At 43 pages, the newly released report from the Alzheimer’s Association, “Alzheimer’s Disease Facts and Figures.” is 50% longer than last year’s report and every bit as alarming ( www.alz.org/national/documents/report_alzfactsfigures2008.pdf). Today, 5.2 million Americans have Alzheimer’s disease. By 2050, between 11 million and 16 million people will be afflicted unless medical science finds a way to prevent or treat this progressive, ultimately fatal brain disease.
To its credit, the report shies away from hyperbole. Under the heading of treatment and prevention, the authors state unequivocally: “No treatment is available to delay or stop the deterioration of brain cells in Alzheimer’s disease.” They add that while the FDA has approved five drugs for the treatment of Alzheimer’s, these drugs “temporarily slow worsening symptoms for about six to 12 months, on average, for about half of the individuals who take them,” hardly a ringing endorsement for pharmacologic treatment.
Recognizing that one of the major challenges in providing for individuals with dementia is who will take care of them, the report features a major section on family caregiving. Close to 10 million family members, friends, and neighbors provide unpaid care for a person with dementia in the U.S. today. All told, they contribute an estimated 8.4 billion hours of care per year. The impact on the caregivers’ emotional well-being, health, employment, and financial security is considerable. The need for caregivers—paid and unpaid, family and professional—is reaching crisis proportions. The report only hints at the magnitude of the problem (see the President’s Council on Bioethics, Taking Care: Ethical Caregiving in Our Aging Society, 2005, www.bioethics.gov/reports/taking_care/taking_care.pdf)
But the most striking statistics in this number-laden report are those relating to hospitalization rates—and costs—for individuals with dementia. Medicare beneficiaries over age 65 with dementia are 3.4 times more likely to be hospitalized each year than are their non-demented counterparts. Looked at differently, this means that 25% of older patients in American hospitals at any point in time have dementia. Not surprisingly, annual Medicare costs for those with dementia are high: $13,207 per person compared to $4,454 per non-demented person. This discrepancy is directly attributable to the disproportionately high rate of hospitalization. But not only are people with dementia at high risk of hospitalization, once they’re in the hospital, they cost Medicare 3.2 times more than other patients: they have more complex diseases, undergo more procedures, and stay in the hospital longer.
The data on hospitalization rates are extraordinary because it is far from clear that it makes sense to subject individuals with dementia to frequent and lengthy hospitalizations. The more advanced their dementia, the more frightening the experience of being in a strange place, cared for by a new and unfamiliar nurse every eight hours—and the less they have to gain. In one study of survival after hospitalization, for example, 55% of patients with dementia and a hip fracture were dead in six months, compared to 12% without dementia treated for a hip fracture, and 53% of patients with dementia and pneumonia were dead in six months, compared to 13% of those without dementia treated for pneumonia (RS Morrison, A Siu, “Survival in End-Stage Dementia Following Acute Illness,” Journal of the American Medical Association 2000; 284: 47-52). These uncomprehending patients who are near the end of their lives endure intravenous injections, nasogastric tubes and other uncomfortable and scary procedures in exchange for a small chance of living ever so slightly longer in their demented state (S Mitchell, D Kiely, and MB Hamel, “Dying with Advanced Dementia in the Nursing Home,” Archives of Internal Medicine 2004; 164:321-6). Surely the burdens of invasive treatment outweigh the benefits. A palliative approach to care, focusing on comfort rather than a misguided attempt to increase longevity, makes sense.
The report concludes by noting that the lifetime risk of developing dementia is 21% for women and 14% for men, assuming they live to be at least 55. A low fat diet, rich in fruits and vegetables, may attenuate these stark numbers slightly, as may a vigorous social network. Research into drugs and vaccines to delay the onset of dementia or treat the disease once it develops is thriving and may yet produce a magic bullet that dramatically alters the odds of dying of dementia. But in the mean time, we need to overhaul the prevailing approach to the care of individuals who have this devastating disease. It’s one of the few areas of medicine in which doing the right thing actually has the potential to save money.
March 27, 2008
January 24, 2008
MiniClinics on the March: Politics, Policy, and the Public's Health
In the ten months that I have served on the Massachusetts Public Health Council, no issue has been more contentious than “limited service clinics,” quickie drop-in offices offering treatment of minor illnesses that will be located primarily in pharmacies and staffed by nurse practitioners. The 15-member council, which is empowered to help shape health care policy in Massachusetts, has approved expensive new scanners, multi-million dollar outpatient buildings, and the creation of additional hospital beds with scarcely a whimper of protest. Many of these capital expenditures will predictably drive up health care costs in the state of Massachusetts, potentially threatening outlays for services essential to the health and well-being of the citizens of the Commonwealth. The benefit accruing from these capital investments is not subject to scrutiny.
The regulations that will permit the introduction of limited service clinics in Massachusetts, by contrast, provoked a storm of protest. Council members were deluged with petitions from interested parties—primarily physician groups arguing against this form of medical practice. The Council spent the better part of two of its monthly meetings debating the issue. But was the issue really the regulations—the Department of Public Health did an admirable job of developing detailed regulations that conformed to the proposed regulations developed by the American Academy of Family Physicians—or rather the belief of a variety of interest groups that mini-clinics are dangerous because they offer episodic care rather than coordinated care, they will be staffed by nurse practitioners rather than physicians, they will tend to be for-profit, and many will be located in drug stores, which sell cigarettes. Do any of these concerns hold up?
Nothing but the best…
Ideally, if you live in Massachusetts, you have your own primary care physician. Not only that, but you have ready access to that physician—no week-long waits for an appointment, no 2-hour waits to be seen even if you have an appointment. In the best all of all worlds, if you are elderly and have multiple chronic illnesses, you have coordinated care, facilitated by a case manager (see R. Bernabei et al, “Randomised Trial of Impact of Model of Integrated Care and Case Management for Older People Living in Community,” British Medical Journal 1998; 316: 1348-1352). You also have health insurance coverage to pay for your visit to the physician. And if you happen not to be a resident, but merely visiting the state, you are able to find a primary care practice ready and willing to accommodate you if you happen to get sick while you’re here.
The reality is very different. Massachusetts has a shortage of primary care doctors. Generalists don’t want to move to the state, where salaries are below the national average and the cost of living is well above the national average. Despite the recent initiative to require health insurance for all residents, not everyone has coverage. “Coverage” may include substantial co-payments and deductibles. Thousands of patients throng to emergency rooms for care every day—where the wait to be seen is usually measured in hours, not minutes.
The fix for these problems is complex. And it’s not a problem that Massachusetts can solve alone—nation-wide, primary care is in a slump. The number of young physicians going into primary care is declining every year, and the reasons range from high student loans to fear of litigation, with a dozen other factors in between that adversely affect physicians’ willingness to practice general medicine.
Over the short term, limited service clinics can help. They provide an alternative way for patients to get treatment for straightforward problems such as sore throats and sprained ankles. They can administer flu shots and help tourists with a rash or a stomach bug. With suitable regulatory oversight, mini-clinics can improve the public’s health.
The NP/Physician Wars
Physicians have been suspicious of the care provided by nurse practitioners for years. But the evidence is that in the arenas where NPs work, they often do at least as good a job as physicians. A study by Mary Mundinger et al (“Primary Care Outcomes in Patients Treated by Nurse Practitioners or Physicians: A Randomized Trial,” Journal of the American Medical Association 2000; 283: 59-68), found no differences in outcomes or satisfaction among over 3000 adults, some of whom received care from NPs and some from MDs—except in the case of management of high blood pressure, where NPs performed better. In data specifically on limited service clinics released as part of the Minnesota Health Care Quality Report, the NP-run clinics received a 100% rating for the treatment of sore throat in the pediatric population in 2006. When I randomly chose a not-for-profit clinic operating in the same Minnesota county to compare to Minute Clinic, I found it had a 72% rating on the sore throat treatment indicator (see mnhealthcare.org).
NPs always have MD back-up and supervision. It’s a condition of their licensure. But that doesn’t mean a doctor must be on the premises. NPs have been providing high quality care in nursing homes (where doctors often fear to tread) for years, as well as in hospices and in patients’ homes. There is no reason to worry they will misdiagnose or mistreat the routine ailments that will come to their attention in mini-clinics.
Big bad for-profit health care…
Many health care institutions throughout the United States are for-profit. There are for-profit HMOs, for-profit hospitals, and for-profit physician group practices, among others. The data on the effect of for-profit status on the quality of care is mixed. A National Bureau of Economic Research Conference Report comparing for-profit hospitals to not-for-profit hospitals found evidence that in some situations, for-profit hospitals are higher quality than not for profit hospitals (David Cutler, ed, The Changing Hospital Industry: Comparing Not-for-Profit and For-Profit Institutions, Chicago: University of Chicago Press, 2000). On the other hand, a study comparing health plans found for-profit plans performed less well than not-for-profit plans on 3 out of 4 quality indicators (EL Schneider et al, “Quality of Care in For-Profit and Not-for-Profit Health Plans Enrolling Medicare Beneficiaries,” American Journal of Medicine 2005; 118: 1392-1400).
For-profit health care is no stranger to Massachusetts. We have for-profit nursing homes. We have for-profit hospices. There is no justification for dismissing limited service clinics simply because many of them will be owned and operated by CVS.
It’s an outrage to have a health care clinic within a facility that sells cigarettes…
Cigarettes are one of the leading causes of some of the major killers: coronary heart disease, emphysema, and lung cancer. Clearly, the Massachusetts Department of Public Health needs to be concerned with strategies to decrease cigarette smoking and to prevent young people from starting to smoke in the first place. But we do not ban the sale of cigarettes outright. We do not tax cigarettes enough to make them unaffordable to all but the very rich. And we do not prevent drug stores that sell prescription drugs for the treatment of coronary heart disease, emphysema, and lung cancer from also selling cigarettes. I fail to see why we should prevent those same drug stores from housing a health clinic.
The bottom line
I hope that some day all patients in Massachusetts have access to top notch primary care. In particular, I hope that frail geriatric patients will have the kind of integrated care that I believe is best achieved through a case-managed, capitated health plan. In fact, I hope that there will be so little demand for mini-clinics that they disappear. But for the moment, I suspect they will provide a valuable service for many sick people in Massachusetts.
It is time for policy makers to pay at least as much attention to the rising cost of health care and its potentially dire consequences as to mini-clinics. Just this morning the Boston Globe reported that Governor Patrick has proposed a $28.2 billion budget that includes a 1.3 billion dollar budget gap, “created mainly by rising health care costs and decreased revenues.” The Congressional Budget Office recently released statistics indicating that barring any changes in policy, total spending on health care, which currently accounts for 16% of the Gross Domestic Project, will rise to 25% in 2025 and 37% in 2050. Federal spending on Medicare and Medicaid alone (net of beneficiaries’ premiums) is now 4% of GDP and will rise to 7% in 2025 and 12% in 2050 (see www.cbo.gov). Medicaid is a joint federal/state program: for every dollar spent by the federal government on Medicaid in Massachusetts, the state spends another dollar. And over the long run, as Medicare costs soar, the federal government will have less and less to spend on other programs that affect everyone, including Massachusetts residents.
The leading engine behind this unsustainable growth in spending is technology (See James Lubitz, “Health, Technology, and Medical Care Spending,” Health Affairs 2005; W5: R81-R85). While some forms of technology contribute much to health, others simply contribute to costs. Hospital beds, once built, will be used. But more is not always better. In a major study, Medicare enrollees living in high spending regions of the country received more care but did not have better health outcomes or greater satisfaction with their care (Elliott Fisher et al, “The Implications of Regional Variations in Medicare Spending: Health Outcomes and Satisfaction with Care,” Annals of Internal Medicine 2003; 138: 288-298).
The Public Health Council can do little more than rubber-stamp most of the requests it receives for substantial capital expansion. Massachusetts Determination of Need law does not permit the Public Health Council to do much other than review whether health care facilities submitting requests for substantial capital expenditures have engaged in the recommended planning process, whether they have developed the requisite community health services initiatives, and whether the proposed construction complies with existing standards. Ostensibly, the law is intended to “promote availability and accessibility of cost effective quality health care.” But the current statute promotes the evaluation of cost effectiveness without the ability to consider effectiveness. If Massachusetts is to have sound health policies, and if the PHC is to devote its time to the critical issues facing the state, the legislature will have to revamp the Determination of Need law of the Commonwealth.
The regulations that will permit the introduction of limited service clinics in Massachusetts, by contrast, provoked a storm of protest. Council members were deluged with petitions from interested parties—primarily physician groups arguing against this form of medical practice. The Council spent the better part of two of its monthly meetings debating the issue. But was the issue really the regulations—the Department of Public Health did an admirable job of developing detailed regulations that conformed to the proposed regulations developed by the American Academy of Family Physicians—or rather the belief of a variety of interest groups that mini-clinics are dangerous because they offer episodic care rather than coordinated care, they will be staffed by nurse practitioners rather than physicians, they will tend to be for-profit, and many will be located in drug stores, which sell cigarettes. Do any of these concerns hold up?
Nothing but the best…
Ideally, if you live in Massachusetts, you have your own primary care physician. Not only that, but you have ready access to that physician—no week-long waits for an appointment, no 2-hour waits to be seen even if you have an appointment. In the best all of all worlds, if you are elderly and have multiple chronic illnesses, you have coordinated care, facilitated by a case manager (see R. Bernabei et al, “Randomised Trial of Impact of Model of Integrated Care and Case Management for Older People Living in Community,” British Medical Journal 1998; 316: 1348-1352). You also have health insurance coverage to pay for your visit to the physician. And if you happen not to be a resident, but merely visiting the state, you are able to find a primary care practice ready and willing to accommodate you if you happen to get sick while you’re here.
The reality is very different. Massachusetts has a shortage of primary care doctors. Generalists don’t want to move to the state, where salaries are below the national average and the cost of living is well above the national average. Despite the recent initiative to require health insurance for all residents, not everyone has coverage. “Coverage” may include substantial co-payments and deductibles. Thousands of patients throng to emergency rooms for care every day—where the wait to be seen is usually measured in hours, not minutes.
The fix for these problems is complex. And it’s not a problem that Massachusetts can solve alone—nation-wide, primary care is in a slump. The number of young physicians going into primary care is declining every year, and the reasons range from high student loans to fear of litigation, with a dozen other factors in between that adversely affect physicians’ willingness to practice general medicine.
Over the short term, limited service clinics can help. They provide an alternative way for patients to get treatment for straightforward problems such as sore throats and sprained ankles. They can administer flu shots and help tourists with a rash or a stomach bug. With suitable regulatory oversight, mini-clinics can improve the public’s health.
The NP/Physician Wars
Physicians have been suspicious of the care provided by nurse practitioners for years. But the evidence is that in the arenas where NPs work, they often do at least as good a job as physicians. A study by Mary Mundinger et al (“Primary Care Outcomes in Patients Treated by Nurse Practitioners or Physicians: A Randomized Trial,” Journal of the American Medical Association 2000; 283: 59-68), found no differences in outcomes or satisfaction among over 3000 adults, some of whom received care from NPs and some from MDs—except in the case of management of high blood pressure, where NPs performed better. In data specifically on limited service clinics released as part of the Minnesota Health Care Quality Report, the NP-run clinics received a 100% rating for the treatment of sore throat in the pediatric population in 2006. When I randomly chose a not-for-profit clinic operating in the same Minnesota county to compare to Minute Clinic, I found it had a 72% rating on the sore throat treatment indicator (see mnhealthcare.org).
NPs always have MD back-up and supervision. It’s a condition of their licensure. But that doesn’t mean a doctor must be on the premises. NPs have been providing high quality care in nursing homes (where doctors often fear to tread) for years, as well as in hospices and in patients’ homes. There is no reason to worry they will misdiagnose or mistreat the routine ailments that will come to their attention in mini-clinics.
Big bad for-profit health care…
Many health care institutions throughout the United States are for-profit. There are for-profit HMOs, for-profit hospitals, and for-profit physician group practices, among others. The data on the effect of for-profit status on the quality of care is mixed. A National Bureau of Economic Research Conference Report comparing for-profit hospitals to not-for-profit hospitals found evidence that in some situations, for-profit hospitals are higher quality than not for profit hospitals (David Cutler, ed, The Changing Hospital Industry: Comparing Not-for-Profit and For-Profit Institutions, Chicago: University of Chicago Press, 2000). On the other hand, a study comparing health plans found for-profit plans performed less well than not-for-profit plans on 3 out of 4 quality indicators (EL Schneider et al, “Quality of Care in For-Profit and Not-for-Profit Health Plans Enrolling Medicare Beneficiaries,” American Journal of Medicine 2005; 118: 1392-1400).
For-profit health care is no stranger to Massachusetts. We have for-profit nursing homes. We have for-profit hospices. There is no justification for dismissing limited service clinics simply because many of them will be owned and operated by CVS.
It’s an outrage to have a health care clinic within a facility that sells cigarettes…
Cigarettes are one of the leading causes of some of the major killers: coronary heart disease, emphysema, and lung cancer. Clearly, the Massachusetts Department of Public Health needs to be concerned with strategies to decrease cigarette smoking and to prevent young people from starting to smoke in the first place. But we do not ban the sale of cigarettes outright. We do not tax cigarettes enough to make them unaffordable to all but the very rich. And we do not prevent drug stores that sell prescription drugs for the treatment of coronary heart disease, emphysema, and lung cancer from also selling cigarettes. I fail to see why we should prevent those same drug stores from housing a health clinic.
The bottom line
I hope that some day all patients in Massachusetts have access to top notch primary care. In particular, I hope that frail geriatric patients will have the kind of integrated care that I believe is best achieved through a case-managed, capitated health plan. In fact, I hope that there will be so little demand for mini-clinics that they disappear. But for the moment, I suspect they will provide a valuable service for many sick people in Massachusetts.
It is time for policy makers to pay at least as much attention to the rising cost of health care and its potentially dire consequences as to mini-clinics. Just this morning the Boston Globe reported that Governor Patrick has proposed a $28.2 billion budget that includes a 1.3 billion dollar budget gap, “created mainly by rising health care costs and decreased revenues.” The Congressional Budget Office recently released statistics indicating that barring any changes in policy, total spending on health care, which currently accounts for 16% of the Gross Domestic Project, will rise to 25% in 2025 and 37% in 2050. Federal spending on Medicare and Medicaid alone (net of beneficiaries’ premiums) is now 4% of GDP and will rise to 7% in 2025 and 12% in 2050 (see www.cbo.gov). Medicaid is a joint federal/state program: for every dollar spent by the federal government on Medicaid in Massachusetts, the state spends another dollar. And over the long run, as Medicare costs soar, the federal government will have less and less to spend on other programs that affect everyone, including Massachusetts residents.
The leading engine behind this unsustainable growth in spending is technology (See James Lubitz, “Health, Technology, and Medical Care Spending,” Health Affairs 2005; W5: R81-R85). While some forms of technology contribute much to health, others simply contribute to costs. Hospital beds, once built, will be used. But more is not always better. In a major study, Medicare enrollees living in high spending regions of the country received more care but did not have better health outcomes or greater satisfaction with their care (Elliott Fisher et al, “The Implications of Regional Variations in Medicare Spending: Health Outcomes and Satisfaction with Care,” Annals of Internal Medicine 2003; 138: 288-298).
The Public Health Council can do little more than rubber-stamp most of the requests it receives for substantial capital expansion. Massachusetts Determination of Need law does not permit the Public Health Council to do much other than review whether health care facilities submitting requests for substantial capital expenditures have engaged in the recommended planning process, whether they have developed the requisite community health services initiatives, and whether the proposed construction complies with existing standards. Ostensibly, the law is intended to “promote availability and accessibility of cost effective quality health care.” But the current statute promotes the evaluation of cost effectiveness without the ability to consider effectiveness. If Massachusetts is to have sound health policies, and if the PHC is to devote its time to the critical issues facing the state, the legislature will have to revamp the Determination of Need law of the Commonwealth.
December 19, 2007
Going for Broke
It’s official: combined federal spending on Medicare and Medicaid has reached 4.6% of the Gross Domestic Product (GDP), up from 4.2% in 2005, and on track to reach 5.9% in 2017 and a whopping 20% in 2050. These sobering estimates come from the Congressional Budget Office, not from a fringe radical group or an ultra-conservative think tank (see Peter Orszag and Philip Elis, “The Challenge of Rising Health Care Costs—A View from the Congressional Budget Office,” New England Journal of Medicine 2007; 357: 1793-5). At this rate, just about half of every tax dollar will go to fund these two programs by mid-century. This rate of expenditure is simply unsustainable—it would drive out support for education, roads, and parks, not to mention national security. Expenditures on Medicare will have to be cut and cut substantially. The biggest challenge for the future health of the baby boomers is how to restructure Medicare to provide good care at an affordable price.
The trick will be to put the brakes on technology, because it is the development and diffusion of new medical technology that has repeatedly been shown to be the engine fueling the growth in costs (for example, see L. Lubitz, “Health, Technology, and Medical Care Spending,” Health Affairs 2005; W5: R81-R85). To control technology without stifling progress, we will need to figure out to a far greater extent than we do today just how much benefit an innovation provides and to whom. Right now physicians and patients embrace technology—and Medicare pays for it—if the intervention has been shown to be beneficial, regardless of how small the benefit relative to either its cost or to alternative treatments. The effect of this strategy is that some regions of the country spend three times as much per Medicare enrollee as other areas with no discernible benefit in any health outcome (see the Dartmouth Atlas of Health Care, www.dartmouthatlas.org).
We will also have to recognize that older people are not a homogeneous population, and technology that is beneficial for one person may not help—or may even hurt—another. Accepting that different people benefit from different approaches to care, not just because they have different values and preferences but because of their underlying health status, will require a shift in our thinking. What we will need to do is to design different “pathways of care” for older individuals depending on whether they are robust, frail, or dying. The robust should receive something like today’s Medicare program; the frail, whether suffering from physical or cognitive frailty, should get less high tech and more disease management and home care; and the dying should all have palliative care resembling today’s hospice program.
Designing new approaches to care that are tailored to meet the needs of particular patients will enable the baby boomers to have a good old age: they will be offered technology when it can make a substantial contribution to health and well-being but will not subjected to invasive and painful technology when it is of little or no benefit. This is precisely the strategy we need in order to save ourselves from financial ruin. It also happens to be a compassionate and appropriate way to provide medical care to the elderly.
The trick will be to put the brakes on technology, because it is the development and diffusion of new medical technology that has repeatedly been shown to be the engine fueling the growth in costs (for example, see L. Lubitz, “Health, Technology, and Medical Care Spending,” Health Affairs 2005; W5: R81-R85). To control technology without stifling progress, we will need to figure out to a far greater extent than we do today just how much benefit an innovation provides and to whom. Right now physicians and patients embrace technology—and Medicare pays for it—if the intervention has been shown to be beneficial, regardless of how small the benefit relative to either its cost or to alternative treatments. The effect of this strategy is that some regions of the country spend three times as much per Medicare enrollee as other areas with no discernible benefit in any health outcome (see the Dartmouth Atlas of Health Care, www.dartmouthatlas.org).
We will also have to recognize that older people are not a homogeneous population, and technology that is beneficial for one person may not help—or may even hurt—another. Accepting that different people benefit from different approaches to care, not just because they have different values and preferences but because of their underlying health status, will require a shift in our thinking. What we will need to do is to design different “pathways of care” for older individuals depending on whether they are robust, frail, or dying. The robust should receive something like today’s Medicare program; the frail, whether suffering from physical or cognitive frailty, should get less high tech and more disease management and home care; and the dying should all have palliative care resembling today’s hospice program.
Designing new approaches to care that are tailored to meet the needs of particular patients will enable the baby boomers to have a good old age: they will be offered technology when it can make a substantial contribution to health and well-being but will not subjected to invasive and painful technology when it is of little or no benefit. This is precisely the strategy we need in order to save ourselves from financial ruin. It also happens to be a compassionate and appropriate way to provide medical care to the elderly.
November 01, 2007
The Truth About Hospitals
In a bold move intended to foster quality care, the Massachusetts Hospital Association has begun posting data on its web site about the risks patients face if they are hospitalized,. Specifically, it reports on falls, on falls which cause injury, on surgical infections, and on the care for several conditions, including pneumonia, heart failure, and a heart attack. The new site is called Patients First (www.patientsfirstma.org) and it is intended to “educate people so they can make better decisions,” accorded to the senior vice president of the Institute for Health Improvement, which helped develop the new approach. Will this strategy in fact help patients decide where to seek their care? Is it a good idea?
It’s hard to imagine a patient in the throes of a heart attack checking out the web site to see which hospital in his area performs best. Odds are that the ambulance will take him to the nearest facility, regardless of his preferences. Moreover, most patients choose a physician, not a hospital, and accept that they will be hospitalized at whatever facility their physician practices.
Even if an individual patient did consult the web site to learn more about the hospital where his doctor worked, he would be hard pressed to draw any useful conclusions from the data presented. Take falls as an example. If you look up the hospital where I care for patients, the Brigham and Women’s Hospital, (BWH) you will find two different graphs, one showing the number of falls per 1000 patient-days, the other showing the number of falls with injuries per 1000 patient-days. In each category, you will find a rate for the medical floors, one for the intensive care units, another for combined medical-surgical units, a rate for step-down units, and still another rate for exclusively surgical floors. And for each location, you will see the BWH rate over a 6-month period compared to the “peer group average.”
I wanted to know how likely my patients are to fall and get hurt if they are on a medical floor at the BWH. What I learned is that the hospital has 0.96 injurious falls/1000 patient-days compared to the peer group average of 0.76. Presumably this means that the BWH is worse than average. But how much worse? Are the rates significantly different? Are the patients at the BWH comparable to the patients cared for in the “peer group” hospitals? What is the peer group anyway?
To get the answers to all these questions, you need to go to the Appendix, a 67 page document (also available on line) that describes the methodology on which the numbers are based. Hospitals are grouped according to size, so the BWH is lumped with all hospitals in Massachusetts having over 500 beds. That means Boston Medical Center, Massachusetts General Hospital, the Beth Israel Deaconess Medical Center, and the University of Massachusetts Medical Center. You can also find the confidence intervals for the rates reported, the statistical measure you need in order to figure out whether a given facility’s rate is significantly different from the rates at the other facilities. What you learn is that in fact, there is no significant difference between the BWH rate and the peer group average. In fact, if you look up the data for each of the hospitals with more than 500 beds, you will find that they all have equivalent rates, except Boston Medical Center, which does a bit less well.
What is also buried in the appendix is that that the fall rate of 0.96/1000 patient-days on the medical units at the BWH is based on a grand total of 2 falls that occurred in 2084 patient days. I wouldn’t want to draw any inferences based on 2 cases.
You might conclude that I don’t think much of this idea of publicly displaying data relating to quality of care. Actually, I think it’s an excellent idea, but not because it will help patients make choices. It’s a good idea because hospitals compete with each other and knowing how your neighbor is doing will stimulate you to do better. Above all, it’s a good idea because it helps hold hospitals accountable for the care they give and it encourages each facility to compete with itself to do better.
Of all the hospitals whose performance data is reported, I noticed only one that posted a comment about its own statistics. The Beth Israel Deaconess Hospital in Boston went beyond the numbers to say that starting in May, 2007 they developed and implemented an enhanced program for identifying patients at risk of falling. Their study teams discovered that the middle of the night is a particularly risky time. They responded to this observation by instituting a program of frequent checks at night. They also found that patients often fall when left unattended in the bathroom and have made efforts to ensure that high risk patients are not unsupervised in the bathroom.
This is exactly how hospitals should be responding to data. The BIDMC, it turns out, is way ahead of the curve. Spearheaded by its president, Paul Levy, the hospital has its own web site for reporting data. Called “Putting Ourselves Under a Microscope,” this site reports data on many of the same indicators as the Massachusetts Hospital Association. (www.bidmc.harvard.edu/thefacts)
The BIDMC compares its performance to a national average and to its own previous performance. And it sets targets for improvement, with a plan for how to achieve the targets. Now that’s impressive.
It’s hard to imagine a patient in the throes of a heart attack checking out the web site to see which hospital in his area performs best. Odds are that the ambulance will take him to the nearest facility, regardless of his preferences. Moreover, most patients choose a physician, not a hospital, and accept that they will be hospitalized at whatever facility their physician practices.
Even if an individual patient did consult the web site to learn more about the hospital where his doctor worked, he would be hard pressed to draw any useful conclusions from the data presented. Take falls as an example. If you look up the hospital where I care for patients, the Brigham and Women’s Hospital, (BWH) you will find two different graphs, one showing the number of falls per 1000 patient-days, the other showing the number of falls with injuries per 1000 patient-days. In each category, you will find a rate for the medical floors, one for the intensive care units, another for combined medical-surgical units, a rate for step-down units, and still another rate for exclusively surgical floors. And for each location, you will see the BWH rate over a 6-month period compared to the “peer group average.”
I wanted to know how likely my patients are to fall and get hurt if they are on a medical floor at the BWH. What I learned is that the hospital has 0.96 injurious falls/1000 patient-days compared to the peer group average of 0.76. Presumably this means that the BWH is worse than average. But how much worse? Are the rates significantly different? Are the patients at the BWH comparable to the patients cared for in the “peer group” hospitals? What is the peer group anyway?
To get the answers to all these questions, you need to go to the Appendix, a 67 page document (also available on line) that describes the methodology on which the numbers are based. Hospitals are grouped according to size, so the BWH is lumped with all hospitals in Massachusetts having over 500 beds. That means Boston Medical Center, Massachusetts General Hospital, the Beth Israel Deaconess Medical Center, and the University of Massachusetts Medical Center. You can also find the confidence intervals for the rates reported, the statistical measure you need in order to figure out whether a given facility’s rate is significantly different from the rates at the other facilities. What you learn is that in fact, there is no significant difference between the BWH rate and the peer group average. In fact, if you look up the data for each of the hospitals with more than 500 beds, you will find that they all have equivalent rates, except Boston Medical Center, which does a bit less well.
What is also buried in the appendix is that that the fall rate of 0.96/1000 patient-days on the medical units at the BWH is based on a grand total of 2 falls that occurred in 2084 patient days. I wouldn’t want to draw any inferences based on 2 cases.
You might conclude that I don’t think much of this idea of publicly displaying data relating to quality of care. Actually, I think it’s an excellent idea, but not because it will help patients make choices. It’s a good idea because hospitals compete with each other and knowing how your neighbor is doing will stimulate you to do better. Above all, it’s a good idea because it helps hold hospitals accountable for the care they give and it encourages each facility to compete with itself to do better.
Of all the hospitals whose performance data is reported, I noticed only one that posted a comment about its own statistics. The Beth Israel Deaconess Hospital in Boston went beyond the numbers to say that starting in May, 2007 they developed and implemented an enhanced program for identifying patients at risk of falling. Their study teams discovered that the middle of the night is a particularly risky time. They responded to this observation by instituting a program of frequent checks at night. They also found that patients often fall when left unattended in the bathroom and have made efforts to ensure that high risk patients are not unsupervised in the bathroom.
This is exactly how hospitals should be responding to data. The BIDMC, it turns out, is way ahead of the curve. Spearheaded by its president, Paul Levy, the hospital has its own web site for reporting data. Called “Putting Ourselves Under a Microscope,” this site reports data on many of the same indicators as the Massachusetts Hospital Association. (www.bidmc.harvard.edu/thefacts)
The BIDMC compares its performance to a national average and to its own previous performance. And it sets targets for improvement, with a plan for how to achieve the targets. Now that’s impressive.
October 25, 2007
Don't Fall for It
In an earlier posting, “Break a Leg,” I recommended that frail older people use hip protectors to prevent hip fractures. The data, at that time, were suggestive but not conclusive. A recent study, unfortunately, definitively argues against the benefits of hip pads. In an article published in the Journal of the American Medical Association, Dr. Douglas Kiel and his colleagues reported on a large randomized trial that used a very elegant approach to answer a difficult and important question (D Kiel, J Magaziner, S Zimmerman et al, “Efficacy of a Hip Protector to Prevent Hip Fracture in Nursing Home Residents,” Journal of the American Medical Association 2007; 298: 413-422).
Earlier studies were plagued by all sorts of problems: people didn’t like wearing the hip pads, leading to what was called “poor compliance,” making it hard to analyze the results. The hip pads studied were made of differing materials and some of the pads may actually have increased the chance that a fall would cause an injury to the hip bone itself rather than merely to the surrounding soft tissue. This new study used a hip protector that had been shown to have the desired biomechanical properties. It was conducted in nursing homes, where the frailest elders live, the people with the highest risk of falling and fracturing a hip. And the investigators did something very ingenious: they used each nursing home resident as his own control. Every individual in the study wore a one-sided hip pad on either the right or left hip. The researchers would then observe all the residents over time to see whether the protected hip was any less likely to be fractured than the unprotected hip.
The study was carried out in 1042 individuals with a mean age of 85 who lived in one of 37 nursing homes located in Massachusetts, Missouri, or Maryland. What the authors found was that the nursing home residents were just as likely to fracture the protected hip as the unprotected one. In fact, the study was stopped early because preliminary evidence was so overwhelming that the hip pads, contrary to everyone’s hopes and expectations, simply did not work. Even when the analysis was restricted to the 334 nursing home residents who wore the pad more than 80% of the time, there was still no difference in fracture rates between the protected and the unprotected hip.
It would have been great to be able to say, at last, that hip pads really work. But at least we now have the necessary information with which to conclude that they don’t. Now we know that we shouldn’t spend money on hip pads. I have to retract my earlier recommendation. It’s time to look for other strategies.
Earlier studies were plagued by all sorts of problems: people didn’t like wearing the hip pads, leading to what was called “poor compliance,” making it hard to analyze the results. The hip pads studied were made of differing materials and some of the pads may actually have increased the chance that a fall would cause an injury to the hip bone itself rather than merely to the surrounding soft tissue. This new study used a hip protector that had been shown to have the desired biomechanical properties. It was conducted in nursing homes, where the frailest elders live, the people with the highest risk of falling and fracturing a hip. And the investigators did something very ingenious: they used each nursing home resident as his own control. Every individual in the study wore a one-sided hip pad on either the right or left hip. The researchers would then observe all the residents over time to see whether the protected hip was any less likely to be fractured than the unprotected hip.
The study was carried out in 1042 individuals with a mean age of 85 who lived in one of 37 nursing homes located in Massachusetts, Missouri, or Maryland. What the authors found was that the nursing home residents were just as likely to fracture the protected hip as the unprotected one. In fact, the study was stopped early because preliminary evidence was so overwhelming that the hip pads, contrary to everyone’s hopes and expectations, simply did not work. Even when the analysis was restricted to the 334 nursing home residents who wore the pad more than 80% of the time, there was still no difference in fracture rates between the protected and the unprotected hip.
It would have been great to be able to say, at last, that hip pads really work. But at least we now have the necessary information with which to conclude that they don’t. Now we know that we shouldn’t spend money on hip pads. I have to retract my earlier recommendation. It’s time to look for other strategies.
October 15, 2007
A New Test for Alzheimer's Disease: Hype or Hope?
The New York Times reported today on “a blood test” for Alzheimer’s disease (Andrew Pollack, “Progress Cited in Alzheimer’s Diagnosis,” NYT October 15, 2007). Is there actually such a test? If not, is one imminent?
Don’t hold your breath. I’m old enough to remember the eye drop test for Alzheimer’s and the skin biopsy for Alzheimer’s, neither of which panned out, not to mention the serum beta amyloid test and a few spinal fluid tests. What the news media are reporting appeared in the on-line edition of Nature Medicine yesterday in a letter-to-the-editor, not in a peer-reviewed article (Sandip Ray, Markus Britschgi, Charles Herbert et al, “Classification and Prediction of Clinical Alzheimer’s Diagnosis Based on Plasma Signaling Proteins,” Nature Medicine online, October 14, 2007). This means the findings have not been written up in an article and subjected to careful scrutiny by other scientists who are experts in the field. The letter, penned by 25 scientists, notes that the group has been studying over 100 different proteins found in the blood of patients with a diagnosis of Alzheimer’s disease to see if some combination of them might serve as a diagnostic test. They have found that a particular pattern involving 18 different proteins successfully classified 8 out of 9 patients with Alzheimer’s disease (confirmed at autopsy) as having the condition. The results, while interesting, are far too preliminary to be of interest to the general public.
If we did have a test that could accurately diagnose Alzheimer’s disease, would it matter to the millions of people with cognitive impairment and their families? Probably not. Right now, physicians can already diagnose Alzheimer’s disease with 90% accuracy, based on a careful history and physical examination together with existing laboratory tests. Even more crucial, while it is useful to diagnose dementia (whatever the cause) so as to begin planning for the future, it’s only important to distinguish Alzheimer’s disease from other forms of dementia to the extent that we have good treatments specific to Alzheimer’s. Today, the only “treatment” we have for early Alzheimer’s disease is a group of drugs known as cholinesterase inhibitors—drugs such as Donepezil (Aricept). This medicine can temporarily improve cognitive function a very modest amount. Its effectiveness is so questionable that the British NICE (National Institute for Health and Clinical Excellence) recommends against its use in patients with mild dementia (see my earlier blog posting, “Americans, Alzheimer’s, and Aricept,” February, 2006). It doesn’t cause any harm if it’s administered to patients who prove to have a non-Alzheimer’s dementia, such as vascular dementia.
One day, when we have good treatments for early Alzheimer’s disease, it will be important to make the diagnosis early and accurately. Today, what a good doctor can do is good enough.
Don’t hold your breath. I’m old enough to remember the eye drop test for Alzheimer’s and the skin biopsy for Alzheimer’s, neither of which panned out, not to mention the serum beta amyloid test and a few spinal fluid tests. What the news media are reporting appeared in the on-line edition of Nature Medicine yesterday in a letter-to-the-editor, not in a peer-reviewed article (Sandip Ray, Markus Britschgi, Charles Herbert et al, “Classification and Prediction of Clinical Alzheimer’s Diagnosis Based on Plasma Signaling Proteins,” Nature Medicine online, October 14, 2007). This means the findings have not been written up in an article and subjected to careful scrutiny by other scientists who are experts in the field. The letter, penned by 25 scientists, notes that the group has been studying over 100 different proteins found in the blood of patients with a diagnosis of Alzheimer’s disease to see if some combination of them might serve as a diagnostic test. They have found that a particular pattern involving 18 different proteins successfully classified 8 out of 9 patients with Alzheimer’s disease (confirmed at autopsy) as having the condition. The results, while interesting, are far too preliminary to be of interest to the general public.
If we did have a test that could accurately diagnose Alzheimer’s disease, would it matter to the millions of people with cognitive impairment and their families? Probably not. Right now, physicians can already diagnose Alzheimer’s disease with 90% accuracy, based on a careful history and physical examination together with existing laboratory tests. Even more crucial, while it is useful to diagnose dementia (whatever the cause) so as to begin planning for the future, it’s only important to distinguish Alzheimer’s disease from other forms of dementia to the extent that we have good treatments specific to Alzheimer’s. Today, the only “treatment” we have for early Alzheimer’s disease is a group of drugs known as cholinesterase inhibitors—drugs such as Donepezil (Aricept). This medicine can temporarily improve cognitive function a very modest amount. Its effectiveness is so questionable that the British NICE (National Institute for Health and Clinical Excellence) recommends against its use in patients with mild dementia (see my earlier blog posting, “Americans, Alzheimer’s, and Aricept,” February, 2006). It doesn’t cause any harm if it’s administered to patients who prove to have a non-Alzheimer’s dementia, such as vascular dementia.
One day, when we have good treatments for early Alzheimer’s disease, it will be important to make the diagnosis early and accurately. Today, what a good doctor can do is good enough.
October 03, 2007
August 07, 2007
Putting the Brakes on Technology
In a dramatic twist of fate, one of the world’s premier heart surgeons recently underwent cardiac surgery utilizing a technique he had devised, at the hospital where he had practiced. What gave the story added interest was that the surgeon, Dr. Michael DeBakey, was 97 years old at the time of the operation, and it was carried out against his express wishes.
As is recommended for all patients, Dr. DeBakey had an advance directive: he had stated, while in good health, what approach to medical care he would want if he became ill and was unable to speak for himself. He specifically indicated that he would not want to undergo major surgery. A cardinal principle of contemporary medical ethics is that it is the right of patients to make just this sort of decision and the obligation of physicians to follow their wishes. To respect a patient’s preferences as long as he is able to speak for himself—as happened with Dr. DeBakey during the nearly six weeks following the onset of symptoms—and then to disregard those wishes once the patient loses the ability to make decisions—as occurred when Mrs. DeBakey reportedly stormed into a late night hospital ethics committee meeting and demanded that the surgery take place—violates the hard-won respect for their autonomy that patients have gained over the past twenty years.
Much of the commentary about the case has centered on whether a patient’s wishes can be overridden, even by loving family members. What has largely been left out of the discussion is whether it is ever appropriate to perform invasive, dangerous, and expensive surgery on 97-year olds—even if they want it.
The operation performed on Michael DeBakey involved putting him on cardiac bypass and opening the aorta, the artery that carries blood from the heart to most of the major organs of the body. The damaged part of the aorta was then replaced with a synthetic graft. The risks were high—in a group of elderly patients who had the procedure, the oldest of whom was 77, 18% died. Moreover, simply surviving the surgery does not mean returning to one’s usual state of health in a matter of a few weeks. It typically means, as DeBakey experienced and as his physicians anticipated, an extended hospitalization marked by reliance on machines, marred by multiple complications, and fraught with considerable suffering. Dr. DeBakey spent three months in the hospital, much of the time unable to speak or eat, let along get out of bed, read, or interact with others. He was attached to one machine for breathing and to another machine to clear wastes from his system. He was fed through a stomach tube. The cost of his hospital stay is estimated to have exceeded one million dollars.
Dr. DeBakey is glad to be alive—and I am delighted for him that he survived his ordeal. But how many people should we subject to the grueling treatment DeBakey endured for a chance of a few more weeks or months of life? Is it reasonable for 99 or perhaps 999 people to suffer for days or months, only to die from complications of the surgery, because very occasionally, one person might live?
The number of potentially life-prolonging technologies offered by contemporary medicine is proliferating rapidly. The implantable cardioverter defibrillator jolts the heart back to normal if an irregular, life-threatening rhythm develops in patients who have had a heart attack. The left ventricular assist device is a partial artificial heart used in patients dying of heart failure. Sophisticated biopharmaceuticals created by biotechnology are also multiplying, drugs typically used in patients with extremely advanced cancers. Some of these technologies offer a chance of additional months or even years of life to people in their prime; but do they make sense, especially when they are invasive and costly, in the oldest old?
When the baby boomers begin turning 65 in the year 2010, they will account for 13% of the U.S. population; by 2050, they will make up 20.6% of the population. Medicare expenditures for this group—the money spent by the government insurance program for the elderly alone—are projected to soar from the current 2.6% of the Gross Domestic Product to 9.2% in 2050, and technology will account for over 50% of the increase in costs. If we are to have the resources to spend on public goods other than health care—on education, on national parks, on highways—not to mention to spend on medical care for poor people and for children—we need to put the brakes on technology.
In a rich country like the U.S., this does not have to mean rationing care based on age alone. But surely the place to start is to limit treatment that is burdensome and expensive, that has a miniscule chance of success, and that is proposed in someone who is at the very end of life. We need to accept human mortality and, as a matter of practice and of policy, concentrate on improving the quality of life of older people. This means assuring compassionate nursing home care, coordinated management of chronic diseases, and competent palliative care as death approaches, rather than using ever more technology to try to eke out a little more life. And it means systematically considering cost and life-expectancy in decisions about reimbursing high technology medical care.
An abridged version of this article appeared on Project Syndicate (www.project-syndicate.org). It was translated into 7 other languages and distributed to over 300 newspapers worldwide.
As is recommended for all patients, Dr. DeBakey had an advance directive: he had stated, while in good health, what approach to medical care he would want if he became ill and was unable to speak for himself. He specifically indicated that he would not want to undergo major surgery. A cardinal principle of contemporary medical ethics is that it is the right of patients to make just this sort of decision and the obligation of physicians to follow their wishes. To respect a patient’s preferences as long as he is able to speak for himself—as happened with Dr. DeBakey during the nearly six weeks following the onset of symptoms—and then to disregard those wishes once the patient loses the ability to make decisions—as occurred when Mrs. DeBakey reportedly stormed into a late night hospital ethics committee meeting and demanded that the surgery take place—violates the hard-won respect for their autonomy that patients have gained over the past twenty years.
Much of the commentary about the case has centered on whether a patient’s wishes can be overridden, even by loving family members. What has largely been left out of the discussion is whether it is ever appropriate to perform invasive, dangerous, and expensive surgery on 97-year olds—even if they want it.
The operation performed on Michael DeBakey involved putting him on cardiac bypass and opening the aorta, the artery that carries blood from the heart to most of the major organs of the body. The damaged part of the aorta was then replaced with a synthetic graft. The risks were high—in a group of elderly patients who had the procedure, the oldest of whom was 77, 18% died. Moreover, simply surviving the surgery does not mean returning to one’s usual state of health in a matter of a few weeks. It typically means, as DeBakey experienced and as his physicians anticipated, an extended hospitalization marked by reliance on machines, marred by multiple complications, and fraught with considerable suffering. Dr. DeBakey spent three months in the hospital, much of the time unable to speak or eat, let along get out of bed, read, or interact with others. He was attached to one machine for breathing and to another machine to clear wastes from his system. He was fed through a stomach tube. The cost of his hospital stay is estimated to have exceeded one million dollars.
Dr. DeBakey is glad to be alive—and I am delighted for him that he survived his ordeal. But how many people should we subject to the grueling treatment DeBakey endured for a chance of a few more weeks or months of life? Is it reasonable for 99 or perhaps 999 people to suffer for days or months, only to die from complications of the surgery, because very occasionally, one person might live?
The number of potentially life-prolonging technologies offered by contemporary medicine is proliferating rapidly. The implantable cardioverter defibrillator jolts the heart back to normal if an irregular, life-threatening rhythm develops in patients who have had a heart attack. The left ventricular assist device is a partial artificial heart used in patients dying of heart failure. Sophisticated biopharmaceuticals created by biotechnology are also multiplying, drugs typically used in patients with extremely advanced cancers. Some of these technologies offer a chance of additional months or even years of life to people in their prime; but do they make sense, especially when they are invasive and costly, in the oldest old?
When the baby boomers begin turning 65 in the year 2010, they will account for 13% of the U.S. population; by 2050, they will make up 20.6% of the population. Medicare expenditures for this group—the money spent by the government insurance program for the elderly alone—are projected to soar from the current 2.6% of the Gross Domestic Product to 9.2% in 2050, and technology will account for over 50% of the increase in costs. If we are to have the resources to spend on public goods other than health care—on education, on national parks, on highways—not to mention to spend on medical care for poor people and for children—we need to put the brakes on technology.
In a rich country like the U.S., this does not have to mean rationing care based on age alone. But surely the place to start is to limit treatment that is burdensome and expensive, that has a miniscule chance of success, and that is proposed in someone who is at the very end of life. We need to accept human mortality and, as a matter of practice and of policy, concentrate on improving the quality of life of older people. This means assuring compassionate nursing home care, coordinated management of chronic diseases, and competent palliative care as death approaches, rather than using ever more technology to try to eke out a little more life. And it means systematically considering cost and life-expectancy in decisions about reimbursing high technology medical care.
An abridged version of this article appeared on Project Syndicate (www.project-syndicate.org). It was translated into 7 other languages and distributed to over 300 newspapers worldwide.
April 23, 2007
How Different Are We?
Ample evidence indicates that African Americans, on average, favor more aggressive medical care near the end of life than do white Americans. This translates into more days in the intensive care unit and more unsuccessful attempts at cardiopulmonary resuscitation before death, and it means less hospice care. This phenomenon is typically attributed to differences in values between minorities (Asian Americans and Latinos express similar preferences to blacks) and whites or to a deep-seated mistrust of the medical profession—or both. In a new study released today, my colleagues and I suggest that lack of understanding of their health status may play a role as well. Moreover, showing patients a video can overcome poor comprehension.
In our study, “Using Video Images of Dementia in Advance Care Planning,” (Archives of Internal Medicine 2007; 167:828-833), we looked at advance care planning, at what approach to care patients say they would want in the future. Specifically, we asked how they would want to be treated if they developed advanced dementia, a condition in which they were dependent on others for their most basic needs such as eating and going to the bathroom and in which they could speak only a few words. Our strategy was to give the research subjects a verbal description of advanced dementia and then ask them whether they would want life-prolonging care (conventional comprehensive care), limited care (excluding CPR and ICU care), or comfort care (treatment of symptoms). Next we showed each of the 120 individuals enrolled in the study a 2-minute digital video of a real person with advanced dementia. The film showed a nursing home resident being fed by her daughters; it showed the daughters asking her questions and failing to elicit a response; and it depicted the daughters transporting her in a wheelchair. The accompanying narrative was identical to the previously delivered verbal description of advanced dementia as a progressive, ultimately fatal neurologic disease that causes profound impairment in memory, thinking, and judgment. After watching the video, the research subjects were again asked what approach to medical care they would favor.
What we found is that before watching the video, 21% wanted life-prolonging care, 18% wanted limited care, 50% wanted comfort care, and 11% were uncertain. After seeing the video, nobody favored life-prolonging care, 8% wanted limited care, 89% said they wanted comfort care, and 3% were unsure. None of the subjects switched from a less intensive to a more intensive level of care and 98% said they found the video “very helpful” or “somewhat helpful.”
When we focused on the 30 African American patients and the 30 Latino patients in our study (we intentionally recruited our sample so as to ensure that ½ would be white, ¼ black, and ¼ Latino), the results were even more striking. After being exposed only to the verbal description of advanced dementia, more blacks and Latinos than whites favored life-prolonging care. In fact, race/ethnicity—along with education—was the best predictor of whether a person would select more aggressive care. After watching the video, there was no longer any association between the level of care chosen and either race/ethnicity or education.
This was a small study conducted entirely in the greater Boston area. We don’t know whether our results would hold up if we carried it out in other locations and if we tested our video on a large and more diverse group of African Americans and Latinos. But we have reason to believe that part of what is going on when we ask patients to imagine future health states and to tell us what treatments they would or would not want is that we are failing to adequately capture what it would be like to have a hypothetical condition. We suspect that blacks, whites, and Hispanics often have a shared conception of what constitutes appropriate care—but we may need a medium such as video to better explain unfamiliar clinical situations.
In our study, “Using Video Images of Dementia in Advance Care Planning,” (Archives of Internal Medicine 2007; 167:828-833), we looked at advance care planning, at what approach to care patients say they would want in the future. Specifically, we asked how they would want to be treated if they developed advanced dementia, a condition in which they were dependent on others for their most basic needs such as eating and going to the bathroom and in which they could speak only a few words. Our strategy was to give the research subjects a verbal description of advanced dementia and then ask them whether they would want life-prolonging care (conventional comprehensive care), limited care (excluding CPR and ICU care), or comfort care (treatment of symptoms). Next we showed each of the 120 individuals enrolled in the study a 2-minute digital video of a real person with advanced dementia. The film showed a nursing home resident being fed by her daughters; it showed the daughters asking her questions and failing to elicit a response; and it depicted the daughters transporting her in a wheelchair. The accompanying narrative was identical to the previously delivered verbal description of advanced dementia as a progressive, ultimately fatal neurologic disease that causes profound impairment in memory, thinking, and judgment. After watching the video, the research subjects were again asked what approach to medical care they would favor.
What we found is that before watching the video, 21% wanted life-prolonging care, 18% wanted limited care, 50% wanted comfort care, and 11% were uncertain. After seeing the video, nobody favored life-prolonging care, 8% wanted limited care, 89% said they wanted comfort care, and 3% were unsure. None of the subjects switched from a less intensive to a more intensive level of care and 98% said they found the video “very helpful” or “somewhat helpful.”
When we focused on the 30 African American patients and the 30 Latino patients in our study (we intentionally recruited our sample so as to ensure that ½ would be white, ¼ black, and ¼ Latino), the results were even more striking. After being exposed only to the verbal description of advanced dementia, more blacks and Latinos than whites favored life-prolonging care. In fact, race/ethnicity—along with education—was the best predictor of whether a person would select more aggressive care. After watching the video, there was no longer any association between the level of care chosen and either race/ethnicity or education.
This was a small study conducted entirely in the greater Boston area. We don’t know whether our results would hold up if we carried it out in other locations and if we tested our video on a large and more diverse group of African Americans and Latinos. But we have reason to believe that part of what is going on when we ask patients to imagine future health states and to tell us what treatments they would or would not want is that we are failing to adequately capture what it would be like to have a hypothetical condition. We suspect that blacks, whites, and Hispanics often have a shared conception of what constitutes appropriate care—but we may need a medium such as video to better explain unfamiliar clinical situations.
March 29, 2007
Alzheimer's Toll Reaches 5 Million
A new report released by the Alzheimer’s Association brings some bad news: an estimated 5.1 million Americans currently have Alzheimer’s disease (“Alzheimer’s Disease Facts and Figures 2007,” available at http://www.alz.org/national/documents/Report_2007FactsAndFigures.pdf.) And the problem is likely to get worse. By 2050, the number of people over age 65 with Alzheimer’s will have more than doubled, rising to at least 11 million. In a press release put out by the Alzheimer’s Association, the organization’s president issued a call to action: “We must make the fight against Alzheimer’s a national priority before it’s too late. The absence of effective disease modifying drugs, coupled with an aging population, make Alzheimer’s the health care crisis of the 21st century” (Alzheimer’s Association News Release, 3/20/07, available at www.alz.org/media_7362.asp). He’s right: we need to turn our attention to this devastating disease, both by looking for treatments and by finding better ways to care for afflicted individuals. But there’s something else we can do now which would improve the quality of life for those with Alzheimer’s—and simultaneously decrease the cost of their care. The media’s response to the Alzheimer’s Association report is to clamor for more research—which is a fine idea as far as it goes, but it fails to acknowledge that no progressive neurologic disease has yet been cured, not Parkinson’s disease, not stroke, not multiple sclerosis. What we can do today is to provide more hospice care and less intensive hospital care to people with Alzheimer’s disease.
The report presents a striking graph showing that the average amount spent by Medicare on people with dementia (both Alzheimer’s disease and other types) was almost three times what Medicare spent on other patients: $13,207/year compared to $4,454/year. A small fraction of the total is spent on home health aides, but an enormous proportion is spent on hospital care and on nursing home care: the cost of hospital care for the patient with dementia is 3.2 times higher for a patient with dementia than for other Medicare patients ($7,074/person compared to $2,204/person) and the cost of skilled nursing home care is more than ten times higher for a patient with dementia ($2,144/person compared to $210/person), where skilled nursing home care translates into care in a subacute or rehab unit after hospitalization. Medicare pays only for this kind of “skilled nursing facility,” not for custodial long-term care.
By contrast, only a very small percentage of people who die of advanced dementia receive hospice care. One recent study found that a mere 5.7% of nursing home residents and 10.7% of people with dementia living at home were referred to hospice even when they were dying of their dementia (SL Mitchell, JN Morris, PS Park and BE Fries, “Terminal Care for Persons with Advanced Dementia in the Nursing Home and Home Care Settings,” Journal of Palliative Medicine (2004); 7:808-16.
Taken together, these observations about the medical care we give people with dementia paint a disturbing picture. Instead of proving comfort care to people who are at the end of their lives, who no longer can get dressed or go to the bathroom by themselves, and who can no longer carry on a conversation, we are sending them to the hospital and subjecting them to invasive and costly tests and treatments that they cannot understand. If they survive the hospitalization, we send them to a rehabilitation facility because they are often too debilitated after their acute hospital stay to return to the same nursing home or home environment from which they came.
Most older people, when asked, say that if they developed Alzheimer’s disease they would not want invasive and painful medical care intended to prolong their lives, treatment that would simply allow them to develop even more advanced dementia. But once they lose the ability to make decisions for themselves, we routinely subject them to precisely the kind of medical treatment that most of them would not want.
We can do something about this travesty today. We can talk to healthy older people about their preferences for care and document their wishes in an advance directive. It’s not unreasonable to ask patients, well before they show any signs of cognitive impairment, to think about the general approach to medical care they would favor if they turn out to be among the 42% of people over 85 who will develop dementia. We can also establish standards for what constitutes appropriate care for people with dementia, standards that would determine just what physicians recommend to patients and families. Searching for a cure is a noble undertaking and we should pursue it wholeheartedly, but as long as millions of Americans continue to contract Alzheimer’s disease, we have a responsibility to provide humane and appropriate medical care for all who suffer from this tragic condition.
The report presents a striking graph showing that the average amount spent by Medicare on people with dementia (both Alzheimer’s disease and other types) was almost three times what Medicare spent on other patients: $13,207/year compared to $4,454/year. A small fraction of the total is spent on home health aides, but an enormous proportion is spent on hospital care and on nursing home care: the cost of hospital care for the patient with dementia is 3.2 times higher for a patient with dementia than for other Medicare patients ($7,074/person compared to $2,204/person) and the cost of skilled nursing home care is more than ten times higher for a patient with dementia ($2,144/person compared to $210/person), where skilled nursing home care translates into care in a subacute or rehab unit after hospitalization. Medicare pays only for this kind of “skilled nursing facility,” not for custodial long-term care.
By contrast, only a very small percentage of people who die of advanced dementia receive hospice care. One recent study found that a mere 5.7% of nursing home residents and 10.7% of people with dementia living at home were referred to hospice even when they were dying of their dementia (SL Mitchell, JN Morris, PS Park and BE Fries, “Terminal Care for Persons with Advanced Dementia in the Nursing Home and Home Care Settings,” Journal of Palliative Medicine (2004); 7:808-16.
Taken together, these observations about the medical care we give people with dementia paint a disturbing picture. Instead of proving comfort care to people who are at the end of their lives, who no longer can get dressed or go to the bathroom by themselves, and who can no longer carry on a conversation, we are sending them to the hospital and subjecting them to invasive and costly tests and treatments that they cannot understand. If they survive the hospitalization, we send them to a rehabilitation facility because they are often too debilitated after their acute hospital stay to return to the same nursing home or home environment from which they came.
Most older people, when asked, say that if they developed Alzheimer’s disease they would not want invasive and painful medical care intended to prolong their lives, treatment that would simply allow them to develop even more advanced dementia. But once they lose the ability to make decisions for themselves, we routinely subject them to precisely the kind of medical treatment that most of them would not want.
We can do something about this travesty today. We can talk to healthy older people about their preferences for care and document their wishes in an advance directive. It’s not unreasonable to ask patients, well before they show any signs of cognitive impairment, to think about the general approach to medical care they would favor if they turn out to be among the 42% of people over 85 who will develop dementia. We can also establish standards for what constitutes appropriate care for people with dementia, standards that would determine just what physicians recommend to patients and families. Searching for a cure is a noble undertaking and we should pursue it wholeheartedly, but as long as millions of Americans continue to contract Alzheimer’s disease, we have a responsibility to provide humane and appropriate medical care for all who suffer from this tragic condition.
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