By A. Peter Lundin, MD
Editor's Note: Dr. Lundin served as president of AAKP from 1990 - 1994.
The hemodialysis unit is a place of unique opportunity for patients and professionals. Because of the frequent contact with doctors and nurses, patients can better learn about their illness and the therapy which can keep them alive and well for many years. As with other chronic diseases, like diabetes or hypertension, the more knowledge a patient can gain from skilled professionals, the greater the possibility of doing well. Knowledgeable patients can better inform the doctor or nurse about actual or impending problems. Once they come to understand why their dialysis, medications and diet are so important for them, they are more likely to follow advice about complying with them, since they will perceive that to be in their own best interest.
Dialysis professionals, on the other hand, can draw satisfaction from the successes of properly instructed and well cared for patients. Well dialyzed patients whose other medical problems are detected early and managed properly will feel well and be anxious to reengage in life, returning to work, school or into pleasant retirement. More time and attention can then be devoted by caring professionals to those patients whose medical conditions limit the possibilities for such reengagement and therefore require their concern and support. When things work out this way, there can hardly be a more satisfying experience in the practice of medicine.
Does this sound like a happy ending to a teary movie or an experience existing only in the imagination? For too many patients and professionals, it probably does. What could be a pleasant experience too often is not. Sadly, many dialysis units are not happy or reassuring places. Distrust and anger on both sides is often barely concealed. Staff and patients may feel they are regimented - like workers on an assembly line - neither listened to, nor well cared for. Doctors, in dealing with angry or seemingly indifferent patients, may feel that they face too many demands and get no appreciation for their efforts. Rather than a place from which satisfaction can be derived, the dialysis unit becomes a place which all would like to avoid. The result is often high staff turnover, absentee doctors and depressed, poorly cared for patients.
From talking with patients in AAKP and from some experiences and observations of my own, I am aware of what patients can go through. Attitudes toward patients that may seem normal or benign to professionals may seem at best annoying, and at other times, downright injurious to patients. Many doctors, if they are ever seen in the dialysis unit, always seem to be in a hurry, and they have a number of ways, subtle or not so subtle to let the patients know. When a doctor asks, "How are you feeling today?" with one foot in your station and one eye on the door or the next patient, everyone knows the expected answer is, "OK," even if you have something to say or ask. The doctor should be asking, "What are your problems or concerns today?" It seems that some doctors, if they say anything to you, can only berate you for not following your diet or taking your medications properly. What happened to the adage of learning by listening to the patient? In the meantime, you're feeling sick or have other problems and no one apparently wants to listen.
What about the nurses and technicians who put you on the machine? They are the real caregivers in medicine, the ones who provide TLC (tender loving care). Everyone knows that. Do you find they are better listeners, letting the doctors know of your needs and getting the necessary answers, or do they just hurry to get you on and off the machine, in and out of the unit? Before you get on the machine, do they ask what your problems are or do they just let you know about their problems?
Are you often concerned about your access? Every patient soon learns who is good at sticking the needles and who is not so good. We all recognize that not everyone has the hands to be a great pianist or sculptor, yet in most dialysis units, all the nurses and patient-care technicians are supposed to put needles in. Why are they all allowed - no, expected to do it? Is it always the least capable needle sticker who tries to tell you where they are going to stick the needle even if you know better from painful experience? A single bad stick can be enough to destroy a graft or fistula, a patient's lifeline. I used to do my own needle sticking, but would let the new nurses learn under my direction. One day the nurse instructor told me that I couldn't put my own needles in, a new nurse would do it instead. At that point, I quickly and firmly established my right to determine who was to put in my needles. What I couldn't control in the unit was getting on the machine not too long after I was required to be there. I was a medical student and would have to skip other things to be in the unit on time to avoid being scolded for lateness. Then I would wait an hour while during the staff turnover, they discussed what they were going to do after they got off work, among other things. My escape was to go to the home dialysis area after hours and dialyze myself. While the conditions of dialysis were less safe, it was infinitely more relaxing.
My problem with some dietitians is that they get stuck on the concept of the renal failure diet as a diet of don'ts. Don't eat this and don't eat that! Your BUN or potassium is too high! You gain too much weight between treatments. A patient who has otherwise adjusted to the need for dialysis might reply: "I am getting good dialysis (a greater than 65 percent reduction of BUN), I have no problems during dialysis, and my blood pressure is normal. I feel good, but I can learn and adapt if you take the time and calmly explain to me why it's in my best interest to change."
My impression of the job of the social workers is to learn about the emotional and financial problems of the patients and the impact of dialysis upon the family and to provide the guidance and support patients and families need. The social worker, if no one else, must be the patient's friend and advocate within the unit.
If patients don't have friends or advocates in the unit, they fall to the bottom of the order in terms of needs met and wants fulfilled, quite the opposite of how a healthcare facility should be run. Instead of the wonderful place where work is personally rewarding and care is good, too many dialysis units have become a place of tyranny where patients lose the most. Dialysis patients usually have little opportunity to go to another unit. They cannot stop their dialysis if they want to live. They can try for a transplant, or go on peritoneal or home hemodialysis if circumstances permit, but for most patients thoughts of changing units may seem like "jumping from the frying pan into the fire." If I am describing you and your situation, then you are likely frightened and depressed. (If, on the other hand, you feel good and like those caring for you, count your blessings.)
But things can and should be different for those patients in facilities which are mired in a depressing or indifferent atmosphere, and AAKP will be striving in a variety of ways to help bring about changes. We will be undertaking a major effort to communicate more effectively with the professional community to get professionals - nurses, technicians and doctors - to be more sensitive, responsible and cooperative to their patients' needs, anxieties and desires. Patients can help as well, by resolving to become as knowledgeable as they can about their treatment teams, on expressing their concerns, desires and views to facility staff and doctors.
We are all in this together - patients and professionals alike - and we all have a responsibility for making our dialysis units places where we work together to make our lives as rewarding and as mutually beneficial as possible.
This message originally appeared in aakpRENALIFE 1993, Vol. 18, No. 1.
© aakp 2004. All rights reserved. Used with permission. This article may not be reproduced without written permission from aakp.