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.