Life and Death in the End Zone

When President Obama announced a new, renewed war on cancer in January 16, saying “let’s make America the country that cures cancer,” many of us in the medical profession rolled our eyes. We’ve been at war with cancer at least since President Nixon issued the first declaration of war in 1971 and while we’ve won a few skirmishes, there’s a long way to go. The most impressive accomplishment over the last 50 years is a fall in the death rate from lung cancer—which is principally the result of fewer people getting lung cancer in the first place. And that’s related to a dramatic drop in cigarette use, not to better treatment.

To be fair, there are some areas of cancer care where progress has been stunning. Many forms of adult lymphoma can be cured. Ditto for some kinds of childhood leukemia. The treatment for a handful of diseases has gone from abysmally poor to stunningly successful with the introduction of totally new approaches to treatment—chronic myelogenous leukemia and selected cases of lung cancer are the poster children for the new world of targeted chemotherapy. But the other major advance in cancer care, which is less often touted than it should be, is in the treatment of dying patients.

We’d all love to be able to prevent cancer and we’d be thrilled to cure anyone who nonetheless developed the disease. But for now, and probably for the foreseeable future, cancer is very much with us. The latest statistics show that cancer accounts for 23 percent of all deaths, almost as large a proportion as for heart disease, which is responsible for 26 percent of deaths. And the good news—there is some good news here—is that far more patients who die of cancer receive the benefits of palliative care in their last days, weeks, or months of life. But what about the 77 percent of people who die but of something other than cancer? A new study reminds us that we don’t do nearly as well in caring for these people near the end of life.

Among patients who died in a VA hospital between 2009 and 2012, and there were over 57,000 such people, 74 percent of those dying of cancer received a palliative care consult at some point during what would prove to be the last 90 days of their lives. Among people who died of heart disease, lung disease, endstage kidney disease, or frailty, the rate was between 44 percent (for the frail) and 50 percent (for those with advanced renal disease). People who died of dementia and its complications fell somewhere in between, with 61 percent getting an inpatient palliative care consultation.

When the study authors looked at a couple of other indicators of dying well, they found the same pattern. People with cancer died in inpatient hospice units and had a DNR order at the time of death far more often than those with diseases of the heart, lung, or kidney, and people with dementia fell in between. For example, 43 percent of the cancer patients took their last breaths in a hospice unit but only 23 percent of those with cardiopulmonary failure. Likewise, roughly one-third of patients with kidney disease, cardiopulmonary failure or frailty died in the ICU, compared to only 13 percent of people with cancer. In this instance, patients with dementia fared best, with only 9 percent of them dying in the ICU.

The family members of patients who died were asked their opinion about the quality of end of life care their relatives received in the hospital. Using the Bereaved Family Survey, which 64 percent of families completed, the study found that 59 percent of families whose relative had cancer or dementia reported excellent over all care. Among the remaining families, 54 percent reported excellent care—which was statistically significant although not dramatically different.

People who die in one of the nation’s 146 inpatient VA hospitals may be different from the population as a whole. Most obviously, they are overwhelmingly male (98 percent). The VA has a long and venerable tradition of providing high quality, cutting edge geriatric care and has also taken the lead in the palliative realm. And studying only patients who die in the hospital—when about 70 percent of patients die somewhere else (for people over age 85, 40 percent died in a nursing home, 29 percent in the hospital, and 19 percent at home)--may not provide an accurate view of what happens to people near the end of life. But the study strongly suggests that while we still have a ways to go in optimizing cancer care, including at the very end, we especially need to redouble our efforts in caring for patients with non-cancer diagnoses. I would include dementia here: the study lumps the care of dementia patients together with the care of cancer patients as “good,” but the data suggest dementia is better seen as intermediate between the other two groups.

The trajectory towards death looks different for patients with congestive heart failure, endstage renal disease, chronic obstructive pulmonary disease or that nebulous disorder, frailty, than it does for patients with cancer. But that’s more reason, not less, for palliative care consultation. The JAMA Internal Medicine study does not address the barriers to receiving palliative care faced by this under-served population. I suspect there are barriers both on the physician side and on the patient side. The medical profession—and particularly cardiologists, pulmonologists, nephrologists, and neurologists—needs to endorse palliative care for everyone with advanced, life-limiting disease. But patients and families can help, too. Just speak up.

No News Is Bad News

Every year since 2007, I’ve been commenting on the annual update to the report, Alzheimer’s Disease Facts and Figures. The report came out at the very end of March this year, as it usually does, but I didn’t notice. April was a busy month for me. May was even busier and June shows little indication of letting up, but I suddenly remembered that I hadn’t seen the latest report, let alone commented on it. Here are a few highlights.

Both the current prevalence of Alzheimer’s disease and predictions about the future remain stable—and grim. We’re at 5.2 million people over age 65, with 11 percent of those over age 65 and 32 percent of those over 85 afflicted. By 2025, unless something changes very soon, the number of Americans with Alzheimer’s will be 7.1 million and by 2050, it will be 13.8 million, reflecting both the graying and the growth of the population.

People with dementia continue to have other medical conditions and it is the combination that drives up hospitalization rates and health care costs. Among people with Alzheimer’s, 38 percent also have coronary artery disease, 37 percent also have diabetes, 29 percent have chronic kidney disease, 28 percent have heart failure, 25 percent have chronic obstructive pulmonary disease, and 22 percent have stroke. There are, of course, other concomitant conditions—13 percent have cancer—but these are the big six. And because it’s so much harder to diagnose and to treat people who have an acute medical problem and also dementia, the hospitalization rate among older people with Alzheimer’s (plus whatever is sending them to the hospital) is now 538/1000, compared to just about half that, or 266/1000 among people who are over 65 but don’t have Alzheimer’s.

The cost of care for people with dementia is mind boggling. It’s always a bit tricky to compute a single number, but the best estimates are that the combination of health care costs, including hospice, and long term care costs is now $236 billion a year, of which Medicare and Medicaid pay 68 percent ($160 billion) and patients and families pay 19 percent ($46 billion) out of pocket.

To provide a little variety to the reports, which are otherwise depressingly similar every year, the Alzheimer’s Association always includes a special section on a new topic. This year’s special report is on the financial impact of Alzheimer’s disease on families, who provide over 80 percent of the personal help that people with dementia require. The conclusion from in depth interviews of a sample of caregivers is that taking care of someone with dementia can jeopardize the ability of the caregivers to buy food, it can jeopardize their personal health, and it threatens their financial security.

Is there a take home message from this sad saga? There are the usual cautions: Alzheimer’s disease is not going to disappear tomorrow so we better come up with better institutional arrangements today; caregivers have a crucial and under-appreciated role in providing and supervising the medical care of their family members with dementia; and long term care insurance is currently inadequate to shield families from potentially devastating financial burdens. But what struck me in reading through this year’s version of the report was one statistic I had not previously noticed: the reason families are so financially burdened is that 50 percent of Medicare beneficiaries have an annual income of less than $24,000 and less than $63,000 in total savings. That's a paltry amount. No wonder Alzheimer's is a financial burden on family members! For the young old, not to mention those who aren’t old by anyone’s definition, it’s time to start saving.

Rest In Peace

Geriatrics is not just about death and dying, but end of life issues are a prominent part of the field. As a geriatrician, I often recommend to patients that they record their life story for their children and their grandchildren. I have also gone to many memorial services, both for friends and for patients, as well to some funerals. But I’ve never written an obituary. Summarizing a person’s biography is a chance to put on paper the highlights of a life. It can serve to memorialize someone who is gone. And just as reminiscing can be therapeutic for older people who look back on their lives, writing an obituary can similarly be valuable for a family member who undertakes this responsibility. As a geriatrician and a daughter, I offer the following about my father, who died a week ago at age 92.

Hans Wolfgang Max Garfunkel was born in Koenigsberg, East Prussia (Germany) on April 24, 1924. His parents, Julius and Paula (nee Lonky) Garfunkel, lived in the picture-perfect town of Osterode, some 50 miles away, but with a population of only 18,000, Osterode was too small to have its own hospital and Julius believed his son should be born in a hospital. For the next ten years, the Garfunkel family, which also included an older brother, Günther, nine years Hans’s senior, remained in Osterode, where Julius ran a men’s clothing store. It was a pastoral setting, on the sparkling waters of a serene lake and a short drive away from the pristine spruce trees of a nearby forest. But Hans was from his earliest years more drawn to urban life and was thrilled when, in 1935, his family relocated to Berlin.

The move was precipitated by more than a yearning for city life. Not long after Hitler’s ascendance to power, the town of Osterode had marched its 170 or so Jewish residents down Main Street wearing placards around their necks announcing “I am a Jewish pig.” The Garfunkels had been spared; notified in advance of the planned “parade,” they had arranged to be out of town. The next indignity came when Julius was forced to “sell” his store for a pittance to a non-Jew. But the final blow was when the public high school was closed to Jews. There was no way the Garfunkel family would halt their son’s education. Instead, they moved to the exciting, cosmopolitan, and still relatively free capital city of Berlin.

Whatever naïve convictions the Garfunkel family maintained that the “Hitler craziness” was just a passing fad were shattered on Kristallnacht (the Night of Glass) in November, 1938. Hundreds of synagogues throughout Germany were torched, including the synagogue where young Hans had had his Bar Mitzvah just two years earlier. Thousands of store windows were smashed, their contents looted. And about 30,000 Jewish men were taken to “detention centers” in Buchenwald, Sachsenhausen and Dachau for the sole crime of being Jewish. They were humiliated, tortured, and many were “shot while trying to escape.” Julius Garfunkel may not have realized that this was just a dress rehearsal for what was to come, but he understood that he and his family had no future in Germany. He applied unsuccessfully to immigrate to the United States—state department officials helpfully informed him that the wait list for the Lithuanian quota (he had been born in Lithuania) was several years—but he was able to get Hans out on a special “Kindertransport,” a rescue mission to Brussels for about 90 Austrian and German Jewish children organized by a committee of wealthy Jewish Belgian women.

In January, 1939, Hans Garfunkel left Germany. He would never see his parents again. His father died in a Berlin hospital in 1942 after prostate surgery. His mother was deported in August, 1942. Along with 1000 others, she was taken by train to Riga, where almost the entire group (there were 3 survivors) were immediately murdered.

Hans lived for a time with a distantly related family in Brussels, attending a Catholic school. After outstaying his welcome—the unrealistic expectation of his parents and of the family sheltering him was that all the Garfunkels would be able to immigrate to England—he moved to a boys’ orphanage in Brussels.

The stay in Belgium was abruptly curtailed when the German army invaded the country in May, 1940 after a successful sweep through Denmark, Norway, and Holland. Hans Garfunkel, together with the 50 other Jewish refugee children in the boys’ orphanage and another 40 or so refugee children in a corresponding girls’ orphanage, got on a train bound for parts unknown. After meandering through the countryside for days, the group arrived in southern France, which would be their home for the next 2 ½ years.

That first winter was terrible. It was the coldest winter in years and the barn where the children lived was unheated. There were mice, rats, and other vermin. Most of the children had lice. They were malnourished. Some undoubtedly had scurvy. But then the group came under the protection of the Swiss Red Cross and moved to slightly better accommodations in an unoccupied castle, the Château de la Hille, also in southern, as yet unoccupied, France, not far from the Pyrenees. News of parents who “went on a trip,” never to be heard from again, was increasingly common. One of the girls in the group, Ilse Wulff, got a postcard informing her that her father, who had immigrated to Shanghai, had died. Seven years and a life time of experiences later, Ilse Wulff would marry Hans Garfunkel.

The charmed existence at the Château, which only in the context of the surrounding world of barbarism could possibly have been construed as idyllic, came to an end in August, 1942 when the French police rounded up all the over 16-year-olds as part of their agreement with their Nazi masters (while the south of France was not at the time occupied by German soldiers, its Vichy government was far from independent) to deport all foreign-born Jews. Hans (as well as his future wife, Ilse) were taken to camp Vernet, a way station to Auschwitz. Through the somewhat miraculous intervention of the Château’s Red Cross supervisors, the group was released.

But the writing was on the wall: France was not a safe haven. On Christmas eve, 1942, Hans Garfunkel made his way through the snow from France to Switzerland, crossing the border illegally. He would be followed on New Year’s eve by Ilse Wulff. Hans spent the next year in work camps in Switzerland, cutting down trees and engaging in other heavy manual labor, but at least he was safe. For a time, he managed to arrange to take high school classes in the evening and ultimately to attend school full time. He then took the entrance examination to the University of Bern, did extremely well, and enrolled in the spring of 1945.

The war was over in Europe and the future suddenly looked bright. At least, Hans had every hope of having a future. But in August of 1945, while again interned in a work camp during what was supposed to be the university summer vacation, he suffered a mental breakdown. He was hospitalized at a local psychiatric facility until the winter of 1946 when he resumed his studies. Then, in the fall of 1946, the Swiss authorities demanded that he emigrate, explaining that Switzerland “had no problem with anti-Semitism and didn’t wish to develop one.” Hans traveled to São Paulo, Brazil, where he was reunited with his brother Günther after more than ten years apart.

Dismayed by the corruption endemic in Brazil and distressed by both the ruling government, which was threatened from both the right and the left and itself assumed power over the previous semi-fascist régime in a military coup, Hans immigrated to the US in the fall of 1947. In New York City, he met an old friend from his days at the Château de la Hille, Ilse Wulff, and the two refugees found comfort in each other’s company. They married in Central Park, New York, in September, 1948.

Hans worked as a clerk for an export-import firm, earning paltry wages and struggling to make ends meet. He endured the indignity of a landlady who reported him and Ilse to the police as suspected Communists when they had a few visitors in their tiny, walk-up apartment. But in many respects, life was looking up. Hans and Ilse found a new apartment, had a daughter whom they named Muriel Ruth in May, 1951, and soon afterwards were sworn in as American citizens.

In the mid nineteen-fifties, Hans found a new job working for the US sales office of a British steel company. He was rapidly promoted, eventually becoming President of the firm’s American subsidiary. Hans would remain with Firth Cleveland Steel through its acquisition in 1972 by Guest, Keen and Nettlefolds until his retirement in 1986.

After retiring, Hans and his wife Ilse moved from New York to Newton, Massachusetts to be near his daughter, who was by then a practicing physician, and her family. He was a proud and devoted grandfather to Daniel, Jeremy, and Jonathan.

Throughout his life, Hans remained plagued by panic attacks and depression. He was nonetheless able to function as a high-powered executive, to travel widely, and to support his family. He was active in local politics as well as the Ethical Culture Society, Facing History, and a German-Jewish dialogue group until his admission to a nursing home in the fall of 2011. He died on May 29, 2016 of complications of Parkinson’s disease and dementia.

Sense, Common Sense, and Nonsense

Massachusetts has a problem with nursing home quality. A recent report by the Boston Globe found that a number of the state’s for-profit nursing homes provide substandard care—and pay their chief executives million dollar salaries. Earlier investigative journalism revealed that in several facilities, the trouble started when an out-of-state private equity firm bought the nursing homes. Previously high performing homes suddenly were cited for a variety of deficiencies, such as lax infection control and a rise in pressure ulcers (bed sores), which seemed to be directly linked to a corporate decision to cut the nursing staff. Then came a couple of disturbing deaths of residents, such as the case of an aide who accidentally dropped a resident, resulting in her death a few days later. The state Department of Public Health investigated. Fines were levied. And now the Massachusetts legislature is considering tougher laws to deal with the situation: higher fines, more draconian penalties for unsafe conditions in area nursing homes. Who could disagree with a strategy to promote basic health and safety standards in nursing homes—a standard we thought we had achieved after exposes in the 1980s led to sweeping federal regulation of nursing facilities (OBRA-87, the so-called “Nursing Home Reform Act”)? The goal is indisputable; the strategy is questionable.

The proposed legislative changes are billed as “common sense regulations.” Everyone seems to talk about common sense regulations these days, except the most extreme politicians such as Ted Cruz who want to get rid of all regulations. Republican presidential hopeful John Kasich touted as a model that he would emulate at the federal level the “Common Sense Initiative Office.” As governor of Ohio, he created this pro-business group which reviewed 2476 rules and rescinded or amended 1398. President Obama talks about common sense gun safety reform. Massachusetts governor Charlie Baker has recommended reforming the disaster-ridden Department of Children and Families by imposing common sense regulations. The list goes on and on. But the problem is that our intuitions about how the world works, our common sense solutions to how to make it better, are often mistaken.

If modern science has shown us one profound truth, it’s that behavior, whether of man or of molecules, is often entirely unexpected. Common sense told us that some illnesses were divine punishment for immoral behavior—after all, poor people living in crowded urban areas were more prone to various outbreaks than wealthier people living in sparsely populated rural areas. Common sense told us that some diseases were due to particulate matter, to something floating around in the “miasma,” and surely not to invisible, live microorganisms. Common sense told us that time has nothing to do with the speed at which you travel. Common sense told us that light is either a particle or a wave but not both. Common sense was plain wrong.

Health policy is similarly full of surprises. In the policy arena, we talk about “unintended consequences” of our actions. Now the fact that things don’t always turn out the way we planned doesn’t mean we shouldn’t plan. In the case of nursing homes, it doesn’t mean we shouldn’t have any regulations. But it does mean we need to evaluate whether our interventions have the desired effect. And in the case of substandard nursing homes, I strongly suspect, based on studies documenting the relationship between staffing ratios and quality of care, that better surveillance and tougher penalties are only a small part of the solution. What we really need is more staff and better paid staff. And that means higher levels of Medicaid reimbursement to nursing homes (the majority of long-stay residents are on Medicaid), which means that the states have to increase what they pay nursing homes.

Between 2009 and 2012, 40 states froze or cut Medicaid reimbursement to nursing homes, though these trends are gradually reversing. Massachusetts is considering, as part of the 2016-2017 budget, increasing its payments to nursing homes. How this provision will fare in the final budget remains unclear. It’s easier to use the stick than the carrot. But only careful study of whatever policies are instituted will reveal whether they’re working. So far, the evidence favors more and better staff as the best way to improve nursing home quality.

You Get What You Pay For—Or Do You?

The Affordable Care Act, as it turns out, isn’t just about providing health insurance coverage for the 40 million previously uninsured Americans. It’s also about reforming Medicare, in part to pay for some of the costs of providing health insurance for everyone, in part to keep Medicare from going bust, and in part to improve the quality of care provided by Medicare. The favorite strategy for modifying Medicare is “value-based purchasing,” which is another name for pay-for-performance. The idea is simple: don’t just pay whatever doctors or hospitals ask for and don’t pay per service (the original fee-for-service model); instead, pay based on results. After all, physicians aren’t supposed to perform tests and procedures just for the sake of doing something; they are supposed to do things in order to improve health. So why not pay physicians only if they make people better? 

The problem, of course, is that not everyone will get better, no matter how state of the art their treatment, and some of them will get better but along the way they will also suffer from all kinds of complications. To deal with the realities of taking care of people who are old and sick, Medicare has adopted a policy that rewards—or penalizes—hospitals based on their performance on a combination of measures: the processes of care, the outcomes of care (specifically 30-day mortality), the patient’s satisfaction, and whether or not patients are readmitted to the hospital within a month of discharge. The big question is, does this approach work?

Previous studies have failed to show any benefit on clinical processes or patient satisfaction. Now, a new study in BMJ suggests that it doesn’t improve mortality either. The authors examined mortality among patients with heart attacks, heart failure, or pneumonia (the 3 conditions for which Medicare “incentivizes” hospitals using its value-based reimbursement scheme). They compared mortality rates for these conditions before and after the introduction of Hospital Value-Based Purchasing. They studied whether changes in mortality in the target conditions differed from changes in a comparable group of patients with other medical conditions. They tested whether the trends were any different at hospitals that didn’t participate in the HVBP system. And to look for trends, they determined mortality rates over a 3-year period before the introduction of Hospital Value-Based Purchasing and over the 3 years after its introduction. The result: nothing changed. 

Not everyone will be satisfied with the authors' choice of the comparison group—either of patients with different medical conditions or of hospitals that participated in a different reimbursement scheme. The risk adjustment process might be flawed. Maybe 3 years wasn’t long enough to see an effect, especially since the incentives have been changing—initially, hospitals were rewarded if they did well, now they are penalized if they do poorly, and the magnitude of the penalty increases annually. So it would be premature to conclude that value-based purchasing is a failure. But surely it isn’t a great success, either, if no one has been able to prove that it does what it’s supposed to.

Medicare has the potential to shape geriatric care in the U.S. There’s no question that strategies invoked in the past such as the introduction of prospective payment for hospital care (ie paying a fixed amount for a given condition, rather than a fixed amount per day in the hospital) have made a huge difference in both costs and outcomes. But it’s not at all clear that the prevailing enthusiasm for pay-for-performance is the answer to providing better, more cost-effective care to older people. 

Maybe we need to go back to the drawing board and analyze the weaknesses of our current system. Perhaps what we will find is that the weaknesses are not just fragmentation, lack of coordination, and the triumph of high tech over high touch, although these are all important. Perhaps what we will find is that the weaknesses include a focus on disease rather than function, on individuals rather than families, and on the values of physicians rather than patients.

Beyond Doctoring

I’ve long been amazed by the legerdemain that went into deciding what Medicare will cover and what it won’t. I’m not talking about decisions made in the past decade about what procedures to pay for, by and large rational decisions that have been based on a careful analysis of the evidence supporting their efficacy. I’m talking about some of the most basic aspects of Medicare, such as its exclusion of long term care. Now I recognize that the main concern of those who crafted the 1965 legislation was to provide some kind of health insurance for older people without busting the budget. To achieve this end, they decided to distinguish between things that are medical (which Medicare would ostensibly cover) and things that are not (which it wouldn’t). What that distinction has meant is that housing, transportation, diet, and all kinds of other nominally social goods are off limits for Medicare coverage. A new study by Elizabeth Bradley and her colleagues at Yale shows just how arbitrary—and often counterproductive—such a conceptual divide actually is.

Following up on their groundbreaking work in which they showed that countries with higher social service spending relative to health care spending had better health outcomes, the study team compared the performance of the 50 states (and the District of Columbia) over a 10-year period, from 2000-2009. They defined the extent of each state’s investment in social services by calculating the ratio of social service plus public health spending (on education, income support, nutritional assistance, housing, transportation, and the environment) to the state’s total government health care spending (Medicare plus Medicaid). Then they examined the relationship between this ratio and eight health outcomes (including the percent of the population that is obese, has asthma, or has functional limitations, and mortality rates for heart attack, lung cancer, and diabetes). What they found is that states with higher ratios of social to health spending had significantly better health outcomes (in 7 of the 8 domains).

It's striking that the variability in spending on health care (as a percentage of GDP) across the states is considerable, ranging from less than 4 percent in Colorado, Utah, and Wyoming to nearly 10 percent in Maine, West Virginia, and Missouri. Likewise, the variability in spending on social services and public health is dramatic, going from about 12 percent to over 20 percent. The net effect is that the allocation of resources between social services and health care differs substantially from one part of the country to the next.

It’s a complicated study and I’m sure that methodology mavens will have a field day with it. But the attempt to assess the contribution of social supports to outcomes is so reasonable and the results are so striking that we have to take very seriously the idea that social factors are a major determinant of health and well-being. I’m convinced this is particularly true in older people, whose quality of life is at least as affected by where they live and their ability to find meaning in life as it is by their physical ailments. I suspect that this study is as important as work by Michael Marmot showing that health worsens as people descend the social ladder—not just because of income inequality, but also because of discrepancies in social status. If we want to foster good health, which the World Health Organization defines as “a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity,” we need to focus on relationships and housing as well as on drugs and devices. And for older people, that may mean user-friendly computers and better assisted living facilities rather than a left ventricular assist device or a new monoclonal antibody.

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

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

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

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

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

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

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

Where's the "Assist" in "Assisted Living?"

Assisted living (AL) exists for one very simple reason: most older people don’t want to live in a nursing home. They want privacy and autonomy, which nursing homes seldom offer. Despite all the efforts to put the “home” back into nursing homes, and despite the culture change movement that sought to transform the structure and organization of nursing facilities, most people still don’t want to live in a nursing home. One consequence is that assisted living facilities today are filled with people who not that long ago would have lived in a nursing home: they are old, they have multiple chronic conditions, and just about half of them have some degree of dementia. But assisted living facilities were created with the idea that they would be strictly non-medical residences. That’s a problem.

The tension between the idealized image of the assisted living resident and the actual assisted living resident increasingly translates into a struggle over what services AL can legitimately provide and who will regulate them. The rules are set by the individual states, so what happens in California is not the same as what happens in Alabama. In some states, only a licensed nurse can give a patient a medication. In other states, aides can give out medications. In some states, aides can supervise a patient taking a medication—they can remind the person he is supposed to take a pill and watch him doing it, but they can’t take the pill out of a bottle and give it to him. In other states, aides aren’t even allowed to do that. Periodically, state legislatures try to change the rules about just how medical AL should be. That’s what’s happening in Massachusetts today. Proposed legislation would allow AL to provide certain medical services that are currently unavailable: treating skin problems, providing wound care, giving injections, and administering oxygen. And predictably, conflict has erupted over whether the rules should be changed and if they are, who should be responsible for ongoing monitoring.

The controversy over whether and to how great an extent AL should be able to provide nursing care is usually framed as a concern about the medicalization of assisted living. The whole idea of AL is that it is much more like a person’s home than like a hospital and the concern is that if residents can have medical procedures on site, this will undermine AL’s home-like essence. But is that really the way to think about this issue?

After all, if an older person lives in his own residence, say the house where he has lived for the past fifty years, and his spouse gives him his medication, no one would object that his home has turned into a medical facility. Ditto if a family member applies skin cream to a rash. And does it turn the home into a hospital if a personal care attendant wheels in an oxygen tank and hooks it up to a mask or to nasal prongs worn by the older individual? Family members learn to give insulin injections. They are taught how to give artificial nutrition through a gastrostomy tube and to administer intravenous medication. They even operate all kinds of pumps and monitoring equipment. In fact, the report, Home Alone, issued a few years ago, found that almost half of all family caregivers reported that medical tasks formed part of their responsibility, including some pretty complex interventions.

Now nursing aides aren’t the same as family members. They take on whatever responsibilities they are assigned because it’s their job, not out of love or compassion or filial obligation. But the point is that if family members routinely perform these sorts of duties, in most cases with minimal instruction and no supervision, then surely aides hired by assisted living facilities could be expected to do precisely the same things, perhaps with a smidgeon more instruction and some degree of ongoing supervision. In any case, the act of putting on a bandage or attaching a bottle of Ensure to a feeding tube doesn’t automatically turn AL into a medical facility. But failing to letting aides do some of the tasks that people would expect their families to provide if they lived in their own home turns AL into a very inadequate sort of a home indeed.

Sometimes I think we draw the wrong conclusions about who can do what because we assume that the person who performs a given task should have a thorough understanding of the technology he or she is using. That would be nice, I suppose, but how many of us who drive a car have the slightest understanding of how the transmission works or the difference between a generator and an alternator? In the case of people taking medicines or getting treatment for a rash, we shouldn’t confuse administering treatment with monitoring effectiveness. I don’t see why the same person necessarily has to do both.

Years ago, I read a study of the use of psychotropic medications in the nursing home. The authors were shocked to discover that the nurses who gave out powerful medications had no idea of their side effects and couldn’t identify one if their life depended on it. I thought at the time and I still think today that the researchers’ dismay was misplaced. Someone should have been monitoring those nursing home residents: what was shocking was that nobody was. But did it have to be the person who doled out pills? Her job was to make sure that Sally Smith got pills that had been prescribed for Sally Smith—and not pills that had been prescribed for Stuart Smith. Her job was to make sure that Sally Smith got her pills three times a day and not twice or four times and that she actually swallowed the pills. Her job was to report to a physician if Sally Smith became very sleepy or was more confused that usual or developed difficulty with her walking—but not to figure out whether the pills were causing those problems.

The same goes for assisted living today. Of course people should be able to get simple “medical” treatment on site, just as they would if they had stayed in their previous home. Of course staff should be able to administer any treatment that family members routinely provide without an RN or an MD degree. Yes, staff need to learn how to do these things. And yes, a system needs to be in place to assure that patients—in this case we are talking about patients—have adequate monitoring of their medical problems. But let’s separate administration of treatment from ongoing assessment of the medical response to treatment. And let’s not transform the character of AL by subjecting it to the same rules as a nursing home. The way forward is to provide on site medical treatment while designing new rules that relate separately to the training and supervision of aides who are part of the staff and the provision of ongoing medical care by physicians and nurse practitioners who are not. 

If it's Good for Wisconsin...

The big news in palliative care circles this week was the results of the PerryUndem Research poll that surveyed physicians on their views about advance care planning discussions. It made the Boston Globe, it made Forbes, and it made US News and World Report, though I couldn’t find any mention of it in the NY Times, the Washington Post, or the Wall Street Journal—maybe they are holding off until Sunday. Or maybe they realized that the poll is new, but the findings aren’t. Physicians still don’t talk to their patients about advance care planning very much.

To be fair, what is new is that physicians who take care of the sixty-five plus population on a regular basis, or at least primary care physicians, oncologists, pulmonary doctors, and cardiologists, overwhelmingly think they should be talking to patients about their goals of care and their preferences in the face of advanced illness. They think it’s important and that it’s their job to do so. They support Medicare’s decision to reimburse directly for such conversations. But then comes the disconnect. While acknowledging the importance of having such conversations, they have all kinds of excuses for not having them: not enough time, uncertainty about what to say, no formal training. Even those who say that the new reimbursement policy provides a strong incentive to have “the conversation” haven’t actually billed Medicare as yet—only 14 percent of the 470 primary care doctors and 266 subspecialists who were surveyed say they have submitted a bill for advance care planning since the new rule went into effect in January.

The Patient Self-Determination Act of 1990, which mandated that all health care facilities that receive federal money ask patients if they have an advance directive and offer them the opportunity to create one if they don’t, didn’t push doctors to do their job. The availability of Medicare reimbursement hasn’t pushed doctors to act—though perhaps it’s too early to judge. All the publicity given to the last phase of life with projects such as the Conversation Project and books such as Atul Gawande’s bestselling Being Mortal has raised awareness and has perhaps moved physicians to accept that advance care planning is an important part of medical care for patients with advanced illness, but it hasn’t had the kind of impact we’d like to see. So what would work?

The survey identifies two promising areas, formal training and a systematic approach to implementing advance care planning. When either of these was in place, physicians were more likely to report that they had conversations with patients about their preferences. Physicians who had had some sort of training said they had such discussions at least once a week in 79 percent of those polled, but only 61 percent who those who hadn’t had the training reported discussing acp. Among physicians whose practices or health care systems had a system in place to promote advance care planning, 81 percent had the talk versus 68 percent who didn’t work in a such a system. Perhaps even more important was the use of an electronic health record that had a place to document preferences for care: 79 percent of physicians with such an EHR said they had conversations at least weekly, compared to 51 percent who did not.

Maybe the solution to increased advance care planning is to do more formal training and promote systems to support this activity, including electronic medical records with a special “field” to enter the results of such conversations. But I suspect that these approaches, though laudable, will not be enough. After all, we don’t know how often physicians actually have advance care planning discussions with their patient; we only know their estimate of how often they discuss such matters—and we also know that when physicians are asked to estimate how much time they spend with each patient, they are notoriously inaccurate. If we really want to ensure that advance care planning takes place, at least for patients with advanced illness, we need to promote advance care planning to the public as well as to doctors. 

Earlier public campaigns to promote advance care planning were not very successful: the Robert Wood Johnson Foundation spent millions and their efforts achieved little. But the one approach that by all  accounts has worked is the “Respecting Choices” program in La Crosse, Wisconsin, which introduced specialized training for clinicians, a systematic approach for implementation within the Gundersen Health System, and educated patients and families. If we truly want to make a difference, it's not going to be enough to focus on a single approach. We need to use the kind of comprehensive approach that worked in Wisconsin, and we need to use it throughout the country.

Ready, Aim, Fire

Firearms are a geriatric issue. The reason: suicide is more common in older people than in the general population and guns are the method of choice for older people who kill themselves. In fact, elderly white men have the highest suicide rate in the country (29/100,000 compared to the national average of 12.4 deaths/100,000). White men over 85 have a particularly high suicide rate: 47/100,000. A study in the Lancet could in principle help remedy this problem by shedding light on which of the existing firearms laws have any effect.

Examining data on suicides and homicides in the United States between 2008 and 2010, the researchers identified 32,000 gun-related deaths. They then looked at the site of death and existing firearm legislation. The results: 25 types of firearm legislation are found across the 50 states. Of these laws, 9 were associated with a decrease in mortality, 9 with an increase in mortality, and 7 were equivocal. The 3 state laws with greatest evidence of statistically significant benefit are universal background checks to buy guns, universal background checks to buy ammunition, and ID requirements for buying firearms. The single law most likely to lead to an increase in violent deaths is “stand your ground” legislation. The authors of the study projected that if there were federal level implementation of universal background checks, gun-related deaths would fall from 10.35/100,000 to 4.46/100,000.

Now there are serious methodological problems with this study, as US newspapers were quick to point out: basically, it compares what was happening in various states before a particular law was enacted to what happened afterwards and assumes that any changes in gun violence were due to the law. But it’s entirely possible that there were other things going on in those states that led to the change in gun violence. In some cases, especially states where the law seemed to make matters worse, the changes that were occurring might have led to the decision to enact the legislation in the first place. But this kind of study is the best we have right now. And there’s a reason we don’t have anything better.

The reason we don’t have better studies on the effectiveness (or lack of effectiveness) of various gun control measures is that the CDC, and to a large extent, the NIH, are prevented from funding such studies. Thanks to the “Dickey Amendment,” passed by Congress in 1996, “none of the funds made available for injury prevention and control at the Centers for Disease Control and Prevention may be used to advocate [for] or promote gun control.” This clause effectively scared the CDC, which spends millions on studies of highway safety, from supporting any research on guns. And in 2011, the Dickey amendment was extended to the NIH.

Congress has made a few attempts to repeal the Dickey amendment as recently as in January, 2016, after the San Bernardino shootings. They went nowhere. The irony is that even the most rabid right-wing politicians and their supporters who want to shrink the federal government, in the most extreme cases eliminating Medicare, Medicaid, social security, and the income tax (the view of the Koch brothers, according to Jane Mayer’s book, Dark Money) believe that the one role the federal government is to protect its citizens from physical harm. 

If the federal government is to keep us safe, it has to know how best to achieve that end. Neither ideology nor common sense are the best guides to determining effectiveness. Research on how to reduce gun violence is essential—and it’s a geriatric issue.