Frontline Initiative Ethics

 My first recognizable brush with direct support ethics began when my agency asked me to work with a young man named Tony who had just been diagnosed with high cholesterol. This, plus a family history of heart trouble, made Tony a prime candidate for a heart attack. Explaining this to him did little good; not because of any disability, but because he had heard the words “eating less” and “exercising more” and didn’t want to listen any further. This whole “lowering my cholesterol” thing did not fit into Tony’s plans. He had said many times already that he would not cooperate with a new diet and exercise plan.

I eagerly accepted the challenge to work with Tony in addressing his cholesterol problem. I had been working as a Direct Support Professional (DSP) for a little over a year and had been working with Tony for that entire time. I figured that, with enough time together, we could turn the diet and exercise into habits that Tony would keep for a lifetime. 

The major flaw in my plan was that, minus the high cholesterol, I was exactly like Tony. If someone had come to me and said, “Don, we have a great plan of diet and exercise that’s going to help you lose weight!” I would tell them what they could do with those plans.

Completely unaware of the irony of the situation, I took Tony to the grocery store for his first low-fat shopping trip. In the past, I had barely looked at Tony’s shopping list. If he had the money, he could get what he wanted. On this day we went over everything with an eye for detail that would make a drill sergeant proud. All of the foods that Tony enjoyed; pizza, hamburger, hot dogs, were out, replaced by low-fat substitutes that to him (and me) tasted like an old shoe. The hardest cut was peanut butter, a staple in Tony’s life, now taken out entirely because he refused to eat low-fat peanut butter. A trip to the store that used to take us twenty minutes now took an hour.

Our next shopping excursions weren’t much better. It was a battle to get through the store every week. After a few months of arguments in the grocery aisle, Tony stopped fighting. I had won. We only got the things I deemed appropriate for a person with high cholesterol.

Exercise was pretty much the same. We would go to walk at a local track and Tony would threaten not to go in. I would threaten to go walk by myself. I knew he didn’t like being alone, but I got the results I was looking for; Tony went in and he exercised.

Three months later, Tony and I went to the doctor to find out the results of his blood test. I expected dramatic improvement. Tony was eating right and exercising more. Everything was going according to plan. Tony’s cholesterol level was still dangerously high — slightly higher than it had been the first time, in fact. 

A quick trip to Tony’s house revealed the truth. Tony was ordering pizzas and hiding the boxes in his dresser drawers. Tony was buying cheeseburgers at the convenience store up the street and hiding the wrappers behind his TV. Tony now had high cholesterol and a bug problem in his house.

So, I started cracking down on that, too. Tony and I began “weekly cleanings” at his house. This was where I came in under the guise of helping Tony get things spic and span, when really I was looking for fast food containers. Once found, I would put them on the kitchen table and Tony and I would talk about it until Tony told me how wrong he was. He promised he wouldn’t do it again.

Eventually, through medication and the constant struggles between the two of us, Tony’s cholesterol started to come down. Around that same time I started to notice that he wasn’t as happy as he once had been. He talked softer; he laughed less; he didn’t look me in the eyes as much as he used to. He was a defeated man and I was the one that had defeated him.

It was here that I was reminded that I don’t work for the doctor — I work for Tony. Goals set in Tony’s life should be a mixture of things — Tony needs and things Tony wants.

The need for Tony’s cholesterol to go down had to be weighed against the need for Tony to live his own life. Although this revelation hit me like a thunderbolt, rebuilding the trust between Tony and me took longer. The rebuilding continues everyday, every time I work with him.

I don’t think I’m a stupid person. With a little bit of training in this area, I don’t think things would have gotten as bad as they did. A Code of Ethics for DSPs would have kept me from damaging my relationship with Tony. This is why I feel a Code of Ethics is important for DSPs and why I will continue to work towards the goal of a fully accepted and implemented national code of ethics for all direct support staff.