What Questions Should I Ask My Doctor?

One thing I do on a regular basis is help patients and caregivers make medical decisions. I watch my colleagues in other specialties give information and guide patients in decision making and I am often left with a fairly dissatisfied feeling that the conversation didn't quite hit the spot when I see the decisions are made and the regret that many families have afterwards. Decisions to start dialysis, transition to hospice, place someone in a nursing home, proceed with an amputation, put in a feeding tube or a defibrillator, start chemo, send someone to the emergency room, put someone on a ventilator are all decisions that are very complicated. Even starting or stopping a statin for cholesterol is not an easy decision. When discussing code status (DNR/DNI), all simplicity goes out the window.  The way the medical community is supposed to help families is through a process called informed consent. This has been determined by the court system and ethicists as the minimal amount of information a doctor is obligated to give a patient and family before asking for a decision.

From the AMA's website on informed consent
In the communications process, you, as the physician providing or performing the treatment and/or procedure (not a delegated representative), should disclose and discuss with your patient:
1. The patient's diagnosis, if known;
2. The nature and purpose of a proposed treatment or procedure;
3. The risks and benefits of a proposed treatment or procedure;
4. Alternatives (regardless of their cost or the extent to which the treatment options are covered by health insurance);
5. The risks and benefits of the alternative treatment or procedure; and
6. The risks and benefits of not receiving or undergoing a treatment or procedure.
 In turn, your patient should have an opportunity to ask questions to elicit a better understanding of the treatment or procedure, so that he or she can make an informed decision to proceed or to refuse a particular course of medical intervention.

 It has taken me a while to figure out what I don't like about the informed consent process. Informed consent has it all wrong!  The problem with this model is that it spends all the time talking about the procedure/alternatives and not enough time emphasizing how it is contextualized to the patient.  I suppose under risks and benefits it could be assumed that a doctor would let a patient know how a given intervention will impact their life, but the way informed consent is done, it often stops with the immediate physiological benefit (you will not have a blocked bowel, your heart will restart, it will fight the cancer, your blood pressure will be lower).

There are two problems
1.  No matter how detailed the information, there is simply no way for a patient and family to truly understand the above 6 points without understanding the full medical literature combined with personal clinical experience.  It is one thing to say a patient may suffer or that a procedure may succeed, but what does that look like exactly?  Not being an oncologist, no matter how much education I get on chemotherapy, I will never really understand how one regiment is better than another without looking at the literature and seeing how patients are affected in real life.  Informed consent is a facade that makes doctors, patients and families think that the patient/family is making the decision autonomously where in reality it is like picking a dish at a new restaurant: you can read the description but you don't really know how it will turn out.  To put it another way, I have a very low illiteracy when it comes to cars.  No matter how many times someone explains to me different types of catalytic converters, a-I don't really care and b-I don't get it, just fix it or put a new one in and make my car go...which brings me to my second point

2.  The most important part of the decision making is figuring out how the options fit in with a patient's goals of care, not the ins and outs of the medical procedure, the literature and the clinical experience and the science.  For example, patients need to have some sense of whether a procedure will help them live longer, cause pain, be more independent, enjoy life, suffer less.  I think giving patients/families the best information we can about goal directed outcomes will allow them to make much more relevant choices.

Here is my schematic

These are the four areas I think about when helping a family make decisions.  Too many times the conversation takes place completely in the top right circle of the medical science and technicalities of the intervention itself.  Too often how it would impact a patient's goals gets ignored.  I would argue that if a conversation regarding a medical decision took place completely in the top left circle, bottom left circle, it would be a much more complete and accurate way to make a decision that will reflect the patient's best interest and will produce the least regret.

One thing I worry about is when doctor's tell patients what their goal should be and patients tell doctors what procedure/treatments they want.  That gets things backwards.  Ideally a patient would state a goal and the doctor would tell them the best way to achieve that goal.  So for example, a physician may say, I know your goal is to live as long as possible with your wife at home, let's do hormonal therapy for prostate cancer because it will maximize your chances of surviving while minimizing the toxicity of treatment.  Or he may say, I know your goal is to live as long as possible and you are okay with taking risks, let's do surgery and chemotherapy as your best chance for living as long as possible even though it is riskier.
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When it comes to informed consent, I usually don't like how it is done anyway even putting the goal issue aside.  Here is what I would want discussed:

1. Is it even effective in an older adult? 
2. Is it effective for a clinical endpoint that the patient cares about?

3. What is the time frame for efficacy (over long term/short term)

A.  Will the patient outlive the usefulness of the intervention?

B.  Will they achieve it within their life expectancy?

4. What is the likelihood of achieving benefit (i.e. NNT)?  

Is that worth it to the person?

5. Is it worth the risk of side effects?

Is it worth the risk of failure

6.  Will it achieve their QOL goal?  

7.  Is it a priority among all the person’s medical problems?  

At the end of the day, contextualizing a decision in a patient's goal is far more important to me than discussing the ins and outs of the science of a medical intervention.  Unless it is translated to a goal, the information is useless.  And I would argue that a translated decision into a goal without the discussion of the ins and outs of the intervention would still lead to a pretty accurate choice that reflects the patient and minimizes the chances of making a wrong decision or guilt.