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Looking For Patient-Centered Care In A Pandemic

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These are the kinds of daily indignities that poor, disabled and elderly folks endure, while the rest of us operate under the delusion that we’re giving them patient-centered care.

By Al Norman

A few weeks ago, I drove a home-bound elderly man to get a COVID test in Western Massachusetts. 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.

patient-centered, Social Security, ageist, nursing, COVID, TrumpThe 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 and a pacemaker. He was prescribed oxycodone and valium for years to deal with his constant pain and anxiety — and now he is an opioid addict.

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 regional transit authority. But because he is on Medicaid, I have to order his care three days in advance, and make sure that Medicaid has pre-approved a series of separate transit authorizations — each one to a specific address for each doctor’s office.

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.”

When my friend needed a colonoscopy, he had to be COVID-tested three days in advance. Baystate Franklin hospital in November moved its COVID testing from 164 High Street, to 157 High Street — so I did not have a pre-authorization from Medicaid for that address.

His primary care doctor ordered the trip, and was told it had been approved. But when I called the transit authority to schedule the trips to and from the testing site, the authority had no authorization faxed to them by Medicaid, and the ride was denied.

I called Medicaid several times to discover that the 157 High Street address was not on the Medicaid approved list — so the ride was rejected. I told the hospital that their COVID testing site was not an approved site — a fact the schedulers were not aware of — but it affected every low income elder and disabled person in the county.

I had to squeeze the elder into my car, fold up his transport chair into my hatchback, and we drove 15 miles to the testing site, waited for the staff to come to the window, and swab the elder’s nose.

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 had to do this COVID trip twice in the past month because testing site is still not listed on Medicaid’s computer screen.

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. But 11 months into this pandemic, we still have no way to test homebound people in their homes.

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 this month.

This same elder also 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 us operate under the delusion that we’re giving them patient-centered care.

Al Norman was a lobbyist in the elder home care field in Massachusetts for nearly four decades. He has written opinion columns for Fifty Plus Life for more than twenty years. He can be reached at alnormaneldercare@gmail.com

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