American medicine is best at taking care of people who have a single, very serious disease. We’re even better at taking care of them when they are in the throes of an exacerbation of that disease, when we can control everything that goes into their bodies and monitor whatever comes out, usually in the acute care hospital, often in the ICU. That means, for example, patients with severe heart failure who develop acute pulmonary edema, or people with leukemia who are in “blast crisis.” People who have multiple interacting conditions or one disease that isn’t necessarily fulminant but affects many aspects of their daily lives—those are the people we’re not so good at taking care of. And it turns out that these ill-defined groups of people not only get mediocre medical care, but they also cost the health care system a great deal of money.

It’s finally become clear to a number of influential health policy types that this group deserves attention—doing a better job caring for them could potentially improve health and save money. David Blumenthal, president of the Commonwealth Fund, recently published an article in the New England Journal of Medicine saying it was time we paid attention to “high need, high cost” patients. CTAC, the Coalition to Transform Advanced Care, just held a national forum on “advanced illness care,” advocating payment and delivery reform of the most vulnerable patients. CAPC, the Center for Advancing Palliative Care, has for a number of years promoted the use of “an added layer of support” for patients with “serious illness” throughout the course of their disease. But how can we identify just who it is who stands to benefit from the kind of care that all these groups recognize as crucial: integrated, coordinated, team-based, and patient-centered care?

Our neighbors to the north have long recognized the importance of frailty as a concept that gets at what’s common to people with multiple co-morbidities, patients with one advanced illness, and some patients who have dementia or mental illness. What’s unique about frailty is that it identifies patients who are vulnerable to external stresses. It doesn’t matter whether the vulnerability arises from the interaction between several different medical conditions or the effects of a single disease on many bodily functions; it’s the precariousness of their condition that makes frail people both difficult and costly to care for. 

Dr. Kenneth Rockwood, together with colleagues at Dalhousie University in Canada, has developed a powerful Clinical Frailty Scale that categorizes patients based on a mixture of disease burden and function. Studies show the Clinical Frailty Scale can predict decline and mortality among community dwelling older individuals; it can predict unplanned hospitalization and death in outpatients with cirrhosis; and it can predict length of stay in older patients admitted to the acute medical service of a general hospital. But a Google search fails to turn up a single article in which the CFS is used in a US hospital. It’s been tried in Australia. It’s used in Canada. But not the US. Why not?

Let’s have a look at the CFS. I think it offers some clues:

Two observations about the scale. First, although the outcome is quantitative (every patient gets a score between 1 and 9), the assessment that goes into determining the outcome is fundamentally qualitative. Second, and not unrelated, there’s no way the score can be computed from information already entered into an electronic medical record. That’s because the rating is not based on things like the serum albumin or the mini-mental score. It’s based on one person, a clinician, deciding which of 9 very short, illustrated descriptions best fits another person. There’s nothing complicated about the process—a good primary care physician be sufficiently knowledgeable about his patient to determine the answer without asking doing any kind of special evaluation, and even a not-so-good primary care physician should be able to find out enough to choose the best description after 1 or 2 minutes of questioning. But introducing the CFS into the practice of medicine in the US would require physicians to be aware of their patients’ level of functioning in everyday life, not just the functioning of their individual organs. And it would require accepting the notion that sometimes qualitative reasoning trumps the quantitative. Both concepts are alien to standard American medicine.

CTAC and CAPC and all those others who argue that we need to do a better job caring for our most medically vulnerable patients—for the sake of their well-being and for the sake of our pocketbook—argue about what exactly is wrong with the patients they want to serve. Are they dying? Do they have lots of problems? Are they suffering from advanced illness? I would argue it's not just people who are dying, though many of the most vulnerable are dying. It’s not just people with multi-morbidity, though many of the vulnerable do in fact have multiple conditions. And it’s not just those with advanced illness, though many of the most vulnerable have an advanced illness. It’s people whose illness(es) affect sufficiently many aspects of their daily functioning that they have become frail. 

Frailty is the final common pathway, whether you're frail because of dementia or metastatic cancer or Parkinson's disease or some combination of arthritis, diabetes, and COPD. So let’s borrow from our northern neighborhood and begin using the Clinical Frailty Scale. It’s really very simple.

A Cautionary Tale

Social Security and Medicare, along with other government agencies, understandably worry about fraud. But sometimes this worry gets out of hand. I report here on what my 90-year-old mother has had to go through to get her social security benefits. It’s a cautionary tale for all of us.

Last May, my father died. My parents had been married for 67 years. Losing her spouse was traumatic for my mother even though she was as prepared as anyone can be for his death. But my mother pulled herself together and almost immediately began notifying all the relevant authorities of her husband’s death. The funeral home notified the Social Security administration. My mother was informed that she would get a phone call from Social Security on July 13, notifying her of the next steps she would need to take. In particular, she would learn how to get my father’s social security benefits in place of her own in accordance with the law.

A representative from Social Security did indeed telephone on July 13 and my mother was indeed expecting her call. The rep explained that to receive survivor’s benefits, Social Security needed to see original documents (or copies certified by the relevant authority) to prove her citizenship and her marriage.

My mother was told that her expired passport would not qualify to prove her citizenship as it was issued before September 11, 2001. She would have to obtain a new passport (though presumably the expired passport would qualify her to obtain a new passport) to demonstrate she is an American citizen.

My mother has been an American citizen since she was naturalized in 1953. She has no intention of traveling outside the country in the foreseeable future and therefore has no other need for a valid passport.

My mother was also told that she needed to obtain an “official” copy of her marriage license from the City Clerk’s Office of New York. The only document she had, a photocopy of a certificate given to the young couple by the officiant at the wedding, was worthless. I immediately went on line and discovered that marriage records that are over 50 years old, as my parents’ is, are considered a “historic record” and are available to anyone. We paid the requisite $15 fee and submitted a request for an official copy.

We waited. And waited. My mother contacted the City Clerk’s Office and was able to verify they had received the request and the postal money order for $15. The office explained that it would be 8-10 weeks before the request would be processed.

Meanwhile, the Social Security office explained that my mother’s application to receive her husband’s social security benefits would be “terminated” because she had not supplied the necessary documentation. This despite the fact that she only learned she needed an “original” marriage certificate on July 13, that she had submitted a request for that certificate the very same day, and that the City Clerk of NY said it took up to 10 weeks to provide the requisite piece of paper. Fortunately, the application could be re-opened, provided she supplied the materials required within 6 months of my father’s death.

Ten weeks passed. No certificate. My mother again contacted the City Clerk of NY and learned the certificate would be mailed in a week. A week passed. Then two. No certificate. The clock was ticking. It was now 4 months since my father’s death. My mother attempted to telephone the City Clerk of NY and was put on indefinite hold. She sent the Clerk a letter pleading her case.

Remarkably, someone from the City Clerk’s office telephoned. He indicated the certificate had been sent. It was never received. He then said she would have to request another one. But if my mother had to wait another 10 weeks (or longer), the deadline would have passed. He told her that if she mailed a second money order to his attention, he would personally arrange to send the certificate.

Today, the much anticipated certificate arrived, confirming that my parents were indeed married on September 18, 1948.

The social security office has since informed my mother that her expired passport is adequate proof of citizenship and that when we present the official copy of her marriage certificate later this week, she will receive her husband’s social security benefits—retroactive to the date of his death.

Wish us luck. And to all of you out there who do not have original birth certificates or valid US passports or certified marriage certificates—get your documents in order now, just in case.

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.