By Trudy Liberman

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.

For the family in question, the Nebraska hospital simply didn’t meet those standards.

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.