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?
