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.

Us or Them?

Nearly 30 years have passed since Congress passed the Patient Self-Determination Act, enthroning advance care planning as an important part of care in the last phase of life. While the frequency with which patients designate someone to serve as their proxy in the event of incapacity has increased dramatically and the use of various planning instruments such as living wills and instructional directives has also risen, in most settings no more than one-third of patients with serious illness actually have conversations with their physicians about their preferences. 

Assuming that it’s a good idea for patients with serious illnesses to speak with their physicians about their goals of care, whose responsibility is it to raise the question? Does it make more sense to concentrate on educating physicians to communicate well about goals or to focus on empowering patients? 

Over the years, different initiatives have targeted one population or the other. The Robert Wood Johnson’s “Project on Death in America,” a multi-hundred-million-dollar project launched in 1994, focused to a large extent on prospective patients. The AMA’s program, “Education on Palliative and End-of-Life Care” (EPEC), also introduced in the 1990s, is targeted entirely to physicians (in fact, the “P” in the title used to refer to physicians: when first launched, the program was called “Educating Physicians on End-of-Life Care”.) More recently, a series of videos by Angelo Volandes of ACP Decisions aims to show patients and their families what various medical treatments entail, while the “Serious Illness Conversation Guide” from Susan Block, Atul Gawande and others at Ariadne Labs offers a checklist of questions to help physicians structure their discussions.

So, who needs more attention, the doctors or the patients? A new study in Health Affairs may offer some clues. I should point out at the outset that the Health Affairs article does not seek to weigh in on the question of whether to concentrate on physicians or on patients when designing interventions to promote advance care planning. The aim of the study, as indicated by its ponderous title, “Factors Contributing to Geographic Variation in End-of-Life Expenditures for Cancer Patients,” is to understand why some regions of the US spend so much more on care near the end of life than other reasons, with no discernible difference in outcomes. 

There are methodological problems with this study, as with all studies that start with death and work backwards—it is possible that although the people who died had similar outcomes (perhaps not surprising, as they all died), other people who weren’t considered in the study because they didn’t die were more likely to do well if more money was spent on them. Nonetheless, we have two groups of people with advanced lung or colorectal cancer on whom very different amounts of money were spent—in the lowest quintile, the average outlay was $10,131 and in the highest quintile, the average expenditure was $19,318). Was the decision to spend more coming from patient pressure or was it something that physicians were pushing for?

What the authors found was that in the high spending areas, physicians were less knowledgeable about treating dying patients (by their self-report), less comfortable providing care to patients near the end of life, and had less favorable attitudes toward hospice than their counterparts in the low spending areas. The high spending areas also tended to have more specialty physicians but fewer primary care physicians, as well as fewer hospices (per capita) than elsewhere. But—and here’s the key—patients’ beliefs about what they wanted were no different in high and low-spending areas.

All the statistically significant findings were in the domain of physicians, not patients:

Now, this finding does not directly translate into the question of who drives decision-making near the end of life in general and advance care planning discussions in particular. But it strongly suggests that physicians play an outsized role in shaping what happens to patients. Many patients don’t have pre-determined preferences; their values do not unambiguously determine what kind of medical treatment they should get. Or, if they do have some idea of what would be best for them, they are nonetheless strongly influenced by the views of their physicians. If “shared decision-making” is to work, both partners need to be informed and on board—and the physicians are particularly in need of some attention.

Much Ado About CPR

Two short essays in this week’s New England Journal of Medicine present differing perspectives on how to treat a desperately ill woman w in the ICU of an American hospital, a woman who is unable to make her own decisions and has no advance directive. One author responded that the right course of action was to “institute a DNR order” and the other that it was to “continue full resuscitative measures,” setting up a quasi-debate. I say a quasi-debate because the two authors, as per the editor’s instructions, simply laid out their own arguments without responding to the other’s point of view. I know, because I am one of the two.

I asserted that the physician should declare the patient DNR—a woman with no written advance directive and no designated health care surrogate who was dying of multiple organ failure triggered by sepsis and unresponsive to maximal medical therapy. Attempted CPR in this setting, I argued, was as close to futile as medical treatment ever is; moreover, the patient had clearly stated to a friend and neighbor that she would not want aggressive measures when facing overwhelming odds. I stand by my arguments, which I won’t repeat here, but I regret that the discussion focused on the wrong question.

The wrong question is whether the patient should have a DNR status; the right question asks about the general treatment strategy rather than a specific medical intervention and about the process for deciding, not just the outcome of the process. It moves the discussion beyond considerations of futility—a debated that raged in the 1980s and ultimately led to the recognition that futility is meaningless without reference to what treatment is intended to accomplish. Maintaining a patient who is in a persistent vegetative state on artificial nutrition is futile if the goal is to restore her to full functioning as a thinking human being. But it’s entirely appropriate if the goal is to sustain life in the sense of a heart that beats and lungs that respire. Discussing how to make medical decisions for patients who have lost capacity and how to think about treatment for those who are dying allows us to discuss much more important decisions than whether or not to attempt CPR.

Ever since 1984, when a New York hospital was found guilty of putting purple dots on patients’ charts signaling that they were not to be resuscitated—without their knowledge or input or that of their next of kin—we’ve been obsessed with DNR orders. I suspect that more ink has been spilled on whether, when and why to write a DNR order than on any other medical decision. The reason, presumably, is that it seems irreversible: if a patient sustains a cardiac arrest and CPR isn’t performed, the patient will surely die. Other seemingly momentous decisions often prove not quite so momentous—even Karen Ann Quinlan, the first patient to bring the possibility of not intervening medically to public attention, lingered for nine years after her “life-sustaining” ventilator had been disconnected. A choice not to resuscitate is far more unambiguous—although CPR, it should be pointed out, is hardly a guarantee of life.

Cardiac arrest may have special cachet because it seems to divide the living from the dead. But in fact, for older patients who are critically ill, it is often merely the last step in what is often a relentless progression of markers on the way to death. From the perspective of human suffering and of doing good (and avoiding harm), other steps along the way are often far more significant. After all, a person whose heart has stopped and who is not breathing is no longer able to experience anything, neither the existential angst from awareness of imminent death nor the physical discomfort of aggressive treatment. The nurses and doctors who attempt CPR in a dying patient may feel guilty of assault; they often regard intubation, chest compressions, and electrical shocks as an undignified way to end life, but they are the ones experiencing malaise, not the patient.

Subjecting a patient who is in the final phase of life to dialysis for four hours a day, three times a week, or to major surgery to repair a damaged heart valve, or to ventilator care for advanced lung disease, by contrast, may cause pain and suffering to the person receiving treatment. Both the potential benefit of treatment (longer life) and its potential burdens (ranging from delirium and functional decline to a shorter life) are difficult to assess quantitatively. These decisions, which are difficult to make with a competent patient and correspondingly more fraught with an incapacitated patient, are the ones we should be discussing, not CPR.

Ironically, despite the now 42-year history of DNR orders, there is still confusion about whether DNR indicates that CPR will not be performed in the event of a cardiopulmonary arrest (as it is defined by the American College of Cardiology and other authorities) or something more. Indeed, the opposing piece in the New England Journal of Medicine talks about a time-limited trial of “continued resuscitative measures,” which presumably refers to ongoing ventilator treatment for respiratory failure, dialysis for kidney failure, and fluids and antibiotics for sepsis, rather than for a few minutes of attempted CPR. This uncertainty about what DNR means reflects another problem with the obsession with “getting the DNR order,” and that is the widespread belief that treatment decisions must be all-or-nothing: if you don’t want CPR, then surely you don’t want any potentially life-prolonging medical interventions. The reality is that many people don’t want burdensome treatments that are extremely unlikely to be beneficial, but that doesn’t mean they want to focus exclusively on comfort. 

There’s much more to discuss—I haven’t even touched on the process for making medical decisions. That includes not only who the surrogate should be in the event of decisional incapacity and what standard that surrogate should use for making decisions (substituted judgment is the usual standard, with best interests the back-up if no information about the patient’s preferences is available), but also how the discussion should unfold. Typically, physicians are so eager to reach a decision about what to do that they jump to this step in the process without first clarifying the patient’s underlying health state (in the NEJM vignette, the crucial bit of information is that the patient was dying), as though preferences are independent of any broader context. But for now, let me leave you with the thought that both medical decision-making and advance care planning involve much more than checking off items on a menu, and that if we do engage in intervention-specific planning, CPR should be low on the list of what we discuss.

Can We Talk?

This week, the Massachusetts Coalition for Serious Illness Care released the results of a survey of state residents about advance care planning. The coalition wanted to know whether people were talking about their preferences for care near the end of life and if so, with whom—family? Physicians? The concern was also with whether people who had suffered a serious illness over the preceding year were more likely to have had such conversations and whether factors such as age, ethnicity, or gender influenced behavior. And regardless of whether people had discussed their views, had they designated a health care proxy, a substitute decision-maker in the event of incapacity?

On the assumption that more talk is better, it’s difficult to spin the results as encouraging. Massachusetts residents do not talk much to their doctors about such issues, even if they have had a serious illness and even if they are over age 65—although these two groups do have appreciably higher talk rates than their healthier or younger counterparts. On average, they are not very different from people in the rest of the country and the rates of conversation have not appreciably changed since the last such survey was administered in 2016.

In the population as a whole (the survey sampled adults over the age of 18), only 13 percent had had a conversation with a health care provider about their end of life preferences. Among those with a serious illness or over age 65, this rose to 27 percent.

Those surveyed were more likely to have chosen who would make decisions for them than to talk about what their surrogate should decide, with 63 percent of those over 65 having completed a health care proxy form. 

Perhaps what’s most interesting is that among those who reported they had had a discussion of their wishes, 59 percent said they had initiated the conversation, not the physician or other member of the health care team. Moreover, 34 percent of those surveyed said they did not want to have such a discussion with their doctor—they felt confident that their family members understood their wishes.

Before we get too carried away by the numbers, we should note that only about 210 of the participants were over age 65 (according to the 2010 Massachusetts census, 14 percent of the population was over 65; there were 1500 people sampled in the survey). That’s not many people on whom to base sweeping conclusions and this is the group for whom advance care planning is most essential.

Which leads me to my conclusion: advance care planning doesn’t make much sense in young people or healthy people. The likelihood that such a plan will have to be implemented is just too remote (Karen Ann Quinlan, Nancy Beth Cruzan, and Terri Schiavo notwithstanding—they are the exceptions, not the rule) and the chance that their perspective on what they would want if they were in an unimaginable future state reflects what they would actually want if such a situation came to pass seems slim. Efforts to think about future wishes make most sense for people who already have the condition that is apt to kill them in the future. Once they have started on a particular path, they are better positioned to think about the next steps on that journey.

Geriatricians learned a long time ago that “targeting” interventions to the appropriate population is crucial if they are to be beneficial (and cost-effective). Proponents of advance care should likewise concentrate their efforts on the people who stand to gain the most from discussions of the goals of care—and who are in a position to imagine their future. Even in this arena, we have a great deal of work to do. But spreading our efforts too thinly won't help.

Good for Nothing?

               For over thirty years, we’ve been arguing about when medical care is “futile.” The debate began in the 1980s, when the most common question faced by hospital ethics committee stopped being, “do doctors have to do this procedure, even if patients or their families don’t want it?” to “do doctors have to do this procedure if patients or their families demand it, even if the doctors don’t want to?” One case that attracted a great deal of attention was that of Helga Wanglie, a woman in her late eighties who was in a vegetative state after hip surgery and whose physicians wanted a “DNR” order. Helga’s husband, speaking on her behalf, disagreed. Ultimately, the case ended up in the Minnesota courts and was settled based on a technicality—the hospital sued on the grounds that the husband wasn’t an acceptable surrogate, but the court found that he was. The issue of what qualified as “futile” treatment was largely skirted.

         The bioethics community then struggled to define futility, with Schneiderman, Jecker, and Johnson proposing what appeared to be a quantitative definition: if the treatment in question has failed in the last 100 cases, then it’s futile. There were several problems with this approach. First, it sounds nice and scientific, but nobody was collecting data on what worked in whom. Even if we had information about 100 people, they were rarely identical in what might be crucial ways—is an 85-year-old with advanced dementia, diabetes, and heart disease who has a cardiac arrest equivalent to a 75-year-old with cancer? Secondly, what exactly was meant by a treatment “failing?” Helga Wanglie’s doctors said a ventilator was “failed” treatment because it could not restore the patient to her condition before she was hospitalized—it wasn’t going to allow her to walk out of the hospital and go home. Her husband said a ventilator was “successful” treatment because it sustained Helga’s life. The answer to whether a treatment would be futile turned out to be, “it depends.” It depends on what the treatment was supposed to accomplish. The net effect was that in most of the country, the word “futility” was abandoned in discussing treatment options.

         The exception was Texas, which passed an “Advance Directives Act” in 1999, widely known as the Texas “Futile Care Law.” It spells out a process by which physicians can assert that a treatment is futile and need not be given, as well as a process for adjudicating any disputes between physicians, patients, and families. Ultimately, the physicians have the final say.

         Despite the consensus in the bioethics community and the near consensus among state legislatures that discussing futility was unhelpful, physicians have continued to believe that various treatments should not be provided in certain circumstances because it is morally wrong. To address the persistent discomfort physicians and nurses have felt administering what they regard as “futile” care, the American Thoracic Society recently came out with a position paper called “Responding to Requests for Potentially Inappropriate Treatment inIntensive Care Units.” This policy statement was endorsed by four other professional organizations. Another guideline, this one published by the Society for Critical Care Medicine, addressed what it called “non-beneficial” treatment. The originators of the quantitative futility concept, Schneiderman, Jecker, and Jonsen, continue to believe that “futility” is the best way to describe the class of treatments under consideration.

         So, which is it: Futile treatment? Potentially inappropriate treatment? Non-beneficial treatment? None of the above?

         The issue, it seems to me, is whether the problem is fundamentally a technical one or an ethical one. “Futility” advocates want to define the problem (perhaps surprisingly, since its principal supporters are ethicists) as a technical one. The proponents of “potentially inappropriate care” seem to acknowledge that the issue is ethical (again surprisingly, since its main advocates are physicians). It would be lovely to make the dilemma vanish with a technical solution! If only we could state precisely when CPR or a ventilator or dialysis or chemotherapy cannot work to achieve whatever specific goal it is supposed to accomplish. Then we wouldn’t have to ask whether it’s the right approach. Surely, we can all agree that if something cannot work, like antibiotics for a viral infection or apricot pits for cancer, providing such a “remedy” is inconsistent with professional standards. 

           Unfortunately, such cases of what has been called “physiologic futility” are relatively rare. More common is the situation where an intervention is deemed by medical professionals to be inappropriate because, in their estimation, the burdens outweigh the benefits. This conclusion rests on an understanding of the clinical situation, but also on a moral judgment.

         The desire to convert what is quintessentially an ethical dilemma to a technical one is understandable. It relies in large measure on the recognition that many medical decisions do have a technical and an ethical component, and that often, it is up to the patient (or the patient’s surrogate) to address the ethical piece. But that awareness does not preclude professional ethical standards playing a role as well. The debate about physician assisted suicide, while complicated because of varying legal standards, is to a large extent about whether physicians regard ending the life of a suffering, terminally ill patient as consistent with their ethical norms. The widespread recognition of the responsibility of physicians to care for patients who are criminals or other individuals they may find personally objectionable is based on the ethical code of conduct of the medical profession.

         Recognizing the patient’s values and shaping medical care to be consistent with those values is desirable—when the patient’s ethics and those of the medical profession do not irreconcilably conflict. It’s important to point out that I’m not just talking about the idiosyncratic views of a given physician—the personal ethical values that have been put forward as a justification for failing to provide contraception. I’m talking about an ethical standard of care set by the profession as a whole. The American Thoracic Society statement on “potentially inappropriate care,” while not perfect, is an effort to define what the profession regards as appropriate—acknowledging, through its caveat about “potentially inappropriate” care, that there could occasionally be circumstances where the profession’s norm is not applicable.

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.

Take Your Pick

The "End of Life in Very Old Age” study presents a fascinating glimpse into the lives and views of America’s oldest old. An ancillary investigation to a much larger study, the Health, Aging and Body Composition Study (Health ABC), which looks at the association between body composition and mobility decline, this particular investigation involved conducting quarterly interviews with Health ABC enrollees beginning in year 15 of the longitudinal study—that is, when they were between 85 and 89 years of age. These interviews included questions about preferences for aggressive care, daily symptom burden, health decision making, and concerns about health and health care. A total of 1227 patients (or proxies speaking on their behalf) completed the interviews. The results appear to show a marked penchant for aggressive care, moderated only by mobility difficulties. This may be accurate, at least for the population studied, which includes a random sample of white Medicare beneficiaries and all black community residents in 2 cities, Pittsburgh and Memphis. Or it may reflect widespread misunderstanding about what they various proposed interventions—attempted CPR, ventilator treatment, feeding tubes, dialysis, open heart surgery, an implanted defibrillator, or diagnostic tests including MRI, ultrasound, and angiogram.

The study authors stress two findings which they seem to find surprising. First, there was no association between reported “daily symptom distress” such as pain, nausea, constipation, or trouble sleeping, and EOL preferences. Second, there was an association between mobility, the ability to walk a quarter of a mile, and EOL preferences. From these observations they conclude that we should pay much more attention than we typically do on functional status, the ability to do the most basic tasks necessary to have some semblance of an independent existence. That’s been a geriatric mantra for decades. The authors also acknowledge in passing, that the preference for aggressive EOL care was associated with race and to some extent gender, with black men most likely to want “everything done.”

What the authors do not discuss, and what was not part of the survey, is the extent to which participants understood what any of the ingredients of aggressive care would be like for them. Fully 59 percent of the participants who were interviewed directly said they would want CPR attempted if their heart stopped. But did they have any idea that among patients over age 85 who undergo CPR in the hospital, only 4.5 percent are discharged both alive and with minimal neurological deficits?  A total of 49 percent said they would want to be put on a ventilator if they had trouble breathing. Did they know that you cannot speak or eat while on a ventilator? Did they distinguish between time-limited treatment and chronic, maintenance treatment? The idea of a defibrillator was also in general well-received (58 percent favoring it), though not as enthusiastically as diagnostic tests such as angiograms and MRIs (88 percent). Interestingly, dialysis, which many people realize is a 3-times a week, multi-hour procedure, was endorsed by a smaller percentage, 34 percent, and feeding tubes maintained in place longer than a week were acceptable to only 13 percent. I can only speculate that prospective patients intuitively understand that having dialysis or a feeding tube would be burdensome but have little awareness of the discomforts—and in many cases of the limited efficacy—of CPR, ventilators, defibrillators, or open heart surgery.

Just as we need to move away from intervention-specific advance care planning, so too we need to stop trying to measure preferences for care near the end of life by focusing on the means rather than the ends of treatment. It’s possible that the people interviewed who said they would favor what the study authors refer to as “aggressive” treatment knew perfectly well what was entailed and were interested in life-prolongation, no matter what that entailed. But I rather doubt it, particularly in light of their being skeptical of chronic dialysis or feeding tube use. 

We need to educate people about what works and what doesn’t work and what hurts and what doesn’t hurt in the last phase of life. Even more important, we need to talk to them about what matters most to them and then rely on physicians to help them understand what tests and treatments are most conducive to achieving their objectives.