Venting About Ventilators

Yesterday, the New York Times published a short article I wrote about what family caregivers can do to try to keep vulnerable older family members safe during the coronavirus epidemic. We as individuals and as a society should do our utmost to keep everyone healthy; my article suggests a few strategies to help those older people who live in the community but need help with personal care or other basic daily functions. 

In many cases, our strategies will succeed, but we have to be realistic and think about the possibility that, despite our best efforts, some older adults—those in their 70s, 80s, or 90s—will get sick. A minority will get so sick that physicians will propose transferring them to the intensive care unit (ICU); most of those brought to the intensive care unit will be breathing so poorly that doctors will advise a ventilator, or breathing machine. 

The popular press makes it sound as though with ICU treatment in general and a ventilator in particular, older patients infected with Covid-19 will live and without this form of treatment, they will die. The reality may be quite different. A report of the experience of nine Seattle-area hospitals just published in the New England Journal of Medicine sheds some light on the question.

The authors report on 24 patients with Covid-19 who were sick enough to be admitted to the ICU. Five of them were over age 80 and five were between 70 and 80. This is a very small sample, but the paper is one of the few published reports that included detailed information about each patient. The outcomes were sobering.

In this group of 10 very sick older Covid-19 patients, 8 died, for a mortality rate of 80 percent. By comparison, among the 14 very sick Covid-19 patients under age 70, 5 died, or 36 percent. A subset of the 24 extremely ill patients received mechanical ventilation—a tube was inserted into their lungs that was connected to a machine that breathed for them. Among the 7 patients over 70 who were both in the ICU and intubated, 6 died, or 86 percent, compared to 4 out of the 11 intubated patients under age 70 (36 percent). The sole case of an older patient with Covid-19 who was intubated and lived was notable for the complete absence of underlying chronic conditions (comorbid conditions, as defined by the study, include asthma, chronic obstructive pulmonary disease, obstructive sleep apnea, infection with human immunodeficiency virus, immunosuppression, diabetes mellitus, chronic kidney disease, and ischemic or hemorrhagic stroke).

An earlier study from China found that among 52 patients admitted to the ICU with Covid-19, the survival rate for people over 70 was 10 percent compared to 45 percent among those under 70.  

Data from the National Health Service in England reporting on the British experience through March 27 found that of 157 patients admitted to an intensive care unit with Covid-19, 73 percent of those aged 70 or older died compared to 35 percent among those under 70. 

In summary, in these three reports, survival rates were low for older patients admitted to the ICU, particularly for anyone who was put on a ventilator. That doesn’t mean it never happens. But it strongly suggests that if you are over 70 and if, despite all the best efforts at prevention, you do get the virus, and if you are one of the minority who become extremely ill with the infection, the outlook is poor. 

Many though by no means all people, if they know the end is likely to be near, do not want aggressive medical treatment that offers little or no benefit. This goes for people with advanced cancer, severe heart disease, or any of a variety of other conditions that are usually fatal. They’d rather receive medications such as morphine to ease their shortness of breath and medications such as lorazepam to ease their anxiety than to undergo extremely uncomfortable treatment that has only a small chance of prolonging their lives. Severe Covid-19 is another condition for the oldest Americans to consider adding to the list.

We all hope we won’t get the virus and that if we do get it, we’ll have a mild case. We hope that if we have a more serious case, we won’t be sick enough for doctors to propose transferring us to the ICU and using a ventilator. But if you are over 70 and you become severely ill with Covid-19, you will be facing a situation that may be as dire as advanced cancer. To be sure, if you survive the coronavirus infection, you might have a good quality of life (though this, too, is uncertain as we know little about life-after-the-virus for those who have been in an ICU) and you might live for some time. If you benefit from treatment of advanced cancer, on the other hand, the benefit may be short-lived. But in both cases, you have a choice. You can decide that you want any and all treatments, however burdensome and however likely or unlikely they are to improve your condition. Or you can opt for a more palliative approach. You don’t have to accept treatment that you regard as excessively burdensome. You don’t have to spend what might be—but might not be—your last days in an ICU with a machine breathing for you, unable to eat or speak. You can choose instead to be treated with intravenous fluids, oxygen, assorted medications, and other forms of supportive care but to decline admission to an ICU and intubation. Your general state of health (before coming down with a coronavirus infection) and your personal preferences should guide your decision.

Most people with Covid-19 infections do not become so desperately ill that they are admitted to an ICU and intubated. Specifying in advance whether you would want this kind of treatment by signing a simple advance directive and discussing your wishes with your health care proxy is a type of insurance policy. Like flood insurance and fire insurance, you hope you will never need to make use of it. But it’s good to have it, just in case.

Frailty Matters

Last week’s British Medical Journal draws attention to the growing literature confirming that the intensive care unit (ICU) is a perilous environment for frail older people. A position piece written by an intensivist, a geriatrician, a professor of critical care, and a “patient and public representative,” argues there is a mismatch between the supply and demand for intensive care and that increased public awareness of what admission to the ICU does—and does not—mean for patients and their families is the key to addressing the problem.

Leaving aside whether the proposed solution, public education, has the slightest chance of working, I decided to have a look at the research papers on which the position piece was based. The first article, from Scotland and published in Critical Care Medicine, deals with “Health-Related Quality of Life After ICU.” The results, in a nutshell, are that what determined how well people did after discharge from the ICU in terms of both mental and physical functioning was affected far more by how well they functioned before they got sick than how sick they were when hospitalized.

The second article, based on patients in 311 ICUs in 21 European countries published in Intensive Care Medicine, found that among people over age 80, the greater the degree of frailty, the higher the 30-day mortality. In patients who, prior to admission, were not frail the 30-day survival was 76 percent; in the “pre-frail” group it was 71 percent, but in the frail group, it was 59 percent.

The importance of these studies is not so much the numbers they report—although I thought that a 30-day survival rate of 59 percent in frail octogenarians was not bad—as their emphasis on physical functioning. We in the U.S. continue to pay little attention to frailty. The Europeans, evidently, do pay attention to frailty. In part, the reason for the difference is that Europeans actually assess frailty while Americans, to a large extent, do not. We are still fighting over how best to measure and record it. The final takeaway from these articles is that the specific scale the Europeans use is so easy to use that the researchers did not have to teach physicians, patients, or families how to use it: it’s self-explanatory.

Forget about American exceptionalism. Let’s adopt the tool in use in the much of the rest of the developed world.

Where We Die

Honoring patient preferences, which is shorthand for providing an approach to medical treatment consistent with what patients say they want, has become a fundamental tenet of American medicine. And one preference that the vast majority of Americans share, according to multiple studies, is the wish to die at home. 

Whether dying at home is actually what patients want when they are faced with impending death, rather than an abstract preference expressed when they are healthy, is another matter—and I’ve previously argued that as hospital-based palliative care improves and home-based palliative care places an ever-growing burden on families, hospitals have become more attractive as a site for dying. But what patients tend to agree on is that they don’t want to suffer as they are dying.

To the extent that hospital care entails interventions such as ventilators or ICU treatment or chemotherapy, patients are reluctant to subject themselves to this type of care, especially if its likelihood of prolonging life is remote. To the extent that fewer hospital deaths and more home deaths is a marker for less suffering at the end of life, change in this direction is very desirable. A new study by Teno and colleagues shows we are continuing to make progress in this direction.

A few years ago, Teno et al performed a similar study comparing the experience of patients in 2000 to the comparable experience in 2009. What they found then was a marked decrease in the percentage of elderly Medicare fee- for-service decedents (health-policy-speak for people over age 65 with conventional Medicare who died) who expired in the hospital (32.6 percent vs 24.6 percent). Over the same period, however, they found ICU use increased among decedents in the last month of life (from 24.3 percent to 29.2 percent) as did the percentage of dying patients who underwent a transition of care (nursing home to hospital, for example) in the last 3 days of life (10.3 percent to 14.2 percent). The current study updates these findings by extending the period of analysis to 2015 and by adding data from older patients enrolled in Medicare Advantage programs, who now account for 30 percent of the Medicare population.

What they discovered today was that the proportion of hospital deaths among the fee-for-service group has continued to fall, going from 32.6 percent in 2000 to 24.6 percent in 2009 to 19.8 percent in 2015. ICU use in the last 30 days of life, which had risen between 2000 and 2009, remained stable at the 2009 level in 2015. Transitions to another site of care in the last 3 days of life, which had also risen between 2000 and 2009, went back down in 2015 to the same level as in 2000. And the chance of being enrolled in hospice at the time of death rose from 21.6 percent in 2000 to 50.4 percent in 2015. When the investigators looked at a sample of Medicare Advantage patients, they found these individuals had the same experience in 2015 as their fee-for-service counterparts.

What does all this mean? I suspect what it means is that when we know with a high degree of certainty that someone is going to die in the very near future, we tend to focus on comfort care. If physicians, patients, and families recognize that death is imminent, hospitalization is relatively unlikely, as is ICU care or transfers from home or nursing home to another site of care. However, physicians often cannot be so certain that death is likely to occur in the next few weeks or months. As long as the usual strategy is to pursue maximally aggressive care until death is virtually sure to occur in the immediate future, and then to abruptly transition to care focused exclusively on comfort, the picture we see today is likely to continue.

There is another approach. That approach involves opting for a goal that is neither comfort only nor life-prolongation at any cost. Instead, maximization of function is paramount; treatment aimed at prolonging life is also acceptable, provided it will not affect quality of life in a major way. So, too, is comfort a goal, but only to the extent that it does not conflict with maintaining function. For people who are frail, extremely old, or both this alternative strategy translates into fewer hospitalizations, fewer ICU stays, and fewer transitions of care in the final stage of life, whether that period is measured in weeks, months, or even years. 

Medical treatment does not have to be all or none; there is something in between. It’s quite possible that many people would opt for this type of care—if only they knew it existed.

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.

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.