There is a phrase sometimes used in ethical discussions about patient’s rights called “Therapeutic Privilege”. The connotations aren’t always positive. In fact, when I hear the word this is what I think of “I (the doctor or family) know more than you, therefore I have the privilege of deciding what you should know or not know”
This story illustrates the problems with this concept:
Annette is in her 20’s. She was diagnosed late in life, at age 13, with a genetic condition that effects her digestion and absorption of food. Over the years she’s gotten to the point that she can only stay alive with nutrition given to her through her veins, called TPN. This seems like an easy solution, accept anything in our body (like an IV line) over time has a tendency to get infected. Annette ends up being in our hospital every few months with a bad infection from her TPN line. In fact, she’s had so many infections that she is loosing veins that can be used for her nutrition. The line she has in now, is actually the last vein. If it gets damaged or scarred, there will not be another way to feed her.
When Annette is not in the hospital she lives in a nursing home. A life of poor nutrition does a lot of things to the body. She has thin bones and cannot walk, she has had many dislocations so it’s hard to use her hands, her growth is also stunted. She has been chronically ill for over a decade, and the psychological ramifications of this have made a definite impact on her social skills, as well as her developmental growth. To me she seems like a 13 year old, ironically the age of her diagnosis.
This most recent admission to the hospital was again for infection of her TPN line. The one line she has left! Her family struggled with watching her so ill, and wondered if there was anything to do. Her regular doctor mentioned palliative care, and talked to the family about the options of hospice and comfort measures. The one big difference is that the doctors, based on the family’s wishes, did not include Annette in on this talk. The family cried and worried about Annette’s overall health and decided they wanted to stop the TPN, as a way of ending the never ending cycle of infections/hospital stays/pain, etc. The problem- they didn’t want any of the doctors to tell Annette… “She wouldn’t be able to handle it” they cried, “She’d panic and it would be worse, it’s better if she didn’t know she was dying” This then is the concept of Therapeutic Privilege. We think that the truth (stopping your food) would actually hurt you, therefore we withhold information.
It did not feel right to me. I pictured Annette getting weaker and weaker without food, wondering why, with doctors and family members in fake smiles reassuring her nothing was wrong. That’s not comfort. That’s not good medicine.
Needless to say, this is not what we did. Despite the family’s wishes we began including Annette in the discussions. We had to be simple, but she could still decide for herself what she wanted. And ultimately, despite being stuck in bed, in constant pain, with no hope for getting better, she chooses to at least try; to keep coming back to the hospital, to even wind up on machines if need be, anything to keep her going.
You can see why therapeutic privilege is a slippery slope. Who decides what information someone can or cannot handle? Had we let the family decide, Annette would not be alive today. Had we even let some of the doctors decide, they’d have looked at her life and thought, “not worth it” and she’d not be alive today. Luckily, we threw therapeutic privilege out the door, and asked our patient…who is alive today.