The Congressional long-term care commission will finally hold its first meeting in late June. However, the panel must conclude its meetings in the fall and commission members are increasingly pessimistic that they will reach agreement on any substantial reforms to the nation’s troubled system of supports and services for the frail elderly or younger people with disabilities.

Last Friday, I participated in a panel discussion at the American Enterprise Institute (AEI) on long-term care and the prospects for the commission. If anything, that discussion reflected the vast gaps the commission must close in a short time if it is to accomplish anything at all. Not only do LTC experts disagree on solutions, they can’t even agree on facts.

I was joined on the AEI panel by Commission member Mark Warshawsky, director of retirement research at the consulting firm Towers Watson. Other panelists included Josh Wiener, who directs long-term care research at the consulting firm RTI International; Matt Salo, executive director of the National Association of Medicaid Directors; and Stephen Moses,  president of the Center for Long-Term Care Reform.

Part of my role was to remind Mark and other commission members to consider the needs of care recipients and caregivers. This seems obvious enough. But it is remarkable how often they are forgotten in these discussions. Indeed, of the Commission’s 15 members, only a handful represent care recipients and their families.

But much of our discussion focused on two issues that turned out to be quite divisive—both focused on who pays for long-term services and supports.

Mark made two arguments that I think reflect a misunderstanding of the data. The first was that Medicare pays for a large share of LTC costs. Mark reached this conclusion from the National Health Expenditure Accounts that show who pays for care provided by skilled nursing facilities and home health care agencies.

It is not easy to tease out, but much of that spending is for post-acute care, not long-term supports and services. Imagine someone who breaks her hip. She’ll have treatment in the hospital, perhaps followed by rehabilitation and other treatment in a nursing facility. If she is discharged home, she may receive more treatment from a visiting nurse or therapist as well as some personal assistance.

Where is the line between post-acute care and long-term services and supports? It is hard to tell, but Mark assumes that all nursing facility and home care is long-term care, and that is not right.

The other controversy focused on whether wealthy people artificially dispose of or hide assets in order to become eligible for Medicaid.  Stephen Moses frequently makes this claim and he did again on Friday based on what he says are interviews with state Medicaid officials. Unfortunately, Mark echoed those views.

However, many studies, including a new one by Josh Wiener, tell a different story. The vast majority of those who enroll in Medicaid long-term care never had much in the way of assets, and thus had very little to give away. While it is true that some abuse the system, the problem is much smaller than critics assert.

These abuses should be stopped. But with all of the problems of long-term care, it is hard to see how this one rises to the top. Yet, it seems typical of the challenges the Commission will face.

The commission has been hamstrung since it was created last January, as part of a deal that also repealed the CLASS Act. The panel was given a lifespan of only six months from the time its members were appointed. It had no budget, no staff, and a charge to reform both financing and delivery of long-term supports and services and address pressing workforce issues.  There is no requirement that Congress vote on any of its recommendations.

The commission will have access to some limited Senate funds to pay for commissioners’ travel expenses and the like. Staffers are likely to be detailed from congressional offices with aides from Senator Jay Rockefeller (D-WV) taking the lead. Rockefeller was the commission’s primary supporter.

Warshawsky, who was appointed by Senate GOP leader Mitch McConnell (R-KY) raised several concerns about the panel:  He said it would need at least 18 months to do its work rather than four, its staff should be non-partisan, and any decisions should be made by consensus rather than by majority vote (the panel has 9 Democratic appointees and only 6 Republican appointees).

While Mark and I disagree about some important issues of substance, he is absolutely right about those three process issues. But I fear none of them will be satisfied.

Baby Boomers are in serious denial when it comes to their medical and long-term care costs in retirement. Yes, Medicare provides excellent health insurance (subsidized in large part by taxpayers). But it doesn’t come close to paying for a senior’s medical costs. And doesn’t pay for long-term supports and services at all.

Those holes in the Medicare system mean a couple turning 65 today will pay an average of $220,000 in out-of-pocket medical costs before they die, according to a new study by Fidelity Benefits Consulting. Those out-of-pocket costs include premiums, co-pays, and deductibles. On top of their medical care, two-thirds of those 65 and older will have some long-term care needs. And other studies estimate that each spouse can expect to pay an average of $50,000 on average for that care, on top of their health care costs.

That means a typical couple will need to put aside roughly $300,000 to pay for their care in old age. But Census Bureau reports the median net worth of an average couple at age 65 was only about half that in 2010. It is probably more now since the housing and stock markets have recovered from their lows, but it is still not close to $300,000.

Even more worrisome, Boomers think they’ll need only about $50,000 to pay for their health care in retirement.  And many think Medicare will not only pay for health care but also for long-term supports and services. Sadly, they are wrong and wrong.

Medicare does pay for health care. And, as my Urban Institute colleague Gene Steuerle has shown, it provides very generous benefits. He estimates that a two-earner couple that turned 65 in 2010 can expect  $387,000 in Medicare benefits, far more than the $122,000 they paid in Medicare taxes. A Boomer couple that turns 65 in 2020 will get $499,000 in Medicare benefits over their lifetimes.

But even with generous government benefits, they will still have to pay hundreds of thousands of dollars out of pocket.

Now, estimates of care costs in old age are all pretty rough. Other analysts come up with somewhat different projections for the lifetime health costs of seniors. For example, the Employee Benefit Research Institute calculated in 2012 that a couple would need to put aside about $165,000 at age 65 to have a 50 percent chance of paying for their lifetime medical (but not long-term care) costs. EBRI figured they’d need to put aside about $225,000 to have a 75 percent chance of paying all their medical costs in old age.

These estimated costs are falling a bit to reflect more generous Medicare benefits. They may decline further if the recent slowdown in the growth of overall medical costs has staying power. But even so, costs will be far beyond what many Boomers will be able to pay.

EBRIs presentation is especially valuable since it tries to reflect the uncertainties of predicting the future. Some of us will pay less than the average, but some of us will pay much more.

We know, for example, that a typical male over 65 will need a little less than 2 years of long-term supports and services over his lifetime, while a typical woman will need about 3 years of assistance. But those are just averages. A study completed several years ago found that one-third of those 65 and older will  need no assistance at all, but one in five will need help for five years or more.

A separate EBRI study shows that household wealth crashes when someone has a long stay in a nursing home or uses a home health aide for long time. For instance, it finds the median household wealth falls from $102,000 when someone enters a nursing facility to just $60,000 after six months.

That collapse in assets, driven by both medical and long-term care costs, may partially explain why so many nursing home residents end up on Medicaid. As Josh Wiener found in his recent study, the vast majority of those who became eligible for Medicaid long-term care benefits never had much to start with.

And that’s the real problem. Millions of Baby Boomers are totally unprepared for the medical care and personal care they are likely to need in retirement. All the denial in the world won’t make those needs go away. And the consequences of ignoring the problem can be catastrophic.

In the past few weeks, no fewer than three highly respected groups have proposed major health care reforms. They all promise greater use of patient-centered integrated care, but none include supports and services for frail elders or younger people with disabilities.

It took four decades to incorporate a drug benefit into Medicare. Now we seem to be in the same place with supports and services for people with chronic disease. If you were building a health system from scratch, you’d never leave out the non-medical assistance people need to help manage chronic illness—say, help with personal hygiene.

It makes no sense to include physical therapy as part of a plan of care if a patient has no way to get to the therapist. The greatest electronic medical record in the world can’t help someone who is malnourished because she can no longer shop or cook for herself.

Yet, none of these ambitious plans, which otherwise have a lot to offer, integrates such care into a new health system.

Maybe the authors are too focused on traditional medical treatment. Maybe they worry about what they fear will be the added cost—though done right, integrating health and personal care could save money. Maybe they don’t want to open the political can of worms that is long-term care.

But the health challenge for most seniors is chronic disease, and the aim of good care ought to be preventing chronic, manageable conditions from spiraling into acute episodes that result in costly and debilitating hospitalizations.  And a good way to do that may be to provide a modest suite of personal services and supports to these patients.

But none of these plans includes such a design.

All aim to improve care and save money.  All are built on better coordinating care. And all would reward both providers and patients for participating in health plans that provide high-quality care at low cost.

The first proposal comes from Cathy Schoen and Stuart Guterman of the Commonwealth Fund and Karen Davis, the long-time head of Commonwealth who is now at the Johns Hopkins Bloomberg School of Public Health. They propose a program called Medicare Essential which would combine the program’s hospital, physician, and drug coverage (Parts A, B, and D) into a single integrated benefit.

The second plan was designed by the Bipartisan Policy Center, a Washington think-tank, and is aimed at cost containment and quality improvement. It proposes broad system reforms, including a new Medicare design it calls as Medicare Networks. It too focuses largely on medical care. There is a role for nursing facilities and home health agencies, but only as post-acute care providers. These networks would provide some care coordination for those with chronic disease, but not delivery of long-term supports and services.

The third plan was sponsored by the Brookings Institution but designed by a group of health experts from across the policy spectrum including former Medicare and Medicaid administrators Mark McClellan and Mike Leavitt, former OMB directors Peter Orszag and Alice Rivlin and health policy analysts such as Katherine Baicker, Michael Chernew, and David Cutler of Harvard, and Mark Pauly of the Wharton School. Two members, Rivlin and former Senator Tom Daschle, also served on the BPC panel.

This model, like the BPC plan, would make major changes in both Medicare and Medicaid (as well as in the broader health delivery system). It contemplates some limited models of care integration for those who are dually eligible for both Medicare and Medicaid (something many states are already doing). However, its proposal to move Medicare to what it calls Medicare Comprehensive Care is a different story.

It too recognizes the needs of elders with multiple chronic disease, but seems to include only care coordination services, not the added personal care itself within its integrated care model.

Don’t get me wrong. All of these plans are ambitious and all seem to anticipate the political system’s drive towards better integrated care. But they ignore a critical piece of the puzzle for 12 million people now receiving long-term supports and services, a number than will double by 2030. Medical care alone, no matter how good it is, will not improve the quality of life for these people and their caregivers.

The smart people who designed these new reforms need to think a bit more creatively for that to happen.

Yesterday morning, a veteran of the decades-long effort to improve the way we deliver and pay for long-term supports and services asked me a question. Why, he wondered, should he believe that recent attempts to reform long-term care could succeed when so many previous initiatives have failed.  Last evening, I may have found an answer.

My wife and I went to see a powerful play called How to Write a New Book for the Bible.  It is an unsparing look at the real-life experiences of the author, Bill Cain, who cared for his mother during the last year of her life. Cain, a Jesuit priest and writer, absolutely nailed the reality of caregiving— the pain, the intimacy, and even the humor.

But the play got me thinking about my friend’s question: How is it different this time? The answer may be that caregiving is finding its way into the arts and popular culture in ways that it never has before.  And that may both reflect changing public opinion and drive policy reform in ways traditional lobbying cannot.

Think about films such as Amour, the 2013 Academy award winner about an aging couple struggling with profound physical decline; and Quartet, a 2012 Dustin Hoffman-directed film about the residents of a senior community. Or the shelf full of memoires by the famous and semi-famous who became caregivers for parents or spouses. Or novels such as Walter Mosley’s brilliant The Last Days of Ptolemy Grey.

Recently, a choreographer approached my wife, who is a hospice chaplain, about doing a joint project. She wants to use dance to tell the stories of people approaching  death.

Not long ago, books and movies about aging or caregiving would never have been done. Plays like Cain’s would barely get a reading. “Who’d pay to see it,” some bean-counter would ask.

But something has changed. Now, people do pay to see it.

Culture and the arts have gotten way ahead of policymakers. They see that aging and caregiving are beginning to resonate with the public. Inevitably, the pols—who are always a lagging indicator of public perception—will catch up.

The public isn’t quite there.  A recent public opinion poll by the Associated Press and NORC Public Affairs Research found that one-third of Americans 40 and older would rather not think about old age at all.

Yet, half recognized that nearly everyone will need some personal assistance before they die. More than half said they were currently, or had been, caregivers.

And as artists and writers reflect these experiences, it magnifies people’s awareness. And their audiences will ask why public policy and the health system are failing them.

It wouldn’t be the first time the arts have helped lead change. Think about civil rights in the 1960s or AIDs research in the ‘80s and ‘90s. Or, more recently, issues as disparate as immigration, terrorism, and climate change. In each case, policy responds in part to the ability of culture and the arts putting a powerful face on those half-formed public perceptions.

And these stories will increasingly resonate with lawmakers. They are facing their own caregiving challenges and hear more stories from their constituents. They still have not quite connected these experiences with the need for policy change, but they are getting there (trust me, no-one is more risk-averse and resistant to change than your typical elected official).

The answer to my friend’s question, then, may be plays like How to Write a  New Book for the Bible. We still need to put good solutions on the table. But, thanks in part to authors like Bill Cain, things are different now.

You’ve probably seen the headlines from President Obama’s 2014 budget: He’d slow the growth of Social Security benefits by changing the way payments are increased for inflation, trim Medicare by cutting payments to providers and making high-income retirees pay more out of pocket for their health care, and he’d protect Medicaid from budget cuts.

But you may not have seen some of the fine print. Behind those big numbers, Obama would cut or freeze spending on many key programs for seniors. For instance, he’d freeze funding for Meals on Wheels and other nutrition programs, as he has through most of his Administration. Same story with aging network services and family caregiver support.

He’d trim spending for community-based supportive services, while cutting funding from$16 million to $10 million for Aging and Disability Resource Centers, which provide information services to seniors, people with disabilities, and heir familie

Of course, this is just the first step in the budget process. Congress will have to act sometime this year on these funding requests and, in many cases, could well trim them further. Remember, House Republicans have vowed to balance the budget within 10 years, entirely through spending reductions.

This budget is just a glimpse of the future. With growing pressure to reduce the deficit and limited enthusiasm for tax hikes, spending of all kinds, including for senior services, will face ongoing pressures.

America’s system for financing long-term care is failing, and the window for creating a payment system that works is rapidly closing. That was the conclusion of a morning-long expert session sponsored last week by the SCAN Foundation.

While the participants differed on specific solutions, most agreed on four key issues:

• The existing system for funding paid long-term supports and services is built on a wobbly three-legged stool: low private savings, an underfunded Medicaid program, and a hobbled private long-term care insurance market.
• The solution must include an affordable way for Americans to prefund their long-term care costs. This could include tapping financial assets or home equity, or buying insurance (either government, private, or some combination of both). Low-income people would require some form of safety net protection.
• Any future system should finance high-quality long-term supports and services that are well-integrated with medical care. This is especially important since recipients of care services suffer from chronic disease or injury that often requires complex medical interventions.
• There is currently no political consensus on how to do any of this.

That is where everyone agreed. Here is where they did not:

Several panelists focused on ways to enhance private insurance, where the market for traditional long-term care coverage has effectively collapsed. A paper by Marc Cohen of Lifeplans, Inc. and professors Richard Frank and Neale Mahoney of Harvard described a broad package of design changes that might make policies more attractive.

Their ideas include simplifying and standardizing insurance products, indexing premiums annually instead of requiring carriers to ask for big rate increases every few years, allowing insurers to sell high-deductible plans (where buyers could be responsible for as much as two years of LTC costs), and better educating consumers about the price of long-term care and the limited government resources available to pay for it.

They also propose industry-funded reinsurance pools that would protect insurers against unanticipated risks. Another suggestion: Require that companies over a certain size offer LTC insurance and force workers to buy unless they make an active choice to reject insurance. They also recommend new highly-targeted government subsidies, such as tax credits, to encourage moderate-income consumers to purchase long-term care insurance.

Finally, they suggest linking long-term care and health insurance, an idea I raised last year.

Several of their proposals, such as catastrophic coverage and standardized plan designs, are aimed at substantially lowering rates.

Expanding the role of employers may be especially critical since 80 percent of workers currently have no access to coverage through their jobs, according to a separate paper by Jeremy Pincus and colleagues at the insurance industry consulting firm Forbes Consulting Group.  Like Cohen, Frank, and Mahoney; Pincus also believes an employer mandate would significantly boost the number of workers who would buy LTC insurance.

But all that may not be enough. Other conference participants felt that even with these broad-based changes, voluntary private insurance would remain unattractive for many people. As a result, some sort universal coverage is the only way to make LTC insurance truly affordable for middle-income households. Voluntary insurance, even with reforms, would remain out of reach for tens of millions of middle-income people.

Anne Tumlinson of the consulting firm Avalere Health, Josh Wiener of RTI International  and their co-authors found that mandatory insurance would be significantly less expensive than voluntary coverage. Tumlinson said that maintaining the voluntary system would do little more than preserve the unworkable status quo.

Insurance officials tell me privately that, even in the best case, perhaps 20 percent of Americans would buy voluntary LTC insurance. Perhaps another one-third have lifetime incomes so low that they can’t be expected to pay for their own care, either through savings or insurance, and will need some sort of public support.

That leaves perhaps half the country at risk. The challenge for policy makers and the market is to figure out what will work for them. The SCAN program was a great start, but much more needs to be done.

By now you know the story—or at least think you do: A nursing home nurse sees an 87-year-old resident in cardiac arrest and calls 9-11. Despite desperate pleas of the call center operator, the nurse refuses to do CPR and the resident dies.

Except most of the story isn’t true. Lorraine Bayless lived at a Bakersfield (CA) continuing care community called Glenwood Gardens, but in independent living, not in its skilled nursing facility. She did not die of a heart attack but of a stroke, according to the death certificate signed by her personal physician. CPR may have saved her, but it is very unlikely.

And there is more. Mrs. Bayless did not want life-prolonging medical interventions, and her family is fully satisfied with the care she received. And the staffer who called 9-11 may not have been a licensed nurse at all. One piece of the story is true: Glenwood Garden staffers are prohibited from performing CPR or other medical interventions and are instructed to call 9-11 in the event of emergencies.

Still, even the real story raises some important questions. If you or a loved one live in residential care, here are five lessons to learn from this episode: 

What level of care can you expect? Independent living communities are not nursing homes or assisted living facilities. You should not expect them to provide medical care or even personal assistance. You have an apartment and perhaps access to a dining room and some social activities. Emergency response is probably limited to a pull cord in your unit. That’s about it. If you need additional assistance, you’re responsible for hiring your own aide. CCRC’s are more complicated since they may have a licensed nursing facility on site. Still, if you are living in an independent unit, don’t expect skilled nursing care.

Is staff trained and permitted to perform emergency care? Does the facility have at least one staffer trained in CPR and first aid on duty at all times? She doesn’t need to be a licensed nurse. And what is the staff allowed to do—bandage a cut, put ice on a bruise, CPR, or nothing? One CCRC director told me her staffers are trained in first aid but her facility’s lawyers urged her to instruct employees to always call 9-11.  

What emergency care do you want? This may be the most important question of all. Mrs. Bayless’ family says she did not want life-prolonging emergency care. It is not clear whether she had a living will or do not resuscitate order, or had designated a family member as her healthcare proxy. But if you are old enough to be reading this, you should discuss end-of-life issues with family members and prepare your own advanced directives. Right now.    

Is the facility aware of your wishes? It does you no good to prepare these legal documents if you don’t  share them with the care facility, your physicians, your local hospital, and your family. You should distribute advanced directives as widely as necessary. Remember, people cannot follow your wishes if they don’t know what they are. The best outcome for Mrs. Bayless may have been for the staffer to not call 9-11 at all but rather to hold her in her arms until she passed away. But she had to know that.

Finally, lesson No. 5: Don’t believe all the news you read on the Web.

Nearly two months ago, Congress created a commission to recommend reforms to the current long-term care system. So what has happened since? Not much.

Leaders of Congress have appointed members to serve on the panel but President Obama—who has three of 15 picks– has not yet made his choices. The commission can’t select a chairman, find a staff, or set an agenda until he does, so for now the effort remains on hold.

Sources say the delay is mostly bureaucratic—it often takes the White House time to review background checks and run candidates through the usual political traps. 

The commission members picked so far are an intriguing mix. They include health and long-term care policy experts, three representatives from the nursing home and the senior service industry, two physicians, a union official, a philanthropist focused on finding a cure for Alzheimer’s disease, and a Medicare consumer advocate. Somewhat surprisingly, it has no members explicitly representing the views of people with disabilities, family caregivers, or the insurance industry.

As I have written previously, this commission will operate under severe constraints. It is supposed to address three big issues–long-term care financing, delivery, and workforce challenges. It has no budget so its staff will be made up of people detailed from Congress or the Administration. It has only six months to submit a report (the clock starts ticking once Obama discloses his choices). After Obama makes his picks, the panel will have nine members appointed by Democrats but only six selected by Republicans–a ratio that already has the GOP planning to play defense. Most troubling, Congress is not required to act on the panel’s recommendations.

Some optimists believe the commission can achieve some modest goals—by framing the importance of long-term care reform and perhaps by agreeing to small reforms. But others have much lower expectations.  

Who are its members?

Democrats have picked:

Javaid Anwar, a Las Vegas internist who is vp for health services at a large casino/hotel company and served as chair of Nevada’s Committee on Access to Health Care.  

Laphonza Butler, president of the Service Employee’s International United Long Term Care Workers’ union.

Bruce Chernof, a physician who is president and CEO of the California-based SCAN Foundation, which focuses on senior issues.

Judy Feder, my colleague at the Urban Institute who served as a senior health aide in the Clinton Administration and staff director of the 1989-90 Pepper Commission.

Judith Stein, founder of the Center for Medicare Advocacy, which represents beneficiaries in their disputes with the Medicare program.

George Vradenburg, a former media executive and founder of USAgainstAlzheimer’s—a non-profit that advocates largely for research dollars aimed at finding a cure for dementia.

The GOP picks are:

Judith Brachman, who formerly served as a housing official in the Reagan Administration and director of the Ohio Department of Aging, now chairs the Jewish Federation of North America’s Aging and Family Caregiving Committee. JFNA represents long-term care providers.

Bruce Greenstein, Louisiana’s Secretary of Health and Hospitals, who was formerly a senior official at the federal Department of Health and Human Services and managing director for worldwide health at Microsoft.

Stephen Guillard was CEO of several large skilled nursing facility operators including HCR ManorCare and was chairman of the Alliance for Quality Nursing Home Care, a trade group that represents large for-profit nursing home companies.

Neil Pruitt is chairman and CEO of UHS-Pruitt Corp, an integrated health care company, and board chair of The American Health Care Assn., the largest trade group representing nursing homes and other senior service providers.

Grace-Marie Turner is president of the Galen Institute, a free-market oriented public policy organization that focuses on health care issues.

Mark Warshawsky is a pension expert who directs retirement research at the benefits firm Towers Watson and was a senior official at the Treasury Department from 2004-2006.  

There are some impressive people in this group and a few who seem to have little knowledge of long-term care. They represent a wide ideological spectrum which, depending on the panel’s dynamics, could be an opportunity to find bipartisan consensus or, more likely, a recipe for gridlock. But the commission won’t be anything at all until Obama picks the last three members.        

Seniors continue to be readmitted to the hospital too frequently. But when it comes to explaining why, patients and providers are on Mars and Venus. The patients blame doctors and nurses. Doctors and nurses blame patients. And everybody blames the hospitals. 

The problem, everyone seems to agree, is that hospital discharges are a mess. Patients don’t understand what they need to do after they go home: They don’t see their primary care doctor, they don’t take their medications properly, and they land back in the hospital. That revolving door jeopardizes their health and costs Medicare billions of dollars. 

A new report by the Robert Wood Johnson Foundation looks at hospital readmissions from two perspectives. A new study by the Dartmouth Institute for Health Policy and Clinical Practice finds there has been little improvement in hospital readmissions, despite an intense new focus on the problem by Medicare. The study also finds a huge variation in readmissions from one part of the country to another, which suggests that, with the right motivation and tools, health systems can get a handle on this challenge. After all, if they can do it right in Minnesota, they ought to be able to do it in New York.

But perhaps even more interesting was the second part of the same study: a report by PerryUndem Research and Communication based on 28 interviews with patients and health providers in Washington, D.C., New York City, and Dallas.  These, of course, are anecdotes, not data. But they are incredibly revealing and show a yawning chasm between the perceptions of health professional and patients. “What we have here,” as the captain said in the classic film Cool Hand Luke, “is failure to communicate.”

In these interviews, doctors and nurses saw patients who are, in the dreaded term, non-compliant.  From the perspective of these health professionals, elders often are so anxious to leave the hospital that they are not honest about whether they can manage their discharge. They say they understand instructions when they really don’t. They say they have caregiver help even if they are alone. Then, once they get home, they fall back on the same bad habits that got them hospitalized in the first place. And when they get sick, they go to the ER instead of calling their primary care doctor.

But when the interviewers asked elders, their story was completely different. To them, hospitalization is overwhelming and terrifying. It is, in the words of one “an alien world.” They say doctors expect them to understand complicated instructions and make decisions while they are in pain or in the fog of medication. Instructions are written in jargon that may be second nature to doctors, but is incomprehensible to their patients.

To older patients, a new diagnosis of a chronic disease can be frightening. After the shock of hearing such news, they may need extra help understanding what to do. At the same time, while doctors assume patients who have been living with a disease for many years understand how to manage it, patients say they often do not (after all, if the disease was well-controlled, they probably wouldn’t be back in the hospital).

Men, especially, are often alone when they go home. They have no one to care for them or to call a doctor if their condition deteriorates.  And what may be obvious to a health professional may not be to an elderly patient. In one case, a patient got an infection when he resused compresses on a surgical wound. No one told him he couldn’t.

Both doctors and patients agreed that hospitals are under tremendous financial pressure to discharge patients quickly—a step that often puts more burden on discharged seniors to care for themselves. They are right. Hospitals are being pushed by Medicare to both discharge quickly and prevent readmissions.

Walking that fine line won’t be easy. That’s why it is more important than ever that doctors and nurses learn to talk to patients and that hospitals vastly improve discharge programs that, too often, are the broken link in the health care chain.

Pope Benedict delivered an important message today: There comes a time for most of us when our bodies and minds weaken and we must change the way we live our lives. As with the Pontiff, it may mean giving up a demanding job. But for others, it may mean much more: Getting help with those activities we once took for granted.

This does not mean giving up life, of course. For many elders, retiring from a day job makes time for new interests and challenges. In our culture, that’s a choice that is made more acceptable by age (if you leave your job at 40, you’re a deadbeat or going through a mid-life crisis. If you leave at 70, you’re retiring).

And entire industries have grown up around the idea of productive aging, the third age, or all the other marketing euphemisms out there. Dr. Bill Thomas has a nice perspective on the choices we can make as elders.

But for most of us, the time will come when we need more help with life than we’ve been used to. For those elders suffering from chronic diseases, independence slowly takes on a new, and more limited, meaning.

As with Benedict, who is 85, this often happens in our 80s. On average, men at about 80 will face a year and a half of severe disability. Women can expect about three years of severe disability starting at about 82.  

It is that period when many of us will need long-term services or supports. It may be help bathing or dressing, cooking or going to the doctor.  And it may require the assistance of a family member or a paid aide, or perhaps require a move to a residential care facility or even a nursing home.

Two-thirds of those 65 or older will need some assistance before they die, according to a landmark 2005 study by Peter Kemper, Harriet Komisar, and Lisa Alecxih. One-third will need it for a year or two, but one out of five will require care for five years or more. Half of those 65 or older will spend no money on personal care, though that is often thanks to the help they get from family members who may make substantial personal and financial sacrifices. But one in six will need to set aside more than $100,000 (present value of 2005 dollars) for long-term care.

Pope Benedict will get the help he needs. But many of us will not have the resources for this care. We don’t have the community surrounding us that the Pope enjoys. Increasingly, we don’t have children, or our children live at a distance or are estranged. Few of us have the money to purchase aid. Half of Americans age 65-74 have financial assets of less than $65,000, though they’ll need nearly twice that on average just to pay for medical care in old age.

We think that Medicare will pay for our long-term care, but it won’t. Medicaid, which does pay (if you are impoverished and very frail), is under enormous financial stress. And private long-term care insurance is expensive and increasingly difficult to buy.

Thanks to Pope Benedict for reminding us that while old age can bring great joy, it can also bring frailty. With good diet and exercise, we may be able to delay the day disability comes, but short of sudden death we can’t stop it.

We can prepare for it though. And Benedict’s story is a reminder that we need to–as individuals, families, communities, and as a society.