Dear doctor,...

Dear Doctor __________,

I realize you went to med school and all that. I know you are highly educated and work hard. I know you see a lot more patients than you really want to. I get it.

I know you spend more and more of your time fighting insurance companies and HMO's. Believe it or not, those of us trapped in that system, or who work in billing those groups totally get it. Really we do.

I know you went into medicine for a reason. I have to believe it was for more than to make your mom happy. I want to think you want to meet your patient's needs despite the insurance mess and the tiny amount of time you have available for each patient. I really need to think you walk into that exam room with only my spouse's needs in front of you. I need to think you read my list of symptoms and that you are hearing what is being said.

But here's what the issue is. We need you to be honest. Honest to a fault. And tot ake the time to have conversations you don't want to have.

Med school doesn't teach you to talk about talking to your patient. About those "hard talks." I know they don't cover much because we get the residents in our hospice office to learn what to say to dying patients. They ride with a nurse a couple of times. I am glad they are making male students climb into stirrups these days (that's pretty awesome- now you know what it feels like to be told to slide to the end of the bed and "relax.").

But what is not covered is how to talk, openly, with your patients about their illness. About prognosis. About what might really happen. What patients and families need most is your honesty. I can't count anymore the number of families who have been sent home on hospice who never expected it. Never saw it coming. One woman with two small kids who was being offered experimental chemo only a week before she died. She never got to say goodbye to her kids. Families are afraid to sign  DNR's because their loved one might be brought back and live longer. They saw it on TV. Nobody ever told them that it would be futile- and hurt.

There seems to be some idea out there that being honest about illness and disease process will take away hope. That giving a patient the real picture so they can choose a course of treatment, of life, will cause the patient to shut down and give up.

Maybe it's because I work in hospice. Maybe because I have always been the emergency manager in the family. Maybe I am just weird. But it seems to me that being told what your options are, what to expect, what choices you might have- those are things someone should know about their own body. When you are prescribing birth control you give more options and information than you do about cancer or heart disease or Parkinson's. Why is that? Why do patients and families need to go to support groups and online to learn what you are not comfortable saying?

It took us over three years to get a real diagnosis for Casper. The symptoms were all there from the beginning. Had anyone been really listening her illness is classic in its progression. The prognosis is very clear. Yet, when we asked what to expect (after being in a waiting room filled with folks who were far more debilitated) you said "there is no way to know. We will have to wait and see. Not everyone ends up on hospice." When Casper asked you about work, you patted her knee and said "Let's take this one step at a time." That's so cute considering she has PD and sometimes can't step at all. When we told our other docs about her disease progression,  I heard "She'll get better. This can't happen. It will turn around." Really? What research are you reading?

I appreciate that you are all uncomfortable admitting you can't fix this. You would be amazed at how many families I have worked with over the years who could see their doctors were struggling with the words and ended up comforting their doctor. I know we did with some of Linda's too. I know you see the look in Casper's eyes begging you to say this could all be a giant mistake. I know it hurts. I am the one who has to get in the car afterward for the fallout. But please- when you can't find the words to say, say that. Say "I hate telling you this." Say something. But be honest. She needs to know you hate it too. But she needs to hear what is real.

We have plans to make. We know you do not have a crystal ball. We say that to folks all the time. But we do have an idea of where each path leads. We know you do too. Talk about that path. You would want the same too.