Lately I have been thinking about the topic of trust. I may write a little series about this with regard to our healthcare.
Here is a little story from my past which has colored my view of "the system" for many years. Yesterday I had posted about my personal experience with trying to come to terms with mental illness in my family. My mother has schizophrenia and I watched how she attempted to get help from the mental health system and I have to tell you that for the most part...it didn't work so well. I grew up with a bias and a mistrust of the people and the process involved with my mother's mental health treatment.
Probably the peak of my distrust happened when I was about thirteen or fourteen. My mother had a mental breakdown and needed to hospitalized. At this time behaviorism as a method for treating mental illness was rampant. I received a phone call from a social worker from the hospital where my mother was inpatient. They had her on a behavioral program where she would earn points for engaging in what they deemed as "good" behavior. If she complied with going to therapy or the scheduled activities this earned her so many points. Her rewards included snacks, free time, and her personal favorite...her smokes. Is anyone else's gut screaming out about such a scenario?
Now here is why they were calling me. See...I could help my mother earn points and get her smokes if I would come in to talk with them. The woman on the phone seemed genuinely interested in me and my welfare. You have to understand that despite my mother's severe mental illness, the fact that we were living in poverty, did not seem to warrant much interest from the system. Nobody had ever asked about me before. And here I could also help my mother earn her points. All I had to do was come in and talk with them.
I show up and the social worker heaps on the empathy and asks me how I am doing and how I cope with all of this. I begin talking openly and honestly feeling that maybe...just maybe this was someone who could help me and my mother...that my mother and I wouldn't be ditched by the system when she exited the hospital like all the other times.
So I am sitting there feeling more at ease and hopeful...I am pouring out my story. And then the social worker stops me. She shows me a tape recorder and asks if I minded being taped. You see...they were doing a study.
Imagine the sound effect they use in movies of the screeching record which stops the music.
They were actually using me to get something they wanted. Not only were they attempting to use me...they were using my wish to help my mother as leverage. If this woman had been straightforward and told me that this was a business transaction I could have maybe coped with it a little better. But when people pretend to care and then take advantage like that for their own gain... or misuse power...I have real problems.
It was a real eye opener to say the least.
I have lived a lot of life since then. In a twist of fate I would later work for the very hospital where this incident happened. I have witnessed many injustices in the system. But I have also seen genuine care, compassion, and dedication from people who do want to help and make a difference. But sometimes it becomes difficult to know who to trust.
As a patient you are often put into a vulnerable position of having to trust others so that you can receive help for your condition. In this country, health care is a multi-billion dollar industry. It is interesting that we label it as "health care" because it really is a business. It is a business of marketing and making money. The human care part is quite often secondary to making profits. There are times when I feel more like a demographic to be targeted for advertising than a human being. As a Multiple Sclerosis patient, for example, I may be asked more about my opinion on the appeal of a medication website than I am about my own health.
There are doctors who value helping others above profit, who listen and respect their patients, and who have a passion for making a difference. Then there are doctors who engage in unethical practices, fraudulent research, or who receive financial gain for promoting certain pharmaceutical products.
There are mental health facilities where the patient is treated with respect, the care is more than custodial, and the goal of treatment extends beyond simply throwing the patient back out into the community with no follow up care. And then there are the mental health hospitals such as the one I wrote about in 2008 where patients were physically beaten and in one case left to die after sitting in a chair for 22 hours without food or attention while hospital staff walked right by him, they watched TV, and even played cards.
What about other patients? Surely you can trust another patient, someone who has a similar diagnosis and is actively battling their illness or disease. We don't tend to think of other patients as affecting our health care. But with the advent of thousands of on-line health communities the influence of the patient blogger can be considerable. Some of these influential health bloggers may be representing you to the people who develop medications and treatments for your mental or medical disorder. While some of these "patient opinion leaders" as they have been deemed by the media, are genuine advocates for other patients, others are advocating to fill their pocketbook or advance their career. There are some who don't bat an eyelash about the possible conflict of interest involved in portraying themselves to be an impartial health blogger to the public while they receive financial compensation for representing a commercial product behind the scenes. Or worse, they are instrumental in the marketing of that product to patients who are unaware of their financial ties. In this unregulated domain of marketing, disclosure is not yet mandatory.
Which brings us full circle to my question:
Who do you trust with regard to your mental and medical health?
Which doctors do you tend to trust? Which types of hospitals or mental health facilities do you avoid? Which ones make you feel at ease? What about the health information and support you find on-line? Which health sites do you trust? What personal guidelines do you have for trusting an on-line health blogger? What elements make a person or a system trustworthy in your opinion?
I want to cover this topic in more depth in subsequent posts. I think that this is an essential conversation for any patient. As consumers of health care we need to figure out which people, systems, and information we can trust. Our lives may depend upon it.
Published On: April 19, 2011