Thinking About Long-Term Care Insurance

I’ve always dreaded when people ask me whether they should buy long term care insurance. They assume that as a physician specializing in the care of geriatric patients, I should know the answer, or at least have an opinion. There are so many different policies and people’s circumstances vary so much that I’ve never known what to say. Now the AARP (American Association of Retired Persons) Public Policy Institute has commissioned a report that sheds considerable light on the subject: “Comparing Long-Term Care Insurance Policies: Bewildering Choices for Consumers” (May, 2006). I still don’t have an answer, but at least I understand the issues better.

By way of background, we should all recognize that we face a substantial risk of needing nursing home care. Nearly 50% of people who recently turned 65 can expect to spend some time in a nursing home before they die. For many this will be the last place they live in; for some, it will be a facility where they stay for rehabilitation after hospitalization. The majority of people over age 80 need some form of long term care—fully 68% of men and 77% of women who live at home need assistance with everyday activities (see Wan He, Manisha Sengupta, Victoria Velkoff, and Kimberly DeBarros: US Census Bureau, Current Population Reports, P23-209, 65+ in the United States: 2005. US GPO, Washington, DC, 2005.

We should also be aware that Medicare pays for only a small fraction of our long- term care needs. Medicare covers up to 100 days of skilled nursing home care each “benefit period,” (where a benefit period typically starts at the time of hospitalization). But this kind of “skilled nursing home” care involves short-term rehab after a hospital stay only. Medicare may also pay for a home health aide or homemaker for a limited time after an acute illness. It does not pay for the kind of ongoing care than an older person with one or more chronic diseases may need. Medicaid, the insurance program for the poor and the disabled, does pay for nursing home care or services in the home for those who have used up most of their resources. The actual Medicaid eligibility criteria vary considerably from state to state since Medicaid is a joint federal-state program.

If you think you want to get long term care insurance, you typically need to choose among policies that only cover care in institutional settings, policies that only cover care at home, and comprehensive policies that provide both. While some people figure that the point of a policy is to be able to pay for home care so as to avoid going into a nursing home and therefore are interested only in a home-care policy, the coverage provided is likely to be inadequate to pay for full time help. Many people decide that if they’re going to get long-term care insurance, they may as well guard against all eventualities.

Finally, consumers should be aware that their premiums can increase. Insurance companies cannot single out particular individuals for increases based on their particular circumstances, such as their health. They can, however, raise premiums to entire groups of people, for example those over age 75. Here are some of the specific questions you need to ask if you are looking at a LTC policy:

Does it cover assisted living?

State laws often require that those LTC policies that cover “facility care” provide coverage for assisted living facilities. However, there is no standard definition of assisted living, so insurers can claim that a particular assisted living facility does not qualify.

What level of disability is needed to qualify?

LTC policies only kick in if the insured meets a specified level of disability. Most (but not all) policies accept the standard of impairment in at least 2 activities of daily living (such as dressing, bathing, or going to the bathroom). However, insurance companies can choose how they will determine if you are dependent in these areas.

What is the daily benefit?

The daily benefit amount provided can be as low as $50 a day or over $300 per day. In some cases, if your benefit ceiling is $150/day and your costs are $100/day, you effectively forfeit the difference, even if the following year you enter a nursing home and your costs go up. Another approach is to use a “pool of money.” The total benefit is then the daily benefit times the number of days of coverage (ie the duration of the policy). The pool can be spent for any combination of services: it might be spent slowly (if your only needs are modest home care) or more quickly (in a nursing home).

How long is the waiting period?

Once a person has met the policy’s “disability trigger,” the waiting period is the time before the benefit actually begins. If you have a 100-day waiting period, and nursing home care costs $150/day, you will have to pay $15,000 before the insurance company starts to pay.

What is the duration of the benefit?

Once you start using the LTC benefit, you may have anywhere between 1 year’s worth of coverage and a lifetime’s worth. Most people who need long-term care need it for several years.

Does it have inflation protection?

Unless you have inflation protection, the daily benefit will lose in value relative to the cost of care. This is an especially severe problem for younger purchasers whose benefit may be inadequate to cover the costs of care years later.

Summary

As the AARP report suggests, it would be very helpful if the government mandated standard policy benefits and provisions, just as is the case for supplemental Medicare policies. In addition, it would be desirable to require companies to offer to pay family caregivers. Finally, LTC policies that pay benefits for multiple types of care should make the total value of all benefits available in any covered setting.

Until such regulations are passed, consumers are faced with a confusing array of possibilities. If you decide you want to buy LTC insurance, you should generally choose a comprehensive policy. You should make sure that by “comprehensive” it in fact does cover assisted living facilities. You probably will want a policy that specifies the maximum total amount it will pay out and that allows you to allocate that amount between home care, assisted living, and nursing home care, as you see fit. You should be sure that the benefit will go into effect once you are dependent in 2 activities of daily living, that the waiting period if no more than 100 days, and that the duration of coverage is at least 3 years. The cost of the premium for such a policy may be very high. Once the insurance agent quotes you a premium, you will need to consider whether you would be better off setting aside money regularly as a special LTC fund for yourself.

Washington Post Review

The following review appeared in the Washington Post on Sunday. It's perhaps a bit overstated, but positive nonetheless.

In The Denial of Aging: Perpetual Youth, Eternal Life, and Other Dangerous Fantasies (Harvard Univ., $25.95), Muriel R. Gillick whacks all the major players orchestrating the Last Dance of America's senior citizens. Medicare is misguided, she argues. Nursing homes are like prisons. Assisted living facilities are too often motivated by greed. Doctors (Gillick is a physician, by the way) are too willing to extend life at any cost. Relatives often have lousy judgment about what's best for a loved one. Even those facing their own finality are too focused on themselves.

In assessing the nation's retirement and health care institutions, Gillick is not the first to see flaws that are ruinous both for the seniors receiving aid and for those of us receiving huge bills for that aid. For example, she notes that while most people want to spend their last days at home, only a quarter of people over age 65 do so. Twice as many die in hospitals, which are so focused on keeping patients alive that they haven't mastered the art of respectfully allowing those near death to leave this world.

For those who need medical care, Gillick would deliver more of it at home, via phone calls, visits from practitioners and other simple measures that have proved effective and efficient. But don't mistake Gillick for a heartless advocate of rationed care. She wants to keep old people alive and well for however long each person can thrive. But she views many efforts to protect nursing-home residents as more of a problem than a solution. By focusing on statistics and standards aimed at ensuring quality of care for these people, she contends, the government is actually prompting these institutions to ignore quality of life.

Gillick challenges Baby Boomers to reengineer nursing homes, first into true homes where elders can thrive and, when necessary, into places providing the care they need to either recover or spend their final days in comfort. More broadly, she challenges her generation to embrace the inevitability of aging and to make the most of it. That would be quite a legacy for the Baby Boomers to leave their children.

--Tom Graham

When More is Less

Last week, Dartmouth’s Center for the Evaluative Clinical Sciences released the latest version of its “atlas” of medical care in the U.S. Since 1993, the Dartmouth Atlas Project has produced a fascinating series of studies examining the geographic variability in health care resources and their utilization. A consistent theme throughout the life of the project has been that the availability of resources drives their use: surgical rates—even for elective surgery—are higher in communities with more surgeons; hospitalization rates are higher in areas with more hospital beds. The newest report, called “The Care of Patients with Severe Chronic Illness: A Report on the Medicare Program by the Dartmouth Atlas Project” draws the same conclusions about the care for people with chronic disease (available in entirety online here)

Chronic disease—conditions such as diabetes, cancer, and heart disease—is the major health problem among Americans today, afflicting some 90 million people and accounting for 7 out of 10 deaths. The care of people with chronic illness accounts for over 75% of all U.S. health care expenditures. And most of the people with chronic conditions are elderly.

The principal finding of the Dartmouth study is that Medicare spends much more per enrollee in some states than in others. Spending for patients with severe chronic illness during their last 2 years of life ranges from almost $40,000/person in New Jersey, Washington, D.C., California, New York and Maryland, to under $25,000 in states including Idaho, Iowa, West Virginia and North Dakota. The variability is not due to higher rates of sickness in some regions. In fact, differences in illness levels are “virtually unrelated to differences in spending.” The other disturbing finding of the study is that the extra spending does not buy longer life or better quality of life. On the contrary, those with chronic illness in high spending regions have shorter life expectancies and less satisfaction with their care.

Spending on chronic illness varies by state, with those states that have greater reliance on primary care than on specialists spending less money and depending less on intensive care units. In Florida, for instance, Medicare patients who died spend an average of 4.7 days in the ICU during the last 6 months of life (a marker of the aggressiveness of care), whereas patients in North Dakota spend only 1.5 days. Academic medical centers also vary in the way they manage chronic illness: during the last 6 months of life, for example, patients who use New York University Hospital have an average of 76 physician visits, compared to 24 visits for patients who use the Mayo Clinic. In general, acute hospitals are dramatically over-used (in Hawaii, patients spend an average of 16.4 days in the hospital during their last 6 months of life, compared to 7.3 days in Utah) and hospice care is under-utilized (while in Arizona, 44.7% of dying patients are enrolled in hospice, in Alaska it is only 6.7% and the national average is 27.2%).

The authors conclude that what we need is “a population-based, community wide integrated system for managing severe chronic illness.” I agree. Specialists have no incentive to refer patients to hospice care; they do have incentives to order diagnostic tests and to use ICU care. Hospitals likewise, unless they are part of a network of care, have no incentive to enable patients to die at home; they benefit if their beds are filled. If we had a comprehensive system—and the closest that any segment of the U.S. comes to such an approach is the Veterans Administration system—Medicare would reduce its costs on patients with chronic disease by 30%, while simultaneously improving care.

Aricept Redux

Three months ago I wrote a column arguing that in the U.S. we over-use donepezil (Aricept), a drug widely touted as helpful in early Alzheimer’s disease (“Americans, Alzheimer’s, and Aricept,” February 1, 2006). In Britain, by contrast, careful review of all the available studies led to the recommendation by NICE (the independent National Institute for Health and Clinical Excellence) against routine use of this medication. Now a new study suggests that donepezil may help patients with advanced Alzheimer’s disease, people who need help with basic tasks such as bathing and dressing and who have profound cognitive impairment (see B. Winblad, L. Kilanter, S. Erikkson et al, “Donepezil in Patients with Severe Alzheimer’s Disease: Double-Blind, Parallel Group, Placebo-Controlled Study,” Lancet 2006; 367:1057-65). How can this be? Are we seeing an attempt to find some use, any use, for this drug, which does not appear to be tremendously useful in early Alzheimer’s patients, the group in whom it was initially targeted?

The new study was carried out in Swedish nursing homes. Subjects were randomized to receive either donepezil or placebo and they were treated for 6 months. The treated group showed slight improvement in tests of mental function and a lower rate of deterioration in basic activities of daily living compared to controls. But before families rush to request donepezil for their relatives, we should consider the intriguing possibility raised by the study’s authors: perhaps what the donezpezil did was to counteract the negative effects of the many other medications these individuals were taking. Virtually all the people in the study (99%) were taking other medications, and 80% were on psychoactive medications intended to control their behavior. We know that the brains of individuals with dementia are very sensitive to chemicals that affect the nervous system—they are very prone to developing delirium, or an acute confusional state. Before concluding that all patients with severe dementia should be given donepezil, we need to study its effectiveness in demented persons who are on no other medications. Only then can we figure out whether we should dole out more donepezil (assuming that the “statistically significant” benefits are in fact clinically meaningful)—or give patients a drug holiday, discontinuing the many potentially toxic medicines they are currently taking.

The Skinny on Longevity

It’s been known for some time that skinny rats live longer than fat rats. They have to be extremely svelte for this effect to kick in: laboratory rats that consume 60% of the usual rat diet live 30% longer than the average rat. Studies are underway in primates, but because monkeys live for many years, the results of “caloric restriction,” as the intervention is called, on their longevity is not yet know. But a new study in the Journal of the American Medical Association suggests that a comparable phenomenon is at work in people.

A team of researchers from Louisiana State University in Baton Rouge and the Garvan Institute for Medical Research in Darlinghurst, Australia reported on a randomized study involving 48 people (see Leonie Heilbron, Lilian de Jonge, Madlyn Frisard et al, “Effect of 6-Month Calorie Restriction in Biomarkers of Longevity, Metabolic Adaptation, and Oxidative Stress in Overweight Individuals,” Journal of the American Medical Association 2006; 295:1539-48). The 48 people included men under 50 and women under 45 who were healthy but sedentary and overweight but not obese. It was hard to find people to participate: of 599 people who were screened for participation, 460 failed to meet the criteria. Another 91 people decided as they were being screened that they weren’t interested in participating. For the 48 people who did enroll, 12 served as controls and were kept on a weight-maintenance diet; 12 were assigned to a calorie restricted diet (25% restriction of their baseline energy requirements); 12 were assigned to a combination of calorie restriction and exercise (12.5% calorie restriction and 12.5% increase in energy expenditure through exercise); and 12 were assigned to a very low calorie group (890 kcal/day). Midway through the study and then at the end of the 6-month study period, all sorts of measurements were performed, including tests reflecting metabolism, tests of DNA damage, and of course weight.

What the authors found was that after six months of the prescribed regime, insulin levels and core body temperature were decreased in the intervention groups, both of which are “biomarkers of longevity.” They also found evidence of “metabolic adaptations,” i.e. lower energy expenditure in the groups on the special diets. While they could not conclude anything about whether these changes would persist if the subjects continued on their diets indefinitely and they certainly could not conclude that the subjects would live longer if they kept up the diet, they found the results “suggestive.”

The interesting aspect of this work is the possibility not that we could live longer if we starved ourselves, but rather that the aging process might be slowed down if we could find ways to emulate the effects of caloric restriction. Nobody seriously believes that large numbers of people are going to go on an 890 calorie diet indefinitely in a society where we cannot even find ways to prevent obesity or to help markedly overweight individuals lose weight. Most people aren’t really interested in living to be 100, particularly not if it means a long period of physical frailty and cognitive impairment. But if scientists could design chemicals that mimic the effects of calorie restriction and if these chemicals are able to delay aging, then conceivably all the major disorders of old age—heart disease, cancer, dementia—would have a later age of onset.

Of course it’s far from clear from a study of 48 people conducted over a mere 6 months that caloric restriction will have the desired age-delaying effect. And even if caloric restriction does prove effective, it will be a long way to finding a pill that produces the desirable consequences of caloric restriction without any significant side effects.

Before any older individuals cut down on food in the hope of preventing disability, it’s critically important to note that among older people today, malnutrition rather than obesity is a major problem. In the National Health and Nutrition Examination Survey, a study conducted periodically by the federal government, the incidence of malnutrition is reported to range between 12 and 50% among hospitalized older people and from 23-60% among institutionalized older adults. In the community, where malnutrition rates are lower, it remains a problem among people with low income, difficulty digesting or chewing food, and people who have trouble shopping or cooking (See Carol Evans, “Malnutrition in the Elderly: A Multifactorial Failure to Thrive,” Permanente Journal 2005; 9:3).

Facing our mortality is not easy. But phantasmagorical dreams of perpetual life are not the answer. What I argue in my book, The Denial of Aging: Perpetual Youth, Eternal Life, and Other Dangerous Fantasies is that immortality projects are better ways to cope with knowledge of our finitude than are searches for the elixir of life. Immortality projects—whether a book we write, a company we found, or the children we nurture—help us transform our painful awareness of our own limits into enduring memories. They are the way we leave a mark on the world, even after we ourselves have departed.

Newsweek Interview

Here's an interview Newsweek did a few days ago.

Adding Life to Years

The latest statistics on life expectancy were released by the National Center for Health Statistics in January, 2006 and they show continued improvement in the prospects for old age (DL Hoyert, M. Heron, SL Murphy, and HJ Kung, “Deaths: Final Data for 2003,” National Vital Statistics Reports. National Center for Health Statistics, Hyattsville, MD, released January 19, 2006). Life-expectancy at birth is 77.5 years, as of 2003, the year on which the results are based, surpassing the previous record, from 2002, by 0.2 years. The age-adjusted death rate (that is, the death rate taking into consideration the distribution of ages in the population) is also at a record low, down 1.5% from 2002.

If we examine the statistics more closely, we discover several interesting observations. First, let’s look at life expectancy at age 65. Life-expectancy at birth reflects the risk of dying of congenital abnormalities or of the dangers that affect young adults, such as AIDS and homicide. For older people, what is of concern is how much time they are likely to have left if they have made it through middle age. The answer is that life-expectancy at age 65 is an impressive 18.4 years. It is even higher for white women (19.8 years) and a little lower for white men (16.9 years). What is disturbing, however, is how much lower life-expectancy at age 65 is for black men (14.9 years). Black women, by contrast, are just about exactly at the national average (18.5 years).

Since age 65 really is not considered “old” any more, what is of even greater interest is the data on life-expectancy at age 75. The 2003 data indicate that 75-year olds can expect, on average, to live for another 11.8 years. Again, the situation is a little better for white women (12.6 years) and a little worse for white men (10.5 years). And again, the life-expectancy for black men is unfortunately only 9.7 years, although black women are almost as well off as white women, in terms of years of life left (12.4 years compared to 12.6 years).

Another important result reported by the government is that while the age-adjusted death rate is down for several of the leading causes of death, including heart disease, cancer, and stroke, the rate of Alzheimer’s disease continues to rise. Regrettably, this means that as we make strides in the treatment of many of the diseases afflicting the elderly, the net result is often that people live long enough to develop and ultimately die of dementia.

What is not discussed in the government statistics is the rate of chronic disability in old age. While we all aspire to live longer, for many of us it is critical that those additional years be good ones. We want to live longer but we want to be as independent as possible. We don’t want to require the help of others for our most basic activities—dressing, bathing, eating, walking. It turns out that the studies that have been done analyzing disability rates show that from 1982 to 1999 (no more recent figures are available for the U.S.) disability declined: one report calculates that the decline from 1982 to 1989 was 0.26% per year, the decline from 1989 to 1994 was 0.38% per year, and the decline from 1994 to 1999 was 0.56% per year (Kenneth Manton and XiLiang Gu, “Changes in the Prevalence of Chronic Disability in the United States Black and Nonblack Population Above Age 65 from 1982 to 1999,” Proceedings of the National Academy of Science (2001); 98: 6354-6359). A second report, summarizing the results of various other studies, suggests that the rate of decline in disability among the elderly has been 1% per year for several decades (David Cutler, “Declining Disability Among the Elderly,” Health Affairs (2001); 20: 11-27).

But if we examine the data on chronic disability carefully, what we find is that the improvements are most pronounced for domains such as the ability to cook or shop or clean house. The fraction of the elderly population with severe disability remains virtually unchanged. Moreover, historical research indicates that it is hazardous to predict future rates of decline based on recent trends: in the past, sharp declines in disability rates have often been followed by stability or increases in disability. (See: Donald Redfoot and Sheel Pandya, “Before the Boom: Trends in Long-Term Supportive Services for Older Americans with Disabilities,” AARP Policy Institute, October, 2002.) Recent work on the potential long term outcome of the obesity epidemic, for example, predicts that even the gains in life expectancy may be reversed (see S. Jay Olshansky, Douglas Passaro, Ronald Hershow et al, “A Potential Decline in Life Expectancy in the United states in the 21^st Century,” New England Journal of Medicine; 2005; 352: 1188-95).

What should we conclude from all of this? We can conclude that most of us who reach retirement age will live past 80. During much of our old age, we will be quite vigorous. But we are still at considerable risk for developing frailty (severe physical disability) and dementia (cognitive disability). Preventing these conditions, treating these conditions, and developing supportive care that will enable us to make the most of our old age despite these conditions, are the challenges that lie ahead.

Break a Leg?

Sometimes I wonder what disease will get me in the end: statistically speaking, it’s a toss up between cancer and heart disease. But I worry even more about breaking a hip. For many older people, a hip fracture is the beginning of the end. After sustaining a hip fracture, only 50-60% of people walk as well as they did previously. About 20% never walk again and 40% end up in a nursing home. Within a year, 37% of elderly Americans who break a hip are dead.

Not only are your odds of returning to your baseline level of functioning poor, but the chance of breaking a hip is substantial: 350,000 Americans break a hip each year. Older people are at risk of fractures because they fall and because they have thin (osteoporotic) bones. So articles in two major medical journals in the last month that call into question the efficacy of two leading preventive strategies—calcium and vitamin D on the one hand and hip protector pads on the other—are worrisome. Should all older people give up their calcium supplements and forget about wearing hip pads?

The study of calcium and vitamin D appeared in the New England Journal of Medicine (R. Jackson, A. Lacroix, M. Gass et al, “Calcium Plus Vitamin D Supplements and the Risk of Fractures,” NEJM 2006; 354:669-83). The authors had the opportunity to randomize over 36,000 women who had previously enrolled in a Women’s Health Initiative trial to receive either 1000 mg of calcium carbonate and 400 units of vitamin D or placebo. They were monitored for fractures for the next 7 years and their bone density was measured. The results? There was a small but not statistically significant decrease in the risk of hip fracture, a small improvement in bone density, and a small increased risk of kidney stones.

Before throwing away those calcium and vitamin D pills, it’s important to realize that only 59% of the women were actually taking the recommended dose at the end of the study. When the authors evaluated the outcomes in women who really took the medicine, there was a 29% statistically significant decrease in the likelihood of hip fracture. For scientific reasons, the analysis should be done the way the authors did it—using an “intent to treat” approach. This allows them to conclude that from a public health or policy perspective, they cannot recommend the use of calcium and vitamin D because prescribing those supplements is not likely to produce the desired outcome. But that’s different from concluding that taking the medication will not result in lowering your chance of hip fracture. It’s also important to realize that the 36,000 women in the study were healthy, community-dwelling post-menopausal women with an average age of 62. Inferring from this study that calcium and vitamin D do not prevent hip fractures in older women with other medical problems is not warranted. And in fact there was some suggestion that women over 60 did in fact benefit.

The second study on a related subject was a meta-analysis or pooled analysis of previous studies that was published in the British Medical Journal. (M. Parker, W. Gillespie and R. Gillespie, “Effectiveness of Hip Protection for Preventing Hip Fractures in Elderly People: Systematic Review,” BMJ 2006; 332: 571-4). It asked whether hip pads achieved their initial promise: earlier studies of nursing home patients had found that hip protectors could halve the rate of hip fractures. After combining the information from 14 studies, 11 of which involved nursing home patients and 3 of which were conducted in community-dwellers, the authors were unimpressed. They concluded that the pads were ineffective in the home setting and conferred only a small (but statistically significant) benefit in institutionalized individuals. But very much like the work on calcium, it turns out that many of the people who were supposed to wear the hip pads didn’t do so for much of the time. They found them inconvenient or awkward or uncomfortable, despite efforts to streamline the pads. Once again, it’s reasonable to conclude that hip pads should not at this point be the “standard of care.” We shouldn’t routinely expect insurance companies to pay for them or nursing homes to provide them. But there may well be a benefit for the person who is at high risk of falls and fractures and who is motivated to use them.

The data aren’t all in yet—we may find that calcium and vitamin D are effective, but higher doses are required, or it may turn out they are principally useful in an as yet undefined subgroup of the population. We may discover that certain types of hip protectors work and others, made of different materials, do not. In the meantime, these two interventions may make a lot of sense for people who want to do everything they can to avoid a hip fracture. And that’s not such a bad idea.

How Much will Medical Care Cost After Retirement?

Fidelity Investments just released a report estimating what the average 65-year old couple can expect to pay in medical expenses during their retirement (Reuters: “US Retirees’ Health Care to Cost $200,000-Fidelity”) Fidelity’s prediction is that a couple can anticipate spending $200,000 over the next 20 years. This is up from $190,000 in 2005 and $175,000 in 2004.

This figure—and clearly it’s just an estimate—is based on the expected cost of premiums for Medicare Part B and Medicare Part D, plus the cost of co-payments, deductibles, and out-of-pocket prescription drug costs. It does not include dental care, over-the-counter prescriptions, or long term care (ie nursing home costs).

It’s important to realize that this figure is based on the fact that the average life expectancy for a man at age 65 is 15 years and for a woman is 20 years. Actually, a 65-year old white man will, on average, live another 16.6 years; a 65 year old white woman will live 19.5 years; a 65 year old black man can expect to live another 14.6 years; and at age 65, a black woman will, on average, live for 18.3 years (see Health United States, 2005). Since these are averages, some people will live less long, and others a good deal longer.

Fidelity’s estimate assumes the couple will enroll in Medicare but have no supplementary employee health insurance coverage. Increasingly, corporations are discontinuing their medical care coverage for retirees in order to save money, so couples should not count on having such benefits. Out-of-pocket medical costs are the single largest expense for most retired couples, so start saving now!

The New Presidential Ethics Commission Report

You may never have heard of a national bioethics commission. At best, such commissions can perform a valuable synthetic function, summarizing the best current thinking on a controversial ethical topic. The 2 reports of the President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, one on defining death and one on decisions to forgo life-sustaining treatment, did exactly that. As Alexander Morgan Capron comments in his article, “Governmental Bioethics Commissions: the Nature of the Beast,” (Lahey Clinic, Fall, 2002) these reports were successful because they “built a bridge connecting the legislative and executive branches, experts and academics in science, philosophy and law, and the general public,” resulting in the adoption of better policies. Regrettably, the current “President’s Council on Bioethics,” appointed by President George W. Bush and chaired by Dr. Leon Kass, has not served as a forum for public discussion of controversial issues, but rather as support for the president’s political agenda (for a discussion of how this problem could be remedied, see Arthur Caplan’s article, “Free the National Bioethics Commission”.)

The newest report, “Taking Care: Ethical Caregiving in Our Aging Society,” (September, 2005) has unfortunately adopted the ideological coloring of the executive branch. Taking Care is important in recognizing that one of the major challenges our society faces is how best to deal with the growing elderly population, many of whom will develop dementia. It makes the critical point that dementia in particular and frailty in general are unlikely to disappear any time soon. But the ideological driving force behind the report is the belief that euthanasia and assisted suicide are “antithetical to ethical caregiving” and “should always be opposed.” The report devotes one of its four chapters to a tirade against advance directives. The authors seem to think that the purpose of advance directives is to enable patients to decide, at the first sign of incipient frailty, to end their lives by forgoing life sustaining treatment. They envisage long lines of patients clamoring for physician assisted suicide. In fact, in Oregon, the one state where PAS is legal, a total of 33 people availed themselves of it in 2004, accounting for less than one-eighth of one percent of the deaths in that state. And advance directives, for all their flaws and limitations, have as their goal to enable prospective patients to avoid unwanted, burdensome, and often near-futile treatment near the end of life.

The report is also disturbing in its excessive focus on family caregivers. Having attacked individual autonomy as inadequate, Taking Care endorses family responsibility for the frail elderly. The relentless emphasis on individual responsibility that characterizes much of modern biomedical ethics may indeed be inadequate to address the situation of impaired elders. But surely a more communitarian vision warrants consideration—a society in which we build nursing homes and assisted living facilities that are truly resident-centered, rather than “total institutions,” a society in which we develop a system of health insurance that includes long term care and that provides excellent treatment for chronic as well as acute conditions, and in which we find ways to enable people to remain engaged and contributing citizens, even if they have problems with their hearing, their vision, their memory, or their walking. Taking Care seems to echo the party line that “family values” are paramount. Let us hope that this report receives the disregard it deserves.