Nearly 25 years ago, gerontologists wrote about what they called “everyday ethics” in the lives of older people. They wanted to move the focus from the dramatic, life-or-death decisions that were the bread and butter of medical ethics, to the more mundane, but far more common concerns affecting elderly individual. These kinds of issues ranged from seemingly trivial concerns that nonetheless affected quality of life, such as the freedom of nursing home residents to decide when to get up or where to sit at breakfast, to medically consequential decisions such as whether to be treated at home or in the hospital. In some cases, older people had strong opinions about what they wanted, but needed help implementing their choices—in ethical lingo, they were “decision-competent,” but did not have “executional autonomy.” In other cases, older people did not have the cognitive capacity to make choices and needed a surrogate to decide on their behalf.
Everyday ethics never caught the imagination of physicians or of the general public. It just wasn’t as exciting as the momentous decisions about who would get an organ transplant or whether someone could be taken off a ventilator. But the commonplace decisions that have to made each day for frail older individuals collectively have far greater import than the much rarer life-or-death decision. Someone has to decide whether an 85-year-old woman with dementia and difficulty caring for herself will stay in the community or enter a nursing home. Someone has to decide whether a 90-year-old with pneumonia will be treated in her home or in an acute hospital. Someone has to decide whether the 79 year-old with very advanced dementia should enroll in hospice. But the focus of the medical literature, of empirical studies of what actually happens in daily life and theoretical essays about who should make decisions and on what basis, tends to be on the use or withdrawal of technology, of the major symbols of medical treatment. So a new study that purports to look at the role of surrogate decision-makers outside the intensive care unit setting is a welcome reminder that what matters to older people—and what accounts for most of their healthcare utilization—is not just procedures and surgery and machines.
This new study makes the important but not surprising observation that surrogate decision-makers are critically important to older patients. They report that within 48 hours of admission to a hospital, 47% of older adults require that a medical decision be made in which a surrogate participates. In 23% of cases, these decisions are made exclusively by the surrogate. Unfortunately, this study is confined to the acute hospital setting. It still deals with big ticket items—in 57% of cases, the decision in question related to life-sustaining care, principally whether to attempt CPR in the event of a cardiac arrest, and in 49% of cases, the decision related to an operation or procedure. Not only was the study restricted to the hospital, but it included decisions made in the ICU, even though the authors specifically give as the impetus for their work the need to extend the discussion to settings outside the ICU. But at least it is a start. We need to look at the everyday decisions made by surrogates for their aged, frail, or demented family members and examine how they make these decisions, what help they need, and how they could make better decisions, ideally reflecting the values and needs of those they love.
In Britain, a growing number of companies are recognizing the wisdom of providing eldercare assistance to their employees. This isn’t a matter of altruism; as many firms discovered years ago when they opted to offer childcare benefits, employees are more productive if family pressures do not intrude on their work. And while not all workers have children, everyone has or once had parents. Sooner or later, those parents are likely to need help with some of the most basic daily tasks.
As the population ages, more and more adults are engaged in caregiving. A recent American study found that nearly half of all family caregivers perform significant medical or nursing tasks for their relatives. Most commonly this includes giving prescription medications; it may also involve bandaging wounds, preparing special diets, and even assuring the smooth operation of medical devices such as ventilators or feeding tubes. And nearly half of all family caregivers are employed outside the home, with the vast majority between the ages of 35 and 64. Moreover, it’s not just women who are the caregivers: 56% are women but 44% are men. They all report that their caregiving responsibilities are stressful, and the greater the number of medical or nursing tasks they perform, the greater the stress.
Picking up on this theme, the AARP Public Policy Institute has written a position paper urging employers to recognize the toll taken by family caregiving and to do something about it. In particular, the authors support giving caregivers flexible hours, paid sick leave, and family leave. They recommend offering on-site support groups and referrals to community-based home care agencies. Such measures, AARP argues, can enhance productivity, lower absenteeism, and decrease a company’s costs. In particular, it’s a great deal more expensive to hire and train a new employee than to invest a little in a current employee. In fact, these outcomes are not merely theoretical; they’ve been shown to work, unlike some of the current efforts of companies to promote preventive health care among their workers.
Linking essential benefits to employment can be problematic: the decision to tie health insurance to one’s job, a decision made in order to circumvent wage controls during WW II, led to an almost exclusive relationship between health insurance and work, and to 47 million uninsured Americans. Only gradually is this connection unraveling. But in this era of shrinking government, creation of an expensive new social program for caregivers, irrespective of employment status, seems highly unlikely. Asking corporations to shoulder some of the responsibility is a reasonable way forward. It’s in their interest, it’s in the interest of their employees, and it’s in the interest of the millions of older people who rely on their families to meet their basic needs.
At a time when most of the news about health and healthcare is pretty bleak, it’s nice to hear that one program for older patients is doing very well. The PACE program—Program of All-inclusive Care for the Elderly—has been around since the 1970s, when a neighborhood health center in San Francisco called On Lok pioneered a “social HMO,” providing both medical and social services using a capitated model. Since that time, PACE programs appeared in much of the country, each petitioning Medicare and Medicaid for special permission to collect one fee in return for taking care of some of the oldest and frailest patients, those who receive both Medicare and Medicaid and are eligible for nursing home placement. Ultimately, it became so clear that PACE provided high quality care while saving money that in 1997 it lost its experimental status: any integrated program that follows the basic tenets established by On Lok can be designated a PACE site. As of 2013, there were 98 PACE sites in 31 states, according to the National PACE Association. What’s new is that a recent study showed that PACE enrollees go to the hospital far less often than other dually eligible patients (patients receiving both Medicare and Medicaid, a particularly vulnerable and sick population).
The report, published in the most recent issue of the Journal of the American Geriatrics Society, reveals that the hospitalization rate was 79% higher among dually eligible in general than in PACE members (because not all patients are enrolled in PACE for an entire calendar year—they may join at different times or disenroll, usually due to death, before the end of the year—the report actually cites the rate per 1000-person-years, which comes to 539 per 1000 person-years in PACE members and 962 per 1000 person-years in the dually eligible). And when the investigators looked at “potentially avoidable hospitalizations,” admissions related to any of four medical conditions that some authorities believe should be treatable outside the hospital or in which optimal outpatient care should be able to prevent the kind of exacerbations of chronic conditions that trigger hospitalization, they found a similar pattern: the rate of potentially preventable hospitalizations was 2 1/2 times higher in the dually eligibles compared to patients in PACE (100/1000 person-years for PACE patients and 250/1000 person-years for dually eligible patients). Since hospitalization causes all kinds of problems in frail older people, and the cost of hospital care is the biggest piece of the Medicare budget, any program that produces these results deserves our attention.
So how does PACE keep patients out of the hospital? Unfortunately, the new study does not address this crucial question. The authors comment only that there are “many components that may affect hospitalization” and enumerate the unique features of PACE: it is capitated (the program receives a lump sum payment for each member to take care of all his or her medical needs), it provides care via an interdisciplinary team (physician, nurse, social worker, and physical therapists and others as needed), and it centers much of the care it offers in a kind of senior daycare program known as adult day health.
I suspect that the secret to PACE’s success is twofold. First, the members of the interdisciplinary team spend time with the patient and family to review the big picture—the enrollee’s major health problems and their implications—and, based on this understanding, they come up with a plan of care. Second, the clinicians try to bring services to the patient instead of bringing the patient to the services. That means diagnosing and treating problems in the adult day health center or at home.
If this sounds familiar, it is the prescription I wrote about in my recent article, “When Frail Elderly Patients Get Sick: Alternatives to Hospitalization” and have blogged about in these pages. If PACE has the master key to the problem that has bedeviled American healthcare—how best to care for its sickest, most vulnerable patients—then maybe it’s time to fashion other similar keys, creating models that will appeal to a frail elders of many ethnic groups, varying socioeconomic status, and in many geographic regions.
I just read a report describing the state of palliative care around the world that made me appreciate how far we have come in the US. Here, about 45% of people who die were receiving hospice care at the time of death; worldwide, the figure is 14%.
We still have an enormous amount of work to do at home. Many of those who die with hospice services were enrolled in the program for only a few days, giving them little chance to benefit; and palliative care, a more comprehensive approach than hospice, (hospice is focused on the last six months of life and is generally limited to comfort care), is available in only two-thirds of American hospitals. But according to the recently released “Global Atlas of Palliative Care,” the majority of countries in the world have no palliative care services at all.
The report endorses the World Health Organization definition of palliative care as an approach to patients with life-threatening illness and their families that focuses on improving quality of life. It supports the idea that palliative care should be a basic human right for the 20 million people who die each year with medical conditions such as chronic heart disease, cancer, and chronic lung disease. By treating pain and other physical symptoms and by addressing psychosocial and spiritual issues, palliative care improves the final phase of life in a compassionate and cost-effective way. And since nearly 70% of the 20 million deaths are in older individuals, the issue is primarily although not exclusively a geriatric concern.
What struck me about the report is that one of the major barriers to patients’ receiving palliative care is restrictions on opioid prescribing (morphine and its cousins): 80% of the world’s population lack adequate access to opioid medications for pain control. In fact, the US, Canada, Australia, New Zealand and a few other western countries account for 90% of the world’s use of these medications that are so essential to good care near the end of life.
At the same time, we read in the newspapers about the epidemic of deaths from opioid overdose. The death of actor Philip Seymour Hoffmann with a needle in his arm is just the most recent example. In 2011, a landmark study found that opioid overdose is the second most common cause of unintentional death in the US, close behind motor vehicle accidents: 74% of the unintentional deaths involving medications were related to opioids.
How are we to reconcile the need for more palliative care, which will require greater opioid use, and the rising rate of morphine-related deaths in those parts of the world where morphine is widely available? First, it’s important to realize that most, probably almost all, of the overdoses occur in patients who are not receiving palliative care or hospice. In one study of the association between opioid prescribing patterns and opioid-overdose-related deaths, only 2 patients were enrolled in a palliative care or hospice program at the time of the overdose. While the cause of death might have been misclassified in some of the palliative care patients, the evidence so far suggests that overdoses are not common in this population. Second, the best way to address opioid overdose involves a variety of strategies other than limiting use in situations of need. Many states have recently introduced regulation to prevent “diversion” of narcotics (funneling of prescription drugs from the intended recipient to a drug addict). Another promising approach involves providing narcan, an opioid antagonist, to members of the community where people at risk of overdosing live. When such a program was introduced in North Carolina, the result was a drop in the proportion of opioid deaths due to prescription drugs from 82% to 10% in 2 years.
I would regret to see the many older patients with pain or shortness of breath (another symptom that responds to morphine) refuse opioids because they are afraid of their potential for abuse. Yes, we have a problem with the abuse of opioids in the US. But patients in the final stage of life who are receiving palliative care are not the problem.
When I was a medical resident at Boston City Hospital, a large, public, inner city hospital, I began wondering whether hospitals sometimes caused as many problems as they cured. Over and over, I saw older patients admitted with one disease such as pneumonia or a heart attack, who ended up falling and breaking a bone or getting a blood clot from being confined to bed. So I did a study in which I measured how often older people became confused, stopped eating, developed incontinence, or fell while they were in the hospital. I tried to separate out those cases in which the new symptom could be plausibly related to the admitting diagnosis: for example, someone who was hospitalized with a stomach ulcer would normally stop eating during the initial treatment, and someone with a stroke might well be confused. Then I compared the rates at which people over 70 developed these unexpected complications with the rates at which younger people developed them. Finally, I speculated that each of these problems might trigger a cascade of adverse events: a patient who became incontinent might have a catheter placed in his bladder, which in turn might cause a urinary tract infection; a patient who got confused might be physically restrained and his immobility might lead to a blood clot.
What I found was that among the 502 patients I examined, a startling 41% of those over 70 developed 1 or more of the 4 problems I was interested in compared to only 9% of the younger group—and these were all problems that could not clearly be related to the acute illness for which the patient was being treated. It made me question whether hospitals were a safe place for older patients.
Of course the older patients might have developed the same difficulties if they had been cared for at home, but I was skeptical. I thought that the unfamiliar environment of the hospital might be causing the confusion so common in hospitalized older individuals. I believed that being in a strange place might lead people to have trouble finding the bathroom at night and to fall as they groped trying to find their way. And certainly the response of doctors and nurses to these new symptoms—putting in a catheter or using physical restraints or sedating medications—was far less likely to occur in the home setting.
Stimulated by my study and others like it, some physicians tried to design safer hospitals. That’s a noble endeavor and the result, the ACE unit (acute care for elders) has made it somewhat less likely that patients develop the kinds of complications I enumerated and far less likely that doctors and nurses responded to those complications, when they did occur, in the unfortunate ways I wrote about. But desite these improvements, older hospitalized patients have an unacceptably high risk of becoming acutely confused, receiving sedating medications, and falling, among other problems.
At the same time that older patients continue to do poorly in the hospital—particularly the oldest and the frailest of the old—they have very high rates of repeat admissions to the hospital, sometimes within 30 days of discharge. As a consequence, many frail elderly patients have not just one opportunity to develop complications in a short period of time, but several chances. As it turns out, Medicare is very concerned about the high rate of readmissions, not so much because the Medicare program recognizes that hospitals can be hazardous for your health, but because repeated hospitalizations are very expensive. Not only that, but Medicare officials suspect that the reason older patients are being readmitted is that they weren’t properly taken care of the first time round. So the solution, Medicare reasons, is to penalize hospitals for high readmission rates, thus strongly incentivizing them to assure they get things right during the initial hospitalization.
It is a nice idea, and there is quite a bit hospitals can do to prevent readmissions. They can make sure patients are taking the medications they are supposed to take once they get home. They can check that they have a follow up appointment with their primary care physician within a few days of discharge. They can guarantee that the primary care physician receives a good summary of what happened in the hospital. But the assumption underlying the push to decrease readmission rates is that if only doctors do a good job with their frail, old patients, those patients won’t get sick again. The truth is that frail, old patients will inevitably get sick, even if physicians and nurses and hospitals do the best possible job taking care of those patients. The reason for this sad reality is that the essence of frailty is a heightened vulnerability to illness. So frail people will, by definition, repeatedly become sick.
Which brings me full circle to the study I did in the 1980s about the adverse consequences of hospitalization in the elderly. The question, as I posed back when I wrote up my findings many years ago and again in an article I published in the Annals of Internal Medicine this week, is how we should respond when frail elders get sick. And my answer, then as now, is that we should try very hard to keep them out of the hospital. That means developing viable alternatives to hospital treatment. Frail, old people will sometimes want to be hospitalized for their acute medical problems. The hospital may prove to be the best site for achieving certain goals of care. But if they are interested in maximizing their quality of life, as many frail elders are, and if they have the option of home rather than hospital care, many of them would choose that route.
The secret that policymakers do not seem to have recognized is that doing all these good things could save Medicare billions of dollars. Hospital care makes up 25% of Medicare spending and frail elders account for a disproportionate share of hospital days. So if we want to avoid hospital-induced iatrogenesis and assure that treatment conforms to patients’ goals and save money, we need to design new ways to treat patients outside the acute care hospital.
Recently, a friend commented that she was not sure whether or not to agree to a “DNR order” for her 90 year-old mother. Her mother has dementia and lives in a nursing home; she is her mom’s health care proxy. Complicating her decision was the knowledge that her mother had chosen a DNR status when she was cognitively intact, but then reversed her decision at the time of acute illness, believing that “DNR” meant she would not receive vigorous treatment for medical problems such as an infection or congestive heart failure. My friend told me she believed the purpose of a DNR order was to avoid a protracted, painful death and that DNR was synonymous with comfort care.
The truth is that DNR means “do not perform CPR”—the “R” in DNR refers to resuscitation, which is shorthand for “cardiopulmonary resuscitation.” CPR is a procedure intended to counteract a cardiac arrest—the sudden cessation of the heart beat and of breathing. CPR involves administering electric shocks and, more often than not, providing artificial respiration, usually through a breathing machine (ventilator). In principle, DNR or, as it should more properly be called, since there is only a small chance that CPR will actually succeed in restoring cardiac function, DNAR (do not attempt resuscitation) refers only to what will or will not be done if the heart stops beating and breathing ceases. It has no implication for any other form of treatment. But nearly 40 years after the first DNR orders were written in hospitals, confusion about their meaning persists.
It’s not just patients and families who are confused: physicians are confused as well. I just read Sheri Fink’s book, Five Days at Memorial: Life and Death in a Storm-Ravaged Hospital, in which the triage decisions made during Hurricane Katrina included placing patients with a DNR order at the bottom of the evacuation list. Reportedly, physicians at Memorial thought that patients could have a DNR order only if they were terminally ill, which is false: a patient can elect a DNR order whenever the burdens of CPR are felt to outweigh the benefits, or if CPR is thought to be extremely unlikely to succeed--regardless of the underlying medical condition. When it looked as though not all of Memorial Hospital’s patients were going to be evacuated, it was the DNR cases who were to be left behind, sedated so as to ease their allegedly inevitable and imminent deaths.
And it’s not just in the midst of a disaster that physicians mistake “DNR” for “Do Not Treat.” Study after study has shown that physicians say they would not administer a whole variety of treatments to patients who are DNR. One representative study of 241 physicians found that they were far less likely to agree to transfer a patient to the intensive care unit or even to perform simple tests such as drawing blood.
Most recently, physicians and nurses caring for pediatric patients also told interviewers that in practice, DNR means far more than just do not perform CPR. In this survey of 107 pediatricians and 159 pediatric nurses in a hospital setting, 67% believed a DNR order only applies to what to do after a cardiac arrest—but 33% said it implied other limitations. And 52% said that once a DNR order is in place, a whole host of diagnostic and therapeutic interventions should be withdrawn, over and beyond CPR, and a small but disturbing minority, 6%, said that a DNR order means that comfort measures only are to be provided.
Why, so many years after the concept of DNR was introduced, does it remain so problematic? I think both patients and physicians implicitly recognize that asking about CPR is simply the wrong question—that’s why they assume DNR refers to so much more than what doctors should do if the heart stops beating. The right question has to do with figuring out what it is that medical treatment is supposed to achieve. Is it prolonging life at any cost? Is it providing comfort and dignity? Or is it something in between, preserving those basic functions such as walking and talking and seeing and hearing that a person values most? Only after defining the overall goal of care does it make sense to focus on delineating the specific treatments that are most consistent with achieving those goals.
An enormous amount of energy and ink have been squandered on debating about cardiopulmonary resuscitation, one of many possible medical treatments that seeks to achieve one of several possible medical goals. Maybe it’s time to pull the plug on DNR orders, banning them unless there is first a conversation about the overall direction of medical care.
One approach to doing exactly this is POLST, Physician Orders for Life-Sustaining Treatment or, as it is called in some states, Medical Orders for the Scope of Treatment. This is a medical order, just like an order a doctor writes in a hospital for antibiotics or for blood tests; it is not just a wish statement about future care. It includes a list of specific interventions that a prospective patient has agreed are undesirable under any circumstances, and often includes CPR along with other treatments such as dialysis or artificial nutrition. But before a physician and patient agree on such an order, a conversation is supposed to take place about the goals of medical care. The problem is that it's far from clear that patients and doctors are having those discussions. They may simply be jumping to the final step, writing that order. POLST is a promising development, but only if at least as much time is spent on talking about the big picture as on its implementation.
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?
