Dialysis Is Life-Saving, but Not Perfect: We Can Do Better

How to Make a Killing: Blood, Death and Dollars in American Medicine: 9780393866513: Medicine & Health Science Books @ Amazon.com

On August 1, Tom Mueller’s book How
to Make a Killing: Blood, Death and dollars in American
Medicine
was published on the dialysis industry. It has created
quite a stir among dialysis providers with some criticizing his
reporting. Mueller collected data and interviewed patients, family
members, patient advocates, nephrologists, current and former dialysis
staff of all disciplines, attorneys, union leaders, healthcare policy
experts, and economists. He even interviewed nephrologists and nurses
from other countries. For his research, he also visited dialysis
clinics. His book starts with the history of dialysis and the changes
that have made it what it has become, a miracle procedure that
saves lives—but at a high cost to the government, insurers, and
patients.

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Mueller spoke to several dialysis history-makers like Dr. Chris
Blagg
who led Northwest Kidney Centers for 27 years. Dr. Blagg
saw many changes in dialysis from the early days when dialysis was done
in hospitals and many patients were trained to do dialysis at home. Dr.
Blagg wrote 149 peer-reviewed articles about dialysis and a book about
the history of Northwest Kidney Centers.
I served with Dr. Blagg on the Life Options Rehabilitation
Advisory Council (LORAC), a program founded by the Medical Education
Institute (MEI) in 1993
that included nephrologists and all
disciplines of dialysis staff plus an exercise physiologist. Dr. Blagg
and Life Options advocated with patients, staff and policymakers in
support of home dialysis and rehabilitation. Dr. Blagg died in 2022.

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Mueller
interviewed multiple patients, including Nancy Spaeth, who lived the
longest after kidney failure—56 years. Nancy was selected for dialysis
by the life and death committee and started dialysis in 1966 as a
patient of Dr. Belding Scribner, a dialysis pioneer who invented the
Scribner shunt. Nancy started on in-center HD, but 2 years later was
trained to do HD at home and did nocturnal HD. Over the course of kidney
failure, Nancy had four transplants. After her kidneys failed,
she attended college, married, raised two children, and worked as a
teacher and nurse
. Nancy also served with me on MEI’s LORAC.
She gave multiple presentations across the U.S. and overseas and
preached a salt limit, which helped her stay healthy. She advocated with
healthcare professionals and policymakers for rehab, nutrition education
and home dialysis. Nancy died in 2022.

Mueller’s book addresses the history of Medicare coverage of dialysis
and transplant and how the 1972 law that provided that coverage
unwittingly hurt home dialysis by paying doctors less for treating home
patients
and requiring patient copays for home dialysis
equipment and supplies. When Congress considered eliminating these
disincentives, lobbyists for a large dialysis company
shared inaccurate data to make home dialysis appear less safe
than in-center
dialysis and claimed that Drs. Scribner and
Blagg lied about the benefits of home dialysis. Based on that, Congress
did not change the disincentives for home dialysis and Medicare
continued to pay more for in-center HD. With financial incentives
favoring in-center HD, dialysis clinics popped up everywhere, many of
which didn’t offer any type of home dialysis and most of which are
for-profit now, with fewer non-profit or hospital-based clinics. We can
do better.

Kidney disease is more common among minorities, who may have lower
income, are more likely to have diabetes and/or high blood pressure, yet
may have less access to healthcare and live in neighborhoods where fast
food is plentiful and access to grocery stores with healthy food is less
available. Mueller cited research showing that African Americans
are more likely to be treated in lower rated clinics, to be hospitalized
more, to not be offered home dialysis, to be slower being waitlisted for
transplant and to get a transplant less often than white
patients
. He pointed out that until 2021 the eGFR calculator
over-estimated kidney function in African American which delayed access
to dialysis and transplant. We can do better.

Dr. John Agar

Mueller wrote how internationally recognized Australian nephrologist
Dr. John Agar and most other nephrologists believe dialysis
sessions should be individualized to the patient
instead of
“cookie cutter.” They believe sessions should be long enough to avoid
what Agar calls “bazooka
dialysis
.” Research shows that delivering dialysis with high
ultrafiltration rates stuns organs, kills residual kidney function, and
causes patients to have such symptoms as cramping, fainting, and feeling
drained for several hours after dialysis.

Mueller interviewed many
staff who were stretched thin caring for too many patients while
required to do multiple tasks in a short time
. They had poor
morale, little patience, and shortened tempers. The combination of
patients feeling bad emotionally and physically and staff feeling
overwhelmed creates a tinder box for conflict. Speaking of conflict,
Mueller spoke with hundreds of patients about their dialysis care and
with Arlene Mullin who
has served as a patient advocate for years and connects patients who
complain about their care at clinics or face involuntary discharge (IVD)
with pro bono attorneys. Mullin told Mueller about cases that
might have been retribution for having filed complaints or written
letters to elected officials complaining about their care
.
Meanwhile, patients told Mueller they hadn’t done what their records
accused them of doing. The book included contents of a staff member’s
letter in which she said her manager pushed her to falsify a
patient’s records to justify involuntary discharge
. Mullin said
this was not uncommon—which is shocking. Mullin told him that most of
those who contact her are people of color.

Mueller also quoted a well-known Canadian nephrologist who related a
conversation with a U.S. nephrologist who described how he
triggered a patient’s behavior
to justify terminating his dialysis
care
. Another nephrologist told Mueller that he’d observed
staff exaggerating evidence in patient records to support involuntary
discharge. Mueller wrote that this happens more with Medicare and
Medicaid patients and less with commercially insured patients—since
those plans pay more. He quoted a commercially insured patient’s spouse
who said after she questioned high bills for dialysis the clinic built a
case with false “facts” that led to her husband’s discharge. He
wrote—and I’ve observed when I’ve tried to advocate for
patients
—that those who are discharged are often
blackballed and can’t find another doctor or dialysis
clinic willing to admit them within long distances from their home.
Those who can’t find another clinic must get care at hospitals, and may
only get that care when their labs indicate they need dialysis
emergently. This costs Medicare, Medicaid and other payers more.
Involuntary discharge from dialysis is unique to the
U.S.
It doesn’t happen elsewhere. Mueller couldn’t find U.S.
data on involuntary discharges, but the ESRD Networks track these data.
In 2020, 663 patients were at risk of losing their access to care. Of the 400 patients who got 30-day
letters threatening IVD, Networks averted 27 and found another clinic
for 106. What happened to the other 267 patients? We
can do better.

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About profit-driven healthcare, Mueller describes several instances
of how chasing profits led dialysis companies to take actions
that led to government fines,
and cites specific cases in the
Epilogue and Annotations—Gambo paid over $350 million for civil and
criminal allegations of Medicare fraud, for example. DaVita and
subsidiaries paid $1.5 billion. Fresenius paid $231 million in a bribery
case and $250 million to settle more than 10,000 GranuFlo lawsuits.
Mueller pointed out that non-dialysis providers have been fined and CEOs
have even gone to jail for greed-based actions. If dialysis companies
can pay that much money in fines, it seems they could pay more to
provide optimal care and staffing. We can do better.

Mueller wrote that outcomes are better in nonprofit clinics
than in for-profit ones
. This point has been disputed by
for-profit providers. However, I found several
additional articles published after he stopped writing that support what
he wrote:

  • One reported the odds of dying were 7% higher in a
    for-profit clinic
    than in a not-for-profit clinic.

  • Another found adult patients in for-profit clinics were
    less likely to be placed on a transplant waiting list
    , to
    receive a living donor transplant, or to receive a deceased donor
    transplant compared to patients in nonprofit clinics. After a coding
    error was corrected and the data re-analyzed, for-profit clinics had
    2.6% fewer patients listed for transplant, 0.9% fewer living donor
    transplants, and 1.4% fewer deceased donor transplants.

  • A study of pediatric patients found that those
    at for-profit clinics were less likely to be waitlisted or receive a
    living or deceased donor transplant. Differences were greater when
    pediatric patients were treated at a freestanding clinic. The authors
    stated most pediatric nephrologists treat patients in hospital-based
    clinics, not freestanding ones.

  • Another study found that the pediatric patients’ risk of
    death was twice as high when they were treated at for-profit dialysis
    clinics
    compared to those treated at nonprofit clinics.
    Improving children’s access to transplant at for-profit dialysis clinics
    could reduce that risk.

Again, we can and must do better.

These are just some things Tom Mueller wrote about in his book. In
the last chapter, he cautions that many of the problems relate
to what he calls “loss of homeostasis.”
In his opinion, we have
accepted too much for too long. There are those who will say that the
book exaggerates and that things he reports don’t happen. Maybe they
don’t in some/most clinics, but even if they happen in a few
clinics, we can do better
.