Simple document helps us take charge of our deaths
By Roberta Ness | March 15, 2014 | Updated: March 15, 2014 5:21pm
"How We Die" author Sherwin Nuland, whose 1994 book undermined the mythology of the "good
death," passed away earlier this month. The cause was prostate cancer, a disease that typically
involves pitiful wasting and painful bone metastases. "How We Die" detailed the awful, agonizing and
often disgusting aspects of each of our final travails. Those attributes, Nuland underscored, are not
the exception but the rule: Very few people in his 35 years of clinical experience had died well.
Nuland urged us to control our own destinies by shedding the self-deception of a graceful passing
and to "make our own choices" in controlling the circumstances and timing of our deaths.
Less than a year ago, the state of Vermont joined Oregon and Washington by legalizing
physician-assisted suicide. In a Huffington Post poll conducted in 2013, half of Americans thought it
should be lawful for a doctor to assist a terminally ill patient requesting suicide, while only 29 percent
said it should be illegal. In Texas, of course, illegal is just what it is. As a community, we may
eventually decide we want our Legislature to give us the freedom to request treatments to end
misery. But even without this, every Houstonian today has the right and the opportunity to refuse
interventions that would pointlessly extend anguish.
Few of us are prepared for our final medical encounter. In a 2009 population study among middle-age
and older respondents, most had a last will and testament but only 30 percent had written out their
living will or health care power of attorney. Another survey found that even among patients who have
terminal illnesses, only half have these written "advance directives."
In the absence of specific direction, our doctors feel bound to do everything necessary to sustain life,
even if that involves medical interventions that go against what family or friends say we have
previously expressed. Patients whose advance directives indicated a desire for limited end-of-life
measures were only one-third as likely to receive aggressive care, according to a 2010 study.
Conversely, patients who had requested all possible life-saving interventions got such care at a
twentyfold higher rate.
One-quarter of all Medicare expenditures, $100 billion annually, is spent in the last year of patients'
lives - the majority in the final 60 days. Programs that increase the use of documented advanced
directives have been shown to reduce Medicare costs. A back-of-the-envelope calculation suggests
that getting 10 percent more people to write out their wishes could save $8 billion to $10 billion in
annual health care costs.
Why would so many of us neglect such a simple task with
such impactful consequences?
A team of students from the Innovative Thinking class I
teach at the University of Texas School of Public Health may
have discovered the reason, as well as a solution.
Nancy Tucker, Robert Reynolds, Stephen Jones and John
D'Amore interviewed Houston-based patients, their families
and doctors about their willingness to discuss and document
advance directives. What they encountered was a wall of
fear, denial and guilt. Many families believed that talking about death wished it on loved ones.
Doctors felt death represented failure and invoked shame.
The students mused: What if death was not equated to callousness or incompetence but to the
inevitable? Perhaps Ben Franklin got it right when he said, "Nothing in life is sure except death and
taxes" - and this maxim led them to a solution.
Here's how it would work. A form would be offered at the time of hospitalization, along with consent
and HIPAA (Health Insurance Portability and Accountability Act) forms. Or the form could even be
mailed out every year by the U.S. government, looking much like a tax form.
Either way, easy-to-use check-off boxes would be there for intubation, force-feeding, resuscitation,
etc., each elected (or not) under various circumstances. Updates could be made at every admission,
or annually with tax submission. Rebates could even be offered for completing the advanced directive
form.
Discussions of death (and taxes) are always controversial. An early version of the Affordable Care
Act proposed an incentive to physicians to discuss end-of-life care. Reframed by some in Texas as
"Death Panels," the rider was quickly removed. Perhaps we have gotten beyond this and can instead
get behind the idea of completing advance directives as a bureaucratic obligation.
Meanwhile, a quick Internet search brings up forms that allow us to write out preferences for the end
of life. We Texans pride ourselves on being independent thinkers and self-starters.
Nuland left us an enduring gift - the advice to take charge of our deaths just as we take charge of our
lives.
Ness is dean and M. David Low Chair in Public Health at the University of Texas School of Public
Health.