He Just Wouldn't Listen

Several years ago, our son Matthew was scheduled for a dental procedure that he gets every five years. Since he can neither sit for nor understand dental work, he needs to be put under general anesthesia to have even routine cleanings and exams. He’s had five of these procedures now and each time it’s a process that takes much of a day. There is a local hospital that has dental clinics for patients like him who cannot undergo exams like most people can. 

We’ve always had good experiences with these procedures, and the medical teams; nurses, dentists, and anesthesiologists have been very kind, accommodating, and empathetic. 

Except for this one time.

Prior to the day of the exams, my wife Kathy sends a page to be included in Matthew’s records that describe what works and what doesn’t work for him, what he tolerates and what he can’t tolerate, while in the hospital. 

The most significant concern about him is how anesthesia is administered. Matthew can’t have an IV anywhere on him without some sort of sedation first. He’ll simply rip out the IV the moment it is put in. We’d like to avoid that. It would be bloody, messy, and painful if it happens. We’ve found that what works best is for him to have some oral sedation or a shot of a sedative first, to help him relax and not care about anything. Then, the IV can be safely and successfully inserted when he’s in the operating room. Through trial and error, that’s worked for him many times.

But on one procedure day several years ago, the anesthesiologist who was assigned to Matthew didn’t want to do it that way. He insisted that his way would work better. He’d numb Matthew’s hand and then put the IV in, securing it firmly with tape. We were skeptical. But the doctor insisted, saying that if a shot was administered, for example, that would be “barbaric”. Okay. So, we let him try. The doctor put numbing cream on the back of Matthew’s hand, put a bandage over it, and said he’d wait a few minutes for the cream to take effect, and then would insert the IV. 

The second - the very second - that bandage was attached and the doctor stepped back, Matthew immediately ripped it off and threw it. It hit the doctor’s face. The stunned anesthesiologist’s eyes widened and a very stern scowl came over his face. 

“I guess you win. We’ll do it your way.”

And, he quickly turned and walked out of the room. 

The second he was out of earshot, one of the nurses exclaimed to us in a quiet voice:

“We tried to tell him. But he just wouldn’t listen.”

That awkward and frustrating situation could have been avoided if the doctor would have respected the experience and knowledge of us, his patient’s parents, who had been through two dozen surgeries and procedures with Matthew before. But he didn’t. We knew what was going to happen if the doctor did it his way. It wasn’t about us “winning”. We certainly respected the doctor’s knowledge and experience, and honored that by giving him the opportunity to try it his way. You never know if something new might result. But it didn’t. Thankfully, Matthew’s subsequent procedure went well that day, when he was pre-sedated before the IV was inserted.

This was really the first and only major time when a doctor wouldn’t listen to our experience with Matthew undergoing anesthesia. 

We’ve been extremely fortunate in these situations. Matthew has had so many medical experiences and reasons for general anesthesia. Most have been same-day procedures, such as the dental exam. The vast, vast number of medical professionals have listened to us share what we know does and does not work for Matthew in those circumstances. They have respected our experience and have done their best to accommodate Matthew’s quirks and proclivities when being treated medically. We absolutely value and appreciate that trust in us when sharing what we know to be true and trying it the ways we recommend can best work for Matthew. 

It’s painful and awkward when people don’t listen to our genuine concerns about something that affects our son so acutely. It seems as if we don’t know him better than anyone else does and are not very intimately involved in his care. The fact is he cannot care for himself in any meaningful way. Most of our care for him is doing the things for him that he can’t begin to do for himself and keeping him from inadvertently hurting himself (and sometimes us) in the process. We are his most experienced and daily advocates for him, trying to do our best to make certain he is safe, as happy as possible, and respected as a valued human being. 

We have been supremely fortunate that the overwhelming majority of people have listened to us, respected our experience and love for him, and have treated him with dignity and respect. It warms our hearts when they do.

It always breaks our hearts when they don’t. 

Isn’t that what all of us need and want - to be respected and treated with dignity, believing that we all have sacred value?

It starts by listening with compassion and intention, because everyone we meet has essential worth.