Recently I heard from a woman in rural Nebraska who told me about her 76-year-old father, who in late April had a lemon-size cancerous mass removed from his brain. The man chose to have his chemotherapy and radiation treatments at a hospital close to his home instead of at one of the larger hospitals farther away. Not surprisingly, he wanted family nearby.
Nearly two months later, in mid-June, his treatments finally began.
Why the delay?
His daughter told me the nearby hospital “had no record of two appointments they had made with my dad and rescheduled at least once.” She asked me if her father was being neglected because he was on Medicare, adding, “He is so angry. We are so angry. So much for urgency and professionalism.”
So much for patient-centered care — that buzz phrase that’s all the rage in healthcare circles. It goes by a lot of different names like patient engagement, patient activation, and shared-decision making. If care is truly patient-centered, it revolves around eight principles identified in research by the Harvard Medical School and the Picker Institute. They include respect for patient preferences, coordination of care, information and education, physical comfort, emotional support, involvement of family and friends, continuity and transition, and access to care.
What passes for patient-centered care falls short for a lot of other people, too, like one man who spent weeks trying to get his diabetic test strips. His current supplier had lost its Medicare contract, and Medicare sent him a letter advising him of a new approved source. He called the number he was sent and ordered new strips. A week later he went to the pharmacy to pick up his supplies but was told they had no record of his order. Days passed before he got the strips.
Six months later he encountered another problem — this time with his supplier of pens used to inject insulin. He ordered them and approved the charge to his credit card using a telephone automated order system. Several days later the supplier called and left a message asking him to confirm the shipment. When he called back, he learned the cost exceeded the limit for automatic approvals, and the order wouldn’t be processed until he personally approved the charge. No one had told him there was a limit. So much time had passed that he had only a two-day of supply of insulin left. “The delay created a potential emergency,” he said.
Often patient engagement has come to mean selling things, particularly tools and devices, that purport to help patients manage their care. During the man’s many calls with the supplier the company tried to sell him knee and back braces, advising that Medicare would pay if he got a doctor’s prescription.
Last year I was invited to attend a panel discussion about innovations in patient engagement. The room was full of young marketers eager to sell their products and share the best ways to reach patients. Since the term patient engagement is so slippery, it wasn’t surprising the program began with a discussion of what it actually meant.
One panelist offered this definition: “It really has to do with how can you get patients to do more or become more active in the ecosystem about their health.” Another said, “Let’s think of patient engagement as a marketplace. How are they engaged in the marketplace?”
Another panelist noted, “People’s engagement with health is quite low. There’s a gap we’re seeing between technology and tools and the patients and doctors involved in using them.” A fellow panelist said patients “don’t want just excellent care. They want an experience.”
Most experts would argue that patients too often are not getting excellent care. Postponing medical treatment because of schedulers’ errors and nearly running out of insulin because a company’s procedures are inefficient hardly qualify as excellent care. “Experiences” like those are all too common.
That’s not to say patients shouldn’t be active in their care. Growing evidence suggests that patients who are more actively involved have better health outcomes. But that doesn’t mean profit-seeking providers should be pushing unnecessary care, pills, or devices onto patients.
What does patient engagement mean to you? Write to Trudy at trudy.lieberman@gmail.com.
