The Recorder - My Turn: Looking for patient-centered care in a pandemic

A few weeks ago, I drove a home-bound elderly man to get a COVID test in Greenfield. The test took only a few minutes, and the results se...

A few weeks ago, I drove a home-bound elderly man to get a COVID test in Greenfield. The test took only a few minutes, and the results several days later were negative. But that trip reminded me how our health care system is often designed around the convenience of providers, not of consumers.

I worked for 38 years as an executive in the elder home care system in Massachusetts. Since leaving that role, I’ve spent the past two-plus years volunteering as a home services coordinator for a local elder. I should have reversed that order, and worked first at the micro-level. Instead of helping to write laws for the welfare of older people and lobbying for millions of dollars in funding, I should have first experienced the issues from an elder’s perspective. I am now learning that what we say we want for elders and the disabled, is not the same as how we actually treat them.

The man I help is bed-bound. I escort him to all his medical appointments: cardiologist, gastroenterologist, urologist, primary care doctor, etc. He has seven loyal workers who care for him in his apartment almost 24 hours a day. He is incontinent, has a catheter, has pulmonary disease, a pressure ulcer, a pacemaker and has been prescribed oxycodone and valium for years to deal with his constant pain and anxiety.

To get this elder into my car, he has to be dressed, lifted out of bed and transferred into his transport chair, switched from his central oxygen to a portable tank, and then wheeled to the car and transferred into the vehicle. He weighs about 145 pounds, and is not weight-bearing. This is why I prefer to order him a wheelchair van from the FRTA, which is a godsend. But because he is on MassHealth, I have to order his care three days in advance, and make sure that MassHealth has preapproved a separate general transit authorization to a specific address for each doctor’s office, one for High Street, one for Sanderson Street, one for Federal Street, etc.

When my friend needed a colonoscopy, he had to be COVID-tested three days in advance. Baystate Franklin in November moved its COVID testing from 164 High St., to 157 High St., so I did not have a pre-authorization from MassHealth for that address. His primary care doctor ordered the trip, and was told it had been approved.

But when I called the FRTA to schedule the trips to and from the testing site, the FRTA had no authorization faxed to them by MassHealth and had to deny the ride. I called MassHealth several times to discover that the 157 High St. address was not on the MassHealth approved list, so the ride was rejected. I told the people at Baystate that their program was not an approved site, a fact that schedulers were not aware of because it only affects poor people on MassHealth.

I squeezed the elder into my car, loaded his transport chair into my hatchback, and we drove 15 miles to the Greenfield site, waited until the staff came to the window, and he got his nose swabbed. This frail, 76-year-old man, bundled up in his winter coat, his catheter line looped over his seat, his oxygen tank tucked beside him in the car, got his test, was driven 20 minutes back home, and put back in his bed. I’ve done this COVID trip twice in the past month.

I muttered to myself: “This is not ‘patient-centered care.” The New England Journal of Medicine defines patient-centered care as “the driving force behind all health care decisions and quality measurements.” Make the patient’s needs, wants and outcomes the center of every health care decision.

On Dec. 15, the Food and Drug Administration approved the first COVID test that people can buy for about $30 at a local store without a prescription, and use at home, with immediate results. But the Australian manufacturer, Ellume, says the test won’t be available until January.

This same elder was unable to rent or buy a low air loss mattress for his pressure ulcer because no durable medical equipment company in Western Mass. carries them, and the ones in Eastern Mass. that have such mattresses, won’t deliver beyond Worcester.

It’s these kind of daily indignities that poor, disabled and elderly folks endure, while the rest of operate under the delusion that we’re giving them “patient-center care.”

Al Norman was a lobbyist in the elder home care field in Massachusetts for nearly four decades. He is a resident of Greenfield.

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Newsrust: The Recorder - My Turn: Looking for patient-centered care in a pandemic
The Recorder - My Turn: Looking for patient-centered care in a pandemic
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