The saga of the pregnant brain dead woman in Texas, about which I blogged a couple of weeks ago, is now mercifully over. A Texas judge ruled that the hospital was required to pronounce the woman dead and turn the body over to her family for burial. That was done and all medical equipment has been removed: ventilators, catheters, feeding tubes and whatever else was being used to attempt to sustain the fetus. Funeral preparations are underway. Unfortunately, the newspaper accounts of the sad story of a woman who died too young remain hopelessly confused.
Journalists still report that Marlise Munoz had been on “life support.” She had been attached to a machine that pumped oxygen into her blood and to another one that pumped in nutrients. But she had not been on life support. She was, tragically, dead and no amount of sophisticated technology can “keep someone alive” who is already dead. The journalists quote the woman’s husband as saying his wife had told him she “would not want to be kept alive under such circumstances.” I don’t know what Mr. Munoz, who is an emergency medical technician, actually told reporters. His wife might have said she wouldn’t want machines to sustain her life if she were in a vegetative state. She might have said that if she died, she would not want her organs used or that she would want to be buried promptly. But “keeping her alive” when she was dead was not an option.
Turning to the fetus—the only participant in this drama who was arguably being “kept alive” by machines—the newspapers quote one lawyer as saying “there is an infant, and a dead person serving as a dysfunctional incubator.” I don’t know what the lawyer actually said or what her role was--and she is right that the dead body of Mrs. Munoz was being used as an incubator--but she is not right that “there is an infant.” There was a fetus (“the young of a mammal in the womb”), not an infant (a baby in its first year of life after birth).
All this confusion raises a novel and important issue for older people who are interested in advance care planning—what are the rights of the dead? Most of advance care planning is about living—how a person wishes to be cared for as the end of life approaches. But people also have the option to specify how they want their body to be handled after death occurs. A dead body is not a person; it does not have rights in the way that (living) people do. However, respect for autonomy means a living person has the right to determine what will be done with his or her dead body after death.
So here is what you can say about care-after-death. You can say whether you want to donate your organs after death. Transplanted kidneys, livers, corneas, and other body parts can prolong life or improve the quality of life and there are not nearly as many organs available for transplant as there are people who could benefit from them. You can indicate whether you want an autopsy. Such post-mortem medical examinations can provide information about the cause of death that may be valuable to family members who want to know their risks and are often useful to physicians to improve their skills. And you can say whether your dead body should be disposed of by burial, cremation, or donation to a medical school. Cadavers continue to be important to first year medical students who are learning anatomy.
There are of course limits to what a person can demand about how his or her dead body will be handled. If foul play is suspected, the state can demand an autopsy without requiring consent. If the request for care after death poses a risk to public health—through improperly disposing of the corpse, for example, the government can intervene. But in general, you can decide. Along with designating a health care proxy (someone to make decisions on your behalf about medical care if you are unable to do so), and along with writing out a living will (stating what you would or would not want in various circumstances), you can consider saying what you want after life.
“Patients’ costs skyrocket; specialists’ incomes soar,” screams the headline in the lead article in the Sunday New York Times. The thrust of the article is that the incomes of dermatologists, gastroenterologists and oncologists rose 50% (or more) between 1995 and 2012, adjusting for inflation, while those of primary care physicians rose 10%. This dirty little secret about physician compensation has to come out if the US is going to be able to control health care spending, which was 17.2% of GDP in 2012 (actually down slightly since 2011, but expected to rise steadily for the foreseeable future beginning in 2014). But the recognition that prices are at the heart of the problem is nothing new.
In 2007, the McKinsey Global Institute released a report called “Accounting for the Cost of Health Care in the United States, ” which compared what we spend money on and how much it costs to how other countries spend on healthcare—and what they pay for it. The report recognized that rich countries typically choose to spend a larger fraction of their wealth on healthcare than countries that are less well off. To take this into account, they used a measure called the Estimated Spending According to Wealth (ESAW): the ESAW adjusts spending according to the per capital GDP of the country. Even after these adjustments, the US was found to spend $477 billion more on healthcare than our peers, or $1645 per person.
Where does all this extra spending go? The US outspends other OECD nations in 5 principal areas: in hospital care, outpatient care, drugs, administrative costs, and public investment in health. Only in the areas of long term care (nursing homes and home care) and durable medical equipment (things like hospital beds and wheelchairs) is spending in the US less than in other developed countries. And when we look more closely at each of the big 5, we find something very interesting: the US doesn’t spend more because it uses more hospital days or medications or doctor’s visits; it spends more because prices are higher.
Take medications. American patients take 20% fewer prescription drugs than the Germans or the Swiss, but our medication costs are 50-70% higher. This is because we use new drugs rather than established drugs, brand name drugs rather than generics—and because drug companies charge more in America. Or consider hospital care. The average number of hospital days per person is lower in the US than in all other OECD countries except Canada. But we spent an excess of $224 billion over what the ESAW predicts for hospital care because hospitals get paid a great deal more in the US. Next look at outpatient visits. Patients in the US go to the doctor less often than in other countries: the OECD average in 2011 was between 6 and 7 visits per year, with over 13 visits in Korea and Japan and over 11 in Hungary and the Czech Republic. In the US, the average was 4. But spending on outpatient care is $178 billion over the ESAW prediction, because each visit costs much more in the US.
To get back to the NY Times article about specialty care, take physician compensation. In other countries, specialists get paid on average 4 times the per capita GDP; in the US they get paid 6.6 times as much. These doctors contribute to the high cost of medical care by referring patients for more procedures than do primary care doctors. And the US has 31.5 MRI machines for every million people, compared to the OECD average of 13.3 and 40.9 CT scanners compared to the OECD average of 23.6/million population.
So what can we do about all this? Many economists (and health insurance companies) believe that patients are the key—if only patients had “more skin in the game,” if they had to pay extra for specialist care and procedures and if they had to pay more for going to hospitals and physicians that charge more, costs would come down. But this perspective fails to recognize that health care is not a commodity analogous to toasters or televisions. Medical care is more important to well-being than typical consumer products. And deciding wisely what medical care is appropriate for a given person requires professional input from a physician, not just consultation with Consumer Reports. That professional input, in turn, is shaped both by highly specialized knowledge and by the culture of the medical profession, a culture which today values certainty (keep doing tests until you know for sure what’s going on, even if the information won’t change what you do) and the use of technology (newer, more elaborate devices are always better than older ones). The "skin in the game" idea has other problems as well--best addressed in a separate post.
Over the long run, lowering the cost of medical care in the US will require culture change in the medical profession. Doctors will need to endorse sustainable health care, not the relentless pursuit of life-prolongation, as the bioethicist Daniel Callahan has been arguing for years.
But in the meantime, the glaringly obvious way to begin to address the cost problem is to introduce price controls. Not mickey mouse price controls such as Medicare has been able to offer, in which the doctors affected by pricing decisions set the prices. Real price controls. All the European countries have instituted price controls. So have Australia and Japan. Physicians, hospitals, pharmaceutical companies, and device manufacturers need price controls--they have worked in other countries and they won't mean the end of the world here. Young people will continue to go into medicine even if they can’t earn $500,000 a year as a dermatologist. Drug companies will be able to remain in business even if they don’t have a profit margin of 30%, as the 10 biggest ones do today. Innovation will not be stifled if the profit margins in the medical device industry fall below the current level of 20.3% in the top tier. As the Princeton health economist Uwe Reinhardt has been saying for years, “it’s the prices, stupid.”
“Ariel Sharon dies after 8 years in a coma,” proclaimed one headline. “Brain dead pregnant woman kept alive” said another. Neither headline can possibly be accurate. The former prime minister of Israel was not in a coma. The pregnant woman in Texas is either not brain dead or, if she is dead, no medical technology can “keep her alive.” From simple fainting to death, with coma, vegetative state, minimally conscious state, and persistent vegetative state in between, unconsciousness is a messy business. But it’s time we—the general public, the media, lawyers—got it straight. The distinctions matter.
Once upon a time, if your heart stopped beating and you weren’t breathing, you were dead. Anyone could identify a dead body. But then modern medical science made a few radical discoveries. Medicine showed that some people who looked like they were dead were actually in a kind of state of suspended animation. It turned out that if your heart and your breathing stopped because of profound cold (hypothermia) or certain drugs, you had a decent chance of waking up if you were re-warmed or if the drugs were removed from your system. Medical science led to new technologies such as ventilators that take over for the lungs and pacemakers that stimulate the heart to pump. Dependence on the new technologies was not the same as death. All these developments challenged the traditional notion of death. And then in 1968, a new concept of brain death was born. Articulated by a Harvard Ad Hoc committee, the new way of looking at death emergend from the recognition that the brain is our central processing unit, the organ that organizes and integrates all the functions necessary for human life.
It’s perhaps unfortunate that brain death was originally defined by a committee. It’s regrettable that it was an ad hoc committee and one with the name of a single university attached. But the basic view of this group, that death exists when the entire brain irreversibly ceases to function, has become established as the legally recognized definition of death in all 50 states and the District of Columbia. The American Academy of Neurology has issued guidelines detailing how, in practice, brain death should be determined. Any neurologist, neurosurgeon, or intensive care unit specialist should be able to make the assessment. And it doesn’t require any fancy technology: diagnosing death is basically a clinical determination, though in hospitals today, physicians often use tests such as EEGs or MRIs as “confirmatory evidence.” A person is dead if his brain is dead.
Since the introduction of the modern concept of brain death less than 50 years ago, physicians have learned a great deal about the various forms of unconsciousness. There’s fainting or “passing out,” characterized by transient loss of blood flow to the brain, a reversible condition that is familiar to most people and which can be brought about by marked anxiety or by extremely low blood pressure. Then there’s coma, in which a person is in a deeper state of unconsciousness and doesn’t respond at all to his environment. The eyes are closed. Coma results from conditions such as trauma or stroke and typically lasts no more than a few weeks. People in coma either wake up or move into a vegetative state.
A vegetative state is much like coma except the eyes are open and it can last much longer. The person looks as though he is awake, but he’s not. His eyes wander randomly; he does not respond to words or to physical stimuli. Someone in a vegetative state often has a working brainstem, the part of the brain responsible for automatic functions such as breathing. But he has no cognitive function—no awareness, no ability to think or hear or speak.
From a vegetative state, a person can progress to either a minimally conscious state or a persistent vegetative state. The minimally conscious state is a recently described state in which a person has a very limited amount of higher level brain function: sophisticated tests such as a functional MRI show some kind of neurological response when the person is shown familiar photographs or words. The persistent vegetative state—the other possible next step after a vegetative state—is basically the same as a vegetative state but one that has lasted a long time (months) and is now irreversible.
It should be evident from even this brief description of the varieties of unconsciousness that Ariel Sharon was not in a coma for eight years. Exactly what state he was in is not entirely clear from the public record, but it was most likely PVS. He was sustained by artificial nutrition and hydration. Acute illnesses such as infection were treated with antibiotics. Apparently his death was precipitated by kidney failure: his kidneys shut down and the decision was made not to start dialysis but rather to allow him to die. Whether Marisa Munoz is brain dead or is in a vegetative state is also not clear from the public record. If she’s in a vegetative state then, according to Texas law, medical interventions to sustain her and allow her pregnancy to continue are required, even if she would not have wanted such interventions. If she is brain dead, then she is dead, period. There is no such thing as “life sustaining treatment” for a dead person. We cannot revive the dead. And the state cannot decide to use a dead body as an incubator for a fetus, any more than it can decide to remove organs from a dead body to save the lives of people awaiting transplants.
These in-between states are hard to accept because the people languishing in such a condition—and there are somewhere between 15,000 and 40,000 people in the US in a PVS—do not look dead. They are not cold. Their hearts are beating. Their eyes are open. Common sense tells us they must be alive. But science is often at odds with common sense. Common sense rejected the notion that micro-organisms (tiny single celled organisms that are invisible to the naked eyes) could cause disease. Common sense dismissed the connection between cigarettes and cancer. Common sense holds that pneumonia results from going out into the cold without a hat and that cancer results from repressing emotions. The essence of the science is that it reveals truths that are not self-evident.
Difficult as the distinctions among the different states of unconsciousness may be to accept—and it hasn’t helped that the terminology has evolved over time—we have to get them right. Only then will we be able to spell out in an advance directive how we wish to be treated if we are ever in one of these conditions or to tell our families and physicians. Only then will we be able to make a decision based on our moral understanding, not on magical thinking that allows us to believe that an irreversible condition can be “cured.” People may disagree about the morally correct way to treat someone who is in limbo between life and death. The Catholic Church holds that reverence for the sanctity of life requires that people in PVS be treated with artificial nutrition and hydration.
I think that the best way to show respect for human life is not to confuse it with a mere collection of cells, cells that do not and will never be able to function as a thinking, feeling human being. Accordingly, I think that it is wrong to inflict invasive medical treatment on someone in a persistent vegetative state. I have written a living will in the form of a letter to my husband, my formally designated health care proxy, telling him what approach to medical care I would want if I lost the functions that make me who I am. I encourage everyone to learn about unconsciousness states, to think about what their goals would be for themselves if they developed such a condition, and to share their views with the person who would make decisions for them if they lost the ability to make their own decisions.
The NY Times didn’t cover it; neither did the Washington Post or the Wall Street Journal. But the BBC made a big deal of the G8 “dementia summit,” hosted by the UK just a couple of weeks ago. Representatives from the research world, the pharmaceutical industry, and the Organization of Economic Development, along with government health leaders, met to discuss what to do about Alzheimer’s disease and other dementias.
Seven members of the G8 took the conference seriously: the UK, Canada, France, Germany, Italy, Japan, and Russia each sent their top health representative. The US didn’t send the Secretary of Health and Human Services. We didn’t even send the assistant secretary. We sent the "acting assistant secretary for planning and evaluation" in the Department of Health and Human Services. The title says it all: the US didn’t regard this conference as a priority.
Granted, President Obama already announced his domestic analog, the “National Plan to Address Alzheimer’s Disease,” which looks a lot like the G8 agreement in its ambitious, some would say outlandish, promise to cure Alzheimer’s disease. Granted, the principal American governmental health agency is currently bogged down trying to roll out the Affordable Care Act, which would finally bring the US in line with the rest of the developed world in providing health insurance to its citizens. And granted that the G8’s solemn commitment to “develop a cure or treatment for dementia by 2025” is no more likely to succeed than was Nixon’s 1971 National Cancer Act, aka the War on Cancer. But dementia represents a public health challenge of staggering proportions. Globally there are 44 million people with dementia. Their care costs $604 billion a year. By 2050, barring any substantial progress in preventing or treating the disease, there will be 135 million people with dementia.
What’s interesting about the Summit on Dementia is not the rhetoric about cure; it’s the pledge of eight of the scientifically most advanced countries to cooperate to solve a problem that concerns the entire world. Maybe the promise to share data and to work collaboratively on research is a lot of hype. Maybe the Dementia Summit will prove to be as disappointing as the international conferences on climate change have been. But within the US, there is a movement to break down the barriers between specialties and to promote genuinely interdisciplinary research. There is a growing sense that cooperation may be more powerful than competition in science. Working together with other nations to improve the care and treatment of people with dementia seems like a great way to break down barriers. How’s that for a New Year’s resolution?
From both an individual and a public health perspective, frailty is one of the most important conditions affecting older people. Along with dementia, which is really just cognitive as opposed to physical frailty, it is a devastating syndrome. Frailty predisposes to recurrent hospitalizations and leads to the dreaded cascade of iatrogenic complications once someone is in the hospital. Frailty leads to nursing home placement and to disability and death. So a recent consensus statement discussing how to approach frailty is one of the most exciting and significant papers to appear in the recent geriatric literature. Published in a third tier medical journal, it’s only by chance that I stumbled on the article at all.
The consensus paper, authored by 20 geriatricians and including some of the most distinguished figures in the field, is based on a conference convened a year ago for the sole purpose of arriving at a shared perspective on frailty. It offers a definition of frailty, a few validated simple screening tests, several possible medical interventions, and the recommendation that physicians routinely screen for the disorder in people over age 70. The definition the authors came up with is “a medical syndrome with multiple causes and contributions that is characterized by diminished strength, endurance, and reduced physiologic function that increases an individual’s vulnerability for developing increased dependency and death.” Sounds like something written by a committee, but it hits all the high points. One of the screening tools the authors favor is the FRAIL questionnaire. Ask 5 simple questions: are you tired (Fatigue); are you unable to walk up 1 flight of stairs (Resistance); are you unable to walk 1 block (Aerobic); do you have more than 5 illnesses (Illness); and have you lost more than 5% of your weight in the past 6 months (Loss of weight). A score of 3 or greater (a yes answer counts as 1 point) indicates frailty. A score of 1 or 2 implies pre-frailty.
Frailty can seldom be cured and is often progressive, but in some cases it can be ameliorated. Exercise, nutrition, and medications can all help. In particular, the authors cite a review article indicating that 45-60 minutes of exercise done 3 times a week is beneficial. Calorie supplements can promote weight gain and reduced mortality in those frail old people who are undernourished. In people with a low vitamin D blood level , vitamin D supplements can reduce falls, hip fractures, and mortality. Reviewing all prescription medications and getting rid of selected drugs can also be useful. Finally, the conference concluded that primary care physicians as well as other clinicians should routinely screen for frailty in the geriatric population.
No one wants to be labeled “frail.” It’s up there along with “elderly” or “old” as a term everyone seems to want to avoid. But far better to prevent or treat the condition than to pretend it doesn’t exist. It’s time for doctors to pay attention to frailty—to recognize when it’s present and to intervene when possible. How’s that for a New Year’s Resolution!
How often does anyone come up with an idea for improving medical care that does good and saves money at the same time? Not very often. Even inventions that ought to save money often don’t—for instance, a number of years ago, surgeons figured out how to take out a person’s gallbladder using a fiberoptic device called a laparoscope. Instead of a five-inch incision, patients have a one-inch incision; instead of a 5-day hospitalization, they spend a single night in the hospital; instead of a 6-8 week recuperation period, patients are up and about within days. Good idea? Absolutely. Money-saving? Not so clear. What happened is that the rates hospitals charged for the procedure were based on the “equivalent” alternative procedure that insurers were used to paying for, so the per procedure charge wasn’t much less than standard gallbladder surgery that involves cutting open the abdomen. Not only that, but the total number of people getting gallbladder surgery went up dramatically after the simpler procedure was introduced. Net result? No decrease in overall spending on taking out people’s gallbladders. So when something comes along that both improves outcomes and saves money, it’s worth taking note and celebrating. Palliative care, as a recent article in the New England Journal of Medicine points out, is exactly that kind of remarkable invention.
Palliative care is not synonymous with hospice care. It is not the same as end-of-life care. And it is not a court-of-last-resort, what you get when you’ve exhausted all possible other treatments. Palliative care, as the Center for the Advancement of Palliative Care defines it, is “an extra layer of support,” something that is appropriate at “any stage in a serious illness.” Patients can have palliative care and life-prolonging treatments; they can, for instance, have chemotherapy or radiation therapy as treatment of cancer along with palliative care. What palliative care adds to conventional treatment is a whole team of clinicians (typically a doctor, nurse, and social worker, though it can include a chaplain or music therapist or other professional) whose focus is on managing symptoms (problems such as pain or nausea or depression), on advance care planning (on preparing for future medical care), and on providing psychosocial support to the patient with a life-limiting illness and his or her family.
Several studies have now shown that early palliative care improves quality of life and may even lengthen life. In advanced lung cancer, in which patients typically have a prognosis of at most a year, patients who received outpatient palliative care along with conventional cancer care were less depressed, had fewer physical symptoms, and actually lived longer than those who did not get palliative care. Similar findings have been reported for people with severe heart failure, severe chronic lung disease, and for people with multiple sclerosis. My clinical work suggests the same is true for older people with physical frailty or with cognitive frailty (dementia).
What’s remarkable is that palliative care also saves money. It leads to shorter hospital stays, fewer days spent in an intensive care unit, and fewer expensive tests, all without shortening life. But most patients with life-threatening illnesses do not receive palliative care services? Why not? The New England Journal article suggests that the way to improve the situation, and implicitly the reason for the current limitations, is by changing the payment system so that insurers would pay physicians for counseling about end of life care, by reforming the medical education system to increase palliative care training, and by improving access to palliative care by making consultation available at all hospitals. These are all reasonable strategies, but I don’t think they get to the heart of the problem.
The main barrier to extending the benefits of palliative care more widely is not economic—palliative care physicians have been successfully billing Medicare and other insurers for their services for years by transforming a “family meeting” into a “history and physical examination” through the inclusion of a few comments about the patient’s medical problem (the “history”) and appearance (“physical examination”) into the medical record. The main barrier to more widespread use of palliative care is psychological. Even though patients and their families who do avail themselves of palliative care generally like what they get, many patients refuse palliative care services because they do not want to face their mortality. At the same time, physicians do not want to propose palliative care because they think they are conceding defeat in the “fight against death.” And Congress does not want to legislate changes in Medicare and Medicaid that mandate broader use of palliative care because of the "death panel" legacy. The truth is that we are all mortal. The question is not whether we will die but what our journey will look like. Maybe it’s time to face this reality.
Physicians are not known for their communication skills. Despite sessions in medical school and during residency addressing topics such as “breaking bad news” and “discussing prognosis,” clinicians still do not perform well. A new program for both doctors-in-training and nurse practitioner students sought to improve the poor track record.
Participating students attended eight 4-hour workshop sessions addressing communication in end-of-life care. Each session included a short lecture, a demonstration by a faculty member of good communication, a practice session for the trainees using a simulated patient, and a discussion. A total of 184 students completed the workshops; another 222 completed “usual education.” (The vast majority were physicians- in-training and only a few were NP students, so I will restrict my comments to doctors). The students were evaluated for their proficiency in communication and their skill in providing end-of-life care after the educational intervention, with physicians, patients, and family members all contributing to the evaluation process. The bottom line: the workshops did not appear to accomplish anything. Students who participated in the workshops performed at almost exactly the same level as those who received the “usual education,” both in their communication skills and in their delivery of end-of-life care. In fact, the only measurable difference between the two groups was that patients whose physician had taken the training were more likely to end up being depressed than those whose physician did not. What are we to make of these findings?
The authors offer several interesting possible interpretations. They point out that an earlier study showed that patients who understood they had a very poor prognosis were more likely to rate their physicians’ communication skills as poor than those who incorrectly believed their prognosis was pretty good. So it is entirely possible that what palliative care physicians mean by “good communication skills” is not what patients and families mean. Palliative care doctors think that good communicators give patients a realistic understanding of their clinical situation and elicit their patients’ preferences for future medical care, all in a compassionate and caring way. Maybe patients and families equate “good communication” with encouragement, or instilling hope, or holding out the prospect of cure, however implausible cure may be. Maybe objective assessments by trained faculty are a better way of evaluating success than are patient and family reports; it turns out that when faculty did the evaluating, they found that students did improve after the workshop. Maybe expecting that the students would do a better job providing end-of- life care after a workshop on communication was naïve; after all, excellent end-of-life care includes expert pain management, good diagnostic skills, and appropriate referral to other clinicians, not just good communication.
I’d like to suggest a different conclusion. Perhaps it’s time to stop investing so much effort in trying to change physicians. We should turn instead to a radically different way of educating patients and helping them make the difficult decisions they face near the end of life. One of my colleagues has taken just such a tack. He designs short videos to show patients and their families the medical conditions they have and the interventions they might be offered. Multiple studies have now demonstrated that patients who watch these videos have a much clearer idea of what is at stake and express different preferences from patients who hear a verbal description of their disease and the options for treatment. The videos do not replace clinicians; rather, they give patients a strong foundation on which to build when they talk with their physician. They allow doctors to go beyond explaining the basics and they allow patients to apply the information they have learned to their specific situation.
Most of my career has been devoted to trying to be the best possible communicator with my patients, on the one hand, and to writing books and articles to help clinicians and patients make better decisions, on the other. So it pains me to think that this intensely verbal approach may just not be as effective as carefully constructed videos that show the realities of advanced illness and contemporary treatment. I will continue to write (this blog included) because that’s what I do. But I will also partner with my young colleague to create scientifically accurate videos, reviewed by experts, that complement all those words.
Perhaps Eliza Doolittle put it best, in My Fair Lady:
Words, words, words
I’m so sick of words…
Sing me no song, read me no rhyme,
Don’t waste my time, show me!
Please don’t implore, beg or beseech,
Don’t make a speech, show me!
My mother will turn 88 in a few weeks. According to the definition of successful aging put forward by Rowe and Kahn nearly 16 years ago, she is aging quite well. Her kidneys, lungs, and heart work fine. She is still very active—she teaches a French class once a week at the local senior center, she tutors English to foreigners, she plays scrabble with friends, and she drives daily to visit my father at the nursing home where he lives. My mother does have her share of medical problems: she has painful arthritis affecting her knees and her back and she is very weak, finding it difficult to turn a door knob or to lift a container of milk. Until about a year ago, she walked at least a mile every day, but now she can only take short walks and has to sit down frequently. Her memory isn’t what it once was, though it’s still pretty good. My mother will say that “old age is no picnic” and that “people live too long” today. When her physician told her she was aging gracefully, she told him he was full of it. Her doctor has one perspective on successful aging; she has another one. How are we to put the two views together? Are we using the right definition of “successful aging?”
A new study in The Gerontologist tries to answer this question. The authors carried out in-depth interviews with 56 elders who have significant disabilities and are enrolled in the On Lok program, the original PACE program (Program of All Inclusive Care for the Elderly) in San Francisco. Members of PACE all have enough disabilities to qualify for entry into a nursing home and for Medicaid enrollment, so they are both frail and poor. In fact, the group studied had an average age of 78; 64% were women; the average number of ADL dependencies (problems in areas such as bathing or dressing) was 2.2 and the average number of IADL dependencies (areas such as food shopping or cooking) was 6.6. It was a diverse group, with 23% African American, 32% Asian American, 20% white, and 20% Latino.
By and large, the group held the view that aging is an unavoidable process that entails disability. The key to successful aging, they said, was to accept your limitations and to adapt. If you have trouble walking, use a walker. If a walker isn’t enough, use a wheelchair. They also tended to focus on relative disability rather than absolute disability—as long as there were others who were worse off, then they felt they were doing well. The minority who said they hadn’t aged successfully commented that they had not found ways to adapt to their disabilities and they felt were a burden to their families.
So the PACE elders and my mother don't have quite the same perspective. My mother would agree that it’s critical to accept your limitations and to adapt, and she's done that. She doesn’t want to be a burden on anyone, and she isn't. But I doubt she would say she is “aging well." She is aging better than my father, who has dementia and Parkinson's and lives in a nursing home because he needs help with just about everything, but she wouldn't call herself a phenomenal success.
Perhaps the whole idea of “successful aging” or “aging well” is the wrong way to think about this phase of life. For no other stage of development do we assign grades: we don’t say someone had a “successful childhood” or a “failed adolescence.” We might refer to their emotional state during a particular stage: someone might have a “happy childhood” or a “troubled adolescence.” We might use the label “successful” for a career or a marriage, but not for a part of the life cycle. So why do we insist on evaluating aging in this way?
Instead of grading aging, government and professionals should do work to assure that people are satisfied with their lives and are contributors to their community. After all, this is arguably the goal for the entire population, regardless of age. Our challenge is to figure out how to achieve this for people who are old and frail, whether because of physical impairments, cognitive impairments, or both.
Just as we cannot eradicate inequality among people—they have different genetic endowments, they are born into different families and different cultures—but we can aspire to provide equal opportunity, perhaps our goal for older people should similarly be to promote equality of opportunity. We cannot eliminate differences in disease burden or disability, but we can seek to assure that everyone has a fair chance to make the most of themselves, whatever their situation. It’s time to switch from talking about “successful aging” to coming up with a successful aging policy.
The remembrances of JFK this week focused, understandably, on his great promise and how an assassin’s bullet burst the bubble of optimism and exhilaration generated by his election. Implicit in this perspective, however, is the suggestion that all that came after Kennedy was pessimism and gloom, epitomized by the Vietnam War. What is ignored by claims that it-was-all-downhill-after-JFK is that for all Kennedy’s youth, his oratory skills, and his brilliance, he was in many ways not a terribly effective president. Left largely unsaid is that it was under LBJ, the consummate politician, that progress was made on the liberal agenda. It was LBJ who pushed the Civil Rights Act, Head Start, the Food Stamp program—and Medicare and Medicaid--through Congress.
For 50 years, America had resisted national health insurance. Theodore Roosevelt (yes, the Republican Roosevelt) supported national health insurance in the election campaign of 1912, arguing that no society could be strong whose people were sick and poor. But he lost the election and the issue largely faded from the national agenda until a different Roosevelt became president in 1932. While enthusiasm for national health insurance grew within FDR’s administration, the president himself never championed it as he faced relentless opposition from the AMA and state medical societies.
Truman picked up the baton after WWII, but again confronted insurmountable opposition from the AMA as well as other powerful health care organizations such as the American Hospital Association. Thus, despite continued public support—polls every couple of years between 1936 and 1945 showed a large majority of Americans supported government health insurance—Congress balked. The passage of legislation providing comprehensive national health insurance for the poor (Medicaid) and the elderly (Medicare) during the Johnson Administration in 1965 was an extraordinary achievement, launching a very popular program from which older people continue to benefit today.
Just how important Medicare is to the health and well-being of the 47 million people (8 million disabled Americans and 41 million older individuals) now covered by the program was brought home recently by the publication of an article reminding us that access, affordability, and insurance complexity are generally worse in the US than in 10 other developed countries.
American's poor access and affordability arise largely because of the enormous uninsured population in the US—a situation that does not affect older people, thanks to Medicare, and that will be less of a problem if the Affordable Care Act is allowed to go into effect. Even among insured adults in the US, however, high out-of-pocket spending was a problem, chiefly because of the high deductibles and cost-sharing in many US insurance plans. This problem is less likely to affect older people in light of Medicare’s comparatively modest cost-sharing.
Access to primary care was less good in the US than in many other developed nations, a problem that was particularly severe for the uninsured. This is one domain that also affected the insured, including those with Medicare, because of a relatively poorly developed primary care infrastructure in the US.
In the area of administrative costs and complexity, the US was an outlier, with US health insurers spending $606 per person on administrative costs, more than twice as much as the number 2 spender, Switzerland, and 17 times as much as the number 11 spender, Norway. While there is considerable debate about just how to compute administrative costs of a health insurer, some of the best estimates indicate that Medicare spends less than 2% of its operating expenditures on administrative costs, compared to 11% for Medicare Advantage Plans (the private Medicare spinoffs) and 12% or higher for other private insurers.
Let us celebrate what Medicare has achieved—reasonably good access to comprehensive care at an affordable price for consumers—and make sure that we do not sacrifice these accomplishments as we improve Medicare to make it more responsive to contemporary medical problems and to slow the rate of rise of health care costs. And as we pay tribute to Medicare, with all its imperfections, let us also recognize that the Affordable Care Act, with all its imperfections, aims to do for the rest of the population what Medicare has done for the elderly and the disabled. Obamacare is not national health insurance--it is as its core a plan designed by Republicans, supported by big business, and relying on private rather than government insurers--but its intent is to extend the indubitable benefits of health insurance to another 30 million Americans.
The 1.4 million people who live in nursing homes are among the most vulnerable, powerless individuals in American society. They are old (mean age 79.2), they are physically frail (60% are unable to do 4 or more of the most basic daily activities), and most of them are cognitively impaired, many of them severely (39%). Nursing homes have come a long way since the bad old days when residents were tied up, neglected, and abused, and one of the stratagems for improving care has been the “care planning meeting.” A plan of care must be developed by the facility staff for all new admissions to nursing homes that are Medicare or Medicaid certified, addressing physical, emotional, and medical needs. These plans are reviewed on a quarterly basis—more often if there is a major change in status, such as a hospitalization. And one of the innovations of the last decade is to invite family members to participate in care planning meetings. This gives families information about their loved one and an opportunity to make suggestions and raise concerns. But one issue that neither staff nor families routinely raise and that the many websites that advise families about how to negotiate the unfamiliar nursing home terrain is medications. And that, specially in light of recent revelations, is an essential question.
The recent revelation is that Johnson & Johnson, the world’s largest drug company, just settled a variety of civil and criminal complaints about its sales of the psychiatric drug Risperidone (Risperdal) for $2.2 billion (yes, that’s billion) J&J “accepted accountability” for misbranding Risperdal as useful for treating elderly patients with dementia, for marketing Risperdal for the elderly, and for paying kickbacks to both physicians and to Omnicare, the largest pharmacy supplying nursing homes, for using the drug.
It’s been known for quite some time that drugs like risperidone, an “atypical” neuroleptic used in the treatment of schizophrenia, come with considerable side effects. Though less likely to cause Parkinsonian symptoms than earlier “typical” neuroleptics such as chlorpromazine (Thorazine) or haloperidol (Haldol), it can cause sedation, low blood pressure, and dry mouth, among other symptoms. Then it was shown to increase the risk of diabetes and weight gain. And a meta-analysis in 2005 found it increased the risk of sudden death by death by 60-79%, which led to the FDA issuing a “black box” warning—a warning on the risperidone label highlighting its hazards. Families and physicians might have been willing to accept the risk of side effects and even of death when the drug was used in people who were already very old and very sick if it had been effective. Unfortunately, a series of studies looking at whether risperidone and other “atypical neuroleptics” (similar drugs in the same class) were effective in controlling the behavioral symptoms of dementia—problems such as agitation or paranoia—found only limited evidence that it achieves these goals.
Since behavioral symptoms are often very difficult to control and create problems both for the patient and for nursing homes, physicians have continued to use neuroleptics including risperidone “off label,” that is for uses other than those for which the FDA approved them. This is an entirely legitimate practice. What is not legal is for drug companies to advertise their drugs for use in these conditions or to bribe physicians or pharmacies to use the drugs.
The Justice Department is hoping that the new settlement (in which, by the way, J&J does not admit any wrongdoing) will stop the prevailing practice and serve as a deterrent to this kind of behavior in the future. Given that GlaxoSmithKline settled with the government last year for $3 billion over similar behavior with respect to two antidepressants (Paxil and Wellbutrin), along with a diabetes drug, and that Pfizer made a payment of $2.3 billion in 2009 over inappropriate marketing of several other drugs, it’s not so clear that ithe deal will deter outrageous behavior. It is entirely possible that settlements of this kind are seen by Pharma as the cost of doing business. Everybody misbehaves all the time; occasionally a company is caught; on balance, a periodic payoff may be worth the tremendous benefits. After all, at its peak in 2007, J&J sold $4.5 billion worth of Risperdal. The company has now signed a 5-year “corporate integrity agreement” in addition to paying the fine, but analogous agreements signed by medical device manufacturers in the past led to no substantive changes in behavior.
So in those care planning meetings in the nursing home, if they ask nothing else, family members should ask “what drugs is mom on?” And that should be followed by “why is she on them?” and “are they helping?” And if there is no good reason for giving the medication, ask that it be stopped, especially neuroleptics. It will save mom a lot of misery—and save money for all of us.
.
