For When You Want to Give Up All Hope of Policy Change

Beach sign reading "Future" with an arrow pointing to the right, and "Past" with an arrow pointing to the left
Photo by Hadija / Unsplash

"This is something we really cannot duplicate in the United States," Dr. Elisabeth Kübler-Ross tells the U.S. Senate Committee on Aging one August day in 1972. "In England," she continues, "it does not cost the patient a penny."

She isn't talking about rehabilitation, physical therapy, or occupational therapy.

Dr. Kübler-Ross is talking about hospice.

In 1972, not only is hospice non-existent in the United States - let alone being paid for by the government - it isn't really even a concept for most Americans.

At that point, dying patients are mostly isolated to hospitals, institutions, or nursing homes. Dr. Kübler-Ross is in Congress to talk about folks being able to die in their homes, die with professionals skilled in end-of-life care.

Two years after Dr. Kübler-Ross' testimony, Florence Ward, former Dean of Yale's nursing school, founds America's first hospice on Double Beach Road in Branford, Connecticut.

That same year, two Franks - Senators Frank Church and Frank Moss - introduce a bill to provide federal funds for a hospice type of care.

And that bill, my friends, that bill that would usher in a new era in American health care...goes absolutely nowhere.

Years tick by. Hospices start popping up in some communities. There are symposiums. The National Hospice Organization is established; it hosts a 1,000 person conference in our nation's capital.

Then Senators Ted Kennedy, Bob Dole, and Abraham Ribicoff request a study to see if hospice could be a potential recipient of Medicare and Medicaid payments.

If we think Senator Ribicoff is a bit of a no-name alongside the starpower of Senators Kennedy and Dole, that no-name teamed up with Ralph Nader to create the National Highway Traffic Safety Administration. NHTSA does recalls of faulty cars and sets fuel economy standards, which regulate how far a vehicle's gotta go on a gallon of gas. So those stickers on new cars that tell you how many mpg the vehicle gets in the city and on the highway? We can thank Senator Ribicoff for that.

A government pilot is done in 16 states to determine the scope of hospice services and cost of care.

Then it's 1982. The Tax Equity and Fiscal Responsibility Act passes. And there, on page 356, you see it: Congress creates a Medicare hospice benefit. Schnikes!

Then it's 1985. Congress passes the Consolidated Omnibus Budget Reconciliation Act. And in a great reminder to not judge a book by its cover or a bill by its title, right there on page 168, plain as day, the Medicare hospice benefit is made permanent as a Sharpie.

Point of fact: It's not at all plain as day. Unless you call this plain as day:
"(a) ELIMINATION OF SUNSET.—Section 122(h)(1) of the Tax Equity and Fiscal Responsibility Act of 1982 (P.L. 97-248, 96 Stat. 362), relating to the end of the effective date for hospice care, is amended— (1) in subparagraph (A)— (A) by striking out "(h)(1)(A) Subject to subparagraph (B), the" and inserting in lieu thereof "(h)(1) The", and (B) by striking out ", and before..."

And since I imagine I've already lost you, I'll spare us both the rest.

So let's review:

In 1972, Dr. Kübler-Ross says hospice where patients don't pay a penny is not something we can do in the United States.

And in 1982, Congress funds hospice in the United States. Three years later, Congress makes some of the funding everlasting.

It's imperfect, of course. Federal law is a blunt instrument that never perfectly suits the millions of different people with millions of different circumstances in this country.

But the fact remains: An idea that was once totally unfamiliar to many Americans is now totally widespread.

Sometimes legislators introduce messaging bills that don't go anywhere. And then sometimes legislators introduce bills that don't go anywhere legislatively, but do go somewhere culturally. These bills help socialize lawmakers to an idea that may be taking root in society - as hospice was. These bills can open wider the Overton window of how we think about, talk about, and eventually legislate on the idea.

So here we are with hospice which, unlike Dr. Kübler-Ross' prediction and like British hospice, sometimes doesn't cost the patient a penny.

Which is all to say: keep the candle burning bright. The future can be a whole lot more possible than we give it credit for.

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