For those wondering what
“patient advocates” do, it’s that. Share insights for the patients that come after them, in hopes of helping them have a good experience, and avoid medical harm. (The sentiment is eloquently expressed in this poem shared by Linda
Kenney, who founded MITSS -- Medically Induced
Trauma Support Services-- after nearly dying from an anesthesia error during
ankle surgery.)
“If patients don’t share
their stories, who are you going to learn from?” says Alicia Cole, a successful LA actress who now speaks about her near-fatal battle against necrotizing fasciitis (flesh-eating disease), acquired following "routine" surgery.
But who ARE we, exactly? What DEFINES a “patient advocate”?
Lindsay Nohr Beck, left, with Dr.Nancy Snyderman, at IHI |
I’ve been thinking about this
a lot lately, since a telling audience reaction during a
plenary speech at the Institute
for Healthcare Improvement Forum in Orlando last month, attended by some
6,000 people, mostly providers. On stage was NBC News Chief Medical Editor Dr.
Nancy Snyderman and her long-time patient, Lindsay
Nohr Beck, who pretty much single-handedly reformed insurance benefits so
that cancer patients don’t have to compromise fertility. (Watch the fascinating
and moving interview here).
In telling her story, Lindsay laughingly referenced the negative reaction
when doctors or insurers were told by their staff “the patient advocates are
waiting to meet with you”.
In the audience, this comment
was met by a ripple of knowing (sympathetic?) laughter. A snicker drew my
attention to the man on my left, who met my eyes with a nod and an eye roll. As
a patient advocate myself, it stung.
But then, I realized,
it’s understandable.
Because, what is it that defines a
“patient advocate”, anyway? Is it the nurse who privately encourages a family
to ask for a certain treatment? A mom with a third-grade education who insists
to her doctors “my baby’s breathing just isn’t right?” A father who loses his
son to multiple medical errors and spends a lifetime making sure the same
mistakes don’t befall another family? A person with formal advocacy training
who hires herself out to sit at a patient’s bedside, managing care, paperwork
and billing? A physician who calls a colleague late at night to discuss a
tricky diagnosis? A survivor crippled by multiple botched surgeries and impoverished by legal and medical bills firing off desperate, outraged emails to the news media? Or the elderly man who calmly declines aggressive
intervention for his terminally-ill wife?
Yes, all of the above. We are
a random, diverse and self-defined group. We are collaborative. We are
rebellious. We are seasoned and thoughtful. We are raw and angry. We see good
in every person who devotes their life to health care. We see enemies
everywhere in the “medical/industrial complex”. We have no medical training at
all. We have devoted years to taking courses and achieving certifications to
understand the system and how we can help improve it. We are a rich, bubbling
stew of passions, visions, hurts, head trash, and hope. In short, both before
and after our “medical awakening”, we represent the full spectrum of the human
condition.
I can sympathize with health
care organizations, working to meet financial and cultural benchmarks of
“patient-centered care”, trying to embrace and collaborate with this motley
crew of “patient advocates”. In 2013 I personally was honored to work with the
federal Partnership for
Patients (PfP), the Center for Connected Health (CCH),the Institute for Healthcare Improvement (IHI), the Consumer's Union Safe Patient Project, the Institute for Patient-
and Family-Centered Care (IPFCC), and the National
Patient Safety Foundation (NPSF), among others. Of course my colleagues and I appreciate being invited into the
conversation, having our input solicited, and in notable cases, seeing our
feedback incorporated into practice. (IHI and the PfP in particular deserve credit for taking steps to support professional development for patient advocates.)
But if we patient advocates
want a beefier role in the dynamic of quality improvement than that of
“invited guest”; if we truly want to lend meaningful support to clinical excellence, have
impact at health conferences, ensure that policies are patient-centric, carry weight in legislatures and on medical boards, and inspire
physician practices, we have to elevate ourselves as a group, to consistently
convey the very leadership, professionalism and respect we expect from our
providers. Otherwise, how will they
avoid the “box of chocolates” dilemma? (“You never know what you’re gonna
get”)?
More patient advocates than
you might think have achieved that respect. Listen to “e-Patient” Dave deBronkart, Patty Skolnik, Regina Holliday, Alicia Cole or Trisha Torrey do a keynote
speech. Invite Helen
Haskell to head a committee, develop a protocol or advise your board. Ask Ilene Corina to conduct a
patient advocacy training. Look to
Julia
Hallisy for patient empowerment resources. Ask Christian John Lillis how to organize and mobilize a patient/provider coalition. Learn from Kim Witczak how to pull a patient-centered conference together. Get Sue Sheridan to review your hospital's policies on disclosure of harm. (By the way, each of these
remarkable people can do any of these things). These patient advocates
(respectively, a marketing and IT geek, corporate executive, artist, actor, teacher, archeologist, postal worker, dentist, fundraising specialist, advertising consultant and banker) took a traumatic medical
experience and transformed it into something instructive, positive and inspiring.
And (with sincere apologies for not mentioning others) they’re just a handful of the patient advocate dynamos out there I’ve had the
good fortune to meet and learn from. (And there are many more I look forward to meeting)!
But, like pioneers in any new
social movement, most of us work with big passion and little help. Though some are
modestly compensated through speaking, honoraria or grants, and some head organizations supporting patient agendas, (and some have had projects successfully funded on Medstartr), there’s no
over-arching professional infrastructure that exists to support patient advocates’ professional training and development, underwriting the cost for their time and expenses to attend conferences, secure vendor booths, or host “networking”
events.
Pioneering, by definition, is
lonely work.
But we continue, hoping we'll become obsolete-- when the issues of safety, inclusion, access and fairness we raise are honestly, meaningfully and routinely
addressed. At the same time, the snickering and shuddering at the prospect of
working with “patient advocates” will stop when we become respected as
a group for the wisdom we've gained from our experiences, and the consistent professionalism with which we share them.
To get there, both sides need leaders that
focus on what we share, instead of what separates us. Who can, with awareness,
re-cast seeming debacles into opportunities.
Richard C. Boothman, JD, MITSS 2013 keynote speaker (Photo courtesy of MITSS) |
I leave you with an excerpt from Boothman's speech--
and an invitation to be inspired yourself.
…The journalist “…was wrestled to
the ground, beaten severely and hauled away,
sentenced to three years in prison
and reportedly tortured.
Photo from Seattle Times |
Later the same day at
another press conference with characteristic, self-indulgent swagger, President
Bush quipped, “If you want the facts, it’s a size ten shoe.”
I have played that
incident in my mind over and over for the past five years.
I think to myself, what
if? What if, in the chaos that
followed the incident, as that man was being wrestled to the floor and beaten,
the United States President had stepped down from the dais, parted the crowd .
. . and helped him up? And what
if, recognizing the depth of emotion that compelled that journalist to do
something so risky, so dangerous, so desperate - the same emotion that was
driving thousands of Iraqis to protest in the streets - what if our President
had invited him to meet privately to talk about how he, and his fellow Iraqis
viewed the United States’ occupation of their country? To explain how their lives had been so
profoundly changed by a mistaken war?
What a stunning scene that
might have been, don’t you think?
It takes more guts to
understand, than it does to make light of a man’s desperation. It’s a lot easier to label someone than
to meet them. It’s not a sign of
weakness; it’s a sign of strength and compassion and moral conviction and
respect. This was an opportunity
to demonstrate on a very basic level, that though we shared sacrifices profound
and intimate and dear with the people of Iraq, we also acknowledged the greater
impact that war and ensuing occupation had on the Iraqi people. What a
statement that might have been to the people of Iraq, to the people of the
Middle East, to the world.
What
are we afraid of? What prevents us
from making such basic human connections?"