I am so happy that HDC has posted in their update that the American Kidney Fund is to bestow its highest honor on Dr. Carl Kjellstrand. I will never forget when I read one of his “statements” so early on in my dialysis career. Below is what was read and to me at least it was very profound.
That’s not to mention what the AKF did for my spouse and me at one of the lowest points in our lives. The AKF is a great resource.
Below is something that I find very influential and moving when “debating” home dialysis at the time. He made a difference.
Dr. Carl Kjellstrand
DIALYSIS IN THE USA
In recent medical studies, it has come to light that people receiving
dialysis treatment for kidney failure in Europe experience, on average,
better health with fewer complications and longer life expectancy than do
their American counterparts. There are a number of possible reasons for this
discrepancy, such as differences in patient populations and in treatment
procedures, but the most significant seems to be the difference in the
respective goals of treatment.
In Europe, the goal of dialysis is rehabilitation. Patients are expected
to do well and to return to normal lives, and their doctors are not satisfied
until they do. In the United States, however, the goal often seems to be
merely to keep patients alive, without any serious ongoing attention to
rehabilitation or quality of life. Might this great difference in intentions
and expectations be the deciding factor in the difference in outcomes?
Bernie Seigel, M.D., Deepak Chopra, M.D., and others, have written about
the influence that expectations of doctors and medical staff have on patient
outcomes. Their thesis is that since patients tend to conform with their
doctor’s expectations, performing up to, or down to, those expectations, it
is a doctor’s solemn responsibility to convey as positive and hopeful an
outlook as possible to assure the most beneficial outcome. A recent study in
Clinical Psychology Review on the ‘placebo syndrome’ clearly shows that
belief in a particular outcome can be as strong a determinant as any
medication. Indeed, is it really any surprise that low expectations lead to
less than optimal outcomes?
Dialysis in the USA has become by default a kind of limbo, and the
experience of patients, while fraught with difficulty, is rarely allowed full
expression or resolution. Instead, patients are expected to be ‘nice’ while
being treated as little more than items on an assembly line. The prevailing
attitude of doctors and staff at many clinics is that of denial: that the
situation is so bad that it must not be dealt with. The corporate owners,
usually far removed from the clinics, tend to make treatment decisions based
on short-term profitability, often to the short-term and long-term detriment
of their customers well-being. Although patients become inured to the idea
of having to dialyze, and would be more than happy to get on with worthwhile
lives, they are held back by a system that regards them as permanent invalids
with one foot in the grave.
It seems that aversion to the idea of dialysis is the stumbling block
preventing further investigation of solutions to dialysis-related problems.
The common perception is that dialysis is an awful burden which it is
impossible to do anything about. Great pains are taken to impose this view
on the patients, with regular negative reinforcement: in combination with
the treatment, it is an effective form of brainwashing. This defeatism
inevitably colors treatment decisions, and leads to a poorer quality of life
for all concerned.
I don’t think that kind of mentality is appropriate in any medical
situation. There may be no cure per se for kidney failure, nor is there a
cure for blindness, amputation, paralysis, or brain damage. However, the
general trend in all these other cases is to overcome the disability and
return the person to a full and worthwhile life, regardless of the obstacles.
What makes dialysis so different? Is it the machine? Is it the blood?
What is it? I think it is a self-fulfilling prophecy.
The time is overdue to re-examine our priorities and re-establish the
dialysis program on a solid basis of the optimization of the quality of life
of each individual dialysis patient. When that becomes the standard of care,
we will also see the optimization of outcomes: patient satisfaction,
rehabilitation, and longer, healthier, more productive lives. That is what
the system was intended to produce, and that is what we are paying for.
Let’s do what it takes to make it so.
April 15, 1994