Caregivers Redux

In a recent issue of JAMA Internal Medicine, Drs. Sterling and Shaw from Cornell Medical Center make a case for physicians to pay greater attention to caregivers, both informal (unpaid, typically family members) and professional (paid). They argue that physicians will do a better job caring for patients suffering from frailty, dementia, or disabilities if they include them in their visits. The authors highlight how helpful caregivers can be, both as a source of information and as an instrument for implementing a treatment plan. They are right: it is high time physicians acknowledged the importance of caregivers and expanded the sacred doctor/patient relationship to include them. To that end, the authors exhort physicians to list the names and contact information of caregivers in the medical record and to ask their patients for permission to incorporate them in health-related discussions. But they fail to grasp the extent to which caregiver involvement can transform their patients’ medical care.

It's not just that caregivers, whether a daughter or a home health aide, might whisper into the patient’s ear that she should mention she’s been having episodes of incontinence—an example cited in the paper. It’s not only that caregivers might report memory lapses that the patient does not admit or remember she has been having. The availability of an on-site caregiver may enable the physician to embark on a course of therapy that would be unthinkable without a reliable partner, someone who can try various strategies and report back on their effectiveness. Much as a visiting nurse can serve as the eyes and ears of a physician at home and thus amplify the available treatment options, so too can caregivers potentially administer medication and inform the physician of the results in real time. Caregivers don’t just manage medications, as the authors imply, by purchasing drugs at the pharmacy and perhaps putting them in pill dispensers. They can learn to adjust dosages, decreasing warfarin in the presence of antibiotics or cutting the insulin dose in the face of gastroenteritis, perhaps allowing for home instead of hospital care. And caregivers don’t just provide inputs to physicians and follow orders. They can also be valued and indeed invaluable participants in discussions about what approach to care makes sense for a given patient. Does Mrs. Jones want all possible medical treatment, however invasive and however unlikely to work, in an effort to prolong life? Or does she want, above all, to stay in her apartment and be comfortable? Or is her main concern the ability to read and to play the piano so she will accept whatever medical interventions and supportive strategies are conducive to achieving these ends. Not only can caregivers help elicit the patient’s goals of care, but they can also evaluate whether the community supports (family, paid caregivers, financial resources) are adequate to implement a given plan.

So yes, it’s time to acknowledge the existence and importance of caregivers. But letting them in the examining room is just the first step. Caregivers need to be integrated into the medical team. They have a crucial role to play, just as do social workers and nurses. They are the key to better medical care, with “better” implying care that is in line with the patient’s preferences and values, not merely care that accords with the physician’s idea of optimal care. If those preferences translate into home rather than hospital as the site of care, they may even mean less expensive care.

     For more on helping caregivers in their role as members of the medical team, see my forthcoming book: The Caregiver's Encyclopedia: A Compassionate Guide to Caring for Older Adults.

November is “National Family Caregivers Month.” Upwards of 41 million Americans provide care to someone else (beyond normal childrearing responsibilities), and in the vast majority of cases that someone is an older adult, typically a parent or a spouse. Just exactly what do these caregivers do and how much time do they spend doing it? Two reports published in the last few months and supported in part by AARP shed light on both these questions.

The most recent report is “Valuing the Invaluable: Charting a Path Forward.” Released this month (November, 2019), it is an update of the 2015 report of the same name. Based on the latest available data, it assesses the economic value of caregiving at $470 billion, a calculation that estimates the average amount of time spent at 16 hours per week and values that time at $13.81/hour. Now this may be the average wage for a home health aide, so perhaps it’s the relevant way to compute the “value” to the economy. But it’s surely not typical of what the average adult could earn if she (it’s usually although not always a she) were not serving as a caregiver and were engaged in her usual occupation—perhaps being a lawyer or a teacher—instead. Taking the $470 billion figure as a floor, we see that even this low-ball figure is more than the total amount Americans spend out of pocket on health care ($366 billion in 2017) and it’s three times as much as Medicaid spent on what it calls long term services and supports, which includes nursing home care as well as home health aides, adult day care, and other programs.

As to what unpaid caregivers actually do, the job encompasses a variety of activities, ranging from dealing with insurance claims to providing transportation to medical appointments, to providing hands on medical and nursing tasks. The latter is what the second report, "Home Alone Revisited," addresses.

"Home Alone Revisited: Family Caregivers Providing Complex Care" was published in April, 2019 and, like Valuing the Invaluable, it’s an update of an earlier report, this one from 2012. The study finds that just under half of all family caregivers provide “complex care:” medical or nursing services ("M/N tasks") that until recently were primarily if not exclusively in the domain of health professionals. These tasks range from managing medications to using sophisticated technology such as a respirator or dialysis.

Not only are many caregivers delivering complicated medical treatment, treatment that often allows older people to stay out of nursing homes, but they are finding their responsibilities burdensome. They often report the activities are also rewarding, but they worry about making mistakes and suffer from minimal guidance from nurses and doctors.

The report observes that while we have made some progress in helping caregivers do their critically important work—for example, the CARE Act, which requires hospitals to ask older patients to name a caregiver and then include that caregiver in discharge planning, has been enacted in 41 states—much remains to be done. The authors conclude that health care systems and professionals must offer “instruction and support” to caregivers providing complex care.

All this is well and good, but I think we need to emphasize not just the concrete actions that caregivers take—preparing special diets, providing wound care, and operating durable medical equipment—but also the medical decisions they are expected to make. A key component of what caregivers do that is scarcely touched on in either report involves day to day management of chronic disease (the exception is the emphasis in the new report on managing pain, which is identified as a particularly challenging area for caregivers), deciding whether to adjust the medication dose or the flow of oxygen, determining whether to take the older person to the doctor’s office or the hospital emergency department. These crucial decisions that caregivers make all the time affect whether the patient gets care at home or in the hospital, gets invasive care or supportive care, takes expensive, newly developed medication or cheap, tried and true drugs. Such decisions have the potential to shape the older individual’s quality of life—and the national expenditure on health care. 

Caregivers should not engage in medical decision-making in isolation. They need the guidance of a health care professional. They need to spend time talking with the older adult and the physician about what overall goal of care makes sense at a particular point in time, given the patient’s general health and any limitations in daily functioning. If we want to support caregivers, and at the same time conceivably limit spiraling health care costs, we need to work with medical practices to teach them to partner with caregivers. Now that's a good activity for National Caregivers Month.

Caregivers are the Key

“Low levels of caregiver training are a missed opportunity for the health care system,” comments a research letter in JAMA Internal Medicine this week. Its authors continue: “Prior work suggests that training to better prepare family caregivers may improve health and reduce service utilization for those they assist.” In an age when health policy mavens are eager to find ways to decrease the enormous health care expenditures of “high-need” patients (also called “high-need, high-cost” patients), the potential contribution of caregivers has been sadly neglected.

The new study analyzes patient/caregiver pairs using data from the National Health and Aging Trends Study and the companion National Survey of Caregivers. Examining 1861 family caregivers of older individuals who live in the community and receive help in daily activities because of their health problems, the study confirms the paucity of relevant education in this group: only 7.3 percent of the unpaid caregivers reported receiving any training whatsoever. Put differently, 92.7 percent of family caregivers manage multiple medications, provide wound care, help with mobility and, in many cases, monitor specialized medical equipment entirely on their own. Is it so surprising that the older adults they care for have high rates of hospitalization? Their “carees,” the people they care for, typically suffer from multiple chronic diseases. If they knew how to manage acute exacerbations of those conditions—a flare of chronic obstructive pulmonary disease, for example, or a worsening of congestive heart failure; if they were equipped to deal with a predictable complication of those illnesses, such as a marked elevation of blood sugar in diabetes or the development of bronchitis in emphysema, then at least some of those hospitalizations might well be preventable. But the health care system does not routinely involve family caregivers in the ongoing treatment of frail, older adults. Only when their patients face a crisis such as the urgent need for dialysis or surgery or ICU care will physicians consult with caregivers. 

Shockingly, the new study found no association between the health status of the older adult and the degree of training of his or her caregiver. The degree of impairment, the extent of caregiver involvement, or the amount of caregiver burden, had no discernible effect on the level of support provided by the health care system. 

Also noteworthy are the age and sex of the caregivers: among the 1230 caregivers who themselves were older, two-thirds were women and their mean age was 81.8. I suspect the age distribution of caregivers shows two peaks: one composed of the adult children of the frail elders, the other made up of their spouses. 

We have to do better. We are investing energy in redesigning the health care system so as to provide better care for individuals with complex needs, focusing on the professionals who function within the system and the finances that underlie it.  Surely we could devote a little effort to the unpaid caregivers who are central to its effectiveness. A small step in this direction will be the publication of my book for caregivers, “The Caregiver’s Encyclopedia: A Compassionate Guide to Caring for Older Adults.” Look for it in late fall!

Who Cares?

As an ever-growing percentage of Americans live to extreme old age, with a correspondingly large proportion surviving long enough to become frail, family caregivers play an increasingly pivotal role in their care. Previous studies have documented how widespread caregiving is, how intense, and how medically oriented. But these studies typically are snapshots, looking at a single point in time. A new study, “Family Caregivers of Older Adults, 1999-2015,” uses several national surveys to examine changes in caregiving over time.

The take home message of this comparison is that the job of caregiving has become more challenging as the care recipients have become sicker and more disabled. In 1999, 18 percent of care recipients needed help in three or four areas. By 2015, this had risen to 26 percent. Caregiving has become more intense and of longer duration, with 45 percent of caregivers providing help for over four years in 1999, compared to 64 percent in 2015. 

What this means is that for caregivers to do a good job, they need to be more medically sophisticated today. In the groundbreaking 2012 study, “Home Alone: Family Caregivers Providing Complex Chronic Care,” 46 percent of family caregivers were found to provide one or more types of fairly sophisticated medical care. This percentage has undoubtedly grown over time, just as all the other indicators of complexity have grown. But there is no reason to believe that today’s caregivers are any better equipped than their predecessors to manage chronic disease.

The consequences of this shift are profoundly under-appreciated. Increased demands on caregivers result in emotional, cognitive, and financial stress. At least as important, and almost never addressed, are the consequences to the care recipients. Unless their family caregivers develop greater medical knowledge and unless they learn to navigate the maze that is our current health care system, they will pay the price in the form of more trips to the emergency room, more hospital admissions, more tests, and more procedures. 

If today’s frail older people wish to avoid burdensome and often unnecessary and even ineffective medical treatment, and if our society wants to avoid the financial cost of such treatment, then it behooves us to provide better support for caregivers. Caregivers are the key. In the next few months, I will take a small step in that direction with the publication of my book for caregivers, tentatively titled “Taking Care.” This book, to be published by Johns Hopkins University Press, will provide caregivers with the knowledge they need as their relatives make their way to the office, the hospital, the skilled nursing facility. It will teach them enough medicine to help them manage the acute symptoms and chronic diseases they are likely to encounter. Above all, it will help them think through decisions based on their family member’s underlying health state and preferences for care. Stay tuned!

No Man is an Island

The United States produces outstanding reports about just about any health-related topic you can imagine. Some of the reports are produced by branches of government: for example, the CDC issues a series of Vital Statistics Reports that summarize and analyze data about deaths, births, and diseases. Other medically oriented reports are produced privately, and the crème de la crème of such reports stem from the National Academies of Sciences, Engineering, and Medicine. 

Created by congressional charter in 1863 and signed into law by President Lincoln, the National Academy (as it was called until recently) is a private institution charged with providing “independent, objective analysis and advice to the nation to solve complex problems and inform public policy decisions related to science, technology, and medicine.” Its recent report, Families Caring for an Aging America, is in a long tradition of distinguished monographs. Some of these have gone on to be extremely influential, such as To Err is Human: Building a Safer Health System, the report published in 2000 that triggered a serious campaign to enhance the safety of hospital care), others languish on library shelves. Which category the new report on caregiving will fall into remains to be seen. So far, the response of the most influential newspapers has been resounding silence. It deserves better.

The theme of the report, the drumbeat intoning relentlessly throughout its seven chapters and eight appendices, is that no man—or woman—is an island. We are parts of families, whether defined biologically or otherwise, of neighborhoods, and of communities. In the words of the poet, John Donne:

                   

No man is an island,

Entire of itself,

Every man is a piece of the continent,

A part of the main.

As we age and develop assorted frailties, we rely increasingly on those others in our lives to help sustain us. The truth is that younger people are also parts of families, neighborhoods, and communities, and they, too, depend on others for sustenance, support, and succor. The notion that individuals act and think in isolation is a myth. Americans may be more individualistic and less communal in their attitudes and behavior than any other group in human history, but we are still fundamentally social beings. The collision between myth and reality is starkest, however, for those who are physically or cognitively frail, most commonly due to age-related changes.

In medicine, the relentless focus on the individual results in a paradox: in the words of Families Caring for an Aging America, “care delivery simultaneously ignores and relies heavily on family caregivers to provide ongoing support to older adults with cognitive and/or physical impairments.” According to one national survey, only 1/3 of family caregivers had ever been asked by a doctor, nurse, or social worker what they needed to care for their relative, and in a second survey, only 1/6 of caregivers had been asked what they needed to care for themselves. The evidence that caregivers are important is ample: the availability of a family caregiver is associated with fewer and shorter hospital stays for older adults, that caregivers reduce home health care use generally, and that they delay nursing home entry.

             The facts in the new report are not new.  But Families Caring for an Aging America is unusual in emphasizing the role of family caregivers in medical care as well as personal care, for dwelling on the effect of caregiving on the quality of health care as well as on the mental health and pocketbook of the caregiver. An entire chapter is devoted to “family caregiver integration with health care and long term services and supports.” The report assembles all the evidence demonstrating both the crucial role of family members (in the most generic sense) and the obstacles to their fulfilling that role. Caregivers participate in a wide variety of activities on behalf of their elderly charges, including making decisions about stopping and starting medications, selecting alternative treatment options when confronting a major life event, choosing whether to institute or continue life-support, and opting to move to congregate living, assisted living, or a nursing home. Despite the importance of family in older adults’ decision-making, “little attention has been directed at developing interventions to support older adults and their family member when confronting difficult decisions.” Moreover, caregivers are directly involved in the administration or supervision of a variety of sophisticated medical treatments, ranging from peritoneal dialysis to ventilators. Yet, doctors and nurses do little to provide those caregivers with the knowledge and skills they require to competently perform these tasks.

The report goes further: it outlines a strategy for change.

Change must begin with a “reorientation of care systems to a focus on family-centeredness.” That means health professionals need to listen to and honor the person and family’s needs, values, preferences, and goals of care. It means taking into account the physical and mental health of patients and caregivers, and engagement with their community. It entails developing a plan of care that is based on the patient’s needs and wants as well as what the family needs to provide support. It will require that the patient and family have access to timely, complete, and accurate information as well as the tools necessary to make shared and informed decisions. Overall, families need to be integrated into the care team to provide care and supportive services that are accessible, comprehensive, continuous over time, and coordinated across settings.

Medicare has taken a few small, shaky steps in the direction of implementing this model. CMS introduced a billing code that allows physicians, NPs, and PAs to be paid for time spent coordinating care for patients with multiple chronic conditions, without requiring that the patient be present and a physical exam be performed, the previous sine qua non of a “visit.” New home health agency regulations require that the plan of care developed, say, by a visiting nurse, identify the primary caregiver and assure that individual gets the necessary education and training to play the role required of him or her in the overall plan. But much, much more is needed and the report acknowledges this.

Families Caring urges the next US president to create a National Family Caregiver Strategy. Executive orders and new federal legislation should then “explicitly and systematically” recognize the essential role of family caregivers. This means designing specific assessment measures, programs, and research—and the funding to support them. In particular, the strategy should include mechanisms for Medicare, Medicaid, and the VA to identify family caregivers and assess their needs in the delivery of health care and long term services. It should involve directing CMS to develop, test, and implement payment reforms to motivate providers to engage family caregivers and to provide them with evidence-based supports. It should increase funding for programs that support family caregivers and explore adopting additional policies to provide economic support for working caregivers. And it should both collect data to monitor and track the experience of family caregivers, and also develop a multi-agency research program to evaluate caregiver interventions.

It’s a bold vision. And it will need to expand even further, starting not just with the doctors and nurses who care for older patients, but including the educational and training programs for those nurses and doctors. Medical school and nursing school are critical venues to model the kind of collaborative, team-based decision-making the vision assumes. It will need to go back even further, to high school and college, planting the seeds for the role that we will each play as a caregiver and a health care partner by educating young people about all the stages of human existence.

Can We Talk?

Roz Chast first published Can't We Talk About Something More Pleasant? in May of 2014. I thought it was one of the most honest, trenchant, and poignant descriptions of the last phase of life I'd seen. It's funny; it's sad; it's insightful. And it has much to teach caregivers. In honor of the imminent release of the paperback version, I had the opportunity to ask the author a few questions, which I'm posting here together with her responses. I'm including half the answers this week and the remainder will be posted next week.

MG: Your parents died in 2007 and 2009, but it looks as though you finished your book in 2014. Were you working on it all that time, creating the cartoons and the accompanying text, in which you capture your mother’s emotions, your father’s emotions, and your emotions, so beautifully—guilt, denial, affection, exasperation—or did you only start working on it years after their deaths? What made you decide to do this book, which is sometimes painfully honest and not the most flattering portrait of an aging couple?

RC: I wanted to remember my parents. I wanted to remember who they were—what they sounded like, the kinds of things they talked about. What they ate, what they argued about, how they looked… I have a kind of horror of forgetting things, and for me, writing and drawing about something is a way of remembering.

MG: In your book, there’s no mention of any doctor ever trying to engage your parents in a discussion of their wishes, not until years later when your father was 95 and hospitalized with a hip fracture and a DNR order was finally written. To the best of your knowledge, in the years between the beginning of the end (2001) and their respective ends (2007 and 2009), did any doctor ever try to bring this up? What do you make of this?

RC: As far as I know, no doctor brought this up. But I didn’t go with them to their doctor appointments until the very end, so I don’t know.

MG: One of my favorite cartoons in the book is the “Wheel of Doom.” The roulette ball could land on “death,” “deafness,” or “blindness then death,” to name a few. And then there are the “cautionary tales from [your] childhood,” truly implausible possibilities such as “killed by a baseball.”

RC: That is a completely true story. It was the son of my parents’ friends. His name, as I recall, was Ricky Laska. The  others were also stories I’d heard growing up: flower pot falling on guy, oboe, sitting on ground. ..Just thought I’d mention that.

MG: You present this as a way of showing that for your parents, all these outcomes are equally bad, a perspective that must have driven you crazy. But what it made me wonder was whether part of the problem with advance care planning as physicians conceive of it is that we tend to get too specific. We talk about “coma” and “persistent vegetative state” and “kidney failure,” which for normal people must sound much like your wheel of doom. Now your mother did say that she wouldn’t want to be a “pulsating piece of protoplasm.” Do you think your parents would have responded if their doctor had said, “So if you are ever a pulsating piece of protoplasm, we would not try to keep you going, but instead would try to keep you comfortable. But there’s a lot between the way you are now and a pulsating piece of protoplasm. If you couldn’t do anything for yourself—you couldn’t dress yourself, or get to the bathroom, or feed yourself—should we also focus mainly on comfort?”

RC: I think it’s so individual, when that border is crossed. And it’s possible that it changes. I.e., I remember when age 60 seemed impossibly old. Now, not so much. ;-)

MG: Speaking of states in between functioning—sort of—and being a pulsating piece of protoplasm, you do a terrific service by dwelling so much on what I call the in-between state, on frailty and decline, not just on death. For much of the time between your first visit to Brooklyn in 2001 and your mother’s death in 2009, she was frail. Your father spent over 5 years in this state of progressive dependence and disability. Do you have other thoughts about what would be useful to adult children when their parents are in that period of gradual decline?

RC: Get an elder lawyer to help your parents sort out stuff, to get a current will, to learn what “power of attorney” and “health care proxy” means, etc. And if you’re the person in charge, keep a notebook where you write down  all of the info you’ll have to keep track of: what drugs your parents are on, the dosages, their doctors, their doctors’ phone numbers, their pension plan information, the super and the super’s number, their neighbors and their numbers, bank info, your parents’ social security numbers… And if you’re in charge of hiring people to help take care of them, you’ll have to keep track of all of that too. Maybe to some people, this stuff is a big nothing. To me, it was very anxiety-producing.

The final part of this interview will be posted next week.

How Much Help Does a Helper Need for a Helper to Give Help?

For some time, I’ve been insisting that the exclusive focus on patients and doctors in our discussions of “shared decision-making” is misplaced. I’ve maintained that our single-minded devotion to “patient engagement” in the practice of medicine is likewise ill-conceived. For many older patients, making medical decisions and providing hands on care fall at least in part on the shoulders of caregivers, and for the oldest, frailest, and most cognitively impaired patients, the responsibility rests entirely with caregivers.Yet caregivers are consistently left out of the loop, or given inadequate information, or only called in at the eleventh hour. A new study in Health Affairs confirms my worst suspicions and argues that we need to provide considerably more support to caregivers if they are to function effectively as care partners.

The researchers identified a mere 66 studies that evaluated the involvement of caregivers in making one or more health-related decisions for seniors. Four of the studies tested an intervention such as a decision aid; the others were descriptive. Only 14 of the studies were quantitative; the remainder were qualitative or utilized a mixture of methods. The majority of the decisions had to do with either nursing home placement or end of life care. Almost all the studies identified unmet caregiver needs.

Interestingly, only one intervention led to improved decision making and didn’t seem biased, a study of a decision aid addressing the use of feeding tubes. But in general, what emerged from the analysis was that caregivers need more information, they need discussions of values and preferences, they need help in figuring out how to make a decision, and they need support from doctors and nurses—before, during, and after the fateful decision is made.

The new study also recognizes that caregivers are involved in making lots of small but consequential decisions, not just in major decisions such as whether an older person should move to a nursing home and whether the person should enroll in hospice. Deciding whether to bring a patient with cough and fever to the emergency room, for example, versus initiating treatment at home with oral medications and oxygen,  or using exclusively comfort-oriented measures such as Tylenol and morphine, has huge implications for the patient’s well-being, future trajectory, and for health care costs.

Caregivers aren’t yet another obstacle for busy doctors and nurses to overcome. Involving caregivers in no way diminishes patient autonomy—in fact, it promotes patient self-determination by providing a window into patients’ wishes and by helping clinicians implement those wishes. The caregiver needs to be seen as the clinician’s best friend, as the partner who can make all the difference. 

The way forward is clear: physicians and nurses taking care of older patients who have a caregiver need to involve that caregiver at every step of the health care journey. Identifying a nurse or social worker to serve as a health care coach for the caregiver would make the system work even better.

Home Not Alone

Last June, Medicare announced preliminary results from its “Independent at Home” demonstration project. They showed the program provided high quality care and at the same time saved money. Not only that, but the population it served was the sickest of the sick and the frailest of the frail—people with multiple chronic conditions who needed help with personal care. But the reports in the news media didn’t explain what exactly the program did. Now, a study in the latest issue of Health Affairs explains how the program works and analyzes its achievements to date. 

The new study confirms the earlier reports: participants in the study had lower rates of acute hospitalization, which saved Medicare money. They also had a lower risk of nursing home admission, which saved Medicaid money. But the results so far—the analysis is based on data from the first year of a three-year pilot project—are modest. In one group of program participants, the hospitalization rate fell 14%; in a second group (the criteria for enrollment were somewhat different), the hospitalization rate fell only 1%. And understanding the analysis is almost impossible for the general reader. Not only were there two different sets of participants, with slightly different characteristics, but there were four different comparison groups. Then the authors invoked something called “entropy balancing.” The most it seems to me reasonable to conclude at this point in time is that the program isn’t hurting and it might be helping both patients and Medicare’s budget woes. But the benefits, if they exist at all, are likely to be small.

But what really struck me about the program is the description of what it actually involves—and what it doesn’t. Independent at Home does not support ongoing, comprehensive primary care provided in the home. It is nothing like a program reported on in the media at the same time that the Health Affairs article came out, a program on Long Island, New York that in fact moves all of health care into the home of its frail enrollees. That House Calls program sends doctors and nurses into the home and offers simple lab tests, basic x-rays and services such as physical therapy in the home. The doctor or nurse who visits the patient goes back again and again, providing continuity. The Independent at Home initiative, by contrast, provides a single home assessment each year that involves a history, physical exam, and lab tests, including a screen for depression, a review of medications, and a needs assessment. The upshot of this home evaluation is the development of a “plan of care” that is transmitted to the primary care physician for implementation. That plan might include referrals to social work or palliative care, but the individuals providing these services are not members of the primary team. When the patient develops an acute medical problem, nobody comes to the home to assess the patient--the primary care doctor is called. No medical personnel return to the home until it’s time for the next annual home assessment.

How can such a limited program possibly work? And if it does, what does that say about our usual way of providing care? It’s worth noting that the design of Independent at Home took into account the utter failure of an earlier demonstration program that tested the effectiveness of  “care coordination” and “disease management.” In this model, which had been instituted by 34 programs and which the Congressional Budget Office pronounced ineffective, patients were encouraged to participate actively in their own care and a case manager helped them negotiate the system and facilitated communication among all those involved. Perhaps not surprisingly, a system that relies on very frail older people, many of whom suffer from cognitive as well as physical impairments, to self-manage their care is fraught with peril, however effective such an approach might be in other patient populations. So the new model, the basis for the Independent at Home project, has as its centerpiece a plan of care and it’s the primary care physician, not the patient, who is supposed to implement the plan. It draws on studies such as the University of Pennsylvania’s transitional care program that found that a single home visit by a nurse  after a hospitalization could markedly decrease the risk of readmission to the hospital the following month.

Conceptually, the new model is an improvement over its care coordination/disease-management predecessor. It makes sense to determine whether anything short of comprehensive home-based primary care can provide high quality, cost-effective care, since the more all-encompassing home care won’t be cheap. But why place the responsibility for implementing the “care plan” squarely on the shoulders of the primary care physician, when we already know that most primary care physicians aren’t equipped to care for frail elders? Why rely on the primary care doctor to follow the plan when we already know from studies of geriatric consultation done years ago that when doctors receive recommendations for how to take care of patients that are based on unsolicited medical consultations, they ignore them? Why not focus on the caregiver as a crucial and untapped resource? 

The older patients who enroll in Independent at Home need help to get by day to day. Almost by definition, they have caregivers. Only when we involve the caregivers in medical care (and not just in providing personal care or crisis decision-making) will we be able to provide the kind of care that patients want and deserve. Yes, we will need a home visit to develop a plan—a plan which must reflect the values, preferences, and resources of the patient and caregiver. And yes, the physician needs to be involved in implementing the plan. But so, too, does the caregiver.

Caveat emptor. What I’m about to say isn’t politically correct, so reader, beware. The underlying assumption in many medical circles these days is that patients know best what they need to know and what they need to do to maintain their health. The Patient Centered Outcomes Research Institute (PCORI) research agenda—and PCORI, established by the Affordable Care Act, is one of the major sources of funding for medical research today—requires that patients participate in the design and implementation of research projects because, well because patients know best. Now I agree that we doctors need to do a better job listening to patients. I fully accept that patients are the only ones who can say what matters most to them, and that what they care about should shape what treatment they get for a medical problem. That’s why I argue repeatedly that it is for patients to figure out whether they are most concerned with life-prolongation, with daily functioning, or with comfort, assuming they have to make a trade-off—though I also claim that it is doctors and not patients who can figure out how to translate those goals into a treatment plan. But sometimes, perhaps fairly often, patients don’t know what they don’t know.

Last week I blogged about the new report, “Caregiving in the US,” which reported some interesting statistics on what kind of information caregivers said they’d like to have. The findings—that almost all of them expressed an interest in more information about something, with keeping their relative safe at home and managing stress at the head of their wish list—provide valuable information. 

But what’s striking to me is what the caregivers didn’t mention at all. They didn’t say anything about needing to know more about the medical diseases (apart from the behavioral manifestations of dementia) that afflict the people for whom they provide care. A new article in The Gerontologist very pointedly states that family caregivers need to know about delirium: what it is, how to prevent it, and what to do when it occurs. 

Developing acute confusion occurs commonly in older individuals, particularly those with underlying dementia. It is a potentially dangerous condition that is often incorrectly diagnosed. Typically triggered by any one of a variety of drugs, infections, or chemical imbalances (for example, sleeping pills, urinary tract infections, or dehydration), it can cause either agitation or excessive sleepiness and it is distressing to both patients and their caregivers. Moreover, delirium has been associated with longer hospital stays, decline in daily functioning, and even death. A systematic review of the literature carried out by the authors of the Gerontologist paper confirms that when caregivers discover that their charges are acutely agitated, they rarely realize what might be precipitating the change and are often slow in responding, sometimes resulting in the need for hospitalization (which itself can cause or exacerbate delirium). Failure to appropriately address delirium also heightens the caregiver’s sense of inadequacy and insecurity.

Despite the ample evidence that delirium has adverse effects on both caregivers and patients, there is a paucity of studies looking at the effect of the few available delirium-related educational tools on outcomes. One promising intervention taught caregivers to use the Family-Confusional Assessment Method (FAM-CAM) to identify delirium and another designed the Family-HELP program, in which hospital nurses trained family caregivers to manage delirium using one of several protocols.

The Gerontologist article reminds us that family caregivers play a critical role in the identification and treatment of medical problems in older individuals, particularly those with dementia. Having dementia does not protect patients against the other diseases of old age such as congestive heart failure and pneumonia. Whether caregivers realize it or not, they play a pivotal role in the medical management of their family members. It’s time to expand “caregiver support” and “caregiver education” to include a more in-depth understanding of the full range of diseases that affect older people.