Sunday, October 14, 2012

Is the patient perspective lacking?

This morning while the boy napped and my daughter burned off some toddler energy (which if it could be harnessed would solve all of the world's energy problems) by bouncing on her Rody while watching cartoons - I read a story in the Times Colonist bemoaning the rates of mastectomy versus lumpectomy it reminded me a lot of the bemoaning that goes on with respect to cesarean sections. Many of the surgeries are labelled as 'unneccessary' - however in both the case of cesareans and mastectomies patients are making decisions prospectively and outcomes are only known retrospectively.

In both cases I wonder if a better understanding of the patient perspective is needed to better assess why a more aggressive treatment is preferred over what is considered a more conservative treatment with equal or better outcomes?

Further, if patients are freely choosing these more aggressive treatments, what are they gaining over the more conservative options? Lastly, if these surgeries are a result of patient choice, should they be bemoaned as unneccessary?

The challenge is that the information in the system is limited to what was actually done and lacks information from the patient and provider perspective on why what was done was done. This leads armchair policy analysts and some health system administrators to conclude that there is waste in the system caused by 'unneccessary procedures' (there is waste in the system, but I for one am not convinced that it is caused by people undergoing 'unneccessary' procedures).

Being a patient who would have undergone what some would consider an unneccessary cesarean for the birth of my daughter and did undergo a cesarean for the recent birth of my son, I feel very strongly that care decisions should be 'patient centered and patient driven' and not 'guideline driven'. I worry that the labeling of some procedures as 'unneccessary' without complete information - in particular without either patient or provider information on why the procedure was undertaken and their satisfaction with the outcome - may result in some patients being forced into treatments that are different from that which they would freely choose for themselves (in consultation with their care providers) - and may result in less patient satisfaction and poorer outcomes than could otherwise be achieved.

We owe it to the healthcare system and the patients it serves to refrain from jumping to the conclusion that certain procedures are unneccessary and to improve upon the information available to better understand why certain treatment decisions are made in the first place. To do otherwise is to risk creating a 'health system centered' model of care.


  1. Interesting comments, thanks. I am having similar thoughts now as I choose between prenatal screening (which gives a probability of certain issues) and more invasive diagnostic tests. While I absolutely understand the risk calculation driving the general preference for screening, what is missing is any inquiry into the way I value risk -- e.g., would I prefer a higher risk of miscarriage over any risk of a trisomy? Would I prefer a screening with a high rate of false positives over one with no false positives but a high rate of false negatives? Not everyone would, but I might. It seems to me that in many birth-related areas the most socially efficient approach (lowest possible threshold of action to ensure a decent outcome for most people, but allowing bad outcomes for some individuals) has been incorrectly labeled the best recommended approach for every individual. I'd rather we were honest and just called it the "best value" or "the minimum standard of care."

  2. And to that end allowed individuals to opt for a standard of care that better met their preferences even if it meant allowing those individuals to pay for the difference in cost.

  3. Yes, I agree! But there should still be continuity of care. For example, if I pay out of pocket for a screening and it comes back positive, I should be able to seek a diagnostic test through my regular doctor (with or without cost sharing) even though she didn't order the screening.