Editor- I invited Dr. John Sadler to provide his perspectives on dialysis care in the US.
Commentary- Dr. John Sadler
When I began to care for people with chronic renal failure in the early 1960s, they all died. All I could do was try to mitigate their symptoms, try with little success to slow the process, and comfort the patient and family as life was lost. When we became able to do chronic dialysis and keep people alive, I was thrilled. I still am. At first there was so little capacity that patients were highly selected to be free of comorbid disease or systemic disease, motivated to return to their productive life, and had a family or other support that was effective. Those early patients did well, as their selection predicted. When, after a long struggle, ESRD care was granted Medicare benefits, selection practices declined drastically. Almost anyone whose kidneys failed who wanted treatment got it. So now most dialysis patients have renal failure as one component of a systemic disease in advanced stages, and comorbid conditions are common. Despite that almost 80% of patients survive each year. That’s not a bad record.
ProPublica came out with a dramatic article which picked up
some of the worst practices in dialysis: sloppy, uncaring clinicians, absent or
perfunctory nephrologists, unsanitary facilities – and claimed those were the
norm. I was and am offended. I was interviewed for the article, and little of
what I said was quoted.This is inflammatory and misleading journalism. The
findings they report are true, but not the norm. The vast majority of clinical
staff in dialysis facilities take pride in doing a good job, and in the
appreciation patients express. Doing a job this demanding, repeatedly and at
length, is nearly impossible without that gratification.
Every week, over 300,000 American patients receive dialysis,
most at the hands of competent, skilled clinicians who are sensitive and
caring. Many of them are good teachers. That is important, since all chronic
disease care requires active participation by the patient, and care like
dialysis that imposes limits on diet, fluids, time and activities is a
disciplined existence, or it is a troubled and often short existence. Patients
have to learn what is important in order to do their part. The team of nurses,
technicians, dietitians and social workers all take part in helping the
patients learn to survive and continue to lead useful lives. Organizations like
the Medical Education Institute, with its Life Options program, defined kinds
of rehabilitation that resonates with staff and encourages patients to make
themselves better at the level of their capability. Every patient isn’t
motivated; every staff member isn’t empathetic; but most are, and they are a
large part of the reason the ESRD program must be considered a success. 80%
alive instead of 100% dead is an accomplishment.
The dialysis process has evolved slowly but continuously
over 40 years to become safer, more efficient, less symptomatic. Machines are
more reliable, accurate, and perform many functions formerly required to be
done by staff directly. Data systems improve our understanding of the outcomes
of care, and enable tabulations and compilations of data the allow us to assess
the efectiveness of practices, and to change them to improve. Dialysis
clinicians have defeated hepatitis B, eliminated uremic pericarditis and most
abnormal bleeding; have improved bone care substantially, and sharply moderated
anemia. These are not uncaring or careless people, and they are the norm in
ESRD care.
Could we do better? Of course, but this care is personnel
intense, demands a significant part of the patient’s waking hours, and costs
are high. That last factor limits options and causes many in government and
elsewhere to deplore the program. The cost has been controlled ferociously by
CMS, and the community of clinicians, manufacturers, and vendors have
responded. A number of manufacturers no longer exist – no profit, no survival.
The hands-on care of patients has gone from physician to nurse to patient care
technician with no advanced education, and the measurable quality has held;
amenities and contact time may be reduced, but measured quality of care
remains.
Would more frequent dialysis improve care? We believe so. It
is simple logic that interrupting the rise in metabolic wastes earlier and more
frequently would allow a more nearly normal condition. But it costs more to do
it, and countervailing savings in hospitalizations and complications are not
clearly demonstrated. Many patients refuse to spend more days receiving
dialysis. Who can blame them? Although dialysis replaced catastrophe with a
nuisance, it is a serious nuisance, and one no one would choose it if were not
necessary to sustain life.
Is transplantation better? If successful, which it usually
is, unquestionably. But we don’t have enough donors at any point. Most deaths
do not allow organ donation; there are not enough family members to donate;
improved drug regimens and laparoscopic donor surgery have enabled a wide group
of unrelated donors to come forth. But there still aren’t enough kidneys. And
remember, with a much older population with systemic disease and comorbid
conditions as the norm, many patients are at high risk for an appendectomy, let
alone a kidney transplant.
This is not a sorry tale of woe, ProPublica, but a record of
accomplishment with imperfections and more to learn and improve.
