A Pennsylvania state appeals court has ruled that the adult son of a nursing home resident is responsible for her unpaid $93,000 bill. And the decision has some elder care lawyers wondering if this is just the beginning of a trend.

Pennsylvania is one of 30 states that have filial responsibility statutes—laws that impose a duty on adult children to care for their indigent parents. About two-thirds of those states, including Pennsylvania, allow long-term care providers to sue family members to recover unpaid costs. The rest, including states such as Massachusetts, have no recovery provisions. However, failing to care for a parent is a criminal offense. In the Bay State, the penalty is a $200 fine or up to one year in jail.

The rules vary widely from state to state.  But most take into consideration the adult child’s ability to pay. For example, a daughter would be protected if she also has extensive bills for her own child’s college education. In some states, such as Maryland, only the nursing home resident is responsible for a bill, although family members can voluntarily agree to help pay.  

And federal law prohibits states from going after families after someone is already eligible for Medicaid long-term care benefits or from including an adult child’s income and assets when determining whether a parent is eligible for Medicaid. So this is really about what happens before people they enroll in Medicaid.

The Pennsylvania case involved a woman who spent six months in a nursing facility recovering from an auto accident.  She had monthly Social Security and pension income of only $1,000, far less than the cost of her care. While she applied for Medicaid, that process can take many months and, in this case, the woman left the facility while her application was pending.

As a result, the nursing facility sued her son for her unpaid bill. He argued that she was not indigent since she had some income and that, even if she was, other family members also had an obligation to help and all the burden should not be placed on him.

The appeals court disagreed. It said that in Pennsylvania someone does not have to be destitute to be indigent. Family members are responsible even if she has income but has insufficient means to pay for her own care.  

The court also ruled that the facility could arbitrarily go after any family member it wanted, as long as it could prove that relative had the resources to pay.  For more details about the case, take a look at the Elder Law Answers Website, which brought the case to my attention.

These filial responsibility laws are not new. In fact, they can be traced back 400 years to Poor Relief laws in England.  In the U.S. many states have had them on the books for decades, but they have been rarely enforced.

That may be changing. With the costs of long-term care rising (an average nursing home stay now exceeds $200/day), and with increasingly strict Medicaid rules making it tougher for people to receive government assistance, senior services providers may find themselves stuck with more unpaid bills. These suits may generate bad publicity but may also be a facility’s only recourse.

While these laws don’t directly apply to Medicaid recipients, they may force children to pick up their parents’ long-term care costs long before mom is ever eligible for Medicaid. Such a step could still shift significant costs from states to families.

Why would House Republicans slash programs that make it possible for the frail elderly and adults with disabilities to live at home? Especially since the alternative would often be more costly nursing home care.

GOP lawmakers say they support Medicaid’s Home and Community Based programs that provide long-term services and supports in the community rather than in nursing homes. Many GOP governors are leading efforts to shift Medicaid spending to home care. Yet, the new House GOP budget would slash the very federal programs that provide the infrastructure this vulnerable poulation needs to stay at home.

The House would not directly cut Medicaid long-term care benefits themslves. But it would entirely eliminate funding for the Social Services Block Grant program, which helps fund Meals on Wheels, transportation, and other important assistance for people with chronic disease who live at home. It would also eliminate or cut other key programs for respite care, food stamps for low-income seniors, and other key services

Even with a well-functioning Medicaid home care program, it is not possible for the low-income frail elderly to live safely at home without these additional supports. Medicaid itself does not pay for these services but they are often not available without other federal support.

Without this assistance, many frail elderly will have no choice other than to move into a nursing facility–an inappropriate setting for many and a more costly option for Medicaid.

The block grant cuts are especially curious because House Republicans say they support the oncept, which provides states with far more flexibility than typical federal programs. Indeed, the House GOP likes the idea so much that it wants to turn Medicaid into a block grant.

The losers in these cuts would be the frail elderly, adults with disabilities, and their caregivers. But governors,including many Republicans, would also suffer because they’d end up footing the bill for that costly nursing home care.

This budget will never pass the Senate, at least not this year. But budgets send an important message about a political party’s priorities. And these seem pretty strange. 

I understand that House Republicans are anxious to find ways to stop scheduled cuts in defense spending that are due to take effect at the end of the year. But slashing home care services for vulnerable seniors is an especially bad way to do it.

I recently had the opportunity to participate in a panel on end-of-life care jointly sponsored the Charles E. Smith Life Communities in Rockville MD,  Suburban Hospital in Bethesda, MD,, and Sibley Hospital in Washington, D.C. The session was part of a day-long program on care transitions and highlighted the special importance of  caring for the dying.

My fellow panelists and I brought a wide range of perspectives. I represented the views of patients and their families. Rabbi Jim Michaels is a chaplain who serves residents and patients at the Charles E. Smith continuing care community; Dr. Thomas Smith is an oncologist and director of palliative care at Johns Hopkins; Steven A. Widdes is a noted elder care attorney; and Dr. Richard Alcorta is an emergency room physician, the Maryland State EMS medical director, and the man who plays a key role in implementing the state’s MOLST program.

MOLST, or Medical Orders for Life-Sustaining Treatment, is a form that allows people to make their medical wishes known to health profressionals. In some states, it is called a POLST, or physician order.

Despite our very different backgrounds and perspective, we all ended up delivering a similar message: It is essential that everyone involved with a dying patient communicate. This is important for all patients–and rarely done well. But when it comes to the highly emotional and complex issues surrounding end of life, it is especially key.

That means physicians should honestly and compassionately discuss what is happening with a patient and her family. When someone is diagnosed with a fatal disease, they must be told. 

Not long ago, doctors rarely had these conversations. That is changing, but not fast enough. There are still physicians who won’t give patients the “bad news” because they believe people will “lose hope.” In fact, many dying patients already suspect they are dying. Often, they want to talk about it. They need a doctor willing to have the discussion.

If a doctor is not comfortable talking about death, he can turn to others for help. Palliative care teams are invaluable, though attending physicians need to request their assistance much sooner than they often do. Clergy and chaplains can provide special assistance. And, often, hospice can play a big role (full disclosure: my wife is a hospice chaplain).

These discussions should also involve the family. Often relatives disagree about end-of-life issues. But when they can, the patients themselves should make the decisions. That’s one reason why advance directives such as MOLST forms are so important. They encourage families to talk.

And usually, if family members are able to air their disagreements, these disputes can be resolved. Not always, of course. But surprisingly often.  

Health and personal care in the 21st century is complicated. It often provides multiple providers–primary care doctors, specialists, nurses, physical therapists, pharmacists, and others. And it takes place in a wide range of settings–home, hospital, nursing home, and assisted living facilities. Getting those care transitions right is critically important  but all the more so when a patient is dying. 

The hospital and nursing home administrators, care mangers, nurses, doctors, and other health professionals who came to this conference cared enough to take a day out of their schedules to listen to what we had to say. I hope they take some of it to heart.

The overuse of antipsychotic drugs “is one of the most common and longstanding, but preventable practices causing serious harm to nursing home residents today,” Toby Edelman of the Center for Medicare Advocacy told the Senate Aging Committee last week.

She said these drugs are often used off-label (that is: for purposes other than the ones for which the FDA approved them) and that overuse both costs Medicare hundreds of millions of dollars and harms patients.  

Last year, an investigation by the federal Department of Health & Human Services inspector general found that 14 percent of nursing home residents were prescribed anti-psychotics but 8 in 10 were off-label, and, thus, not for treatment of mental illness.

Still, this is not a simple issue. Sometimes, aides cannot provide basic hygiene for dementia patients without the use of these meds. Patients can be too violent or agitated for an aide to change their diaper or bathe them.

Edelman said the Center is not opposed to all uses of these medications but rather wants nursing facilities to try other solutions first.  

Alternatives to drugs can be time consuming and may require special skills. For example, a patient may react poorly to a specific aide—not because the aide is not competent but because there is something about her that triggers agitation. A nursing home can figure this out and make adjustments. But it takes time and training.

Similarly, many dementia patients resist being given a shower, so bed baths may reduce agitation and be more appropriate. Yet, this too requires taking the time to understand why the patient or resident is uncomfortable and finding a better solution.  

Alternative therapies, such as music and other non-pharmacologic solutions,  may also work, although we need more evidence-based research to know for sure.

Dr. Jonathan Evans, the incoming president of the American Medical Directors Assn., urges that caregivers learn ways to better understand why a patient’s behavior changes and to address the causes.  But, for too many facilities, it is easier to give a patient a pill.

This fall, the Consumer Consortium for Advancing Person Centered Care and the UCLA Luskin School of Public Affiairs, with the support of the U.S. Senate Committee on Aging, will hold a forum on non-drug interventions for people with dementia. The goal will be to develop consensus best practices for the use of non-drug alternatives.  (Full disclosure: I serve as an unpaid member of the leadership council of the consortium’s parent organization).

This initiative follows an Aging Committee hearing last fall on the issue.  The use of anti-psychotics is an important and complex issue. This is an opportunity for medical professionals, nursing facilities, researchers, and consumers to work together to find cutting-edge ways to care for dementia patients in the safest and most effective ways possible.

Senator Bob Corker (R-Tenn) warned today that long-term care financing is “a major train wreck” and “heading for a national crisis.” Corker, the senior Republican on the Senate Aging Committee, said he was very worried about the viability of private long-term care insurance and added , “there is no doubt there is a public sector role” in the future of financing long-term care supports and services.

At a time when the issue has fallen victim to partisan demagoguery (Exhibit A: the CLASS Act)  Corker’s remarks, at a Senate Aging Committee hearing on long-term care,  suggested an opening to build a consensus on future financing and delivery reforms. 

Interestingly, Corker was speaking on the same day a House committee proposed completely eliminating the federal  Social Service block grant program which, among other things, funds Meals on Wheels and other critical programs for the frail elderly living at home.

Corker was not the only participant in today’s hearing who was worried about private long-term care insurance.  John O’Brien, Director of Healthcare and Insurance at the federal Office of Personnel Management, proudly told the panel that enrollment in the federal LTC insurance program rose 20 percent this year, to about 270,000 employees. But he also expressed concern that only one carrier bid for the federal contract in 2011 and that so many insurers have left the business.

Senators are eligible to enroll in O’Brien’s program but both Corker and Democrat Mark Udall admitted they had not. Udall, like so many consumers, said he keeps putting it off. Corker flatly said he “may not” buy.

Still, former Congresional Budget Office director Doug Holtz-Eakin said that private insurance needs to be part of the solution. He suggested finding ways to encourage businesses to include coverage in their benefit packages, adding new tax subsidies, and perhaps making enrollment automatic (which was also an element of the CLASS Act).

Witnesses at today’s hearing shared a wide range of views about how to improve care delivery. My Urban Institute colleague Judy Feder presented research showing that patients with both chronic disease and personal care needs account for an outsized share of Medicare spending. Much of those costs–and average of $16,000 per year for those enrollees–were for hospital and post-hospitalization care at home or in nursing facilities.

The key to both better outcomes and cost savings, Judy argued, is to improve care coordination and primary care and reduce hospitalizations. She suggested those who receive both Medicare and Medicaid benefits (the dual eligibles), might be better off if all their care was provided by Medicare.

But  Loren Colman, Assistant Commissioner of the Minnesota Department of Human Service, argued that states, though Medicaid, ought to be given more flexibility to design care for this population. He argued, as I and others have, that the default option for Medicaid long-term care ought to be home care and not nursing facility care, as it is today.

States, he said, should not have to apply for complicated waivers to provide community care.

Bruce Chernof, President and CEO of the SCAN Foundation in Long Beach, CA, agreed. A goal, he said, should be to free the frail elderly from the “tyranny of bricks and mortar.”  But, he said, home and community programs need to be well-organized, cost-effective, and accountable to care recipients and their families.

While there was little consensus at today’s hearing, the discussion was productive and pointed the way towards what could be some creative solutions for both delivery and financing of long-term care services.

Why not make insurance for long-term care services and supports part of health care coverage?

It is a radical idea that turns the current model—which often treats long-term care insurance as an element of retirement planning—entirely on its head. 

The concept isn’t new. John Rother, who ran public policy for AARP for many years, talked about integrating long-term services and chronic care long ago. And real people with chronic disease see no difference between medical and personal care. But nobody could ever figure out how to make the insurance work.

Here’s the problem: As long as most medical insurance was based on a fee-for-service model, there was little incentive for carriers to provide benefits for personal care. Why would they add a costly extra benefit if it didn’t improve the bottom line?

But the rise of Medicare Advantage managed care plans, Medicaid managed care, and the growth of integrated health systems such as Kaiser Permanente may be changing that. In fact, a few states are effectively trying this experiment by expanding Medicaid managed care to seniors. The PACE progam is built on the same idea.

In all these managed care models, which are explicitly encouraged by the 2010 health reform law, insurers are at financial risk if their cost of care is too high. And they have the opportunity to make more money if they can provide quality care at lower cost.

A key goal is to keep people with chronic disease out of the hospital. And one cost-effective way to do that is to get elderly patients with chronic disease good quality personal assistance.

Here’s a simple example:  Medicare spends nearly 40 percent of its budget on patients with congestive heart failure (many of whom suffer from other diseases as well). And the average cost of hospitalizing a patient with severe heart failure is about $24,000-a-year.

We can keep heart failure patients stable and out of the hospital by making sure they watch their diet and properly take their medications, and by weighing them regularly (weight gain is a key indicator that CHF is out of control).

Now, imagine a system where, as part of Medicare Advantage insurance, a senior receives basic long-term care benefits that may include an aide who weighs them, cooks healthy meals, and helps administer meds.

Keeping a patient at home is a potential win/win. She is healthier and the insurer saves money.  While such a system might only provide basic coverage for personal care, consumers could supplement coverage much as they buy Medigap health insurance today.

I don’t know what such coverage would cost or what the benefits would be. But, as a reality check, I asked a senior executive at a large health insurer what he thought. His response: “The concept seems to make sense.”  

We have to try something new. Given its increasingly constrained resources and complex rules, traditional Medicaid–which finances more than 40 percent of all paid long-term care–isn’t the answer.

Similarly, private long-term care insurance, sold almost exclusively through life insurance companies, has been a dismal failure. The few who do buy tend to be the wealthy who are looking to preserve assets for their heirs.

But I’m not worried about them. A solution to the problem of financing long-term care should be about middle-class people who need resources to pay for quality assistance in frail old age or in the event they become disabled as younger adults. And for them, personal assistance, whether at home or in a nursing facility, is an integral part of their health care. Why not insure it that way?

Increasingly, surgeons are beginning to change the way they perform operations on elderly patients. They are coming to realize that almost everything is different about surgery on older people:  The patient’s goals, the likelihood of complications, and the entire process of treatment from pre-op through surgery itself to recovery.

As a result, doctors are learning that they not only need to adjust the way they perform surgery, but the health system needs to do all it can to be sure older patients are as healthy as possible before these procedures. Surgeons are also coming to understanding that while some procedures are absolutely appropriate for even very elderly patients, others are not.  

In one recent article, (behind a firewall) Johns Hopkins University professor Michael Zenilman said surgeons should not just aim for minimal complications and survival. Elderly patients, he wrote, may be more concerned with preserving their quality of life. Yes, even more than survival itself.  (Full disclosure: As regional director of surgery for Johns Hopkins Medicine, Zenilman manages surgeons at Suburban Hospital in Bethesda, MD, where I am a member of the board).

Over the past twenty years, surgeons have come to recognize that older patients are different than younger adults. But for much of that time, they misunderstood why. And they have been slow to adjust their practices to reflect those distinctions. Now, finally, that is beginning to change.

For many years, doctors thought the biggest difference between older patients and younger adults was simply that they were older. And as patients aged, their organs were less able to tolerate the shock of surgery. Like many simple explanations, it was wrong—or at least incomplete.

Zenilman, a practicing surgeon and author of a textbook on geriatric surgery, says key predictors of unsuccessful procudures are not age itself but factors such as a patient’s overall frailty and whether they suffer from dementia. And, importantly, outcomes also can be worse for those suffering from delirium (temporary confusion often caused by hospitalization), the effects of multiple medications, or cardiac and respiratory disease.  

In short, not every 90-year old is alike. Some will tolerate surgery well and others won’t.  New ways to measure frailty can help both doctors and patients recognize who is a good candidate for surgery.

And not every surgery is alike. It turns out, for example, that older patients do just as well with surgery for early stage pancreatic cancer as younger patients, according to Johns Hopkins research.

This means that surgeons need to learn how to carefully identify who is likely to have a good outcome and work with families, patients, and other medical practitioners to address those risk factors they can control.

For example, before surgery, doctors must make sure their patients are in the best possible physical condition. During surgery, they need to know the best techniques for operating on older patients. And after surgery, doctors should be aware of potential risks for delirium and bedsores.

Most important, families and physicians need to be clear about what a patient really wants from her treatment. Is her goal to maximize her lifespan, even if it means limiting her quality of life? Or is it maintaining independence and dignity, which may suggest less aggressive alternatives?

What Zenilman and other surgeons are learning is that knowing the answers to these questions is at least as important as their skill with a scalpel.

The fate of many important health reforms aimed directly at seniors is in the hands of the Supreme Court. 

While the public has focused most of its attention on whether the High Court will strike down the individual mandate in the 2010 health reform law, the justices today are hearing arguments about another critical issue: What should happen to the rest of the Affordable Care Act (ACA)  if they do conclude the mandate is unconstitutional?

Many of those other provisions would directly affect both health care and long-term care services for seniors and younger adults with disabilities. In what is a complex and far-reaching law, most would make it easier for them to receive that care, while others may make it more difficult. But if opponents of the law get their way, it all will disappear.

Here are some of the provisions at risk:

Medicaid: The law is filled with important changes to this state/federal program that currently funds nearly half of all paid long-term care services. On one hand, the ACA would greatly expand Medicaid’s health coverage for millions of currently uninsured working  people. While the federal government promises to pay nearly all of the costs of that expansion for the next decade, states fear they’d eventually get the bill. If they do, Medicaid benefits for long-term care services–already facing major cuts–would be at even greater risk. 

Home and Community-based Care: At the same time, the ACA includes important new incentives for states to expand Medicaid long-term care services for people living at home. Today, nursing homes still get the lion’s share of Medicaid long-term care dollars. Yet seniors and adults with disabilities overwhelmingly want to receive assistance at home. The ACA includes a number of new programs to expand those home and community-based programs, but all would die with the law.  

Medicare: The ACA slowly closes the “donut hole” for seniors who participate in the Part D drug benefit. That extra assistance would go away. It also includes a small increase in the payroll tax that is aimed at increasing revenues for Medicare, which is under great financial pressure.  

Integrated Care: In the long-run, perhaps the most important provisions for seniors are a far-reaching package of experiments aimed at improving the way care is delivered to people suffering from chronic disease, as nearly all seniors do. 

For example, the law created a new office to coordinate the health and long-term care of people who receive both Medicare and Medicaid. These “dual eligibles” are often the poorest and sickest seniors. It also includes important incentives to encourage hospitals, nursing homes, doctors, and other providers to work together to improve care for people with chronic disease. These demonstration programs would also disappear. 

The CLASS Act: Of course, CLASS has already been abandoned by the Obama Administration, but it does remain on the books. If the entire law is overturned, CLASS would bite the dust as well.

Most of these programs (except for the Medicaid expansion) have nothing at all to do with the controversial insurance reforms in the ACA. But if the Court strikes down the entire law, all of these provisions would die. And don’t think Congress would be in any hurry to rewrite the law. Given the ugly partisan fight over the health reform, it may be years before lawmakers will be ready to tackle these issues again. And in many respects that would leave senior health much worse off than they it is now.

 The fiscal plan proposed this week by House Budget Committee Chairman Paul Ryan (R-WI) would profoundly change the way seniors and younger adults with disabilities receive health care and personal assistance.  

For many programs, it would reduce funding from today’s levels even though the population of those over 65 will double by mid-century. In many ways, it would end the Great Society’s vision of a federal safety net for these vulnerable populations and place the burden of their care on states or their families.

This budget will pass the House sometime in the next few weeks. And make no mistake, though it has no chance of becoming law, this plan will be a touchstone in what will be a game-changing debate over federal deficits and the role of government. 

The House Republican budget would do the following:

Medicare: It would replace traditional Medicare with subsidies that seniors would use to buy insurance on the individual market.  It would raise the age of eligibility from 65 to 67. The Congressional Budget Office estimates that the federal government would spend about one-third less on Medicare by mid-century than it would under current federal policies.  That means health spending would become remarkably efficient or seniors themselves would pay more.

The Affordable Care Act: It would repeal the 2010 health law, including its important initiatives aimed at better integrating care for seniors and others with chronic disease.

Medicaid: Instead of automatic federal funding for a share of this program, states would receive only an annual grant, which Congress could adjust at will. In return, states would have the flexibility to operate Medicaid as they choose. CBO projects that by mid-century federal funding for Medicaid would be only half what it is today as a share of the economy, and less than one-quarter of what it would be under today’s policies. The budget would cut planned Medicaid funding by $800 billion over 10 years

The Ryan budget does not mention, or appear to recognize, the important role Medicaid plays in financing long-term care supports for the frail elderly and younger people with disabilities, even though it pays more than 40 percent of these costs and these services represent a third of its budget.

Non-Medicaid services: These critical supports for those receiving care at home, such as transportation, nutrition, and counseling, as well as caregiver assistance—already under severe budget pressure– would take the biggest hit. While the budget outline does not make specific program cuts, it would likely mean federal funding for most of these programs would be entirely eliminated.  Some programs would be turned over to the states. Others would disappear.  

 If the Republicans win the coming election, the House budget will frame the way they will govern. Not all of it would become law, even under a President Romney or President Santorum, but a lot would.

Even if President Obama is re-elected, services for seniors and the disabled will likely face deep cuts. In last August’s budget debate and in the fiscal plan he proposed in February, Obama showed that he too was willing to sharply slow the growth of programs such as Medicare, Medicaid, and non-Medicaid services.

He’d preserve these programs in their current form, but he’d fund them at much lower levels than under current government policy.  

The other day, an advocate laughingly dismissed the idea that programs for seniors and others with disabilities will face such dramatic cuts. That attitude is naïve and dangerous. The parameters for the coming budget debate are clear: Substantial cuts in services under an Obama White House or an historic  remake of the safety net and even deeper cuts under Republican government.

Either way, seniors, service providers, and their advocates need to prepare for a much different world.

Since last year’s demise of the CLASS Act, those of us worried about how the U.S. will finance the long-term care needs of the frail elderly and younger adults with disabilities have been looking for an opportunity to reopen the issue. Today, in a small first step in that direction, about two dozen state and federal officials, advocates, insurance company executives, and researchers met privately for almost six hours to exchange ideas.

The group wants to keep a low profile and asked me not to identify any of the participants. And they are very far apart on important questions. But they agreed on some key issues: The nation is poorly prepared to face the high cost of long-term care and the current system (built on Medicaid, out of pocket payments, and a handful of consumers who own private long-term care insurance) is not sustainable.

With the help of research by retirement consultant Anna Rappaport, the group focused on the needs of three groups of people 55 and older–those with low incomes and few assets, those with high incomes and high net worth, and those in the middle.

Participants generally agreed that low income seniors (those with income of roughly $25,000 or less) would inevitably require government assistance, whether through Medicaid as they do today, a new version of Medicare, or some other form of heavily subsidized insurance.

They also agreed that those between ages 55 and 64 with net worth in excess of about $1.3 million can manage pretty well in today’s system. Many already own private long-term care insurance and others have enough savings, home equity, or other resources to self-insure.

The big challenge is what to do about those in the middle. Is expanded Medicare the answer for them? Or is it  a program that somehow combines private and public insurance?

And if we do try again to adopt a national long-term care insurance system, should it be mandatory or voluntary? Should those with high incomes and high assets participate? And if we do try to combine both public and private insurance, should the federal government cover, say, the first year or two of care or should it provide only catastrophic benefits (say, all costs after that first year).

The group agreed on a half dozen benchmarks that could be used to measure any new insurance program. It should be financially viable, affordable, cover as many people as possible, include appropriate incentives for consumers to spend wisely, and provide choice. In the real world, no plan is likely to meet all of these standards and some will conflict with each other.   

The meeting concluded with many more questions than answers. But a group of smart people was able to sit down, talk candidly, recognize where they disagree. That is, I hope, a first step toward solving the difficult challenge of financing long-term care services.