Looking Forward

            Once the 1918-1919 influenza pandemic finally came to an end—after killing somewhere between 50 and 100 million people worldwide—Americans did their best to forget about it. Later tragedies such as AIDS and 9/11 figured prominently in much American fiction, but influenza was seemingly forgotten by American writers: Katherine Anne Porter’s short story, “Pale Horse, Pale Rider” and William Maxwell’s novella, “They Came Like Swallows,” are rare exceptions. Historians and journalists writing about the 1918 flu have hypothesized that the pain and suffering inflicted by the flu paled by comparison with that attributable to World War I, which came to an end at the same time, even though ten times more Americans died of the flu than died in combat. Or perhaps Americans were so optimistic about scientific medicine, which was just coming into its own in the twentieth century, that they chose to ignore medicine’s great failure, its inability to diagnose, treat, prevent, or cure influenza. Maybe Americans simply repressed this traumatic episode that killed people in the prime of life, leaving families without a means of support and children without a mother or father. Will the Covid-19 pandemic similarly be forgotten, or will it have a profound and enduring effect on us as individuals and on us as a society?

            The pundits are already speculating about the long-lasting effects of the pandemic on the real estate market and on the work place, on professional conferences and the movie industry. But what I would like to address is the life lessons we should take away from this devastating and unexpected year. The first is that our lives are tenuous. We in the developed world have come to expect a long healthy life, especially if we are white and middle class. Life expectancy at birth in the US is just under 79 years; if you make it to age 65, you can expect to live another 20 years. Covid-19 showed us that we should not take those years for granted: while 80 percent of the Covid deaths have been in people aged 65 or older, that means that 20 percent have been in people under 65. As of the end of December, 2020, 346,000 Americans had died from the disease, which translates to 69,000 younger people. There’s nothing like awareness of our own mortality to concentrate the mind and encourage us to live life well and to the fullest. This is the first lesson and the one we are perhaps most likely to forget.

            The second lesson is that what matters most to us as human beings is our relationships with other people. That’s what made “social distancing” so painful; it’s why eliminating family visits to nursing homes was so devastating; it’s why Zoom, FaceTime, and other video chat programs have been such a lifesaver. We need to cultivate our friendships, to nourish them, to work to improve them. The pandemic made us believe that other people are the enemy, which runs counter to our essence as social creatures.

            The third lesson that I want to emphasize is of a different sort: it is that to make decisions about most anything important and certainly to make medical decisions, we need to understand something about risk. How to behave during the epidemic was all about how to evaluate risk, how to think about risk. Just because most people who don’t wear masks and who go to group gatherings won’t get sick doesn’t mean that these are safe activities. It means that you markedly increase the chance that you will contract the virus if you go around without a mask or attend a group meeting. And understanding risk is more complicated still: how much you increase your risk depends on how widespread the virus is in the surrounding community. If very few people in the vicinity of where you live are sick, then your likelihood of getting the disease is low, even if you fail to take precautions. But as the virus begins to circulate more widely, then precisely the same behavior pattern that was only slightly unsafe before will become far more dangerous. 

            Understanding risk is tricky because the epidemiological measures designed to protect individuals, whether wearing a mask, practicing social distancing, or getting vaccinated, are not perfectly effective. Some people who wear a mask will nonetheless contract the virus; ditto for people who stay six feet away from others. Individuals who received either the Pfizer or Moderna vaccination in the clinical trials were one-twentieth as likely to get sick as those who received a placebo. But that means that just how safe you can feel if you are vaccinated  (even if the effectiveness holds up in a much larger population than was tested in the trials) also depends on how widespread the virus is: while vaccination lowers your relative risk of getting sick, if the number of infectious people in the community suddenly increases, say by a factor of ten, your chance of getting the disease also goes up by a factor of ten, even if you've been vaccinated. Grasping the concept of risk is essential—not just to dealing with an infectious disease, but also to deciding whether to undergo screening for prostate cancer, whether to take medication for borderline high blood pressure, and whether to invest in the stock market. 

           Americans, along with people across most of the globe, have lost much from our encounter with the corona virus. We have also gained something: an appreciation for life’s fragility, a recognition of the importance of relationships, and a deeper understanding of risk. It is up to us to remember, both those we have lost and what we have learned. 

What's the Risk?

Nearly six months into the pandemic, we ought to know the important risk factors for serious illness or death from Covid-19. Whether because of poor record-keeping, lack of international cooperation, or sloppy statistical analysis, the information until now has been limited. 

Not just limited; the claims about risk factors to date have been quite misleading. I complained in my blog post in early May that the rates of certain conditions in patients dying of Covid-19 were actually no different from the rates of those same conditions in older people in general. For example, I noted that one study reported that the rate of high blood pressure in patients with severe cases of Covid-19 was 56.6 percent—but failed to comment that the rate of high blood pressure in the elderly population is 60 percent. Far from indicating that high blood pressure increases the likelihood of severe Covid-19 in older adults, this finding suggests that high blood pressure confers no extra risk or maybe is even protective. 

The only consistently observed risk factor for both severe illness and death has been older age, with age greater than 80 representing very high risk. Now, thanks to the existence of widespread, compatible electronic medical records in the British National Health Service (NHS), we have some useful data.

The study, published early on line in Nature Reviews, compares British patients who died of Covid-19 with all other British patients who are cared for in a group practice that used the necessary software (approximately one-third of the population). By using “a secure analytics platform inside the data centre of major electronic health records vendors, running across the full live linked pseudonymised electronic health records,” and after excluding people under age 18 and those with less than a year's worth of data, the investigators were able to collect health information on over 17 million individuals, including just under 11,000 with Covid-19 related deaths. The results confirm age as the single most potent risk factor, with a small number of other major risks.

To capture the most striking findings, I extracted data from the chart listing the hazard ratios (HRs) and 95% confidence intervals (CI) for Covid-19 death (Table 2) and present 3 separate tables: one highlighting very high-risk characteristics, one highlighting high-risk characteristics, and one showing characteristics associated with no or minimally increased risk. For added emphasis, I highlighted hazard ratios of greater than 3 in red and hazard ratios between 2 and 3 in blue.

Characteristics Associated with Covid-19 Deaths

The important difference between these charts and previous attempts at quantifying risk is that the hazard ratios reported have been age and sex-adjusted and have been further adjusted for other potential confounders along with age and sex.  

The conclusion from this analysis is that when we consider the age- and sex-adjusted hazard ratios, there are only four very high-risk conditions: old age, a hematologic malignancy diagnosed within the previous year, severe kidney impairment, and organ transplantation. Within the old age categorization, the hazard ratio goes from 8.62 to 38.29 as the age increases from 70-79 to 80 and older (the reference group is people aged 50-60). The only medical condition that comes close to this magnitude is organ transplantation, with a hazard ratio of 6. 

Another handful of conditions are in what I have classified as high-risk: obesity with a BMI of 40 or greater, poorly controlled diabetes, stroke or dementia, a hematologic malignancy diagnosed between 1 and 5 years earlier, liver disease, and other forms of immunosuppression. Incidentally, four out of six of these conditions drop out if we look at the “fully adjusted” column.

It’s worth noting some of the chronic conditions that were not associated with increased risk. High blood pressure, as I had previously suggested by comparing the rate in the very ill Covid-19 patients with the rate in the general older population, does not appear to be a risk factor. Mild to moderate asthma, defined in this study as someone with asthma who did not use oral steroids within the previous year, is also not a risk factor.

It’s also worth noting that the CDC has issued its own guidance about risk factors for Covid-19. Their conclusions, while overlapping with the NHS data, differ in important ways. Most important, their methodology differs. The CDC, lacking a domestic large, comprehensive data base, is forced to draw on evidence from small case series, cohort studies, and some meta-analyses, as well as a much earlier preliminary report from the NHS. The new NHS data, rigorously obtained and meticulously analyzed, should be seen as the gold standard.

When Will We Ever Learn?

Residents of long-term care facilities in the US have been hit harder by the COVID-19 pandemic than have any other group. They have almost all the known risk factors for becoming seriously ill with the disease: they are unambiguously old, with fully 41 percent over age 85, and almost all have one or more chronic diseases, generally multiple conditions that result in their needing personal care. To top it all off, they live in close proximity to one another, typically eating together in a common dining room and often sharing a room with another resident. As a result, nursing home residents account for at least one-third of U.S. COVID-19 deaths. In some states, such as Massachusetts, estimates by early May were that nursing home residents accounted for 60 percent of COVID-19 deaths. 

We learned from the devastating early experience with COVID-19 how to keep the corona virus from causing havoc in nursing homes. In particular, we came to understand the importance of protecting nursing home residents from staff members who might bring it into the facility. By testing staff regularly and mandating head to toe personal protective equipment, together with other draconian measures such as banning family visitors and restricting resident-to-resident interaction, the rate of illness, hospitalization and death among nursing homes residents plummeted. Now that the virus is again surging in the Sunbelt, with Florida, Arizona, and Texas reporting skyrocketing infection rates, how are nursing home residents faring in those areas?

The answer, in a word, is not well. The Florida Department of Health reported 3072 active cases in nursing homes and assisted living facilities as of July 13, up from 1408 on June 23. The rate had nearly doubled in two weeks.  Houston saw an 800 percent increase in cumulative new cases among nursing home residents between the end of May and the end of June—and Texas has more nursing homes than any other American state. 

Why is this happening? Only in mid-July did Florida announce it would test nursing home staff regularly. The government defined regularly as every other week—not likely to be often enough—but many facilities report no testing has taken place as yet. Phoenix nursing homes report a shortage of personal protective equipment, with 25 percent of facilities acknowledging they have only one week’s worth of masks, gowns, and gloves on hand for nursing assistants and other direct care personnel. 

So far, death rates have not soared the way they did in New York during the height of its outbreak, but they are beginning to rise. As epidemiologists point out, death is a “lagging indicator:” people first get sick, then some of them become sick enough to require hospitalization; next, some are admitted to the ICU, and then, over a period of weeks, the deaths start coming. The outbreaks began with younger people who ignored public health recommendations to wear masks, limit group gatherings (especially indoors), and maintain physical distance from others. Florida, Texas, Arizona, and other hot spots did not engage in a vigorous campaign to test people with symptoms, to isolate anyone with an infection, and to quarantine exposed individuals. The result was community spread. At that point, the outcome for nursing home residents is entirely predictable. Once COVID-19 is widespread in the community, it is going to make its way into nursing homes, carried by asymptomatic or minimally symptomatic staff members who do not wear adequate protective gear. And vulnerable older people who are dependent on staff members to go to the bathroom, to eat, to dress, and to bathe will themselves become ill. More and more of them will become very sick and many will die. 

States that experienced a major outbreak early in the course of the pandemic—in late March and much of April—learned through experience that in the absence of a vaccine or effective treatment, old-fashioned public health methods are the only scientifically sound and morally defensible way to act. The invasion of nursing homes has no doubt already begun in the states with soaring case rates; every hour of delay in instituting the only measures that we have just demonstrated can succeed will result in more viral transmission, more suffering, and more death.

The Nurse Will See You Now

           

          Articles in medical journals tend to pay scant attention to the role of nurses in treating illness—or for that matter, to the role of social workers, physical therapists, and many other clinicians. Hence, when JAMA, one of the major American general medical journals, published an article in 2002 entitled, “Hospital Nurse Staffing and Patient Mortality, Nurse Burnout, and Job Dissatisfaction,” it was a bombshell. The lead author, Linda Aiken, is a nurse researcher at the University of Pennsylvania where she is a Professor of Sociology and the founding director of the Center for Health Outcomes and Policy Research. Looking at survey data from 10,000 nurses and administrative data on nearly 250,000 medical and surgical patients hospitalized in Pennsylvania in 1998-1999, she drew some dramatic conclusions: each additional patient per nurse was associated with a 7 percent increase in the likelihood of dying within 30 days of hospitalization, and each additional patient per nurse was associated with a 23 percent increase in the odds of “burnout” and a 15 percent increase in nursing job dissatisfaction. 

          Aiken's analysis, along with other smaller studies, have led to calls for an increase in the nurse to patient staffing ratios in hospitals. In light of general hospital administrative reluctance to make such increases, many nurses have demanded and some state legislatures have proposed mandatory increases in nurse to patient ratios. Massachusetts voters are being asked to vote this November on a referendum that would establish mandatory staffing ratios. To date, the only state to have instituted such a requirement is California—which passed legislation in 1999, before Aiken’s landmark study. California’s experience offers an unparalleled opportunity to ask whether mandatory ratios result in the desired improvements in quality of care and whether they produce a variety of unintended consequences. In principle, it could also shed light on whether nurse to patient ratios are particularly important for older people.

            California’s law specifies different nurse to patient ratios for intensive care units, surgical units, and medical units. Compliance was at first uneven, but gradually hospitals conformed to the requirements. Several studies have attempted to assess the outcomes. They are limited because California did not conduct a randomized, controlled experiment before passing its legislation—it did not impose mandatory minimum ratios on some hospitals and not on others. Moreover, nursing staff ratios are hardly the only factor affecting outcomes that changed in the early years of the mandate: many other federal quality improvement initiatives were undertaken to encourage hospitals to prevent pressure ulcers, falls, catheter-related infections and other major hazards of hospitalization. Hospitals have also experienced major financial pressures: the cost of hiring nurses was only one of many economic challenges. Determining cause and effect is not easy. Nearly twenty years later, what do we know?

            First and foremost, did the mandatory ratios result in improved quality of care? One of the most carefully performed studies was undertaken by the California Health Care Foundation, part of UCSF, in 2009. This report looked at pressure ulcers, pneumonia deaths, and deaths from sepsis (blood-borne infection) and were unable to find any statistically significant change after the law was implemented in 2004 (following a multi-year study period to design the regulations). Another study that focused exclusively on pressure ulcers and falls used data from CalNOC, a large nursing database for the entire state, to conclude there was no change in fall rates. They did note a paradoxical increase in pressure ulcers in patients admitted to “step-down” units, units between an ICU and a general medical or surgical floor in the acuity of their patients, after the requirement of more nurses per patient was introduced (presumably a reflection of sicker patients). A systematic review of the literature, published in the Annals of Internal Medicine in 2013, failed to find any statistically significant effect on a variety of safety measures. Of note, none of the studies I identified looked at either patient or nursing satisfaction.

            If mandatory nurse to patient ratios did result in more face-time with patients but no demonstrable improvement in overall quality of care, might older patients nonetheless be one subgroup that did benefit?  All we can say is that many of the quality measures that were examined—pressure ulcers and falls, for example—are particularly relevant to older people. 

            What about the feared adverse consequences of imposing rigid nursing staff ratios? An analysis in Health Affairs in 2011 found no evidence that hospitals were substituting less well-qualified staff (who still meet the legal requirements) such as LPNs for registered nurses. The California Health Care Foundation did conclude that hospitals were increasingly relying on “travel nurses,” (nurses from out of state or from other countries, hired for short periods of time) and on “float nurses” to move from floor to floor to compensate for lunch breaks by the regular staff. Such changes may result in less continuity of nursing care for patients. They also showed that hospitals across the state experienced shrinking operating margins beginning in 2002, especially in the hospitals that were initially fiscally strongest. However, they emphasize that many other factors could account for this phenomenon. Hospitals of all types did comply with the law, resulting in more hours of nursing care for each patient every day:

          On balance, regulating nurse to patient staff ratios in isolation is not likely to make much of a difference in patient outcomes, nor is it likely to devastate hospitals' finances. Hospitals are complex institutions with many interrelated parts. Just because hospitals with low nurse to patient staffing ratios tend to have poorer outcomes than other hospitals does not mean that if we "fix" the ratio, care will necessarily improve. Assuring that there are enough nurses to provide good care is essential, but that step alone is unlikely to dramatically improve the hospital experience.

             

            

  

An Aspirin a Day...

The headlines this week—aside from the hurricane, the typhoon, and the charge of sexual misconduct in the Supreme Court nominee—are all about aspirin. For older people, unless you live in the Carolinas or Hong Kong, this is definitely the story. A new study (reported as 3 separate studies but really just one study with three different endpoints) threatens to unseat aspirin from its coveted spot as the little-pill-that-could.

A single aspirin a day, many people believed, could stave off heart disease, stroke, cancer, and perhaps dementia. If taken as a “baby aspirin,” a dose of 81 mg a day instead of the 325 mg in a regular aspirin tablet, and with a special “enteric” coating to protect the lining of the stomach, it was touted as effective with virtually no side effects. The truth, unfortunately, seems to be that it is neither effective nor devoid of side effects when taken by healthy older people.

The study, published online in the New England Journal of Medicine, examines three plausible possible benefits of low dose, enteric-coated aspirin. First, they ask whether aspirin has a desirable effect on cardiovascular events such as heart failure requiring hospitalization, stroke, or heart attack. They found no difference in benefit between healthy older people in the US or Australia (where older was defined as over 70 except in blacks and Hispanics, where it was defined as over 65) who took 100 mg of aspirin and those who did not.

Next, they looked at whether aspirin has an effect on how long healthy older people live without developing a disability. Again, they found no statistically significant difference between those who took aspirin and those who didn’t.

Finally, they examined overall mortality in the aspirin-takers and the non-aspirin takers. Once again, the two groups were indistinguishable.

There was, however, one striking difference in outcomes between the 9525 people who were randomized to take aspirin and the 9589 people who were randomized to placebo: the risk of bleeding was significantly higher. And by bleeding, the investigators meant major bleeding such as a gastrointestinal bleed or an intracranial hemorrhage. 

Not only did this randomized controlled study fail to show any benefit from taking aspirin, and not only did it show an increased risk of harm, but even when the results were subjected to subgroup analysis, no group emerged as potential beneficiaries. The authors looked at the composite endpoint (dementia, death, or persistent disability) in several pre-specified subgroups. One was gender: in the past, aspirin has been touted as preventive for healthy men but not women; in this study, neither men nor women benefited. Another was frailty (though I’m not quite sure how 421 of the “healthy” elderly subjects could have met the definition of frailty): in this study, neither the frail nor the non-frail benefited. If anything, there was a trend towards worse outcomes in the frail group, though the numbers were so small that the difference was not statistically significant and might well be due to chance.

No study is perfect and this one is no exception. The median period of observation was 4.7 years, a relatively short period with respect to the time needed to develop dementia or heart disease. The analysis was done on an “intention to treat” basis, which is the way such studies are supposed to be analyzed, but in fact only 2/3 of the people assigned to take aspirin were actually taking it by the end of the study period. The benefit of aspirin might therefore have been under-estimated. The risk of bleeding, however, which was already substantial in the aspirin users, may have also been under-estimated. For some reason, the study used a 100 mg dose even though a standard baby aspirin contains only 81 mg: maybe the results would have been different with an even smaller dose. But the strengths of the study are impressive. It was randomized; follow up was almost complete; data collection seems to have been thorough and careful.

I have a confession to make: for several years, I took a baby aspirin every day. I’m under 70 and I’m female, so my physician did not recommend that I take aspirin. I took it nonetheless because I really don’t want to have a stroke and thought that just maybe taking aspirin was something I could do to help. I took it because years ago, before I went to medical school, I worked in a hematology research lab and spent my days studying platelet aggregation. It turned out that people who had taken a single aspirin tablet within two weeks of my testing their blood showed markedly decreased clumping of platelets, blood cells that are critically involved in the clotting process. About a year ago, I had several episodes of subconjunctival hemorrhage, a benign form of bleeding involving the blood vessels of the eye. I worried the bleeding might be related to aspirin, so I stopped taking it. 

Today, the evidence is compelling that for people without heart disease or dementia or stroke, an aspirin is more likely to cause harm than good. As of now, aspirin has joined the ranks of other failed panaceas such as estrogen and calcium supplements. 

All that Glitters...

          Admissions to American Intensive Care Units (ICUs) from hospital emergency departments are on the rise—they doubled from 2003 to 2009—and admissions among patients aged 85 and older growing the most rapidly of all: they increased 25 percent every two years. What we still don’t know is whether or when the ICU helps them. This past week, French researchers published a study in which they shed some light on the question. What they found is that ICU admission in basically high functioning people over age 75 did not improve their chance of survival—and may have made it worse. The ICU probably didn’t make any difference in their level of function or health-related quality of life six months after discharge (if they were still alive)—but there is some suggestion it caused a deterioration.

         In a nutshell, what the researchers did was to come up with a standardized protocol for determining who should be admitted to the ICU, based on the particular conditions they had and how severe the conditions were. They then randomized hospitals to either use this special protocol or to rely on whatever they normally did to make decisions about ICU admission. To be eligible for the study, you had to be at least 75 years of age and at baseline, ie before you got acutely ill, you had to be independent in almost all your daily activities. When physicians used the special triage system, older patients were far more likely to be admitted to the ICU (61 percent) than when they did not (34 percent). But the death rate in the ICU, and the length of stay in the hospital were the same in the two populations. Overall hospital mortality was higher in the intervention group (30 percent) than in the controls (21 percent). Moreover, decline in independent functioning was greater at six months in the intervention group than in the controls.

         What should we make of all this? I think it’s reasonable to conclude something about what we're not doing. We’re not currently depriving many older patients of care that would be beneficial for them. Maybe all those physicians who don’t admit certain elderly individuals to the ICU aren’t discriminating against them; maybe they’re on to something. What we don’t know is whether the doctors who provide “routine care,” those who use criteria other than the officially sanctioned ones for determining who gets in to the ICU, are still over-utilizing the ICU. What we don’t know, although it’s a bit implausible, is whether there are older patients who are excluded both by the seat-of-the-pants criteria and the rigorously-determined criteria, who would nonetheless benefit from a trip to the ICU.

         Behind all the methodological considerations and the statistical conclusions, we have two inescapable realities: first, there are many older people who are so sick and so close to the end of life that no technology, no medication, no amount of monitoring or nursing care will keep them alive—and that’s true even for the population addressed in this study, which excluded anyone who was frail. Second, the ICU is a medical intervention, much like a drug or a procedure, and it comes with side effects. For older individuals, those side effects may outweigh any potential benefits of the intervention. So when the physician recommends the ICU for you or your older relative, think twice before agreeing.

The Real Advance Planning

Michael Kinsley’s Old Age: A Beginner’s Guide isn’t exactly a guidebook to “life’s last chapter,” as the author promises. The book does talk quite a bit about Parkinson’s disease, even though Kinsley assures us that it isn’t really about Parkinson’s disease, because that’s been Kinsley’s diagnosis for the last 23 years. And his comments about going through “deep brain stimulation,” a surgical technique that can be very helpful to people with Parkinson’s, as well as his discussion of accepting limitations—giving up driving, realizing you’re not going to be promoted—are illuminating. His suggestion that the baby boomers redeem themselves for posterity by erasing the national debt is whacky. But he does deal with something tremendously important, and that is coming up with an immortality project.

I first learned about immortality projects when I read Ernest Becker’s The Denial of Death, which was published in 1973. It had such a profound effect on me that I called my book about aging The Denial of Aging in homage to his. Becker’s point, at least as I remember it, was that it is the awareness of our mortality, more than anything else, that distinguishes us from other mammals. 

Now I don’t know if it’s really true that apes are totally oblivious to the prospect of death. But regardless of whether we are unique in this respect, I do think it’s fair to say that our recognition of our finitude profoundly shapes our existence. Some moral philosophers have even suggested that the prospect of further life extension is bad for us as it would induce a kind of ethical laziness—we would keep on putting off doing good because we figured we’d have plenty of time later. That may be a bit of an exaggeration, but I think there’s truth to the claim that mortality is a great motivator. I don’t think it’s necessary to invoke heaven and hell, some kind of post-mortem day of judgment, to induce people to lead a good life. It’s sufficient to realize that our time on earth is limited: if we want to make something of our lives, we better go ahead and do so. And built into the fabric of our being is a desire to live on after our death, to be remembered, and in that way, to triumph over our mortality. Which is where immortality projects come in.

What Kinsley’s book is about is finding an immortality project. He recommends that the baby boomers undertake a joint project with all the other baby boomers (eradicating the debt), which is more daunting and, in my view, less likely to succeed than embarking on an individual project. But Kinsley’s point is that being diagnosed with a chronic, progressive (and I would add, ultimately fatal) disease brought home to him the recognition that he had better get started. It made him think about what was really important to him—was it material possessions? Was it fame? Or was it something more durable?

Kinsley is telling us is that we need to get cracking. We better define our immortality project, our legacy, and start working on it. For Kinsley, it was the diagnosis of a serious disease that helped him figure out that he ought to have such a project. But for most people, that’s a little late. The real message of his book is not to wait. Don’t wait until you already know what disease is going to kill you. Don’t wait until you have dementia or widely metastatic cancer or advanced heart disease. We’re human: we are mortal and we know it. We should all be working on our legacy for much of our lives, where “legacy” may simply mean being the best person we possibly can be.

Finding Our Way

The last year of life is often filled with trips to the emergency room, admissions to the hospital—frequently the ICU—and multiple visits to medical specialists. The treatments patients endure during that final year are burdensome, invasive, and costly. And in the end, they die anyway.

The problem with this kind of analysis is that it starts with the time of death and works backwards. But we don’t know in advance who is going to die. What about all the people who undergo aggressive treatments and don’t die? Isn’t it possible that they live longer, and sometimes better, because of all those doctors and hospitals? We will all die eventually and the very old will die sooner rather than later. The challenge is to predict how we will get from here to there so that we can make reasonable choices along the way. A new study in the BMJ offers a possible means of figuring that out.

We’ve known for some time that older people follow different trajectories near the end of life, and that a useful way to characterize those trajectories is by the extent of dependence and disability. A rough approximation of what happens is:

A more refined description suggests that there are five distinct “trajectories of disability” in the last year of life and that particular medical conditions—heart failure, cancer, or frailty—do not alone determine the path. The new study indicates that a powerful determinant of the path, independent of the medical condition that proves to be the cause of death, is hospitalization.

The authors had the opportunity to analyze data from an ongoing longitudinal study of 754 community-dwelling older people over the age of 70 who were initially independent in four essential activities of daily life: bathing, dressing, walking, and going from lying to sitting and sitting to standing. A comprehensive home-based assessment was conducted at baseline for every patient and then every 18 months for over ten years, as well as telephone interviews along the way. The evaluation included mental status, chronic conditions, and physical performance. Data was available on 582 decedents.

Using a complex modeling procedure called “trajectory modeling” which is a form of a complicated process known as “latent class analysis,” the authors ended up expanding their earlier classification of 5 trajectories to 6. At one extreme is the total absence of disability in the year prior to death (17.2% of decedents). At the other extreme is persistent, severe disability (28.1%) or the presence of marked disability a full year before death, disability that didn’t get any better. In between are catastrophic disability (11.1%), in which a patient becomes acutely disabled, for example from a stroke; and three forms of progressive disability: accelerated disability (9.6%), progressive mild disability (11.1%), and progressive severe disability (23%).

The striking result of the analysis is that without exception, the course of disability closely tracked hospitalization. No matter how the authors adjusted their analysis to account for possible confounders, the results remained unchanged. For every trajectory, being admitted to the hospital in a given month had a strong, independent effect on the severity of disability.

Now it’s possible that it was the acute problem leading to hospitalization, not the ensuing hospitalization, that caused the functional decline. The conclusion may be that we need to redouble our efforts to make hospital care for older people better, to try to improve over the modest progress we have made to date with ACOVE (acute care for vulnerable elders) units and fall prevention protocols. Or the conclusion might be, as the authors suggest, that patients admitted to the hospital with progressive, severe disability or with persistent severe disability, it would be best to suggest a palliative approach to medical care.

Whatever else we take away from this intriguing study, we should recognize what was perhaps obvious all along: it is often difficult and frequently impossible to predict from a single point in time what a given patient’s trajectory will look like. But if we consider two or three points in time and ask what the patient’s function is like over time, we can have a far better idea. Just as we cannot determine the slope of a line from just one point but we can calculate the slope from any two points—and we need more points to define more complicated curves—so, too, will we do better at prognosticating if we see patients as dynamic rather than static.

Not Dying Yet

I used to think that palliative care was just for people who were dying. Then I found out—about a dozen years ago—that palliative care had expanded its original focus on end-stage cancer patients to include people with serious illness throughout the course of their disease (or diseases). Palliative care, I realized, is far more than hospice, a program that in the US is effectively restricted to patients expected to die within 6 months.

With this shift in perspective, I decided to move from an emphasis on the geriatric population, principally the frailest and sickest of the elderly, to a concentration on patients in the last stage of life, regardless of age, and regardless of how long that stage might be expected to last. For some disease states, including cancer, this effectively meant people in the last six or twelve months of life, since it was only at that point that we could determine the seriousness of their condition with reasonable reliability. For other disease states, such as frailty or dementia, the relevant population included people who might live for several years with a progressive, ultimately fatal condition. So I was surprised and dismayed when I read the fine print in an otherwise important and insightful article published this week about palliative care—and discovered that the authors’ wise recommendations were confined to people with a prognosis of one year or less.

The reason that it is so important to move the conversation about goals “upstream,” to start the discussion long before life’s last gasps, is that patients often shift their perspective on what’s most important depending on their underlying health status. People who have moderate dementia, who might expect to live several more years, may well not want life-prolonging treatments that will simply allow them to live long enough to develop advanced dementia, particularly when the treatments are burdensome. People who are becoming progressively frail may not want treatments that are apt to have as a side effect an even greater degree of debility and dependence.

It may not be ideal to limit discussion of the goals of care to patients with a prognosis of one year or less, but maybe it’s better than the current reality, which often involves no discussion at all, or limiting such talk to patients who are moribund. The problem with such an approach is both that it means subjecting the hundreds of thousands of patients with dementia or frailty or progressive heart or kidney disease to invasive tests, procedures, and medications that they may not want and that it risks turning people away by, once again, equating palliative care with dying. Palliative care is not just for imminently dying people. It is for anyone with a serious, progressive, incurable illness. And since we can’t cure diseases such as congestive heart failure or chronic obstructive pulmonary disease or Alzheimer’s disease, and those are precisely the conditions that tend to afflict people 80 and beyond (and some who are younger as well), we need to think about palliative care for this entire population. Palliation is not just for the dying.