Patient-Centered Care in Cancer

Medicine, like everything else in life, has its fads and fashions. Once it was rare for anyone delivering health care to wash their hands between patients. Then it became a fad in some quarters, eventually an expectation for all health care providers, and today has the status of a holy commandment. In fact, even patients and visitors are now encouraged to clean up by taking a few pumps-in-passing from the hand sanitizer dispensers that hang from almost every wall of every clinic and hospital in this country.

Of course, not all medical fads and fashions turn out to be good ones. But some do. I hope that is the case for one of the latest: patient-centered care. It sounds rather odd to hear that for caregivers, focusing on the patient is a “new idea.” I mean, what do they think they’ve been treating all this time? Cabbages and rose bushes?!

But for anyone who has gotten caught up in the health care system due to chronic or acute illness, it’s a little more understandable. Sometimes it seems that to the doctors and nurses, we become our illnesses. Any individual identity that we might once have had disappears into the hustle and bustle of tests, procedures and charting. So, for us, the call to focus on us — the patients — seems right-on.

I’ve watched the growth of this patient-centered movement for a while, and I’m finding it interesting to note what the medical fraternity means by the term—and what it apparently has never occurred to them to consider.

Patient-centered care can mean several different things. One of the most oft-cited is respect for the patient’s values and preferences. Again, it seems odd that someone would have to be told to do this, but OK. I can see where the imperative to treat a condition, and the need to choose between the many options for doing so, might produce a kind of short-sightedness.

According to the Oneview website, dedicated not just to improving patient care but “revolutionizing patient experience,” there are seven other things that health care providers can do to make their practice more patient-centered, such as making sure various facets of the patient’s care are coordinated and integrated with one another, improving the way they communicate information to patients, and respecting (indeed, taking advantage of) the patient’s support network. (See http://www.oneviewhealthcare.com/the-eight-principles-of-patient-centered-care/ for their eight suggestions on how to provide patient-centered care.)

This is all well and good, but there are some who believe it doesn’t go quite far enough. Such approaches maintain the traditional top-down pattern in medical care: the lists of improvements are things that doctors and nurses should do for or to patients.

Other voices in the “patient-centered” movement believe that it’s about more than just changing doctors’ and nurses’ habits. For instance, the Society for Participatory Medicine is “devoted to helping patients and healthcare professionals work together as partners,” according to their website. Its guiding principles focus not on what doctors should be doing for/to their patients, but on what patients should be able to be doing with their doctors. Two big attention-grabbers for the group right now are the need for better and more integrated electronic health records, as well as the need for free and easy patient access to and/or management of their own records. (For more on the S4PM, see https://participatorymedicine.org/about/.)

I find this approach very compelling. It goes beyond ordinary patient-centeredness and is, in fact, about patient empowerment—the idea that patients should not be consigned to the role of being passive recipients of their own medical care, no matter how good (or bad) it may be, but should instead be able — nay, expected — to be active participants in it. This was the attitude that came naturally to me when I was faced with cancer. For more than one reason (some good, and some bad) I was, or tried to be, an active participant in everything that happened to me.

I have come to believe, however, that even this approach to patient-centeredness does not go quite far enough. For modern medicine to be truly patient-centered, I feel that it needs to be able to unhitch the individual from the individual’s membership in whatever reference group the doctor or nurse has decided is medically appropriate. In other words, in true patient-centered medicine, each patient should, in the end, be a medical “n” of 1.

The heart of modern medicine is not individual-centered, but group-centered. Whether someone is declared to be sick or well is determined by whether or not their symptoms and test results fall within a set of parameters that have been pre-defined as “normal” for a group. It’s not a matter of what is normal for the patient. It’s a matter of what was normal for the thousands and thousands (n > 1000s) of people who, when given this same test, had results within this range. If your test results fall into that range, then you are considered “well.”

This “n > 1000s” approach to the diagnosis and treatment of individual patients works most of the time. But sometimes it doesn’t. Sometimes it leaves patients twisting in the wind because doctors don’t know how to look past the thousands, unhitch the patient from the group and see them as an “n of 1.”

Doctors are not trained to see a patient as a biochemically unique person for whom the established parameters defining sickness and health may not apply in any given instance. But every person is, in fact, biochemically and physiologically unique. The range of what constitutes normal for “n > 1000s” may not constitute normal for “n = 1.” When that is forgotten — or ignored — the patient suffers.

While most of us may not know our normal BP or our normal heart rate or blood sugar, every one of us knows his or her own body—what it feels like when it is well, and thus, what it feels like when it is not. When what your body feels like changes to such an extent that your quality of life declines, you know that something is "off," no matter what a set of lab reports or scans may say.

Doctors need to learn to privilege those kinds of patient reports rather than chalking them up to hypochondria, mental distress or — the fad cure-all currently in wide favor in medical circles — not getting enough exercise. Those kinds of quick-and-easy, brush-off diagnoses may in fact be true observations about the patient. But if they are, doctors should be asking themselves the old “chicken and egg” question: did the lack of exercise/mental distress cause the symptoms, or did the symptoms cause the lack of exercise/mental distress?

And what if those kinds of diagnoses are, in fact, not true? What does that do to the patient desperate for some answers and relief?

The tough diagnostic cases—the ones where all the tests and lab reports come back looking normal but the patient continues to complain of ill health? THAT is the point at which hard-core, patient-centered, n = 1 care should begin. I pray that this becomes our next medical fad.