Patient Participation in Decision-Making

“Patient-Centered” decision-making is a new buzz-word in medicine. It is a metaphor for a general approach to care that puts the patient’s experience and needs at the center, as opposed to the needs of the physician or the system.

While this is an effective marketing term, and a useful principle as far as it goes, as a guide to medical practice it is a bit simplistic. It needs to be viewed in the context of the overall medical infrastructure and the net effect specific practices have on the cost and effectiveness of medical care.

A 2012 NEJM editorial by Charles Bardes nicely summarizes the issues. He notes that patient-centered care represents the next step in a general trend (a good trend) in the medical profession over the last half-century:

The British psychoanalyst Enid Balint appears to have coined the term in 1969. She described a form of mini-psychotherapy that general practitioners could provide for persons who had illnesses that were partially or wholly psychosomatic. Her concept contrasted with “illness-oriented care” and meshed well with other critiques of modern medicine’s emphasis on pathophysiology to the exclusion of other means of knowing and treating the patient. Landmarks in this paradigm shift have included Engel’s proposal for a biopsychosocial model that would “take into account the patient, the social context in which he lives, and the complementary system devised by society to deal with the disruptive effects of illness”; Cassell’s transcriptions of clinical encounters, which provided an empirical basis for understanding the doctor–patient relationship; and Kleinman’s definitions of “disease” and “illness” as contrasting the doctor’s understanding of disordered biomechanics with the patient’s subjective experience of feeling sick.

He concludes, and I agree, that the patient and the physician are both the central actors in the doctor-patient interaction, but that there are interested third parties, like insurance companies, that also affect decision-making.

The optimal balance between the doctor, the patient, and third parties has been a longstanding debate within medicine. Thoughtful engagement on this issue, it seems, has resulted in real progress. The old paternalistic model, in which the patient simply did as they were told without meaningful consultation, has largely been replaced with a more cooperative model and one that properly grants to the patient informed consent.

Unfortunately, complexity intrudes on this comfortable relationship. We have to recognize that we are somewhat at cross-purposes. Optimal medical practice would maximize several outcomes simultaneously — the patient experience, doctor and patient autonomy, medical outcomes, and cost effectiveness, to name the most important. The problem is, you can’t always get all of these things to an optimal degree at the same time.

Medical outcomes, for example, are optimized when quality control measures are put into place, but these measures often reduce patient and doctor autonomy. Cost constraints also may come at the expense of patient experience and doctor-patient autonomy (we hope not medical outcome, but realistically, this also).

Whenever we push or pull on this entangled system, we have to consider the net effects on all the other aspects.
A recent study, for example, looked at the effects of patient participation in decision-making. This was a survey of 22,000 patients admitted to a hospital system, asking them about their desire to be informed about decision-making, and also to participate in medical decision-making. Nearly all of those surveyed responded that they wanted to be informed, but more than 70% also wanted to leave the medical decision-making to their doctors. The rest wanted to participate in the medical decision-making. The researchers then linked the survey results to length of stay and cost of care outcomes and found that:

“Preference to participate in medical decision making increased with educational level and with private health insurance,” the authors note. “…patients who preferred to participate in decision making concerning their care had a 0.26-day longer length of stay and $865 higher total hospitalization costs.”

A recent review of research into health outcomes with patient participation was inconclusive — the existing studies are scant and of poor quality. So this question remains an unknown.

There appears to be a lot of support for shared decision-making as an idea, and most of the published studies focus on how to improve shared decision-making. We need more research, however, on what the actual effects of this shift in practice will have.

I find it interesting that over the same course of time, the last few decades, there has been a shift away from physician experience as the ultimate arbiter of decision-making, to evidence-based medicine, practice standards, and quality control. The evidence is pretty clear that evidence-based guidelines produce better outcomes than physicians relying on their own experience and judgment.

The rising costs of health care make all of these issues much more acute. Can we afford a philosophical shift to greater patient involvement in decision-making when it is associated with higher costs and we don’t really know the net effect on medical outcomes but there is good reason to suspect that it may be negative (when compared to evidence-based standards)? It seems to me we should more thoroughly explore these outcomes before we institute major infrastructural changes.

Meanwhile, what is the best synthesis of the evidence that we do have? The good news is that what most patients want, and how most physicians practice today, are also non-controversial in terms of cost and medical outcome. Patients want to be well-informed, and informed consent is the current standard of care. There does not appear to be any downside to informed consent.

Where it gets tricky is the proper balance of actual decision-making between the doctor, the patient, the insurance company, and other mechanisms of quality control (such as official practice guidelines). The evidence supports heavy reliance on rigorous evidence-based guidelines as much as possible. The health care system and patients would benefit from exploring ways to enhance compliance with such guidelines.

Insurance companies, in my opinion, are a double-edged sword. They can actually reduce health care costs by avoiding unnecessary tests and treatments (when they follow evidence-based guidelines) but can also hamper the practice of medicine with short-sighted rules and requirements and onerous procedural hurdles.

Patient participation in decision-making remains a complex question. Clearly there is no one model for all patients — patients have different desires in this regard, and varying healthcare literacy. Keep in mind, an adult competent patient is 100% in control of their own health care decision-making. The ultimate decision is always theirs. What we are talking about is how the patient and physician should interact.

For example, should a physician present a recommendation to their patient, or a list of options, or both — this is what I recommend, but here are some other options and their strengths and weaknesses. This hybrid approach is what I do and what I find most of my colleagues do, individualized to the patient. There is an art to this that cannot be captured in any algorithm.

One huge advantage to patient participation in the decision-making process is that they are more likely to be compliant with the treatment plan. The best recommendation is wasted if the patient does not follow it. Patients are often reluctant to contradict their physician if a strong recommendation is made without consultation, but then they will not follow the recommendation and will seek a second opinion (at extra cost to the system).

To the extent that patients ask for or the physician offers options, it is necessary to give accurate information about risks and benefits. Patients often need counseling if fear, anxiety, or hidden misconceptions are causing them to make decisions that depart significantly from what the evidence suggests is the best course. This, of course, all depends on what the patient’s goals are, and this is always a good place to begin (rather than assuming what their goals are).

All of this complexity is probably why existing evidence is inconclusive — it is very difficult to capture all of this nuance in a clinical trial. But still, we must try. The stakes are simply too high to make major changes to the practice of medicine based upon feel-good philosophy without the backing of rigorous evidence.

Posted in: Science and Medicine

Leave a Comment (25) ↓