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Experts and activists discuss how to get right

care for patients
Article in BMJ (online) April 2016
DOI: 10.1136/bmj.i2406

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Jeanne Lenzer
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BMJ 2016;353:i2406 doi: 10.1136/bmj.i2406 (Published 29 April 2016)

Page 1 of 3

Feature

FEATURE
RIGHT CARE

Experts and activists discuss how to get right care

for patients
Jeanne Lenzer reports on a growing movement aiming to overcome the medical and social barriers
to appropriate care
Jeanne Lenzer associate editor, The BMJ
The fourth Lown Institute conference held in Chicago, Illinois,
in April brought nearly 300 doctors, patients, policy makers,
and activists together to discuss barriers to right care. The
focus was on how to tackle the problems of bad science,
undertreatment, and overtreatmentand how to build a
movement for change, which several speakers likened to the
civil rights movement.
A recurrent theme among speakers and participants was that
fee-for-service medicine and profit driven testing and
interventions are major obstacles to right care. Speakers
emphasized that this could be achieved only if we
simultaneously address issues such as the wealth gap, social
disparities, and corporate control of politics.

Shannon Brownlee, senior vice president of the Lown Institute,

told The BMJ that the presence of a wide range of activists and
organizations at the conference gives her hope that a genuine
new social justice movement is emerging.

More money for less: the harms of finding

things
Rita Redberg, editor of JAMA Internal Medicine, said, We
spend $3tr, far more than other countries, yet we still have
millions and millions of people without access to healthcare.
She added, The Institute of Medicine estimated that $1tr a year
is spent on waste or overuse. Both physicians and patients
imagine that if some care is good, more must be better, and that
a test cant hurt.

Insurance coverage of unnecessary tests, said Redberg,

contributes to overtesting and overtreatment: The United States
Preventive Services Task Force gave a grade D recommendation
to PSA [prostate specific antigen] testing but Medicare still
covers it, so it means a lot of men are still getting a test that is
costing not just money, but lives.
From the audience, Jill Wruble related her own experience with
the unintended consequences of medical testing. A radiologist
at the West Haven Connecticut Veterans Administration Medical
Center and clinical assistant professor at the Yale School of

Medicine. Wruble noted that tests may not only cause physical
harms but have adverse medical, social, and financial
consequences.

Wruble said she learnt the hard way. At a previous job, she idly
gave herself a DEXA (dual energy x ray absorptiometry) scan
when a patient cancelled an appointment. Despite decades of
athletics, Wruble said that the scan, quite improbably, showed
borderline osteopenia at L1. She casually mentioned this to
a primary care physician at an annual physical exam. The
physician noted it in Wrubles medical record, which was later
requested by an insurer when she sought to update her disability
insurance. The insurer flatly denied her policy renewal. I had
to see an endocrinologist and take calcium, and a year later
was offered a higher cost, inferior, short term policy with a rider.
To gales of laughter from the audience, Wruble remarked that
she deliberately has not had a physical exam in the 15 years
since.

We need a culture change

Joanne Lynn, director of Altarum Institutes Center for Elder
Care and Advanced Illness, in Washington, DC, said that simply
having good information isnt enough: emotions, habits, and
money get in the way of right care.
Lynn cited the Study to Understand Prognoses and Preferences
for Outcomes and Risks of Treatments (SUPPORT),1 which
found that slightly less than half (46%) of doctors knew when
their patients preferred to avoid cardiopulmonary resuscitation
at the end of life; nearly half of patients didnt have
do-not-resuscitate orders written until two days before they died,
and half of conscious patients who died in the hospital were
reported by family members to have moderate to severe pain at
least half the time. Unfortunately, interventions aimed at
enhanced patient-physician communication with greatly
improved information and nurses providing counsel failed to
improve outcomes.

Jeanne.lenzer@gmail.com
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BMJ 2016;353:i2406 doi: 10.1136/bmj.i2406 (Published 29 April 2016)

Page 2 of 3

FEATURE

Lynn said deep seated emotions and habits interfere with change
and that we have to change the default pattern of how we
manage end-of-life care. She told the story of one of her patients,
a woman with dementia who died in her 90s in a nursing home.
She said, autopsies were routinely offered in her practice and
the patients autopsy revealed a bleeding gastric carcinoma. The
woman had two daughters, both in their 70s. One of the
daughters reacted angrily, saying, How could you have missed
this? She was furious that her mother died with an untreated
cancer. But the other daughter calmed her sister, saying She
couldnt have had a better life or a better dyingtreatment
would only have made her life miserable.
Lynn told The BMJ, We have to change the default pattern
of care. Very old people with substantial disability are often
much more concerned about housing and food, and less about
long shot interventions. She said, In Detroit, there is a one
year wait for Meals on Wheels [a food program for people
confined to their homes]. If there was a one year wait for mitral
valve surgery, wed be up in arms. We have to learn to advocate
for the things that matter most.

But many patients request treatments or tests only because

doctors and industry cultivate those demands. Kim Witczak told
the story of her husband, who developed akathisia and
committed suicide after his physician prescribed sertraline to
treat his insomnia. Unfortunately, his doctor failed to recognize
the akathisia as a side effect of the drug and told him to keep
taking it.
Witczak said the recent United States Preventive Services Task
Force recommendation that all adults should be screened for
depression is an example of how doctors encourage faith in
antidepressants. She said that the most widely used screening
tool for depression, PHQ-9, was created by Pfizer. She asked,
What if youre going through a divorce, or you cant pay the
mortgage? The test wont distinguish that, of course, and
hurried doctors generally respond with a prescription. She said,
I truly believe the public needs to push back. Maybe what
weve been told isnt the answer. Another shooting in the
schools and were told we need more screenings, more mental
treatment, more, more, more. But maybe we need less.

Moral distress, social disparities, and

living on a park bench
Nneka Sederstrom, director of ethics at Children's Hospitals
and Clinics of Minnesota in Minneapolis, said the stress of a
bad healthcare system is not just hurting patients. Many doctors,
she said, have moral distress about situations they feel helpless
to change. She told the story of a resident doctor who was deeply
disturbed that she was forced to resuscitate a 90 year old in the
middle of the night because the attending doctor had horrible
practices around end-of-life care.
Echoing Lynns comments, Lauren Taylor, a PhD student at
Harvard Business School and coauthor of The Healthcare
Paradox, said the social needs of the US public are being
ignored while money is lavished on medical technology. The
US spent ninety cents [on social services] for every dollar spent
on healthcare. But, she said, other wealthy nations belonging
to the OECD [Organisation for Economic Cooperation and
Development] flip that ratio, spending $2 on social welfare,
such as job training, housing, and nutritional care, for every
dollar spent on medical care, and those nations have longer life
expectancies and lower infant mortality than the US.2 The
problem of social disparity was front and center in a presentation
by Jeff Brenner, a family physician and executive director of
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the Camden Coalition of Healthcare Providers, in Camden, New

Jersey. Brenner opened his solo practice in 2000, in a poor
Puerto Rican and Dominican community beset by violence. He
said, Primary care is utterly failing. We run from room to room
to room in meaningless increments of meaningless 15 minute
visits.
Brenner concluded that his patients, who were swept in and
out of a vortex of chaos, were experiencing chronic stress that
would lop up to 20 years off their lives. Right care under these
circumstances, he said, means changing these conditions: If
you have an 82 year old living on a park bench, nothing you do
[medically] will make a difference.
After identifying how fragmented care led to disproportionate
costs for patients with high needs, his work caught the attention
of writer and surgeon Atul Gawande, who profiled Brenner in
the 2011 New Yorker article The hot spotters.3 Brenner and
his group raised money to put people with highly complex
medical problems into new apartments with various supports.
Not only did their health improve but costs went down.

Bad science
John Ioannidis, professor of medicine and health research and
policy at Stanford University School of Medicine, told the
audience that even meta-analyses performed by the best
meta-analysts in the world still end up with absolutely no
agreement. One drug, he said, is the best in one ranking and
the worst in another. He said, There are so many steps in a
meta-analysis and so many decisions to be made that it isnt
surprising to find conflicting results.
Even Cochrane systematic reviews came under scrutiny: in a
study he conducted with Fleming et al, of all 1394 systematic
reviews published from January 2013 to June 2014, only 608
had GRADE [Grades of Recommendation, Assessment,
Development, and Evaluation] assessments, and overall only
25 studies (4.1%) had a high quality of evidence reported that
allied both to significant results and a favorable interpretation
of the intervention by the reviewers.4

Ioannidis said that while a lot of people believe we can do

more with observational data, even with adjusting for different
variables, any result is possible. Salami sliced, data dredged
papers are becoming more frequent and public policy is derived
from spurious studies.
He said evidence based medicine should be about integrating
individual clinical expertise with the best external evidence
available. Instead, he said, Its mostly becoming finance based
medicine to capture the largest possible market share.

Money, money, money

If one theme was repeated throughout virtually all of the
presentations and workshops, it was how profiteering is
interfering with good science and right care. Ioannidis described
a study he was involved in that found meta-analyses conducted
by industry authors were 22 times less likely to publish any
negative caveats about antidepressants than independent
researchers.5 Adriane Fugh-Berman, associate professor in the
department of family medicine at Georgetown University
Medical Center, told the audience that profiteering is behind
the lowered thresholds for disease diagnosis and the outright
manufacture of new diseases. She said industry likes to use
key opinion leaders to promote drugs because while its illegal
for companies to promote their products for unapproved
indications, its not illegal for opinion leaders to do so.
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BMJ 2016;353:i2406 doi: 10.1136/bmj.i2406 (Published 29 April 2016)

Page 3 of 3

FEATURE

Roy Poses, president of the Foundation for Integrity and

Responsibility in Medicine, based in Warren, Rhode Island,
cited work by Transparency International that found 43% of
respondents believe US healthcare is corrupt and 64% believe
the government is controlled by a few big interests.6

Time for a movement

Casey Quinlan, a journalist and self described patient level
policy wonk, with Mighty Casey Media, told the audience in
a fiery speech that she watched on as her grandmother was
treated by an avuncular doctor who prescribed her 50 different
medicines. The family fired the doctor, and her grandmother
went on to live many more years. Her parents too suffered at
the hands of doctors, and when Quinlan herself had cancer
diagnosed in 2007, she says she took all my parents had taught
me, and put it to work I wrote a book about managing medical
care. I became a global voice for patient empowerment, open
science, and participatory medicine. The central problem,
Quinlan told The BMJ, is that healthcare is a $3tr industry, Who
wants to give up any of that? All of us, whether its clinicians
or patients or administrators, have either acquiesced or actively
worked to build this system and now we all have to work
together to change it.
Quinlans call to action was joined by other activists. Phil
Thompson, an urban planner and political scientist at the
Massachusetts Institute of Technology in Cambridge, said he
grew up in a family and a network of churches very involved
in the civil rights movement. He said, I find it strange when
people ask why I care about healthcare. He explains that in
Brooklyn, where he lived for many years, life expectancy among
black men is worse than in Bangladesh and equal to that of men
in Iraq. When the 20th health center closed in Brooklyn, he was

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appalled, asking: Is closing a hospital because it is losing

money . . . right?

For the healthcare movement to succeed, Thompson said change

must first take place among the people trying to make the
change. The real knowledge leaders are the people who live
in the communitybut we cant build a movement if everyone
shrinks when a doctor walks in a room. And change doesnt
come easy. He said while documentaries about the civil rights
movement show protests and marches, what isnt shown is the
years of work that precede visible change. He said, You have
to withstand blows and have the courage and confidence to
move forward.
Competing interests: I have read and understood BMJ policy on
declaration of interests and have no relevant interests to declare.
Provenance and peer review: Commissioned; not externally peer
reviewed.
1

2
3
4

5
6

SUPPORT Principal Investigators. A controlled trial to improve care for seriously ill
hospitalized patients. The study to understand prognoses and preferences for outcomes
and risks of treatments (SUPPORT). JAMA 1995;274:1591-8. doi:10.1001/jama.1995.
03530200027032 pmid:7474243.
OECD. Health statistics 2015. http://www.oecd.org/els/health-systems/health-data.htm.
Gawande A. The hot spotters. New Yorker 2011 Jan 24. http://www.newyorker.com/
magazine/2011/01/24/the-hot-spotters
Fleming PS, Koletsi D, Ioannidis JP, Pandis N. High quality of the evidence for medical
and other health-related interventions was uncommon in Cochrane systematic reviews.
J Clin Epidemiol 2016;S0895-4356(16)30024-5. doi:10.1016/j.jclinepi.2016.03.012. pmid:
27032875.
Ebrahim S, Bance S, Athale A, Malachowski C, Ioannidis JP. Meta-analyses with industry
involvement are massively published and report no caveats for antidepressants. J Clin
Epidemiol 2016;70:155-63. pmid:26399904.
Transparency International. Global corruption barometer 2013. http://www.transparency.
org/gcb2013.

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