Saving Seymour

Until he was in his mid-80s, my Dad was a sexy raconteur able to amuse dinner partners with tales of youthful exploits and mature successes. Then he developed a rare skin condition which his dermatologist treated with Prednisone, not an ideal drug for a chronic ailment in an elderly individual—and at 88, he fell victim to steroid myopathy, a condition in which muscles weaken and atrophy from steroid exposure.

This was last October. An ambulance was called to my parent’s flat to lift Dad off the dining-room floor and since then he’s hasn’t been able to walk, let alone stand or sit without assistance. For a month and a half he was transferred between ICUs, hospital beds and rehab facilities where interventions made his condition worse—he fell out of bed; was administered medications that shouldn’t have been administered, and not given those he should have received; notes in his file went either unread or misinterpreted; medical/social work personnel rotated in and out; diagnoses/decisions were made out of context. The list goes on and on, incompetencies atop incompetencies, even when intentions and personnel meant otherwise. 

Dad’s case, I fear, is repeated in every hospital, rehab and skilled nursing home in this country.

It is not news that Healthcare as practiced in Show-Me-The-Money America is, unequally, hyper-bureaucratically administered.  I am not expressing original thought by saying a single payer, no-incentive-for profit (not to be confused with the current legal definition of non-profit; so often a tax loophole) is the first-step to remedying this. Advocates of keeping the Healthcare system as is say it works. These advocates probably haven’t yet tried to keep a “loved one” from dying in it. Even if a patient has “coverage,” he remains a cost to be contained.

Here are just a few bureaucracies/convolutions/circles of hell we’ve encountered.

Once a patient is registered in a rehab/nursing facility he no longer has contact with his primary care physician. Ie, when a patient is at his frailest, he can no longer see the doctor who understands the context of his illness (probably a combination of pathologies). 

At best, the patient will have a daily pop-in by a “freelance” doc who, upon seeing, signs of medical distress, will return the patient to the hospital because rehab/nursing facilities are not in the business of providing medical care and the last thing he wants is to have his butt exposed to a liability suit. Freelance docs are supposed to read recommendations/patient synopses from primary care physicians, but they can overrule these—in Dad’s case, we were informed that the medication prescribed by the primary care physician to wean Dad off steroids was “very expensive” and as such, the rehab doc did his best to prevent its administration.

Once a patient is outplaced from a hospital to a rehab/skilled nursing facility (even a dirty, urine-scented, one-star-out-of-five-stars facility like the one Dad was moved to), he cannot transfer out without first taking a three-day detour back to the hospital.  (This is, like all else, a reimbursement issue.)

According to a New York State ombudsman contacted re my Dad’s case, it is SOP for rehab/nursing facilities to start a patient in rehab than downgrade them to skilled nursing—when this happens, the provider is, by law, allowed to offer lower reimbursement. It is also SOP for a patient to be moved from skilled nursing to “custodial care”-- for which the provider is entitled to provide NO compensation (or at least according to the “coverage” agreement of Dad’s plan.)

The list goes on and on but it’s fair to say that this is not a system cares about  patient recovery. Financially, is more expedient for patients to die, especially patients scared and occasionally irrational because under-respected and no doubt chip-on-their-shoulder freelance docs have, by omission or commission, administered the wrong drugs. “Your father has dementia,” we were told by a particularly negative member of this class. Saying my father has dementia is like saying Healthcare is not an oxymoron.

The past several months have been a roller coaster of Kafkzesque twirls and Grapes of Wrath suffering, but through the unrelenting persistence of my sister-in-law, a woman of keen legal mind, impressive research skills, and don’t-you-dare-treat-me-like-that confidence when talking with Healthcare gatekeepers and providers, my father will soon (without the three-days-needed in hospital stay) be moved from the urine-scented nursing facility in which he’s been a “resident” since mid-December.  His recuperation will continue in a three-star rated suburban facility in which we hope he’ll make increased progress.  It’s too early to tell, but I for the time being, I think he’s been granted a reprieve from purgatory.