The importance of hospice care during the pandemic cannot be ignored. COVID-19 has claimed the lives of over 210,000 Americans. 80% of these deaths were people aged 65 and older. They didn’t die quickly. Many had hospice care before dying.
Margaret Heckler, former Secretary of Health and Human Services, made groundbreaking efforts to assure that all Medicare eligible Americans would have hospice care through Medicare. It was no small feat, especially since she needed to convince President Reagan’s administration to approve this addition to the Medicare program at a time when their efforts were focused on slowing the growth of Medicare payments. The Reagan administration and Secretary Heckler were going in opposite directions — she was rowing upstream when the administration was rowing downstream.
Up until the early 1980’s, the terminally ill in American were dying in hospitals. Under the old Medicare payment system, hospitals had little incentive to send people home, because longer hospital stays usually resulted in larger payments. Medicare paid the full hospital bill. In 1983, in order to cut the budget, the Reagan administration implemented a new system which paid hospitals flat payments to treat patients, based on their diagnoses. Under this system, hospitals would send patients home sooner because longer hospital stays did not increase payments. By making this adjustment, they were able to cut costs dramatically, but patients who were terminally ill were no longer able to remain in the hospitals for an extended stay until they died.
Secretary Heckler was shocked and appalled to find out that terminally ill Americans would now be sent home to die and their loved ones would be required to carry the burden alone with no help from the government. She stressed, “We cannot have people required to go home from the hospital early, having them die alone at home. We have to display some kind of compassion. … We owe Americans the ability to die with care and dignity.”
Hospice, which started in Great Britain in 1967, was just becoming known in a few scattered places around the country. There was no hospice program affiliated with
Medicare. It didn’t exist. No one in the Reagan administration wanted to add hospice
care as a Medicare benefit, except Secretary Heckler.
Up until that point, Medicare had paid primarily for hospital stays and physician care. Adding any type of major enhancement to the Medicare program had seldom been done since it was established in 1965 by Lyndon Johnson. The change that Secretary Heckler was proposing would affect millions of Americans and cost billions of dollars.
As a former Republican Congresswoman and now as Secretary of HHS, Margaret Heckler understood the importance of getting support from the House and Senate. She was working closely with key congressional sponsors on the 1962 hospice legislation. In addition, one of Secretary Heckler’s stratagems was to amass the most compassionate group of people who she knew to help in her efforts. She reached out to the nuns in her parish, and enlisted them to go to Congress to help lobby for the new hospice program.
Showing up in their full habits, a half dozen nuns first arrived at Tip O’Neill’s
Congressional office. Surely, an Irish Catholic of his stature, as Speaker of the House,
would be a good place for the nuns to start. From there, the nuns visited office after office of many members of Congress until the idea of having hospice care offered as a Medicare benefit for the terminally ill was further understood.
Something else that needed to be done was convincing the Office of Management and Budget (OMB). Secretary Heckler had one of her senior advisors continue to press the issue within the administration. It was a hard fight. The answer was always “no”, rejecting the Secretary’s request for billions of dollars to be spent on Medicare to pay for hospice care, but Margaret Heckler wouldn’t take no for an answer. According to this advisor, Secretary Heckler could be compared to a Joe Palooka doll: “You knocked her down and she popped right back up.”
With congressional backing, Secretary Heckler was successful in creating the hospice care benefit and had it established as an expansion of the Medicare program. To get a big change in that program was a monumental achievement. Hospice care has been in place as a benefit in the American system for 34 years serving countless families and Medicare beneficiaries in their time of need. Following the lead of the Medicare program, many private insurance programs have also adopted the hospice care benefit.
As a result, there is no area of the country where this benefit is not available. In any town or city today, hospice care is there. It is widespread. It has worked miracles for families and for people who are dying. Anyone who is a Medicare-eligible beneficiary can receive the benefit. In 2018, over 1.5 million Medicare beneficiaries received hospice care.
Without this benefit, many people would die alone and in tremendous pain with much suffering. Even families that want to offer comfort are not able to supply appropriate care and medicines. They can't write a prescription and are not trained in medicine, not to mention that they are devastated themselves. Hospice care not only eases the suffering of the dying, but it eases the burden on the family.
The hospice care benefit was not the only area of unchartered waters that Margaret Heckler championed to ease pain and suffering, as indicated in the Washington Post article of July 14, 2020. “Decades of research on an HIV vaccine boosts the bid for one against coronavirus” discussed how Secretary Heckler laid the foundation for finding a vaccine for AIDS and we are using that research to fight the coronavirus pandemic today.
October 10 is National Hospice Day.
Jacquelyn White is a former Senior Executive Department of Health & Human Services.
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