Luck and Genes

My mother’s friend Lixie died last month. Eight months ago, her husband (my father) died. And just about exactly a year ago, my mother’s friend Walter died.

The three of them were all in their 90’s: Lixie died 6 weeks after turning 92; my father also died 6 weeks after turning 92; Walter died 6 weeks before he would have been 92. My mother, who still lives independently though she is not as vigorous as she was a few years ago, reached age 91 in December.

They had something else in common: all three were born in Germany or Austria in the 1920s and left thanks to the efforts of a group of Belgian Jewish women who sought to rescue Jewish children from an uncertain fate. The group of 93 children stayed in Brussels until the Germans invaded Belgium. They then made their way to unoccupied France, where they found refuge until 1942, when France no longer provided a safe haven for them. My parents escaped individually to Switzerland and eventually, well after the end of the war, made their way to the US. Lixie remained in hiding in France until the end of the war. Walter was one of the few teenagers to manage to immigrate to the US during the war. The story of the “Children of La Hille” is told by Walter in a book published shortly before his death; I tell parts of the story in my memoir about my parents, Once They Had a Country. 

Of the 93 children in the original group that made their way to Brussels, 82 survived the war.  And of those 82, many are living into their nineties. In addition to the four I mentioned above—my mother and the three who died within the past year—I know of another three who are alive and over ninety. There may be more. Surely this is more than one would expect in a cohort of people born in Europe in the mid-1920s.

Curious, I looked at what is known about the longevity of Jews who survived the trauma of 1939-1945 in Europe. And what I found was very interesting indeed. An article called Against All Odds found that survivors of “genocidal trauma” during World War II were likely to live longer than a comparable group not exposed to the same trauma.

The study looked at Israelis born in Poland who were between 4 and 20 years of age in 1939. They compared those who came to Israel before 1939 with those who arrived between 1945 and 1950, defining as "Holocaust survivors" anyone who spent the war years in Europe, regardless of whether they were in a concentration camp, hiding in a convent, or on the run. The justification for this broad definition is that in all cases, their lives were in extreme jeopardy. 

The authors of the study examined at the experience of 41,454 Holocaust survivors and 13,766 controls. What they found was that Holocaust survivors were on average likely to live 6.5 months longer than those who were not in Europe during World War II. This despite ample prior evidence that Jews who spent some or all of the war years in Europe had a high rate of post-traumatic stress disorder in later life.

What does this mean? It’s not certain what it means, but one possibility is that whatever factors led this high risk group to survive under adversity also led them to survive into old age. And since there’s no reason to believe that just because you were lucky once, you’ll be lucky again, I suspect that a key factor is genes. Those Jewish children who managed to survive the war, including the Children of La Hille (who, because of the assistance they received, faced better odds than their counterparts who were not part of this group), were better equipped to endure. That capacity continued to help them for the remainder of their lives.

This explanation is, of course, entirely speculative. It’s conceivable that the longevity of the Children of La Hille is simply due to chance. But I am telling this story because it is a reminder that much of the experience of aging is shaped to a large extent by factors beyond our control—by luck and genes. 

This doesn’t mean we shouldn’t try to improve our chances of survival by preventing whatever part of illness and disability is preventable. It doesn’t mean we shouldn’t do what we can by exercising and eating a good diet, by avoiding drugs and alcohol, and by controlling conditions such as high blood pressure. But let’s have the humility to remember that we have only a modest ability to determine our fate. All those who, unlike the Children of La Hille, don't have good luck and good genes, should nonetheless have access to the medical care, housing, and social services that allow them to have as good a quality of life as possible, however many years they live.

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To the Barricades!

On this weekend of the Women’s Marches—175,000 of us marched in Boston alone—it’s fitting to remember that aging is predominantly a women’s issue. Robert Butler, the founding father of contemporary geriatrics, made the point powerfully and persuasively in a short article in the New England Journal of Medicine in 1996, "On Behalf of Older Women—Another Reason to Protect Medicare and Medicaid." Sadly, the observations and concerns he raised 20 years ago are exactly the ones we face today as President Trump nominates Tom Price, foe of Medicare and Medicaid, to serve as head of the Department of Health and Human Services, and Paul Ryan, Speaker of the House, hopes to finally succeed in carrying out his long-standing goal of privatizing Medicare.

Butler begins by saying that old age is a territory populated largely by women.” Updating the data he presents: life-expectancy at age 65 is 17.9 years for men and 20.5 years for women, which means that women typically outlive men by at least 2.5 years. Since death rates are higher for men throughout much of the lifecycle, this means there are currently 25.1 million older women in the US, compared to only 19.6 older men. The ratio of men to women falls with age: in the 65-74 year old bracket, there are 86.9 men for every 100 women; among those over age 85, there are only 48.3 men for every 100 women.

Butler continues: “Proposals to curtail Medicare and Medicaid, if enacted, could leave beneficiaries, the majority of whom are women, paying more out of pocket for what may be less medical care.” He reminds us that the concern about Medicare and Medicaid have arisen “because political leaders want to balance the federal budget…while giving some Americans a tax cut,” not because of concern about quality of care. His words could have been written today instead of 20 years ago. And alas, older women are apt to live in poverty today, just as was the case when Butler wrote: the median income of older people in 2013 was $29,327 for men—but only $16,301 for women. Put differently, 6.6 percent of older men live below the poverty line, compared to 11 percent of women.

The theme of aging as a women’s issue was picked up by acerbic social commentator Susan Jacoby in her 2011 book, Never Say Die: the Myth and Marketing of Old Age. She points out that the household income of women is cut in half when their husbands die. Unequal pay for equal work has a cumulative effect: pensions are lower for women. Women who take time out of work to raise a family are rarely able to compensate for the loss of wages, seniority, and missed promotions. Because women typically live longer than men, they are more likely to become frail, to develop dementia, and to be widowed. As a result, fully two-thirds of nursing home residents are female. And the issues that affect older women in general affect older women of color in spades.

As we pressure the government to preserve reproductive health rights, to institute equal pay for equal work, and to enforce laws that prohibit discrimination based on sexual orientation, we should also pressure government to maintain and improve health care for older women. That means protecting Medicare and Medicaid, subsidizing supportive housing, and assisting family caregivers--at last report, there were 34.2 million Americans providing unpaid care for an adult over age 50 and two-thirds of these caregivers were themselves over 65. So to the barricades!

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Now Hear This

Kaiser Health News—which by the way has some of the most interesting and important articles relevant to the older population in its “aging” section, and additional interesting and important articles in its “Medicare” section—ran an encouraging piece this week about hearing aids. I blogged about hearing aids almost exactly a year ago, when the President’s Council of Advisors on Science and Technology (PCAST) issued a report recommending, among other approaches, deregulating over the counter hearing aids. It looks as though this may actually become a reality.

The concern, as with OTC medications, is that the products available without a prescription will be ineffective, if effective that they will be misused, and if misused that they will lead to the substitution of bad technology for good technology. But the smart phone, smart machine era has ushered in the possibility that people could select a high quality device for themselves without a physician or audiologist as an intermediary. It may soon be possible to connect a device inconspicuously inserted into the ear to a tablet, smart phone, or television. The device may communicate directly with a digital assistant such as Siri or Alexa. And consumers may be able to test their own hearing and determine just what kind of device would serve them best using a cell phone app or online program.

There’s much yet to figure out as the boundary between personal sound amplification devices (unregulated) and hearing aids (regulated) becomes increasingly fuzzy. Standards governing their design are in the works. But Senators Charles Grassley (R) and Elizabeth Warren (D) are planning to introduce a bill soon that would allow the sale of OTC devices. How very fitting: a bipartisan effort to allow us to hear each other better.

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Growth and Transcendence?

In 2003, I decided to branch out from geriatrics and try something new. Well, a little new. I recreated myself as a palliative care physician. I’d previously been a bit dubious about palliative care, which in its early days focused principally on people with cancer and almost exclusively on people who were imminently dying. My interest was in people who were in the last phase of life, whether that phase would last days, months, or even years. My patients at Hebrew Rehab Center, where I had worked for the previous eleven years, had an average age of 88. They all had major limitations in their ability to function independently, otherwise they wouldn’t have been living at Hebrew Rehab: either significant physical problems or, a large proportion of cases, cognitive dysfunction, or both. I had come to realize that many if not all of them stood to benefit from a palliative approach to medical care. So why not embrace palliative care as a specialty, focusing principally on very old people, but also expanding my horizons to include younger individuals?

Palliative care was a good fit for me. I came to see the field as built on three legs: advance care planning (some people include communication here), psychosocial support, and symptom management. It is an interdisciplinary field and its focus is on supporting patients and their families through a difficult period of their lives. Much of the work involves making sure people understand their condition and what they are facing so they can make realistic and wise decisions about the treatments they receive as well as about where and how they live. Many of my colleagues shied away from such discussions; I thrived on them, feeling I could help assure that patients got the kind of care that made sense for them as they approached the end of their lives. Often, I rescued them from needlessly burdensome and ultimately futile medical interventions. There was, however, one strand of palliative care that disturbed me.

What bothered me was the tendency to exalt dying, to see dying as an opportunity for growth and transcendence. Now, not all palliative care physicians, hospice nurses, and other professionals are afflicted by this tendency, but for some it was kind of a religion. The business of palliative care, in this view, is to promote spiritual growth. And by implication, patients who don’t find dying uplifting, who aren’t able to reach new heights or discover new aspects of themselves, are failures.

I confess that I’ve never been enthusiastic about the American psychologist, Abraham Maslow, with his five (later nine) stages, culminating in “self-actualization,” or the experience of  “self-fulfillment” manifested by “peak growth experiences.” I’m even less enthusiastic about applying this model to people approaching the end of life.  Dying, and even living the last six or twelve or twenty-four months of life, is often a messy business. It seems to me to be good enough to be physically and emotionally reasonably comfortable. That’s hard enough to achieve. Ideally, it involves attaining a certain level of inner peace, of acceptance of the life one has led. But growth experiences? Euphoria? Joy? Wonder? That seems a bit much. So I was pleased to read the article in the Sunday NY Times about B.J. Miller, a palliative care physician who is a triple amputee and who until recently served as executive director of the “quirky” Zen Hospice Project in San Francisco.

Miller is by all accounts a remarkable doctor and human being. He is charismatic. He is intense. He has the capacity to truly “be” with people and help them come to terms with their condition and their lives. His story, well told by journalist Jon Mooallem, is inspiring. But he isn’t big on transcendence. In his own words, palliative care in general and Zen Hospice in particular aren’t about our need for death to be a hypertranscendent experience: “Most people aren’t having these transformative deathbed moments. And if you hold that out as a goal, they’re just going to feel like they’re failing.” Instead, the name of the game is to allow those who are dying and the people who love them to “live a succession of relatively ordinary, relatively satisfying present moments together.” Now that’s a philosophy that makes sense.

What the New Year Will Bring

I’ve been searching for something upbeat to say about health care for older people in 2017. It’s been difficult to find anything newsworthy. The best I could come up with was that the direst predictions might not come to pass. Speaker of the House Paul Ryan says he wants to privatize Medicare by instituting “premium support,” which means giving people fixed amounts of money to buy health insurance on the private market instead of using government-run Medicare. But he might not get his way; after all, there are 46 million older people on Medicare and they like their program. Assurances that any changes won’t go into effect for several years may not be good enough. The nomination of Georgia Representative Tom Price to serve as head of the Centers for Medicare and Medicaid Services strongly suggests there will be a push toward substituting block grants for the federal Medicaid program, which would mean large cuts to Medicaid in many states. It might not happen; there are roughly 6 million older people who are dually eligible—they qualify for both Medicare and Medicaid, and they survive thanks to the current arrangement.  And then there’s the vaunted repeal of the Affordable Care Act, which might mean axing the Center for Medicare and Medicaid Innovation, an institute that has been testing strategies to improve quality and save money, as well as PCORI, the Patient Centered Outcomes Research Institute, a major source of grants for studies of innovative health care programs. Congress might leave those parts of the ACA intact, but CMMI was budgeted $10 billion for the period 2010-2019, of which about $3.5 billion remains. This money looks to me to be ripe for cutting by an administration that touts ideology as the basis for decision-making, not science. But surely there must be something uplifting to say about the new year. Judith Graham of Kaiser Health News suggests there is.

Beginning in January, 2017, Medicare will introduce new rules that offer incentives for physicians to change the way they care for the sickest, most vulnerable older patients, those with multiple serious chronic conditions, those with dementia, and those suffering from mental illness, especially depression. Medicare is changing its reimbursement system for “complex chronic care management.” Basically, it will pay more for coordination of care and require jumping through fewer hoops to get the extra payments. Medicare is also going to be more generous in paying for comprehensive dementia assessment—if physicians follow a number of rules. They have to assess their patient’s ability to perform activities of daily living, they have to evaluate behavioral symptoms, they need to review medications, and they need to use standardized tests for assessing cognition. Finally, they will have to elicit the patient’s goals and values and determine the caregiver’s knowledge and resources to develop a care plan for the patient—including plans for what to do when the patient becomes acutely ill. Medicare will offer an incentive for primary care doctors and behavioral health specialists to work together to deliver effective care for older patients with mental illness. Finally, Medicare will recognize that taking care of elderly patients involves more than classic “visits” consisting of a doctor sitting opposite a patient, taking a history, doing a physical exam, and prescribing tests or treatment: it entails such activities as talking to family members and reaching out to community service providers. Recognizing the value of physician work that doesn’t involve face time with patients means reimbursing physicians for their time and that’s exactly what Medicare will initiate.

These are all good developments. Physicians do need to coordinate complex chronic disease management and they ought to properly assess patients with cognitive impairment and develop an advance care plan for them. Similarly, they have to be able to spend time working with families, caregivers, and other professionals to do a good job for their oldest patients. But whether tweaking the fee-for-service system to achieve these ends will work is another question. What we know works are special programs for eligible patients, programs such as GRACE (Geriatric Resources for the Assessment and Care of Elders) or PACE (Program of All Inclusive Care for the Elderly) or Guided Care. These are comprehensive programs with a dedicated staff of physicians, social workers, nurse practitioners, and others who already provide complex care management,  who already know how to evaluate memory, and who often work with behavioral health as well as caregivers. Whether encouraging primary care doctors to adopt these approaches simply by offering to pay extra for incorporating these strategies into routine practice will be equally effective is far from clear. But it might be a step in the right direction. And if there’s money available to measure whether it works or not, we might actually find out.