I am a huge fan of efforts to increase awareness of palliative care among physicians, health systems, patients and their families. And I wanted to pass on information about three major efforts to do that.

The first is a landmark study by the prestigious Institute of Medicine on the importance of managing pain. The report, Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education and Research, calls for a fundamental change in the way pain is viewed and treated.  It finds that 116 million Americans deal with chronic pain. It calls for major changes in the way pain is assessed and treated, and for a broad new strategy for preventing, treating, and managing pain.

The report also describes the major barriers to good pain management in the current health system. Among its specific recommendations: Creation of a pain institute at the National Institutes of Health (NIH).

IOM studies get relatively little public attention but are extremely influential in the health care community. I expect that Relieving Pain in America will be an important step in the nation’s effort to improve the way it treats pain.

While pain is a widespread issue, it can be especially challenging for patients with advanced disease. And a new project, the Coalition to Transform Advanced Care aims to improve the quality of care for that population. The group was created by Bill Novelli, the former CEO at AARP and founder of marketing firm Porter-Novelli.  Novelli describes the aim of this care model this way: “New clinical models of care for advanced illness provide patients and their families with a customized mix of the treatments they need and the comfort measures they want. When we provide a new kind of care that anticipates problems, avoids crises, and prevents hospitalization, everybody benefits.”

The coalition has been around for about a year, but has operated largely under the radar. But keep an eye on its important work.

Finally, Dr. Joanne Lynn, one of the most influential voices in end-of-life care, has just published a revised version of Handbook for Mortals: Guidance for People Facing Serious Illness. The book, orginally published in 1999, provides practical advice to patients facing terminal illnesses and their caregivers. Among its topics: pain and symptom management, and advance care planning. Joanne is currently the director of the Altarum Institute’s Center for Elder Care and Advanced Illness. Joanne’s coauthor is Dr. Joan Harrold, medical director of the Hospice of Lancaster.

The good news is that pain and symptom management, for both the dying and the chronically ill, is getting increased attention. With this higher profile, I hope that patients and their families will increasing demand this care, and that health and long-term care providers will be better skilled at delivering it.

There may be no more controversial issue for both Baby Boomers and their parents than Social Security. After AARP officials said last week the organization would be open to discussing changes in the system, I wrote the following for my TaxVox blog:

Social Security has two obvious problems. While the system is not “broke,” as some insist, it will have only enough money to provide future retirees with about three-quarters of their promised benefits.  At the same time, it is poorly designed for the needs of a country where life expectancy and the nature of work and family have changed dramatically since Social Security was created in 1935.

As a result, those who most need social insurance—single women, low-wage workers, the disabled, and the very old—get much less than they need. On the other hand, those who need benefits least get the most.

If Washington policymakers could hold the twin goals of solvency and modernization in their heads at the same time, they could take a few relatively modest steps needed to reform Social Security—and enhance a key pillar of the social safety net for the most vulnerable elderly.

The trick will be to get past the dissonant squabbling that passes for debate these days. Conservatives need to recognize that Social Security will remain a defined benefit program for the foreseeable future.  Liberals must overcome their fear that any change at all is the death knell for social insurance.

While Social Security played a key part in reducing poverty rates among the elderly from more than one-third to less than 10 percent over the past half-century, the system is increasingly leaving some seniors behind. Just a few examples: Divorced and never-married women are three times more likely to be poor in old age than married women, and more than one-third of retired workers and widows get benefits that fall below the poverty level.

In this environment, AARP deserves tremendous credit for declaring its willingness last week to sit down and work out a Social Security deal. By doing so, it recognizes two essential realities:  the seven decade old Social Security system needs to change, and it will.

But how can lawmakers and advocacy groups build a consensus with the dual aims of securing long-term solvency and modernizing the system? I think they can by agreeing to a six common-sense principles:

1. Create a respectable minimum benefit for low-income workers, increase some widows’ benefits, and create an additional benefit for the very old (say, 85 or older).
2. Raise the retirement age, including the minimum benefit age of 62. An extra year of work would solve about one-third of the program’s funding problems. More and more of us can work into our 70s and a modern Social Security system should reflect that.  It makes no sense for government to signal that we should stop working at 62 when we are likely to live for two more decades.
3. Protect those who work physicially demanding jobs. While the percentage of older Americans who do manual labor is shrinking, those who do this work need to be protected. Long overdue reforms in Social Security’s badly broken disability system would help.
4. Increase contributions and reduce benefits for high-earners. Everybody would still get some benefit—Social Security is not welfare and must retain its status as social insurance. But there is no reason why it can’t be made more progressive.
5. Preserve the defined benefit nature of Social Security. Adding an additional savings component is a good idea. But the public is not interested in taking on additional risk with their retirement.
6. Be absolutely transparent about benefits and structural changes. Whatever Congress does, there should be no surprises. As it is, many young people have no confidence in Social Security. Reforms should restore their faith in this key piece of the old-age safety net. But government should also be clear that in the future Social Security will only supplement—and not replace– other retirement savings for middle- and upper-income retirees.

By following these principles, Congress and President Obama could fix Social Security in a way that makes it both solvent and relevant to a 21^st century world.

 Last evening, I had the opportunity to speak to WISER (Women’s Institute for a Secure Retirement), a Washington, D.C.- based group dedicated to improving the financial security of women. My topic: caregiving, and the effects it has on Baby Boomer women. 

I told the group about a couple of women I met when I wrote my book, Caring for Our Parents. They were both loving daughters, wives, and mothers. They would not have done anything differently. Yet they paid a high price for their commitment to their parents. 

Cheryl Fears lives in Springdale, AR, in the beautiful foothills of the Ozark Mountains, Her parents lived just a few miles away but Katy suffered from dementia and Charles, who was losing his eyesight to macular degeneration, could no longer care for her. So they sold their house, used the money to build an addition to Cheryl’s home, and moved in with their daughter, her husband, and their four boys. 

Cheryl had been running her own antique business. But caring for Katy and Charles became overwhelming, even with the help of a part-time aide. So she sold the business and became a nearly full-time caregiver.  One day, Cheryl told me, “You pretty much have to give up your life if you are doing this.” 

Cheryl is one of 40-50 million family caregivers of people 50 and older, and they are the bedrock of the support system for both the frail elderly and the disabled. While we spend about $200 billion a year on paid services, the economic value of family caregiving was close to twice that in 2006, according to AARP. 

About 60 percent of family caregivers are women—mostly wives or adult daughters. A typical caregiver is about 50 yrs old, often providing care for about 20 hours a week, usually without paid assistance. Her care can be anything from giving mom a bath to taking her to her doctor’s appointment.   

Like Cheryl, caregivers pay a tremendous financial price. For example, a caregiver pays about $5,000 a year out of pocket to help out a parent. Long-distance caregivers spend an average of $8,000. 

Two-thirds say they reduce hours at work, take leaves, or just come in late and go home  early. Some, such as Cheryl, quit work entirely. For some good research on caregivers, take a look at ther National Alliance for Caregiving’s caregiver surveys.

Not only does that reduce their current standard of living, it also jeopardizes their own retirement. It means they have less to put away in savings and fewer Social Security benefits. Over their lifetime, caregivers give up hundreds of thousands of dollars in potential income. 

But the price is not just financial. It is also emotional. 

Judy and Steve Dow live near Burlington, VT. They were caring for her parents, his mom, trying to raise two kids and holding down two full-time jobs. Steve was a contractor. Judy was a schoolteacher. 

Judy was the primary caregiver for all three frail parents, especially for Steve’s mom, who had rapidly progressing dementia. It is not easy to make it to class in the morning just as you learn your mother-in-law’s home health aide is not going to make it that day. Judy, who called herself “the tour director,” was overwhelmed.  

One day she just broke down. In tears, she told Steve, “I just can’t do this anymore” and reluctantly, they moved Steve’s mom into a care facility. 

That story is typical. About half of family caregivers report depression, and it turns out that high levels of caregiver stress often predict that the person getting care will move into a nursing facility. 

These 40-50 million caregivers are real people. And they need real help. But the system they rely on for support is failing them. Even as Congress talks about the importance of caregiver support, it does little. Indeed, these days, most of the talk on Capitol Hill focuses on how to cut elder care programs. Something is very wrong with this picture.

On Thursday, I’ll be participating in an Urban Institute  panel on the future of the Community Living Assistance Services and Supports (CLASS) Act, the new national voluntary long-term care insurance program in the 2010 health reform law.  It should be an interesting discussion, with other participants including Marty Ford,  cochair of the Long Term Services and Supports Task Force, Consortium for Citizens with Disabilities; Rhonda Richards of AARP; Al Schmitz of actuaries Milliman, Inc; and my Urban colleagues Rich Johnson and Brenda Spillman. If you’d like to listen in, either in-person on on the Web, register here.

The more pressing question, however, is whether CLASS will live long enough to be fixed. As regular readers of the Caring for Our Parents blog know, I’v been arguing for more than a year that while CLASS is poorly designed, it is an important step toward an insurance-based system of financing long-term care and away from relying on an increasingly troubled Medicaid system.  Today, Medicaid spends more than $110 billion on long-term care, and finances nearly half of all such assistance. Most analysts agree, but many on Capitol Hill have no interest in repairing CLASS. They simply want to kill it.

In a series of congressional hearings over the past month, Republicans and some Democrats have been building a record to justify repealing CLASS. Last week, at a hearing of a House Energy and Commerce subcommittee, one GOP member, Representative Phil Gingrey of Georgia, called CLASS ”a Bernie Madoff Ponzi scheme run by the Secretary of Health and Human Services. The hearing barely ended before Gingrey introduced a bill to repeal the program.

If Hill critics can’t kill CLASS outright, they will try to block the $120 million in funding the Obama Administration has requested to get the program off the ground. While outright repeal may not pass, I wouldn’t be surprised to see some funding choked off.

Killing CLASS is counterproductive, since without it the frail elderly, adults with disabilities, and their families will be left with only their own insufficient resources and an increasingly underfunded Medicaid program to finance their long-term care supports and services, whether in their homes or in nursing facilities.  A handful, only about 7 million, have private long-term care insurance.

CLASS needs to be reformed, and we’ll discuss how at this week’s Urban Institute panel. Killing it will do no one any good.

Home equity can be a valuable tool for cash-strapped seniors who need to fund their long-term care needs. But one method, reverse mortgages, is running into a raft of new problems, including higher interest costs and a lawsuit by AARP that promises to be a public relations nightmare for the industry.  

Unlike traditional mortgage loans, RMs are a way for those 62 and older to borrow against the equity in their homes without having to make monthly payments. Borrowers owe no interest until they die or move out of their homes–when both interest and the loan amount are due in full. This gives elders an important source of cash to pay for their care needs, such as home health aides, home renovations, transportation, and other personal services. The federal government estimates about a half-million people currently have reverse mortgages.

But in the past couple of years, this product has run into serious trouble. In 2010, troubled housing giant Fannie Mae, which had been purchasing nearly all of these loans, stopped buying them. At the same time, new government rules reduced loan limits, raised fees for some loans, and increased interest rates for others—all in an effort to reduce risk while the government was struggling to manage the broader housing crisis. In addition, the main source of funding after Fannie Mae pulled out—a government agency called GinnieMae—required most borrowers to take the full amount of their loan up-front. This increased interest costs for many seniors who, under the old program, could borrow only what they needed each month.

As a result, in 2010 the number of new RMs plunged to below 80,000, far below the 115,000 in 2009.

Another problem that has cropped up in recent years: As many as 30,000 borrowers, or 6 percent, are in danger of foreclosure. It is not because they are behind on their mortgage (not a problem since they don’t have to make interest payments), but because they have failed to pay property taxes or homeowners insurance. 

On top of all that, AARP has sued the federal Department of Housing and Urban Development, alleging that government rules allow lenders to foreclose on some unsuspecting widows or widowers. While it is not clear how common this practice is, the public relations cost to the industry may be enormous.

Here is the problem: Borrowers must repay these loans when they no longer live in their home. Normally, if a husband and wife jointly take out a reverse mortgage, no payment is required as long as one spouse is still at home. But if only one spouse is on the loan and that spouse dies or moves to a nursing home, government rules allow the lender to demand full payment from the remaining spouse. And that can often force her to sell the house.

Finally, there is one more troubling aspect of reverse mortgages. Recent RM borrowers are significantly younger than a decade ago and more likely to be couples. Don Redfoot and colleagues at AARP suggest that many borrowers may be using RM proceeds to pay everyday expenses. And that may leave them with less home equity when they really need funds for assistance in their frail old age.

Home equity is an important asset for many seniors. And reverse mortgages can be a useful way to tap those resources. But consumers need to be very careful when they consider one and policymakers may need to rethink how these products work

The news for critical long-term care services and supports provided by the states–either through Medicaid or other funding–keeps getting worse. The toxic combination of a still-slow economy, huge structural budget pressures on all levels of government, and growing demands for aging and disability services is leading to ongoing cuts in both critical benefits to individuals and payments to providers.

The latest evidence comes from two new reports. Following an extensive survey of state officials, AARP reports that 31 states cut their non-Medicaid long-term care services programs in Fiscal Year 2010 and at least 28 expect to slash them in the coming budget year. These essential programs include home-delivered meals, transportation, adult day care, housing, and foster care.

At the same time, a report by the American Health Care Association–which represents mostly for-profit nursing homes– concludes that skilled nursing facilites are losing increasing amounts of money on their Medicaid long-term care beds. It concludes that nursing facilities are paid $17 per day less for long-term care than it costs them to provide these services. It is easy to criticize these results as self-serving, but the general trend is hard to dispute. And it could result in dramatic cuts in these long-term care resources. While this may not be a short-term problem in communities with an oversupply of nursing homes, this trend may already be curbing services in low-income areas. 

The AARP study reported that only a handful of states cut Medicaid benefits last year, but that was because the federal government, as part of its stimulus effort, increased its share of program payments. In addition, states that took the extra federal money were barred from cutting Medicaid benefits–although they could trim or freeze provider payments. Normally, the federal government pays about 60 percent of the cost of Medicaid while the states pay the rest (the amount varies from state to state).

However, this additional federal Medicaid funding is already winding down, and will disappear completely on July 1. Even more troubling, AARP found many states built the higher federal payments into this year’s budgets, a decison that will force even deeper cuts in state programs as those dollars dry up. Just this week, lawmakers in Texas and Ohio proposed major cuts in Medicaid.  

AARP also asked state officials whether they intended to pursue additional federal funding for home and community based services that’s been promised under the 2010 health reform law. Despite their serious financial shortfalls and the growing interest among policy analysts and advocates in expanding community services, state officials were remarkably cautious about whether they’d embrace these initiatives.

I’ll have more to say about these studies soon, but they are both worth reading.       

Today, The Washington Post and Kaiser Health News jointly published an article I wrote on aging in place villages–an important element in the effort to help seniors remain in their communities. 

There are close to 50 villages now operating around the country, and at least 600 communities interested enough to send representatives to workshops held over the past year by the non-profit community development group NCB Capital Impact.

Villages come in many shapes and sizes, but there are three basic models. One, pioneered by the Community Without Walls in Princeton, N.J. is an all-volunteer group, with modest dues (just $30 for a couple). Beacon Hill Village in Boston relies on a professional staff, provides concierge services to link members with vendors (for services from home health aides to plumbers), and charges substantial dues. The third model, created by the Maryland non-profit Partners In Care, is based on the concept of time-banking. In this design, members  receive credits for their volunteer time which they, in turn, can exchange for the help of other volunteers. 

Different models may work in different communities. But the key to the success of the village movement will come from their bottom-up, community-based nature: Local people pulling together to help one another as they age. It is a powerful concept with a promising future–both for elders and for adult children caring for our parents.       

When I was caring for my parents, I thought what I was doing was both the hardest thing I had ever done and the most rewarding. Now, an important new study suggests I was not alone.

The study, called Caregiving in the U.S., is an important snapshot of what life is like for those providing assistance to aging parents, as well as young adults and children with disabilities. The study concludes that a staggering 65 million Americans are providing some assistance to their loved ones. About 17 million are caring for special needs children. The rest–nearly 50 million– are helping the frail elderly or adults with disabilities.  

Who are these caregivers? Keep this picture in your mind: A 48-year old woman caring for her elderly mother. She is trying to hold down a job even as she spends about 20 hours a week helping her mom, something she’s been doing for four years. There is a good chance she is taking time off work to help her mother with transportation, shopping, managing finances, taking medications, and even getting in and out of bed. 

She is getting help when she can from other family members and friends. About 40 percent rely on paid aides for some help, although that’s significantly fewer than in 2004, the last time the survey was done. And about 40 percent feel their caregiving puts a “high burden” on them. 

Among those caring for someone 50 and older, the picture is a bit different. Caregivers are older–more than half are over 50 themselves. They are, typically, helping a 77-year-old widow who is living in her own home and who may be suffering from dementia.

The study was done by the National Alliance for Caregiving along with AARP, and funded by the MetLife Foundation. It follows similar studies published in 1997 and 2004. Read it.