Nissenson writes: “What caught my eye in the [Sack] article,
however, were some characterizations of dialysis: “Since receiving a diagnosis
of diabetes-related renal disease in his mid-40s, he had endured the burning
and bloating and dismal tedium of dialysis for nearly a year”; “Only half of
dialysis patients survive more than three years”; “Many of the 400,000
Americans who are tethered [italics mine] to dialysis”; “Dialysis … saps the
productivity of caregivers as well as of patients.” OK, anyone who has cared
for dialysis patients knows that being on dialysis is difficult, and none of us
is satisfied with the clinical outcomes or quality of life of our patients, but
how often do we or our patients reflect on how far we have come, not just on
how long and difficult the road ahead remains?
“Recent research suggests that more frequent and longer
treatments offer the hope of enhanced survival, fewer hospitalizations and
higher quality of life….we would do well as nephrologists to read the inspirational
book written by Lori Hartwell, someone who has had a life filled with illness,
dialysis and transplantation. Lori’s book is “Chronically Happy: Joyful Living
in Spite of Chronic Illness.”
Allen Nissenson is certainly trying hard to put a positive spin on dialysis. However, he must be seeing a different population of patients at DaVita
or at UCLA, where he was previously practicing, than I currently do at the
Brigham. I rarely, if ever, see or hear a patient “reflect on how far we have
come”.
Most of my patient’s are desperate to come off dialysis by getting a
kidney. Or they want me to change their dialysis prescription, or something, anything, to make them feel better. In fact, the best data
we have agrees with my clinical observations. Data comes from health-related quality of life (HRQOL) surveys, like the HEMO study (in Fig. 1), that hemodialysis in the United States is pretty tough, and that patient’s
are really quite miserable. In fact, some domains of HRQOL for dialysis patients are markedly lower than that of the general population.
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| Fig. 1: HRQOL from the HEMO Study; Source Unruh et al, 2003 |
I looked around on Pubmed and conducted some fairly
extensive Google searches on the internet and couldn’t locate any longitudinal
data on HRQOL on DaVita patients. Has HR-QOL been improving at DaVita? Does Allen have HRQOL data meaningfully different from the HEMO data, that shows things getting better with newer DaVita treatment strategies? Is DaVita's HRQOL data better than other large dialysis organizations (LDO’s)?
Still more to the point, perhaps, than Allen's sentiment of “how-far-we-have-come” is what DaVita has actually done - aside from fancy talk in press releases - to improve patient quality of life in it's units across the world?
Nissenson continues: “Had you never been born,
countless millions would have died of kidney failure. The current dominant
treatment, dialysis, is not perfect, but it is continually improving. Those of
us entrusted with caring for this fragile group of patients must always
remember that we are also treating families and caregivers. The responsibility
is enormous, but by working together — doctors, nurses, social workers,
dietitians, technicians, families, caregivers and researchers — we can continue
to do what is the true calling of medicine: provide holistic, patient-centric
care that considers all of the unique attributes of each patient and family and
strives to enable all patients to live the life to which they aspire. After
all, who won the race, the tortoise or the hare?”
How long, I ask you, can we nephrologists bury our head in
the sand? Aren't we ducking the point made by several articles in the scientific arena, as well as experiences of patients in lay-publications, that dialysis patient’s
are pretty miserable on dialysis; that they are tired of the slowly incremental “tortoise-like”
approach to improving care, and that they demand and, yes, are hungry for something better. The
data suggests that frequent and longer dialysis is an answer - maybe not be the whole answer - but at least a part of the answer. And, it's a start. For dialysis patients to feel better, not everything has to conform to Aesop's famous fable.
