I have a young client who has been suffering from an ulcerative colitis that 2 years ago required surgery. Since the initial surgery, there has been one complication after another. In the last four months, since I came on board, he has had two surgeries and one procedure. His pain level reached record highs before the most recent surgery and he lost about 48 pounds. Everyone kept saying telling him he needed to eat. He would try but the system wasn’t adapting to the changes and it just came out. What was happening was he had malabsorption and he was malnourished. He was fading away in front of us. I kept hearing doctors tell him, “there isn’t anything else we can do for you. You have to just start eating. You just have to adjust.” I started to get the feeling everyone was thinking it was in his head even his weight loss and anorexia. Of course he was traumatized to have his life in such chaos but no one wishes for severe pain, constant diarrhea, nausea and fatigue. It was absurd.
One day last week he hit the wall. At his last hospitalization he was so anemic he needed a transfusion and dehydrated. He went home with a temporary ostomy and some hope. Within a week, he was back in the ER severely dehydrated. It became apparent it wasn’t in his head. It was in his gut. Does anyone need any more evidence? A doctor known to my client who had been helpful in the past came forward. He stated he was going to take the reins because my client was suffering from malabsorption and his sub speciality was in that area. He also said he was going to be in charge and create a plan with the help of national experts to change the course of health. He spent time explaining exactly what was going on, what had to happen and how he could be depended on.
My client’s partner and caregiver who has been so amazing through all the problems, with tears running down her face, explained it was good news but hard to hear after the years of promises. She said she wanted to trust the plan. The doctor kindly said, he thought she needed to be less reactive and work as a team. At that moment, I realized that the medical profession doesn’t always understand the profound emotional impact and loss of trust these experiences generate. Why should she put more trust in this plan even if sounds logical and reasonable? The healthcare system had pushed her to this point of exhaustion and mistrust. She was being an empowered patient by putting herself on the line with honesty and integrity.
I do believe the sincerity of the doctor to assist my client back to his regular weight and better quality of life. He wants to create a team and supports my role. And his plan is sound. I think it is time to stop using the word trust in medical relationships. It puts too much pressure on both the medical professional and the client. The word trust implies that the the medical professional is always thinking in the best interest of the client and decisions on care are therefore the best possible options . It is an enormous responsibility to have every client’s best interest covered. Practices are busy and offices are stressed. I think MDs and NPs want to always have the clients best interest in mind but with standards of care and evidence based thinking it boxes them in and doesn’t happen. I think blind trust in the medical profession is not healthy. As the saying goes” Trust in God but tie up your horse.”
It is time to embrace the empowered patient. The relationship is built on a team approach, mutual respect and communication. Let your patient help you make decisions when it is possible. Don’t create the barrier of “trust” . It is too difficult to maintain.
