My father will be 90 next month. He lives in a nursing home because he needs help with all the most basic tasks—eating, dressing, bathing, walking. But my father also has dementia, which has been getting worse, as dementia generally does. As a geriatrician, I know that one of the few ways to make a person with dementia better is to take away any medications that might be contributing to the cognitive impairment. So when I realized my father was still taking a small dose of the tranquilizer valium (diazepam) every day, I suggested it be stopped. I was stunned when my father’s doctor called me to say he felt stopping the valium posed an ethical dilemma.
An ethical dilemma? Valium is on the most widely recognized list of medications that are generally inappropriate for use in older people. The American Geriatrics Society recommends against prescribing valium in the elderly because the drug accumulates in the body, takes days to weeks to be eliminated from the system, and is notorious for causing confusion and lethargy, especially in people with dementia. Now guidelines and recommendations are not absolute. Valium has not been taken off the market by the FDA. And my father is only on a low dose of the medicine. For years, he was on a far higher dose because it helped control his debilitating panic attacks. When I was growing up, he used to have panic attacks every few weeks, even with high dose valium, but the attacks were far worse without the valium. Multiple efforts to find another drug that was equally beneficial without potential side effects had failed, so my father stayed on valium. Over the last few years, his doctors have tapered the dose, but they never stopped the drug entirely. Since entering the nursing home 2.5 years ago, he has remained on valium even though he hasn’t had a single panic attack. And now he is sleepy much of the time—he can’t keep his eyes open when you try to talk to him—and is more confused than ever.
Why, then, was stopping valium ethically problematic? It might seem, by contrast, that continuing a drug that every geriatric authority deems pernicious is what is ethically problematic. But it turns out that 1.5 years ago, when my father’s mental faculties were better than they are now, though hardly normal, he told his physician that he wanted to stay on valium. So in the view of that same physician, stopping the medication now would be a violation of the all-important ethical principle of respecting autonomy.
Now I’m all for respecting a patient’s right to make medical decisions for himself. But making a medical decision assumes the patient has the capacity to weigh the risks and benefits of the treatment. And I am quite confident that my father, who is unaware that he even has cognitive impairment, cannot understand that valium could be worsening his cognitive impairment. I am sure that my father, who does not remember what he had for breakfast or even if he had breakfast, has no recollection of when he last had a panic attack. He is simply unable to evaluate the situation, and to rely on the opinion he had 1.5 years ago (assuming he understood the issues then, which is another matter), is absurd. “Respect for autonomy” is not equivalent to “the customer is always right.” It is not respectful of a person’s right to determine what happens to his body for a physician to mindlessly follow the dictates of the patient. When a cancer patient declines potentially life-prolonging treatment, should his oncologist accede to his wishes without first being sure the patient understood both what would happen if he got the treatment and what would happen if he didn’t?
There’s another problem with the assertion that my father should continue to get valium today just because he previously requested the drug. Leave aside for the moment the issue of whether he has the capacity to make any medical decisions. Even a competent patient cannot demand non-beneficial treatment. This is a point that both patients and physicians seem to have trouble accepting. Medicine is a profession and the essence of a profession is that its members have a particular expertise. Physicians are uniquely positioned to make medical diagnoses and to offer treatment based on their clinical assessment and medical judgment. Patients can decline the treatment if there are several reasonable options, and they can select which of the various possibilities makes most sense to them, given their personal views of the side effects they are keenest to avoid and the benefits they are most eager to experience. But patients cannot demand antibiotics for treatment of a viral infection or laetrile for treatment of cancer. Sometimes the treatment the patient wants is possibly effective, though only very, very rarely, and the issue becomes whether patients have a right to insist on treatments that are exceedingly unlikely to work—especially if they are fraught with danger and very expensive. But in my father’s case, it just doesn’t make sense to assert that he could demand valium if his physician believes it is not medically indicated (and his doctor agrees it is not a good drug for him), even if he had the cognitive capacity to discuss medical issues.
But perhaps even more troubling to me than the failure to recognize that the right to make medical decisions presupposes competency, and even more disturbing than the confusion about whether patients can demand non-beneficial treatment, is the profound misunderstanding about the nature of advance care planning. Now advance care planning is something I think about a great deal. It’s a topic I write about on this blog and elsewhere. Advance care planning is a process in which a person who is of sound mind indicates what approach to medical care he would want if he became ill and was unable to make decisions for himself. If advance care planning is to work, it’s crucial that when a patient articulates his wishes about future care at one point in time, and then finds himself in exactly the situation he envisioned at a later time, his physicians abide by those wishes. What’s not right—and this is what my father’s doctor worried about—would be to cavalierly ignore or even reverse a thoughtful, carefully made decision once the patient loses the capacity to make decisions. It would make a mockery of advance care planning if, for example, a patient while clear-headed said he would under no circumstances want CPR attempted, and as soon as he developed dementia, his health care proxy or physician reversed the patient’s “DNR” order.
So at issue is what exactly my father meant when he said, 1.5 years ago, that he wanted to continue taking valium. Did he mean that he wanted to take valium for the sake of taking valium? Did he meant that if his Parkinson’s disease became so severe that he could no longer swallow, he would want a feeding tube inserted just so he could continue to get valium? Did he mean that if a better drug came along, one that was more effective and with no side effects at all, he would nonetheless prefer to keep his valium? Or was he really saying that he wanted to continue taking valium as long as it effectively controlled his panic attacks, and he was willing to put up with some minor side effects in return for this benefit? If so, then it follows that if the valium is no longer needed for control of panic attacks, there is no reason to keep on taking it.
The story has a happy ending in that my father’s physician acknowledged my reformulation of the earlier statement “I want to keep taking valium” was plausible. The doctor will discontinue the valium on a trial basis. Now it’s conceivable that the panic attacks will return. Perhaps the reason my father hasn’t had any such episodes in the last 3 years is that the valium has been working wonders—even though for the previous 30 years, valium never ablated the panic attacks, it merely attenuated them. In that case, the doctor will again prescribe valium for my father. It’s also quite possible that discontinuing valium will have no discernible effect—either on panic attacks or on my father’s cognition. He will remain just as befuddled and sleepy as he is now. But at least we will not have uncritically adhered to something my father once said, in a misguided attempt to respect his autonomy.
While this particular “ethical dilemma” looks as though it will be resolved, I worry about all the other physicians who fail to appreciate the importance of ascertaining the patient’s understanding of the issues before blithely following his wishes; I worry about all the patients and physicians who do not distinguish between refusing unwanted medical treatment (a legitimate patient right) and demanding non-beneficial treatment (not a patient right); and I worry about how advance care planning is implemented. The latest variant of advance care planning is the POLST form (physician orders for life-sustaining treatment) and related efforts with similar names (in Massachusetts, it is MOLST), which is actually a medical order. In this approach, patients decide together with a clinician what specific treatments they would accept and which they would not (this can include CPR, ventilators, dialysis, feeding tubes, intravenous fluids or other interventions) and sign an order to this effect, an order that is supposed to be binding on all medical personnel: on EMTs in ambulances, nurses in nursing homes, and physicians in emergency rooms and hospitals. It’s a valiant attempt to make sure that patient autonomy is respected. But whether it will achieve this laudable aim depends on whether patients have the capacity to make decisions when they sign the form and whether they truly understand the underlying issues. Today, patient’s wishes are often not respected. Tomorrow, we may be imputing “wishes” to patients that they never had.
March 23, 2014
March 16, 2014
No Man is an Island
Early in my career as a geriatrician, a colleague of mine asked me to see a hospitalized patient of his who was having a great deal of difficulty with self-care. The patient lived with her daughter, who was finding caring for her mother an overwhelming responsibility: her mother just needed more help that she could provide. I suggested that the patient work with a physical therapist, recommended adjusting some of her medications, and proposed hiring a home health aide (a person who could assist with bathing and dressing), but the reality was that even if the patient’s balance improved and she had more assistance, the situation would be tenuous at best. But Mrs. Palmer, as I’ll call her, was adamant: she wanted to return to her daughter’s home. Her daughter was equally insistent: she could no longer provide the care her mother needed; her mother would have to move to a nursing home.
When I discussed the stand-off with my colleague, Mrs. Palmer’s primary care physician, I told him it was the patient’s decision. That’s what my training in biomedical ethics had taught me—patients had the right to make their own decisions about their own health care. He was incredulous. He felt it was entirely up to the daughter whether or not she took in her mother. Finally, we agreed that it really was a joint decision and that our role was to sit down with both mother and daughter and facilitate a discussion between the two of them in which they each explained their concerns.
Years later, I remember this story because it was probably the first time that it struck me just how individualistic our model of healthcare is--and how unworkable that model is. When we speak of medical decision-making, the image we have is of a patient rationally weighing the pros and cons of the various alternatives that the physician presents and making a choice based on personal values and preferences. The current standard of care is “shared decision-making,” which means the physician provides the patient with the alternatives, explains the risks and benefits of each, and helps guide the patient through the decision process, but the final decision is the patient’s. If the patient is incapable of making a decision, usually because of either temporary or permanent cognitive impairment, then our expectation is that the health care proxy, usually a family member, will make the decision instead, and that that decision will be made from the point of view of the patient. The proxy is supposed to use “substituted decision-making,” which means doing what the patient would want if the patient were capable of choosing. Rarely does “shared decision-making” mean that the patient, together with significant others, together discuss what would be best for all of them. But for frail elders—and maybe for many other people as well—it is this sense of “shared” decision-making that is most appropriate.
The importance of this kind of shared involvement in medical care is highlighted in a short piece in the Journal of the American Medical Association this week. Appearing in the section labeled “A Piece of My Mind,” a pediatrician laments the decisions that were made for her father, who has dementia, decisions that failed to include the interests or well-being of her mother, his primary caregiver. At issue is not just “caregiver burden,” the topic of another article in the same issue of JAMA, although this is certainly a concern. At stake is the recognition that no man is an island.
The choices we make affect others around us, from our immediate family to our community, to the society at large. The decisions made by a single individual acting in his or her best interest may have emotional, physical, or financial repercussions. I don’t mean to suggest that making medical decisions is some sort of zero sum game—anything that helps me will hurt someone else, maybe even, as in the case of the Palmer family, the patient’s child. Often, the unit of analysis should be the couple or mother and daughter, recognizing that it is their joint welfare that we are seeking to maximize.
The US is a highly individualistic society. As we age, the limits of such a relentless focus on each person, with little regard for family, community, or nation, becomes dramatically apparent. Perhaps it’s time to rethink how we make the medical decisions that affect older people, and everyone around them.
When I discussed the stand-off with my colleague, Mrs. Palmer’s primary care physician, I told him it was the patient’s decision. That’s what my training in biomedical ethics had taught me—patients had the right to make their own decisions about their own health care. He was incredulous. He felt it was entirely up to the daughter whether or not she took in her mother. Finally, we agreed that it really was a joint decision and that our role was to sit down with both mother and daughter and facilitate a discussion between the two of them in which they each explained their concerns.
Years later, I remember this story because it was probably the first time that it struck me just how individualistic our model of healthcare is--and how unworkable that model is. When we speak of medical decision-making, the image we have is of a patient rationally weighing the pros and cons of the various alternatives that the physician presents and making a choice based on personal values and preferences. The current standard of care is “shared decision-making,” which means the physician provides the patient with the alternatives, explains the risks and benefits of each, and helps guide the patient through the decision process, but the final decision is the patient’s. If the patient is incapable of making a decision, usually because of either temporary or permanent cognitive impairment, then our expectation is that the health care proxy, usually a family member, will make the decision instead, and that that decision will be made from the point of view of the patient. The proxy is supposed to use “substituted decision-making,” which means doing what the patient would want if the patient were capable of choosing. Rarely does “shared decision-making” mean that the patient, together with significant others, together discuss what would be best for all of them. But for frail elders—and maybe for many other people as well—it is this sense of “shared” decision-making that is most appropriate.
The importance of this kind of shared involvement in medical care is highlighted in a short piece in the Journal of the American Medical Association this week. Appearing in the section labeled “A Piece of My Mind,” a pediatrician laments the decisions that were made for her father, who has dementia, decisions that failed to include the interests or well-being of her mother, his primary caregiver. At issue is not just “caregiver burden,” the topic of another article in the same issue of JAMA, although this is certainly a concern. At stake is the recognition that no man is an island.
The choices we make affect others around us, from our immediate family to our community, to the society at large. The decisions made by a single individual acting in his or her best interest may have emotional, physical, or financial repercussions. I don’t mean to suggest that making medical decisions is some sort of zero sum game—anything that helps me will hurt someone else, maybe even, as in the case of the Palmer family, the patient’s child. Often, the unit of analysis should be the couple or mother and daughter, recognizing that it is their joint welfare that we are seeking to maximize.
The US is a highly individualistic society. As we age, the limits of such a relentless focus on each person, with little regard for family, community, or nation, becomes dramatically apparent. Perhaps it’s time to rethink how we make the medical decisions that affect older people, and everyone around them.
March 09, 2014
Everyday Ethics
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.
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.
March 03, 2014
In Good Company
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.
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.
February 24, 2014
Keeping PACE
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.
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.
February 16, 2014
The Double-Edged Sword
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.
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.
February 09, 2014
Barking Up the Wrong Tree
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.
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.
February 03, 2014
Pulling the Plug on DNR Orders
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 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.
January 27, 2014
After Life
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.
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.
January 19, 2014
Up, Up, and Away!
“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.”
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.”
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