I agree beachy. Like I said I like analogies. I too have used an airplane analogy.
Pasted below is a letter I wrote when the US Senate Finance Committee was looking into complaints from patients about their dialysis care. It’s a pretty long letter, the airplane bit is about half way in - my point was to explain the dialysis unit experience and the disparities I’ve seen first hand. Rereading the letter I think it has held up pretty well - I’ve been to more places (five continents instead of four) and I have more and less responsibility through volunteer activities (now I’m also Chair Elect at NKC and no longer on aakp’s board) - the unfortunate truth is that there are still wide disparities across the United States in the way dialysis is provided; the options people with CKD 5 have available both in modalities and facilities.
Bill
September 29, 2003
My name is William Peckham. I am 40 years old. In 1985 I was
diagnosed with diminished kidney function, a condition that I share
with one in nine Americans. Despite intensive medical care my kidney
function continued to decline and in 1988 I had a transplant that
lasted two years. The way in which the transplanted kidney failed
indicates that a subsequent transplant would also fail; I expect to
be on dialysis for the rest of my life.
I started dialysis in Seattle in September of 1990 at the Northwest
Kidney Centers (NKC) - in their Patient Education Unit. When I began
dialysis, I was unemployed and used denial to cope with my Chronic
Kidney Disease (CKD). Through the persistence and encouragement of
NKC staff, I evolved over the years. I learned how to put in my own
needles, how to calculate how much fluid to remove during my
treatment and how the dialysis machine does its job. Now thirteen
years later I dialyze at home 5 or 6 nights a week and take
responsibility for every aspect of my treatment.
In 1995, after being unemployed and unmotivated for the first three
years of dialysis, I began working through the Carpenter’s Union as a
Trade Show Specialist - work I continue today. In 1998 I started
volunteering on the NKC Board of Trustees. Today I continue to serve
and I have additional responsibilities as Chair of the NKC Strategic
Directions Committee and Chair of one of NKC’ Regional Councils (the
Councils support patients at individual NKC dialysis units by
bringing together patients, staff and members of the community). I
began serving on the Board of the American Association of Kidney
Patients in August of 2003. The observations that I am sharing here
are my own – the perspective of a uniquely informed, veteran patient.
I am a CKD success story. Over the years, I have evolved from being
an uninvolved, uninformed and depressed dialysis patient to an
empowered, informed and thriving individual with CKD. However, I
cannot take all of the credit; I have succeeded as a direct result of
the care I receive through NKC. I was able to work because NKC
offers evening hours. I became empowered because NKC encourages
patients to participate in their care as much as they are able. I
was further empowered because NKC wants patients to participate in
their organization’s governance. And last, but not least, I am
thriving medically because NKC offers long in-center treatments and
the option of more frequent home hemodialysis. The quality of my
life has directly correlated to the quality of my care.
I am concerned about the unevenness in the way dialysis is provided
in-center and the unevenness of renal treatment choice. In the
thirteen years that I have been on dialysis I have dialyzed as a
visitor in scores of units across 18 states and on four continents.
I strongly believe that if I lived in another part of the United
States my life with CKD would be very different. I have seen first
hand the disparity in the treatment options offered and the
inconsistency in the dialysis unit environment. Over 80% of the
300,000 American dialysis patients dialyze in-center on a three day a
week schedule. To understand the challenges facing the vast majority
of dialysis patients one must understand the importance and unique
nature of the dialysis unit environment. To illustrate, think of in-
center hemodialysis in terms of something we are all familiar with –
flying. In the best of circumstances a four hour dialysis treatment
is about as uncomfortable as flying (in Economy) for four hours.
Imagine then, if three days a week you had to fly from Dulles to
Denver. That would be inconvenient and uncomfortable but consider
how the atmosphere on the flight would affect your attitude towards
flying.
Imagine if on every flight your pilot and crew seemed over worked and
harried, or even worse, confused and unsure of proper procedures.
Remember too, that your evaluation of the front line crew would
inform your evaluation of the vital behind the scenes staff – the
maintenance crew. Imagine a plane without headphones, with each
passenger’s speaker turned to a different station. Imagine that
different alarm lights, at your seat and throughout the plane,
continually flash, beep and buzz and these alarms go unanswered or
are simply muted by the crew. Imagine that the crew, even when
talking about you, talks across the seats and between aisles as if
you are not there. Imagine that instead of individual reading lights
there were banks of fluorescent lights directly overhead, left on for
the duration of the flight. Imagine if for the duration of the
flight you were not allowed any water or food, even if you brought it
yourself. Imagine if you were not allowed to use your laptop or
personal stereo (even after getting into the air). One could extend
this analogy to include transportation to and from the airport, the
boarding process and the feeling that flying is not natural, just as
depending on a machine for life is not natural. All of these things
would make flying much worse than necessary but really that’s not the
worst part.
The worst part is that you are aware of what flying is like on other
airlines; you are aware it is much safer and more comfortable. You
know that some airlines have highly trained, confidence instilling
staff. However, you can not fly any airline, your choice in airlines
is determined by your zip code. Quiet, calm, professionally run
airlines exist but they are not available to you because of where you
live. This is the situation faced by an unfortunate percentage of
American dialysis patients. In my domestic travels, dialysis units
with no regard for patient comfort are all too common; many patients
have to dialyze in units more akin to video arcades then the library
like atmosphere of an NKC dialysis units. As a patient if your zip
code requires you to dialyze in an uncomfortable, unpleasant, unsafe
environment you have just three choices – suffer, don’t go or move.
Moving/changing dialysis units is often not an option, so many
patients are suffering needlessly or worse, giving up.
My experience is that dialysis is a journey; a journey from survival
to health. In too many dialysis programs patients cannot complete
this journey. The journey is hindered due to an inadequate dialysis
dose, a lack of evening hours, poorly trained staff and/or the
neglect of patient education. Issues such as patient dismissal,
standards of care, staff qualifications, staffing ratios and
conditions of coverage must be addressed. Advances in how to best
treat CKD must be funded. The historic decision in 1972 to fund
renal dialysis and transplantation through the CMS ESRD program is an
example of America at its best. The downside of Federal coverage is
that no other payer can reimburse for care beyond what is reimbursed
by Medicare. The United States Congress has the duty to address the
needs of dialysis patients because no other avenue of reimbursement
is allowed under law. I ask that Congress ensure that dialysis
patients receive care that maximizes positive outcomes. I thank
Congress for it’s thirty year commitment to CKD patients; our lives
are, now and for the future, in your hands.
