May 2009 Archives

USA Today published my op-ed column today on the need to include long-term care services and supports in health reform.  

It is nice to see that USA Today is so interested in this all important subject. All of us who are caring for our parents know why Congress should not miss this opportunity to address the needs of those receiving care as well as their families. I hope the op-ed will help generate interest among those who are not (yet) caregivers. 

If you are impoverished and unable to care for yourself, Medicaid is required by law to provide long-term services--in a nursing home. Although the frail elderly and younger people with disabilities overwhelmingly prefer to stay at home, states are under no obligation to offer care in the community.

So here is an idea: Why doesn't Medicaid make home care the default option for assistance? The joint state/federal program would still pay for care in nursing facilities when this assistance is appropriate, but the first option would be help at home. This idea is included in a bill called the Community Choice Act, introduced by Senator Tom Harkin (D-IA) and Representative Danny Davis (D-Il).   

Most state Medicaid programs do provide some limited home care, under a complex set of Medicaid "waiver" rules. But benefits vary widely among the states, and in many jurisidictions, seniors must wait years before a home care slot becomes available for them.

Recently, Medicaid has slowly expanded its home care benefit, but progress has been very slow. According to a recent study by AARP, three-quarters of Medicaid long-term care spending for older people and younger adults with disabilities still goes to nursing facilities. In 2007, only five states spent more than half of their Medicaid long-term care dollars on home care. Nine states spent less than 10 percent .

Amazingly, Medicaid home care is expanding at this glacial pace even though it has been more than a decade since the U.S. Supreme Court ordered states to provide community assistance to all who need it.

So why have states been so slow to embrace the home care option? Mostly because they worry it will be too popular. Many state officials are driven by the fear of what is known as "the woodwork effect." The idea: If you make Medicaid benefits too attractive, more families will apply for them and state costs will explode.

Remember, today most of us are caring for our parents and other relatives with disabilities  without any government help. And states like it that way. As long as the choice is between helping mom at home without any support or putting her in a nursing home, many families will make huge sacrifices to keep her at home. And when it comes to Medicaid-eligible families, that choice can save government a lot of money.

To be sure, many people with disabilities require institutional care. They may not have the family support they need to stay at home, or the nature of their illness may mean a skilled nursing facility is the best setting for them. And they should have access to an institutional benefit. But for most of the frail elderly and disabled, home care is the best option. Government should do its part to make it work.            

Senate Health Committee Chair Ted Kennedy (D-MA) will include a major restructuring of long-term care services in his version of health reform, due out in late May. But getting those changes through Congress "is like pushing a rock uphill," says Connie Garner, Kennedy's top staffer on aging and disabilities issues. 

Garner spoke yesterday at a terrific conference sponsored by Health Affairs and the Scan Foundation. Lots of new research and new ideas on how to better deliver care. But Garner's candid assessment of the prospects for long-term care reform was a highlight of the day-long program.

She said that Kennedy was deeply commited to including reforms of both financing and delivery of long-term services in an omnibus health bill. Financing reforms will be based on Kennedy's CLASS Act, a plan to provide universal government long-term care insurance. The coverage of up to $100-a-day for life would be funded through a payroll deduction. People would be automatically enrolled, but could opt-out if they chose.

So far, the Obama Administration has been unwilling to support such a plan. In addition, Senate Finance Committee Chairman Max Baucus (D-MT) has been reluctant to include long-term care in his health reform plan. Later this summer, the Baucus and Kennedy bills will have to be stitched together. Later, the House will write its own version.

Prospects for reform are even dicier because advocacy groups and providers disagree among themselves on the details. While there is widespread agreement that some form of public insurance should be included, there is no consensus on what it should look like. Some in the for-profit nursing home business, for example, favor delaying long-term reform until after health care is enacted. Non-profits, by contrast, are pushing hard to include reform now. 

For those of us focused on caring for our parents, it is going to be an interesting few months.   

In the debate over health reform, there has been an increasingly emotional argument over whether controlling medical cost growth will require rationing of care. The answer is: Of course it will. We ration care today, but do it in a profoundly irrational way. Reformers hope that health reform will allow us to do it in a more sensible manner, based on medical evidence. For instance, perhaps we'll treat back pain with physical therapy more frequently instead of surgery--a choice that may provide similar outcomes at far less cost.     

However, when it comes to the frail elderly, I met a woman who put the issue of rationing health care in powerful perspective. As part of my research for my new book, Caring for Our Parents, I spent some time visiting a hospital ICU. During one visit, on morning rounds, I met "Mrs. Williams" and the doctors and nurses who cared for her.

This is her story: Mrs. Williams, who was in her mid-90s, had been admitted to the emergency room the night before with severe shortness of breath. A resident of a local nursing home, she was very ill. Although her mind was sharp, she had Stage IV lung cancer and congestive heart failure. Mrs. Williams had no family, but did have a living will.

After Mrs. Williams' breathing was stabilized, an ICU doctor, the unit's nurse manager, and a social worker met with her. They told her (in a much kinder way than I am recounting here) that her breathing problems would only get worse. They said she had two options: They could hook her up to a ventilator that would help her breathe. She might live another month or two, but would remain on the machine for the rest of her life and be unable to speak or eat. Alternatively, they could keep her comfortable but not take extraordinary measures. In that case, she would probably die within a day or two.

She chose the ventilator, and did live a few more months. She spent much of that time in the ICU, because no local nursing home had an available "vent" bed. She was eventually transferred to a skilled nursing facility, but was readmitted to the hospital two more times before she died. 

The ventilator prolonged her life, but her quality of life was extremely poor by almost any standard. I don't know what it all cost, but my guess is well in excess of $50,000. 

Very sick patients such as "Mrs. Williams" account for as much as 80 percent of Medicare spending. We could save a lot of money by allowing patients like her to die quietly and comfortably.

But who is going to make that call? Sometimes we make these decisions ourselves, perhaps with the help of loved ones or clergy. But imagine the uproar if Medicare determined it would no longer pay for vent care of a terminal patient. Or if a private insurance company refused. It is one thing to talk about rationing in the abstract. But when it gets down to it, these are hard, painful choices.

If we are going to get costs under control, we are going to have to confront these issues. If not, we will have no choice but to continue to raise taxes and insurance premiums to pay for this kind of high-tech end-of-life care.

Which is it going to be?