April 14, 2014

Call the Concierge

My mother got a letter from her doctor this week informing her that he is going into “concierge medicine.” If she wants to keep him as her doctor—and she does (she’s 88 and has known him for years)—she will have to sign up for his new plan, paying a retainer fee of $3500 a year on top of what she pays for Medicare A, Medicare B, and Medicare D. I know what her doctor will get from this arrangement: if he succeeds in limiting his practice to 400 people, he will collect an additional $1.4 million of revenue a year, minus whatever he loses by shrinking the size of his panel. But what would my mother get?

According to the doctor’s letter, she would have more same-day appointments in case of emergency (though major emergencies still require a visit to a hospital emergency room), longer appointments (she's never felt short-changed by an appointment), and the opportunity to exchange emails with her physician (which she already does). She would also have the services of the doctor’s staff to help make appointments with specialists and to coordinate care (which the secretary does routinely)--this is presumably the “concierge” in the title of the practice. In short, the only reason for my mother to shell out a retainer fee of $300 every month is to be able to keep her current physician.

As is probably pretty clear, I don’t much care for this arrangement. Not only do I see little benefit for my mother, but I am also concerned it is creating a two tier medical care system, with one level for affluent people who can afford concierge medicine and one level for everyone else. And while there are ample examples of inequity in medical care today, the tendency is to try to remove disparities, not to create new ones. In addition, fee-for-service medicine in general and solo practice medicine in particular are widely reported to be on their way out—they have proved to be poor strategies for addressing the complex needs of today’s patients. Concierge medicine is a trend in the wrong direction. What’s going on here?

By all accounts, the first “concierge practice” was set up by two internists in Seattle in the mid 1990s. They were interested in having a small panel of patients with whom they could have a strong, personal relationship. Like all the doctors who have joined or established concierge practices since then, they wanted less stress and less burn out and they wanted to practice a more old-fashioned style of medicine, less driven by algorithms and protocols and with fewer forms to fill out. 

The appearance of concierge practices engendered some fairly heady criticism: one physician expressed concern that while such practices increase continuity of care for the minority of patients who stay in the practice, they increase discontinuity of care for those who leave and have to find care elsewhere.  He worried that these practices would undermine the cross-subsidization that is essential for universal coverage—the whole idea of insurance assumes that risks are shared across a large pool. Concierge practices are a form of cherry-picking patients. And shrinking patient panels could further exacerbate the shortage of primary care physicians. 

What we actually know about how many such practices there are and how they operate is based largely on two government-commissioned reports. A GAO report in 2005 found that there are several different types of concierge practice. There are the fee-for-extra-service models, which accept health insurance but offer something that conventional insurance doesn’t pay for (longer visits, more visits, round the clock physician access). There are the fee-for-care models, which do not accept health insurance and where the fee paid to the physician is supposed to cover care. And there are hybrid models, where physicians offer the patient a choice of either arrangement. The GAO found only 146 doctors with concierge practices in its survey. A MedPAC study (Medicare Payment Advisory Commission) in 2010 tried to determine if concierge practices were complying with Medicare rules  and whether they were adversely affecting the access of Medicare beneficiaries to care. This report identified 756 concierge practices, though they obtained estimates of anywhere between 1000 and 2500, nation-wide. It found the average panel size was 250, about a tenth that of the physician’s practice before he or she adopted the concierge model. MedPAC concluded that after 15 years of concierge practices, they remained a small niche and not a major threat to the viability of primary care.

To add to these reports, a recent survey of 13,500 physicians for the Physicians Foundation found that nearly 7% of respondents said they planned to switch to concierge model in the next 3 years. And another survey, this one by the Concierge Medicine Research Collective found that among physicians already practicing concierge medicine, 55% were very satisfied, 27% were somewhat satisfied and 18% were dissatisfied. The majority, but not everyone (62%) reported an increase in income. 

All these surveys, statistics, and ethical analyses pay relatively little attention to the root problem that is leading to the growth of concierge medicine. What does the very existence of this phenomenon say about the state of primary care? And what can be done to make both physicians and patients happier?

I suspect that the fundamental driver behind concierge medicine is the belief by many physicians that to do a good job caring for their patients, especially those with multiple medical problems or advanced illness, common characteristics of elderly patients, they have to spend a lot of time. And if they spend as much time as they feel is appropriate, they won’t be able to see as many patients as they do now and will therefore make far less income than they do now. If this analysis is correct, we need to ask: how much time do doctors really need to spend? Are they spending their time in the best possible way today? Do insurance company mandates to do various tests and fill our certain forms promote or hinder good care? What are the financial constraints under which they are working?

Now it seems to me that while time is one aspect of taking good care of patients, the real problem with primary care is that doctors need to do a better job sharing responsibility with physician extenders, patients, and their caregivers. Someone needs to make sure patients are adhering to the standard of care, say, for diabetes, by assuring they get appropriate foot care and the necessary eye exams--but it doesn't have to be a doctor; it could be a nurse. Someone needs to monitor chronic conditions, say weight in a patient with heart failure--but it could be the patient's spouse. Physicians need to spend more time on advance care planning (talking about what overall approach to care makes sense for a given patient) and less time on assuring tight control of diabetes in 85-year olds, where such control is probably not useful. The way forward is the team model used in geriatrics, palliative care, and HIV care, enhanced to include patients and patients' caregivers.

But primary care doctors are unlikely to pursue this path with current reimbursement rates. Geriatrics, palliative care, and HIV doctors are among the least well paid of any physicians. To help stimulate greater use of this model, compensation for primary care will need to rise and, in this era of cost-cutting, the only way that can happen is if specialty income falls. A 2013 report on physician compensation in the US found that the mean salary for an orthopedist is $405,000 (with many orthopedists earning considerably more than this), the mean salary for a cardiologist is $357,000 and the mean salary for a family physician is $175,000. Internists are paid only slightly more, at $185,000. Moreover, salaries for orthopedists have gone up by 27% and those of cardiologists by 13% since 2011, compared to salaries for family physicians, which have gone up only 5%. My proposal will encounter enormous resistance by the well-organized lobbies for subspecialty medicine. But it is an important first step.

If we want to stem the growth of concierge medicine—and I think we should—we will need to repair primary care.

April 06, 2014

No News is Bad News

It’s that time of year again, when the Alzheimer’s Association releases its annual report: Alzheimer’s Disease Facts and Figures. The 2014 edition doesn’t tell us much that’s new—which amounts to a good deal of bad news.

The facts boil down to these: Altogether, about 5.2 million people in the US have one form of dementia or another; 5 million of them are 65 or older. The older you are, the more likely you are to have dementia, except among the very old (those over 85), who have to be pretty vigorous to make it to extreme old age. Fewer than 4% of people under 65 have dementia; in the 65-74 year old age range, it’s 15%; among those 75-84, it’s 44%, and in those over 85, it’s 38%. As far as cost goes, Medicare will probably spend $113.8 billion on dementia care this year (much of that for hospital and post-acute care) and Medicaid will spend another $37.8 billion (much of that for nursing home care). Out of pocket expenditures for people with dementia will amount to another $36.8 billion, leaving another $28.8 of miscellaneous expenses (miscellaneous care seems to be a big ticket item). None of these “costs” include the time spent by informal (a euphemism for unpaid) caregivers. In 2013, caregivers devoted an estimated 17.7 billion hours to providing care to people with dementia. When this is valued at the rather low ball figure of $12/hour, it comes to a total of $220 billion/year. It's worth noting that these informal caregivers do all kinds of things, ranging from cooking and shopping to personal care to some pretty sophisticated medical care.

What is new in the current report is the special section on women and dementia. This refers both to women with dementia and to women who care for others with dementia. Women account for nearly 2/3 of all cases of dementia, principally but not entirely because they live longer than men. They are 2.5 times more likely than men to provide round-the-clock care for a family member with dementia. And what is most striking in this report is the results of a survey asking older women about their perceptions and fears regarding health in general and dementia in particular. When women age 60 and older were asked what disease they feared most, Alzheimer’s was at the top of the list, with 35% of respondents indicating it was their number one bugaboo. Cancer, incidentally, was number two, chosen by 23% of respondents. 

The take home message is that no matter what the epidemiologic studies from England and Denmark tell us about declining rates of dementia, and no matter what “brain games” companies such as Lumosity say will keep us sharp, dementia remains an enormous problem. It’s responsible for a great deal of pain and suffering, both among people with dementia and their caregivers. It’s a major contributor to out-of-control health care spending. But the good news—and there is a little bit of good news here—is that many of these problems have solutions that are within our reach. We cannot, at this point, do much about getting dementia in the first place. But once someone has the diagnosis, there’s a lot we already know how to do to help caregivers, on the one hand, and to avoid burdensome, unwanted, and costly medical tests and treatments on the other. We just need the will to create and finance programs that educate and support caregivers, physicians, and health care insurers.

April 01, 2014

Lotsa Lumps

Geriatrics would be a good deal easier if every older person suffered from just one medical condition. But most elderly people have more than one chronic disease and the older they are, the more chronic conditions they are likely to have. Since “multiple chronic conditions” is a mouthful, researchers coined the term “multimorbidity,” an only slightly less awkward way of expressing what is probably one of the most critical features of geriatric existence. It’s so critical because the best medical treatment, known as “evidence-based medicine,” is founded on studies of patients who don’t have multimorbidity at all. They are generally perfectly healthy except for the single disease being studied. So when we tell a patient that “studies show’ that blood pressure should be below 140 and that the best medication to take if the blood pressure is elevated is a diuretic, we mean that if the only problem is high blood pressure, then taking the diuretic is the best way to lower the risk of bad outcomes such as strokes and heart attacks. But if the patient also has another chronic condition, say Parkinson’s disease, which is being treated with the medication L-dopa (Sinemet), then giving that patient a diuretic to lower blood pressure could backfire—long before any heart attacks or strokes were prevented, the patient might fall down (both L-dopa and diuretics contribute to sudden falls in blood pressure when a person stands up) and break a hip. Simply assuming it makes sense to apply multiple guidelines to a patient with multiple problems can result in medication lists a mile long that cost a fortune and that cause more problems than they solve. So multimorbidity is a big deal in geriatrics. Now, for the first time, multimorbidity is getting the attention it deserves.

A couple of years ago, the American Geriatrics Society set up a task force to develop an approach to multimorbidity for physicians. This group generated a report that lays out the basic principles that should underlie care for a patient with multiple chronic conditions. And a recent symposium brought together physicians and researchers from a variety of backgrounds to come up with strategies for generating a better evidence base, for designing new guidelines, and for carrying out appropriate systematic reviews for patients with multimorbidity. The results of the symposium are published as 3 articles along with an editorial in the April issue of the Journal of General Internal Medicine. 

I wish I could report that these new guidelines-for-producing- guidelines came up with the solution to the problem of multimorbidity. I wish I could summarize the gist of these papers. They constitute a valiant attempt to find an answer to a vexing problem. They go far in enumerating the many obstacles to a solution. They provide an exhaustive list of all the issues that must be addressed in the future. But in the end, they advocate a technical solution to a dilemma that can only be addressed by eliciting patient preferences and by use of clinical judgment.

There are just too many different clusters of chronic diseases for physicians to come up with recommendations that clearly and unambiguously apply to a given patient. Consider just the 10 most common chronic diseases. For any group of 10 diseases, there are 45 pairs of diseases and 120 groups of 3 diseases and 210 groups of 4 diseases—and that doesn’t include clusters of greater than 4, even though plenty of older people have, say, arthritis, diabetes, heart disease, emphysema, and kidney problems. Even if it were practical to design a guideline for all the most common groupings, which it isn’t, that wouldn’t be good enough. What matters is not just how many diseases you have, but how sick you are and how well you can go about your day to day business (what geriatricians call your functional status). Someone who lives independently and shops and cooks for herself is in far better shape—and able to withstand a new medication or a brief hospitalization—than her counterpart with the same underlying chronic conditions who lives in a nursing home and needs help with all her daily activities.

I tend to agree with an article in the British Medical Journal that argues that “multimorbidity introduces clinical uncertainty in a way that is unlikely to be resolved by ever more sophisticated guidelines.” The authors advocate listening to patients to find out what matters to them and using clinical judgment to try to achieve their ends. A similar recommendation came from the American Geriatrics Society task force,  which even created a pocket card summarizing their key conclusions: consider patient preferences, consider prognosis, consider interactions among treatments, review the entire care plan, and communicate and decide on treatment together with patient and family. 

More research that measures quality of life outcomes as well as survival outcomes is of course important. But empirical studies alone will not solve the multimorbidity problem. Talking to patients about their overall health status and their goals of care, and figuring out together what tests and treatments make most sense in light of their status and their goals, just might.

March 23, 2014

Getting Autonomy Right

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, can 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 treatmentThis 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 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 JAMAalthough 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.

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.

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 Societyreveals 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.

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.