Advances in modern medicine mean that more people live longer with disease than ever before. With disease come difficult choices. These days, patients and their loved ones are frequently put in positions where they have to make life-altering decisions. However, this is still a recent phenomenon since not too long ago, physicians would rarely let anyone else decide the fate of their patients. In fact, in the 1960s, nine out of ten physicians didn’t even tell their patients that they had cancer. Times, thankfully, have changed and frequently doctors will reach across the table, seeking an answer.
While this is a substantial step in the right direction, many struggle with the burden of having to process complex information and then using that to make potentially life altering decisions. Almost counter-intuitively, there is data that suggests patients who are more involved in their treatment decisions are actually more likely to regret their decision down the line. While this might just represent buyer’s remorse, to me this means that patients require additional support such that they can make decisions that they are comfortable with after the fact.
Given the difficulties I have seen patients and caregivers face when they are involved in medical decision making, here are three things which I think might make the process less challenging and help make decisions which are less likely to leave regret downstream.
Take A Step Back (It’s Okay to Take your Time)
The two things that make medical decisions most challenging are the stakes involved and the urgency associated with them. When patients are sick, they frequently need treatments or tests that are time-sensitive. In truth though, the more common reason why there is a rush to come to a decision is because of how little time physicians and patients are able to spend together. On average, physicians get to have only 13.3 minutes of face time with their patients per clinic visit. This time is further divided into physicians asking patients about how they are doing, examining them and their tests and reconciling their medications. The time spent making treatment decisions is likely a fraction of that.
The combination of stakes and urgency can easily put anyone into what has been called a System 1 state of mind. In his book, Thinking, Fast and Slow (Farrar, Straus & Giroux, 2011), Nobel Prize-winner Daniel Kahneman describes two modes of human thinking which affect our decisions. System 1 is fast, emotional and impulsive while System 2 is deliberate, thoughtful and rational. Fear, a hallmark of what patients and family members feel, is one of the primary forces moving us towards System 1 decision-making. Unsurprising then that many regret decisions they made after the fact. Words used to describe medical situations can also shift people to System 1. In one study, when ‘Ductal Carcinoma In Situ’, a limited form of breast cancer, was described as a form of ‘cancer’ as opposed to a ‘high risk condition’, more patients opted for surgery.
One way to combat such a situation is to take a step back and truly assess the immediacy of the situation. If unsure or if making a significant decision, if time is available, it should be utilized. Whether that requires a follow-up appointment or an email or telephone exchange afterwards, the additional time will allow patients and family members to equilibrate and make clearer decisions.
Ask for Evidence, Not Metaphors
Frequently when doctors describe treatment choices, they can transpose their thoughts into strong metaphors. When patients come with stable chest pain from underlying heart disease, they are frequently provided a choice between medications or a procedure such as cardiac catheterization. Even though research has suggested that both options are equal, the image of have a blocked pipe propped open with a metallic stent is far more convincing than medications, which work through elusive mechanisms. Procedures usually give the illusion of doing more, and many patients who receive more procedures are more satisfied. Yet procedures also expose patients to complications and frequently are no better than less invasive alternatives.
The best thing one can do when making difficult choices under difficult circumstances is to simply ask: what does the data say? Fact is that despite there being an abundance of high quality research, many physicians practice what they have practiced previously. Physicians do things that have worked for them in the past. For example, if a physician is comfortable using a certain chemotherapy protocol, or with a specific way to do a procedure, it is difficult to do things a different way. While experience is a prized commodity for clinicians, research suggests that more experienced physicians tend to be more rigid and may provide lower quality care. Asking physicians to talk about the evidence is always a way to force them to think about what is going on behind their own medical decisions.
Focus on Values (Not Lab Values)
Medical conversations have a tendency to become focused on labs, tests or procedures. Physicians perpetuate this fixation on numbers and tests because we ourselves are used to doing just that. Frequently, patients and family members follow suit and can become hyper-focused on these things. Discussions that revolve around such constructs can frequently be befuddling, might miss the point and play to physicians’ strengths. The best medical discussions revolve around values – what is a patient’s goal, what is it that they would like to be able to do, what would they like to avoid. This is true both for when patients themselves are involved and especially true when decisions are being made for patients by surrogates. When values are established, then the medical team can help draw a roadmap to be able to achieve that.
Big wins for patient autonomy may have swung the pendulum of medical decision far towards one direction, for few patients want to be truly autonomous. At a dinner party, I was talking to the elderly parents of a friend. They began asking me very complex questions about their health.
“But, what does your doctor say?” I asked his mother.
“The doctor gives me all these options. I just find it very overwhelming”.
Haider Warraich is a physician, writer, and clinical researcher at Duke University Medical Center. He is the author of Modern Death – How Medicine Changed the End of Life.
Great article. Loved the quote focus on values, not lab values. Wow
I have a PhD and know how to read a medical journal. Doctors get very annoyed when I say I won’t accept a test or procedure without evidence. For instance, a PCP insists that people over a certain age (I’m not sure what) have a cardiogram on their first visit, plus a bunch of other tests. When I made the appointment (for a workout injury) I said I would be declining all the tests and would go elsewhere if they were required. I told them I’d read the literature and, when I met the doc, cited a bunch of sources. Surprise, surprise: the doc said they wouldn’t be needed after all.