Tuesday, April 19, 2011

Patient-driven care instead of patient-centered care

After being part of a discussion at the Institute for Healthcare Improvement today, I have decided to change my profile, above, from this:

To this:

What I am suggesting is that clinicians should do their best to collaborate with patients to understand their needs and desires and to jointly design plans of care that are as consistent as possible with those needs and desires.

I am not suggesting that patients take over the role of doctors and nurses. I also recognize that there are instances in which patients will be unable to communicate their needs. Then a double burden falls on the clinicians -- not only to help cure those patients but also to do so in a manner that would be most sensitive to the likely concerns of the patients.

None of this requires clinicians to assume expertise that doesn't exist on the part of the patients, or to give up their own moral or ethical beliefs or belie their training or experience. Instead, it suggests that, to quote e-Patient Dave, "Patient is not a third person word." Or, as Charlie Safran said in 2004, "I want to note especially the importance of the resource that is most often under-utilized in our information systems – our patients."

In short, it suggests a partnership between patients and clinicians that will allow both to do a better job in carrying out the healing process.

Simple? No. It requires mutual respect, intellectual modesty, a lack of entitlement, and a somewhat paradoxical combination of engagement and detachment that will be hard for both clinicians and patients to carry out. But the upside is huge, for both, if we can learn how to do it.


Serena said...

From Facebook:

The physician I work with tells patients, "You are the president, I am your advisor." When patient's continue to smoke and we tell them they need to stop; we tell them "you pay us to tell you this." I was recently at a conference where a cardiologist was discussing the JNC7 guidelines; what I found most helpful was not the science he presented but the "art" of how he applies the info to his patients. He tries to ask what will work for them and what they actually do, will do, and are and aren't willing to do.

Barry Carol said...

I wish every clinician would, as e-patient Dave said in his recent talk that you posted, “let patients help.” With respect to the management of chronic disease like diabetes, asthma, heart disease, etc. the patient usually knows full well what he or she needs to do – lose weight, stop smoking, exercise, take the medication(s), but finds it difficult or unpleasant to comply with the advice and the consequences of non-compliance are usually deferred, not immediate. Regarding end of life care, this is where the patient’s values are relevant and important but are often either not sought or ignored. Doctors are also often not willing to consider research that patients like Dave bring to the table from social media, the Internet and elsewhere. If patients have executed living wills or advance medical directives, those wishes need to be respected and the information needs to be stored on a registry so it is readily accessible to clinicians when needed. At the same time, for patients who want to be passive and, in effect, outsource all clinical decision making to doctors, nurses and other providers, that’s their choice as well.

Anonymous said...

Well said, Barry. However, somebody really needs to get this message through to the average doctor loud and clear. Like the one at Hopkins who just said to my mother, 'what do you want to do?" w/o any explanations or discussion, when she went for a 2nd opinion. If that's their idea of respecting patient preferences, there's a long way to go.
Who will do this?


e-Patient Dave said...

Paul, I'm running out the door to a flight, but a quick note: yes, yes, yes.

I've posted several things along this line at times. A recent one (though it's buried) is here (9th paragraph): "A deeper issue is the question of who gets to define what quality is. In every transformed industry, the customer does, but in this one, they measure whether one professional did what another one said to."

Elsewhere I asked, "If the microscope is happy but the patient's not, has care been achieved?" Anyone who's sat in a hospital bed for hours waiting for a call bell to be answered has a simple example of that.

Last month at Mass General I co-presented with the mother of a child whose doctors (not at MGH) insisted on a particular treatment because the evidence said it had better EFS (event-free survival). The parents wanted to know, "But what about side effects?" The docs insisted on their priorities, and said if they wouldn't do it their way, they'd help the family find another hospital.

Can you imagine Toyota saying, "Look, buy what we made. If you don't like it, there are lots of other dealers on the auto mile. Have a nice life."

Two years ago I started my talks with "I'm new at this - I freely admit I don't know a thing about healthcare." I still don't know much, but I'm certain about one thing: an essential root cause of our failure to improve is that the industry is defining what quality is, rather than asking its patients.

Have a look at that post linked above, which is about an article in the AMA's own internal medicine journal. It defines "quality of care" not by whether the family felt cared for, but simply by whether the physicians prescribed the correct thing! Exactly as if Toyota defined quality as "did the workers do what other workers said they should do?"

Anonymous said...

"Shared Decision Making" is a concept that we here at Dartmouth refer to often.

Tuck School of Business at Dartmouth

Anonymous said...

Purported 'patient-centered' metrics are absurdly detached from the reality that patients experience. HCAPHS surveys are mailed (think about this) to a patient's home weeks after care (think about this) with oblique questions about 'communication' and 'satisfaction' and 'recommendation'. It is no wonder that they have poor response rates and predictive power.

And yet ACO contracts reify their authority and multiply our blind dependence on them as conduits for understanding the populations we serve. Who is making all this money? How about asking patients and family members what they want when they walk in the door and if they got it on their way out? How about asking what felt good about good care, and what felt bad about poor care? Emotions have the most powerful influence on behavior, but medicine seems terribly afraid of them. This strikes me as naive.

If patients have unrealistic assumptions about care, and poor ability to stick to prescribed routines, it is time that we see this as part of our job. There are professionals in every hospital who know how to educate and provide comfort, and every patient is a potential partner in quality improvement. These kinds of human capital should be propagated. Before (if ever) we use the term 'non-compliant,' we bear the responsibility of investing in learning how to help people understand their disease, and participating in the creation of community mechanisms that address health needs. Shame on us for simply scolding those who suffer from them.

Elaine Schattner said...

I like the subtle shift in language, am not sure the drift is right for everyone.

Margo Corbett said...

The term "patient-centered" has always bothered me. It feels too passive for today's needs and leaves too much wiggle room to do whatever.

"Patient-driven" has a feel of a sense of direction with targeted action and certainly has more of a sense of urgency about it.

Until a better term comes along I vote for patient-driven as well.

Vijay Goel, MD said...

From The Health Care Blog:

I think its a great distinction you make. There are however, a pretty substantial number of mindset shifts that have to happen to transition from “doing whats best for your patients” vs. becoming a trusted advisor to help your patients achieve what they think is most important for their lives.

jonmcrawford said...

Dr. Goel, how so? Isn't what's best for anyone (who's a responsible, lucid adult) doing what they think is most important? The only mindset shift required is that even though you're the doctor, it's THEIR life, not yours.

(comment in the last sentence not directed at you specifically, generic statement for any physician)

Ken said...

all well and good as long as several aspects of the "perfect market" exist. One of the greatest barriers is information asymmetry where a "health consumer" may not have the context that is currently "owned" by a "health producer" and may also suffer from "receiver bias" (I must be receiving great care because I would not stand for lower quality care... or...at this precise moment when I am having a severe headache, my bias tells me to exercise patient-induced demand of "needing" a CT). As to Toyota producing autos that buyers do not want, they currently do that today. Although I can customize by color, engine size, and some accessory features, if I am unable to satisfy my personal bias for a "personalized body style" and want soemthing different, I buy from a different auto manufacturer. Like a dance, it's a TEAM effort, a patient-physician dyad that maximizes likelihood of success.

Anonymous said...

I wish the same applied at army clinics. You're not the patient, you have no feelings you have no say in what they do to you. You sit, the doctor out ranks you and will give an order about what is to be done with you. Turning down surgeries is rarely an option ether. I avoid army hospitals like the plague when I think something is wrong or know something is broke. Even if it means paying out of pocket.

Anonymous said...

Check out the Institute for Patient- and Family-centered Care. Their definition of PFCC is patient-driven care and goes further. They recommend involving patients and family members in the development, implementation and evaluation of healthcare services and programs, healthcare training/education programs and capital design. http://www.ipfcc.org/