Right Now, They Treat a Part of You
Updated: Aug 2, 2018
by Athena Godet-Calogeras - Until recently, my brother’s calendar — and time — was totally penciled in with doctor appointments. Jim had 10 specialists to visit with as well as his primary care physician, nurse and physical therapist. Some required blood tests; others prescribed new or increased medications.
He had to undergo PET scans that forced him to lie on his stomach, an excruciating experience for a guy who had undergone an esophagectomy for cancer a little over a year ago. He had nephrostomy tubes inserted when his kidneys malfunctioned because of a blockage that was suspected but could not be identified. He was shown how to measure the urine output; family members learned how to flush the tubes; no one knew how long the tubes or the underlying condition that necessitated them would remain.
The nephrologist and the urologist treated his kidneys; the oncologist checked for metastasis; the cardiologist paid attention to his heart; the hematologist to his blood, and so on … and so on. Each specialist focused on his or her area of specialty and the part of the body connected with it. If two or three different specialists required a blood test, he had two or three blood tests (instead of one that could test for two or three conditions). For each test or doctor visit there was someone, usually a relative, needed to drive my brother, wait with him at the various offices, help him understand the physician’s description of findings and treatment, organize and administer medications, and try to keep his spirits up.
Jim endured those long weeks of doctor visits, long days of increasing fatigue and often frustration, with but one complaint: “None of the doctors says, ‘Here’s the problem — and here’s what we’re going to do.’” None of them spoke to the whole person, a person who is much more that a conglomerate of organs and systems. “This is the result of a system that’s still largely focused on the historic way clinicians deliver care (by sites of care and by specialty) rather than by how people should receive care.” (Harvard Business Review, Dec. 14, 2015).
The stress that my family has felt is, I’m sure, echoed in the lives of many of this newspaper’s readers. Certainly, we appreciate the expertise of our health care professionals, but we ask that they see first the person, their patient, who is sick, vulnerable, and often scared. Here, the Canadian-born physician, William Osler, is often quoted: “It is more important to know what sort of a person has a disease than to know what sort of disease a person has.”
Probably the problems with health care that my brother and so many others have experienced are related to the very structure of our complex, fee-for-service health care with its myriad of unconnected and competing delivery systems. That structure includes how our future physicians are educated, most who now choose among a plethora of specialties, each utilizing specific medical tests and pharmaceutical regiments. The “thing” i.e., the specialty, the particular pill, the latest technological device can divert the attention of health care professionals from the persons who come to them for healing.
“Healing requires relationships — relationships which lead to trust, hope, and a sense of being known. But our healthcare system doesn’t deliver healing. It doesn’t deliver relationships. Increasingly it delivers commodities that can be sold, bought, quantified, and incentivized. While the whole — whole people, whole systems, whole communities — gets worse” (Annals of Family Medicine, March 2009. Kurt C. Stange, MD, PhD).
I hope that changes. I hope, someday, health care will return its primary focus to the person who would no longer be overwhelmed and confused by a fragmented system. Then, perhaps, there would be one member of the health care community who would journey with the patient, link with the various specialists and systems and connect and communicate findings, and who knowing how much the patient — and the caregivers — could handle, would see that appointments are scheduled accordingly. No longer would price tags be attached.
That may be a utopian dream. But, I know from my brother that it’s a dream worth pursuing.
(Athena Godet-Calogeras is chairwoman of the Health Care Access Coalition and a volunteer with the Cattaraugus County Health Department.)