Editor’s Note: This is, in the form of the mandatory disclosure, the fruit of the intellect of Marlow, a colleague of distant year’s past. It is his story, but we all have them, don’t we?

Life & Island Times: It Is All on Us

Last week’s imperial city healthcare follies stoked citizens’ fears over the fate of American health care reform – both the proposed new replacement one and the seven year old version now in place. New and improved TrumpCare would have cut millions from the insured roles over the succeeding 4 to 5 years, while original ObamaCare costs are skyrocketing, providers (primarily doctors) are refusing to treat Medicaid patients, and insurers (aka payers) are leaving its exchanges. So, politicians did what they do best – kicking the can down the road once again.

Was TrumpCare’s non-vote a catastrophic loss or victory? Probably both, especially for American citizens. It is all on us and not them. Again. It always has been this way.

As we age, health care becomes about chronic conditions and occasional immediate life-or-death issues. This has to do in part with entropy as well as competing specialists for various conditions not liking the other’s medicines and treatment decisions and taking you off much needed meds. In crunch times of acute conditions, it becomes about whether, when, and where you can get treatment and care if you’re sick, and how long the system lets you get the care. It is so hopelessly complicated and complex and pits patients as individuals against faceless, implacable payer and provider institutions, whose DNA code when spelled out says D-E-N-I-E-D.

It puts the aged into increasingly complex decision situations as their mental acuity starts to wane. When my parental units started to fail during their mid-80s, their children stepped into the breach. The ass kicking started immediately. Doctors were fired. A concierge doctor was hired as their primary care physician and navigator of the conflicts between specialists and hospitalists. Insurance companies were mercilessly beaten and made to pay and pay and pay. Squabbling specialists were brought to heel.

Their children attended all doctor appointments, kept detailed notes and ensured there were no contradictory courses of treatment or medicines ordered without the contradictions being immediately resolved. Hospital and rehab facility officials came to fear these gatekeepers and their helpers.

This level of support ensured their parents’ ability to make the right decisions in accordance with their wishes. Their health and quality of life improved. And they said so.

This had the potential to embarrass these two wonderful people as their situations became too complex for them to manage. These shadowy places and times required clear eyed and experienced navigators and helmsmen/women. Opaque sounding rules were translated into plain English and resistant and manipulative provider and payer decision makers were read the riot act into compliance with the law and policies. It could no longer be all on these octogenarians as it had been for the previous 60 years. It had to be all on others.

This support team was unique – a sister in law lawyer with decades of knowledge in health care law, a sister in law registered nurse who owned and operated an urgent care business for a decade, a grand daughter’s friend who was a PhD pharmacist, a child who has a decade’s experience as a forensic accountant in healthcare, a second child who was a Fortune 500 company CFO and a third child who was professional grade ass kicker of bureaucracies and their denizens.

Well, their folks passed after they turned 90 but not before having gained several more years of high quality life before they moved on.

Now the support team children and spouses are entering their own ageing stage where this increasingly complex scene is all on them. They know from this experience that it’s not all about the cards in their wallets. It’s so much more that appears at times to be impersonal, needlessly complex, deliberately confusing and at times humiliating and inhumane.

It’s no longer about being covered and trusting the outcome. It is the antithesis of simplicity and clarity. They’ll work to make it as clear and simple as best they can. They’ll enlist each other to work harder if they have to. They will not cotton to being jerked around. Anytime. Anywhere.

In some ways, it’s like a gaming casino where the house odds are better than those in place in Las Vegas. So, as their parents did before them, these players will take their own house and bet it all on us.

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