One equal temper of heroic hearts....

There is a phenomenon that occurs when an organization has a highly significant power over those it is there to serve. I have observed it for some time in the form of Dialysis and Transplant Centers. When the product is seen as necessary for a good life by the customer i.e. kidney, liver, dialysis etc. that person has a certain involvement and need that seems to spark this in the providers. The providers become demanding beyond rational limits asking the customer (patient) to jump through often irrelevant and extraneous hoops, to commit to compliance without question - blind obedience if you will, and assume an authoritative role over the customer, while setting to blame the customer for any difficulties in the outcome.

I have witnessed this at three centers I consulted about a transplant for myself, as well as a dozen dialysis clinics in which I have been a guest or client. I have no respect for the program, their protocol or "rules for the patient" or their hurry up do what they demand but then sit back and wait while they take their time and make their mistakes approach to their customers.

While I realize that sticking to your program to maintain healthy standards to retain a certain level of health or to maintain transplanted kidney is important, being manipulated into compliance to anything the center demands of you without thought or consideration isn't likely to produce good results. Doing without thinking when it comes to your own body and your own health isn't the way to take primary responsibility for yourself and your own well being.

Setting people up to be treated as contrite children who will be naughty if given a chance puts people in the mind to do just that as it addresses "the child" rather than the "adult" and puts the whole process on that level.

It is important that we as ESRD recipients handle our challenges with maturity and informed decision making. Allowing ourselves to be manipulated, patronized, and ordered about without understanding why or wherefore is not in our best interest. It does not only a disservice to ourselves but all those who come after us. At the same time most staff at most clinics aren't prepared for those of us who are educated and assertive enough to stand up and expect or demand respect, demand to be treated with dignity and expect precise and concrete and educated answers to questions regarding our health and treatments. They often don't know how to respond to such proactive and assertive and educated customers. More often than not they respond with defensive, aggressive and sometimes dangerous behavior which leads to more demands, more rules, more ultimatums, more hoops to jump through and less rationale, understanding justification, reasoning or logic to the new demands.

When dialysis centers (or transplant centers) treat us as children, people desperate to survive will often give in and behave as children to get what they want and what they feel they deserve. This puts one in a seriously reduced ability to care for oneself or to make appropriate, well thought out and informed, educated choices. Our kidneys make us feel helpless enough; we need to take control of how we deal with them and the problems they have given us. Being put in a position of helplessness and desperate compliance without question in order to get even the *hope* of living better and longer is not the best way to accomplish good outcomes and yet it is the standard of care, the "protocol"...the "rules" of all dialysis centers whether consciously or unconsciously. The model needs to be changed so that the centers are working for the customer and not the customer/client (patient) working for the center. The roles must be slapped back into place where they belong wherein the staff are seeing to the "real needs of the individual" not catering to the governmental rulings, insurance companies, lawyers, administrators, but to the person as a person, an individual with a face, name, dreams.

At this point, with their "We know it all, You know NOTHING" and must do as you're told approach, how does a proactive, clear headed, thinking, educated, rational adult overcome the backwards, muddle-headed, mucked up, distorted, twisted, reversed thinking of the standard staff at most dialysis centers? 

How do we overcome this hurdle which stands before us every time we enter to have a treatment, every time we have blood drawn for testing, every time we are weighed, every time we are given a sheet with lab values on it with smiley faces and stars as though we are in kindergarten instead of rational thinking adults who have the ability and capability of making clear and precise decisions regarding our health and our healthcare? 

How do we help others see us as rational adults and treat us as such when all they choose or want to see is a number a paycheck a lawsuit a choose or want to see is a number, a paycheck, a lawsuit, a troublemaker, a whiner, an agitator, a pest, a lazy person, a complainer, a liar, a cheater of diet restrictions? 

How do we overcome such labels, such marks of distinction and help others to see us as a person, a mother, father, brother, sister, friend, spouse, partner? We are people with hopes, dreams, lives and desires for longer, better days. Where is the motivation of staff? What is their motivation? Money? Where is the real reasoning? Decisions made out of desperate need are never good decisions. Maybe in the end they only see us as statistics because they see so many of us come in, deteriorate and go, either in the grave or on to another clinic, or to get a transplant. Eventually we all die, but to live without hope, without dignity, without real compassion and understanding, without respect and genuine concern.....that is truly death.

Tennyson tells the tale:
Tho' much is taken, MUCH ABIDES; and though
We are not now that strength which in old days
Moved earth and heaven; that which we are, WE ARE;
One equal temper of heroic hearts,
made weak by time and fate, but strong in will
To strive, to seek, to find and not to yield.

Blessings, Amy