Shared decision making is hot right now. ResearchSurveysToolsTrainingConferencesPolicies.

The current model of shared decision making consists of providing patients with evidence that allows them to compare the risks and side effects of different treatments or preventive services when more than one option is available. After studying the evidence, the theory goes, patients discuss it with their physician, weigh their personal preferences and together the two agree upon a course of action.

As an advocate for policies that support people’s engagement in their health care and a veteran of a few serious illnesses, I support this approach. But I am also currently a cancer patient. Over the past months, I have found it hard to align the neatness of shared decision making that exists in the warm environment of the conference room with the cold reality of the exam room. It seems idealized, isolated from the clutter of health care delivery and the emotional and physical ebb and flow of illness. As a professional, I looked forward to an orderly process of sharing decisions with my oncologist.  Here is my day-to-day experience, not much different than that of the average patient:

Week 1: I meet my oncologist. I had surgery a few weeks before to remove a tumor in my stomach.  I am still foggy with fatigue, but I’ve poked around online to learn about possible treatments. He describes the current evidence about the disease and its treatment.  I tell him I’m worried that the chemotherapy will make it hard to think and write. We decide to finalize a plan at my next visit once I have regained some strength.

Week 3: I feel better. I’ve consulted a number of oncologists to get their treatment recommendations and I’ve read more studies, some recommended by my oncologist. He answers my many questions about the evidence and the other opinions.  We look together at survival curves for patients with my cancer at this stage and commiserate about the lack of evidence about which mix of drugs might lead to the best result. After talking for an hour, we agree on a chemotherapy regimen to start two days later.

Week 4:  I struggle hard to concentrate during the visit but my thinking is blurred. I haven’t eaten or drunk much for days because of the nausea caused by the chemotherapy.  I want to know how to reduce the side effects of the chemotherapeutic agents and the drugs used to counteract them.

Week 5:  I have almost no recollection of this meeting.  I feel so sick I can barely sit up. I give monosyllabic answers to my oncologist’s questions.  Before he bundles me off to be rehydrated, we decide to stop the treatment.

How many important decisions did we make together about my care over these few weeks?  How many of them were preference-sensitive? How many involved a formal display of evidence?  And in how many of those decisions was I a rational, informed participant?

Those who work to enable individuals to engage more fully in their care (and professionally, I include myself here) concentrate their efforts in a space that lies somewhere between a rock and a hard place.  The “rock” is the fact that most of us are mostly well most of the time and so have little interest in learning about the range of diseases that we might someday contract or the treatments we may someday need.  The “hard place” is illustrated above:  When we are faced with health care decisions, many of us are frightened or our minds are clouded by pain.

Shared decision making assumes that a generous zone of calm and clarity is between that rock and that hard place: that health decisions are made when our willingness to pay attention coincides with our ability to find relevant, unbiased information, weigh it against our preferences and make sound judgments about our care, unhindered by our suffering and in collaboration with a trusted health care provider. 

For some decisions – Get a PSA test? Have surgery for heel pain? – this zone may exist. But anxiety and suffering can interfere with rational deliberation for even minor decisions. When we are ill, the likelihood of interference is even greater.

Why, then, is so much activity directed toward this sweet moment of converging sanity, capacity and data? 

A couple weeks ago I attended (via the Web) a conference convened by the leading voice in this field, the Foundation for Informed Medical Decision Making.  After listening to the speakers at the conference, this is my answer:

Because we need a good model. 

It is important to have (and to promote) a step-by-step process to present us and our families with evidence that helps us understand the trade-offs of health decisions and to thus prepare for productive discussions with our physicians. And it is important to know that most individuals and physicians who go through this formal process find it feasible and satisfying.

But it is the values that this model embodies that justify the focus, energy and investments in it. Those values are that:

…Information and evidence about tests and treatments is a critical component of many health care decisions.

…Patients and caregivers can understand evidence and can use it to help them weigh their options.

…Providers can discuss available evidence – what is known, where it is lacking and what it means – with patients.

…Patients are explicitly invited to participate in the decisions about their care (even if that participation consists of delegating decision-making to a caregiver or physician).

…The opinions and preferences of patients – informed by their understanding of the evidence –shape and determine the tests they take and the treatment they undergo.

For most Americans, these values are not reflected in current expectations about their role in their care.  Nor do these values shape the day-to-day practices of most providers. 

Shared decision making is an aspirational model that delineates changes that are necessary, given the increasing number of options we face in making good use of our health care.  In its precision, the model demonstrates to us, our caregivers and our providers just how these values might guide the many decisions that we navigate together every day.

Sure, the choice before me, my abilities and my condition will always influence the way my physician and I interact.  And of course, the progression of science will by its nature limit the depth and breadth of any formal set of evidence I review. 

But the values embedded in shared decision making were woven through the five weeks I describe here, even when my doctor and I were in “hard places.”  My participation in my care was enabled and expected.  My choices guided my treatment.  My provider and I worked together to ease my suffering.

The heat now accorded to shared decision making is driving a shift in the values and behavior of us all.