an Oregon tax return for the most recent year. For a patient with less than six months to
live, this level of expense and bureaucracy will not be easy to pull off. This is why Brittany Maynard has chosen to
advocate for broader availability of these laws.
Many of the early fears voiced about Oregon’s law have
proven unfounded. The safeguards have
proven effective in making sure that patients aren’t coerced into taking the
medication. As I mentioned earlier, many
of the people who are prescribed the medication decide not to take it, just
having the option there gives them peace and relief and a sense of some control
over their fate. I remember back in the
1990s there was also a concern that there would be thousands of Brittany
Maynards moving into town from all over the country to die under the law. This has also not proven to be true. In the nearly 17 years since the law went
into effect, only 1,173 people have been prescribed the medication and only 752 people have chosen to take it. That is
hardly hoards of suicide-seekers flowing over our borders and rather supports
the view that the law works well to ensure that the handful of terminally
people who want this choice can get access to it.
Finally, despite requirements under the law that the patient
be informed about all available options, including palliative care and hospice,
fears persist, that patients who choose suicide do so because they simply don’t
understand these other programs. This is patently untrue. In 2012, 97% of patients who made requests
under the Oregon Death with Dignity Act were enrolled in a hospice
program. A 2010 National Journal/Regence Foundation poll found that Oregon residents are generally better informed about end of
life options than the general population across the country. In Oregon, 94% of residents knew about
hospice care and 32% were aware of palliative care, as opposed to 86% and 24%
knowledge of these terms among the national population respectively.
However, these programs, while they have their benefits and
can extend the time a patient can spend with family members, also have their
downsides which only a terminally ill patient can weigh. Even aggressive pain management, cannot keep
ahead of all of a patient’s pain, and can include side effects such as hallucinations,
night terrors, sweats, incontinence, and a loss of lucidity. The patient is at least occasionally
self-aware enough to experience a loss of dignity and autonomy, which can cause
anxiety and depression. Hospice programs
are well-aware of these emotional side effects and often have social workers
and therapists available for the patient and family members to work through
depression.
My family and my friend’s family lost a loved one this year
after rounds of palliative care that balanced the wide, dark void of
morphine-induced anxiety with the heavy sleep it would finally bring. Hospice nurses said chocolate ice cream for
breakfast and dinner was fine because “why not give her whatever she wants?”
and who knew chocolate ice cream could seem bleak or sad? I cannot say enough wonderful things about
hospice, the nurses and social worker were a Godsend for us but in the end they
had the cog-in-a-great-wheel feeling of the little Lego construction workers
with set plastic hands that fit all kinds of tools that ratchet into the
various widgets of the machine of death but do not change its course. I can see how these options might fall short
for some patients. I can believe that
for people who do not have strong religious prohibitions against it, being able
to control exactly when and how you die could bring some peace.
As I mentioned, most Oregon Death with Dignity patients are also in hospice care. Many, like Brittany Maynard,
are also taking other medication to control their pain and illness. There is a risk, though, that someone could
wait too long to make a DWDA request. Once the patient has
progressed, either through psychological conditions, side effects of medication,
from illness, or weakness from lack of food, to the point at which she is no
longer capable of making an informed decision about her own care, she is no
longer a qualified patient under the law.
Moreover, a loss of motor control caused by pain medication could make
it impossible for a patient to take advantage of the Death with Dignity Act because
the patient must self-administer medication prescribed under law.
Maybe this is why Ms. Maynard has chosen a date for her
death. She has picked November 1st,
only a couple weeks away, to end her life.
This day falls just after her husband’s birthday (and a week before
the 20 year anniversary of the passage of Measure 16). It has unnerved some people that she has
picked a specific day, like maybe she will feel locked into it now that she has
it on her calendar and the eyes of the world (and the media) are on her. But I suspect since
she got her 6 month prognosis on April 2, Ms. Maynard is already on borrowed time, as the symptoms of her cancer will have progressed. My hope for her is that the medicine that has
been prescribed for her under Oregon’s law does what it has done for other
Oregon residents before her: merely give her the option to choose whether to take it
or not, and when.
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