The Three Questions

The NY Times Magazine recently featured a thought-provoking article about choosing to die. Writing with compassion and sensitivity, Robin Marantz Henig describes the 5-year saga of Brooke Hopkins, who at 66 had a terrible bicycle accident that left him paralyzed and partially dependent on a ventilator for breathing. He had written a living will indicating under what circumstances he would not want life-sustaining treatment. He also happened to be married to Peggy Battin, a philosophy professor well-known for her writing about the right to die. The article focuses on how Hopkins has been able to find meaning in life despite his disability and how his goals and preferences for care shifted dramatically, sometimes day to day. It rightly draws attention to the importance of deciding how to live, not just how to die.

I would go further. Declining a medical intervention usually has nothing to do with “deciding to die.” When patients decide to forgo a particular treatment, it’s rarely because they are in a “state worse than death.” The vast majority of people facing choices about medical care want to live—but that doesn’t mean they would undergo any and all possible medical treatments. Rather, and this is all too seldom discussed, we need to ask 3 questions when we make decisions about medical care. How much pain and suffering will I have with the proposed treatment? How likely is it to succeed? And in the best case, where it succeeds, how much longer can I expect to live? 

The extremes are pretty easy. If the treatment is totally innocuous, most people would want it, even if it isn't very likely to work and even if the patient is very elderly. If it's painful (and by painful I also mean that it induces confusion or requires a long period of rehabilitation or results in dependency) and probably won't work anyway and the patient is at the very end of life, most people wouldn't want it. The more difficult situations are in between. Suppose it's painful but has a good chance of success, many though not all people would want it. Suppose it’s painful and the odds of success are small but the patient is 25 years old, many people would opt for the treatment.  Not everyone will make the same choice: some people are more risk averse than others; people do not share the same values. But we need to start by asking the same basic questions.

Thinking Clearly About Thinking Poorly

Every Sunday morning, I do the NY Times crossword puzzle. I also do the KenKen puzzles in the daily Times, and sometimes I throw in a Sudoku for good measure. But I don’t do the puzzles to keep my mind sharp— I do puzzles because I enjoy them. A recent consensus conference convened by the National Institutes of Health found that there is no persuasive evidence that any intervention, whether mind exercises or physical exercise or anything else, can prevent dementia. A pair of new studies in the British journal, the Lancet, however, argue that the prevalence of dementia in two western European countries has fallen substantially.  What are we to make of these findings and what are the implications for each of us?

The British study measured the frequency of dementia in people over age 65 in 3 geographic areas of England in 1989-1994 and then repeated the measurements using the same questions in 2008-2011. What they found is that the prevalence of dementia in people over 65 fell from 8.3% to 6.5%—a 25% drop.

The Danish study examined both the rate of cognitive and of physical functioning in the oldest old, those 90 and up. First they studied a group of 93-year-olds, all of whom were born in 1905. Then they studied a group of 95-year-olds, all born in 1915. Despite the fact that the second group were 2 years older, 33% of them had normal scores on mental status testing, compared to 13% of the earlier cohort. The second group also did better in terms of their daily functioning (walking, bathing, feeding themselves) although formal measures of physical performance (strength, walking speeding) were the same for both groups.

A fall in the rate of dementia is certainly very encouraging. An editorial accompanying the British study concluded that lifestyle changes, such as better diet, more exercise, and less smoking, were most likely to account for the change. An editorial accompanying the Danish study concluded that changes in nutrition, exercise, and smoking behavior were very unlikely to be the explanation and suggested instead that intellectual stimulation was probably responsible for the improvement. How can they both be right?

It’s conceivable that there are different explanations for falling dementia rates in the general elderly population and in nonagenarians. It’s possible that Danes are different from Britons. More plausibly, we just don’t know what accounts for the observed decline in dementia, but it is probably related to multiple factors and not to one unique factor.

Probably the greatest medical triumph of all time is the germ theory of disease. The discovery that particular microorganisms cause specific diseases led to the discovery of antibiotics that kill bacteria—and cure disease. Penicillin and the many antibiotics discovered since have been a terrific boon to humankind, leading to the treatment of pneumonia, tuberculosis, typhoid fever, and countless other scourges. But in geriatrics, finding a single fix for the many complex conditions that afflict older people has proven far more challenging. One of the most important insights of the last few decades has been that preventing falls or confusion or other “geriatric syndromes” requires a multi-pronged approach. Whenever we look for the One Big Intervention that will do the job, we fail. Older people fall less often if their cataracts are removed and they wear shoes with good supports and they stop medications that make them faint or dizzy. Older people get confused less often while hospitalized if they don’t take sleeping pills and they talk about current events.

Today, the best strategy for staving off dementia is eating well and exercising and remaining socially engaged and doing crossword puzzles. Even before the discovery of antibiotics, improvements in sanitation and nutrition led to a steep decline in the prevalence of infectious diseases. Maybe it’s time to adopt an analogous strategy with dementia, living a generally healthier life and hoping it will somehow keep our minds functioning. We should recognize, however, that this approach will at best have a modest impact on the overall prevalence of the disease. After all, it’s great that only 33% of 95-year old Danes have normal cognition but that means 67% don’t have normal cognition. It’s terrific that the rate of dementia has fallen 25% among British people over 65, but 6.5% of them still have the diagnosis. Maybe one day we will find the magic bullet that can prevent dementia, but that day is a long way off.

Is Patient-Centered Care an Oxymoron?

Patient-centered care is the new buzzword in medical and health policy circles today. Choosing which of several possible treatments to use is supposed to be based on "shared decision-making." Treating chronic disease ought to involve patients in "self-management." Patients should be cared for in a "medical home." All these innovations are designed to put the patient at the center of the health care system. They are associated with better quality and lower costs than the more traditional physician-centered, paternalistic approach to care. 

But they leave frail older people out in the cold.

Patient-centered care can work for older people with multiple chronic conditions or advanced illness only if it incorporates their caregivers. Between one-third and one-half of all people over age 85 have some degree of dementia limiting their ability for self-care. Even people whose minds work fine when they are well often develop delirium, or acute confusion, when they get sick. And those who are cognitively intact often have trouble with vision or mobility or hearing, which gets in the way of their taking full control of their own health care. If physicians and health care institutions are serious about bringing the benefits of patient-centered care to the oldest and most vulnerable patients, they must involve caregivers in all phases of medical care. That's what I argued in an essay in JAMA this week.

Caregivers need to understand the patient's underlying health status--not just how long they are likely to live, although that is important, but also what bumps they are likely to encounter along the way. They need to participate in the critically important process of defining and prioritizing the patient's goals of care because those goals will shape the approach to treatment that is right for the patient. Caregivers need to help design the plan of care--figuring how best to translate the goals into practice when the patient becomes acutely ill, as all frail people will.

Currently, over 80 million Americans serve as caregivers for adults. Many of them are responsible for pretty complicated medical tasks, whether administering multiple medications (sometimes as many as 15 or 20 a day, all of which come with potential side effects) or changing dressings on open wounds or operating technological equipment such as dialysis machines or feeding tubes. Only when physicians actively integrate caregivers into the treatment of frail older patients will those patients be able to enjoy the fruits of patient-centered care. 

Doctors need to make the radical switch from individualistic, autonomy-driven care to family-centered care. Changing deeply ingrained behavior is hard. But physicians need to understand that they, along with patients, stand to gain from the change. Patient-centered care is essential to achieving the outcomes that are good for patients--and on which doctors will increasingly be judged.

The One-Hoss Shay

Oliver Sacks turned 80 last week. The noted neurologist and raconteur wrote an inspiring piece in the NY Times in honor of the occasion, in which he says he looks forward to being an octogenarian. He recognizes that he has a fresh perspective by virtue of his experience—he is what used to be called a “wise old man,” before such a phrase became politically incorrect. His hope is to have a few more years doing what he says matters most, loving and working, and then to die “in harness,” or “fully engaged” with life. In other words, he is hoping to be like the remarkable buggy that was constructed so well that it didn’t fall apart for 100 years, immortalized by Oliver Wendell Holmes (who like Sacks was a physician and a writer) in 1900:

      Have you heard of the wonderful one-hoss shay,
      That was built in such a logical way
      It ran a hundred years to a day,
      And then all of a sudden it—ah, but stay,
      I’ll tell you what happened without delay…

And many verses and decades later:

      There are traces of age in the one-hoss shay,
      A general flavor of mild decay,
      But nothing local, as one may say.

But then, after 100 years:

      What do you think the parson found,
      When he got up and stared around?
      The poor old chaise in a heap or mound,
      As if it had been to the mill and ground!
      You see, of course, if you’re not a dunce,
      How it went to pieces all at once,
      All at once, and nothing first,
      Just as bubbles do when they burst.

Of course, when the buggy fell apart, it did so in entirety—taking the deacon who was riding it down as well. Given no warning that the buggy was about to collapse, the deacon could not protect himself. But for people, living long and well and to the fullest, and then dying all at once, as Oliver Sacks hopes his fate will be, seems like the best alternative. The question is, how often does that wish come true?

Over 30 years ago, James Fries predicted that we would see the “compression of morbidity,” or a progressive shortening of the time between the development of age-related disability and death. In a recent review, Fries offered evidence that this is exactly what has happened, with modest increases in life expectancy between 1982 and the present along with a significant decline in rates of disability. Others disagree, arguing that people are living longer than they used to and are spending those added years frail and debilitated. 

The crucial issue is what we can anticipate today when we reach 80, not whether or by how much matters have improved. And the current reality, according to Medicare data, is that 54% of people over 85 have at least 4 chronic diseases and 25% have more than 6. Not only do the oldest individuals have many diseases, but these illnesses translate into problems walking and dressing and bathing: 56% of people over 80 report a severe disability. 

Chronic illness and disability are thus the norm for octogenarians, at least by the time they reach 85. Remaining vigorous and then dying quickly is simply not the reality for many older individuals. This does not mean that they cannot live life to the fullest, but it does mean that for the majority of octogenarians to stay engaged with life, we need to find ways to enable them to derive meaning from their existence. We have to take steps to assure that they can maintain and nourish relationships with others, whether by enhancing transportation to enable them to overcome difficulties with mobility or by teaching computer skills to allow them to communicate remotely. We have to facilitate their desire to contribute to society, whether through part time, flexible employment opportunities or by creating oral history projects in which they can participate. 

Designing medical interventions that allow us to remain robust into old age and then die of sudden death may be as flawed a quest as creating Holmes's perfect buggy. It may be as replete with unintended consequences as striving for immortality (more about the perils of aiming for immortality in a later post). Our challenge as a society is to find ways to support older people in their quest for meaning--even if they are not built like the one-hoss shay. 

    

Honor Thy Mother and Father

The Japanese have the right idea. Their Prime Minister recently announced his government would invest in the development of “nursing care robots” that help older people with everyday tasks. With just over 20% of its people over age 65, Japan has the largest proportion of elders of any country in the world--the corresponding number for the US is 12%, but we can expect to reach the 20% level by 2030. The Japanese also live longer than other peoples: at birth, life expectancy is 84 years (compared to 79 in the US) and at age 60, life expectancy is 26 years (compared to 23 in the US). But in Japan, the “old age dependency ratio,” or the number of older people as a share of those of working age, is a stunning 39, compared to 21 in the US (for anyone wondering how these numbers could possibly be 39 and 21, the actual formula used is the number of people 65 and older divided by the number of people age 20-64, times 100). That means there simply aren’t enough caregivers for the burgeoning elderly population—hence the interest in robots.

America is catching up quickly. If we don’t find creative ways to help older people who have problems with basic needs such as going to the bathroom and eating and dressing, we are headed for trouble. A report just released by the Congressional Budget Office (CBO) finds that already now, “informal caregivers,” a euphemism for unpaid friends and relatives, account for over half the total economic value of care provided to elders, or an impressive $234 billion per year. Caregivers for the oldest and frailest elders spend an average of nearly 10 hours a day providing personal help.

The CBO presents a stark statistical portrait of contemporary reality and it also projects our future needs. To reflect the uncertainty involved in these predictions, it gives high, medium, and low estimates of caregiving needs between now and 2050. If the rate of impairment in elders is the same in 2050 as it is today, then we will need to double the number of caregivers from 4% of all non-elderly adults to 10%. In the most optimistic projection, in which older people are less likely to need help with their daily activities than they are today, demand for caregivers will result in 7% of all non-elderly adults serving this role by 2050 because of the growth of the elderly population. And in the event that the rate of impairment actually rises, an all too plausible scenario in light of the obesity epidemic, which predisposes to chronic diseases such as arthritis and diabetes, the need for caregivers will result in 11% of all non-elderly adults serving this function in 2050.

The CBO numbers tell us something we don’t want to hear or  we think is of little consequence—the report was not even picked up by the NY Times, the Washington Post, or the Wall Street Journal. But taking steps now can help the elderly and their caregivers today and can stave off disaster tomorrow. The Japanese model is a good place to begin: they have already invested in robots that track older people with dementia who tend to get lost, robots that aid mobility, and soft, furry, animal-like robots that are used to treat depression. Exciting research is also going on to a limited extent in the US at MIT’s AgeLab (which has developed a high tech wheelchair that navigates by voice commands), at the University of Southern California Center on Robotics (which has a robot that acts as a sort of physical therapy aide, supervising exercise programs), and at Carnegie Mellon’s Quality of Life Technology Center (which made HERB, the “Home Exploring Robotic Butler” to facilitate keeping the disabled and the elderly independent).

Technology will not solve all our caregiving needs. We will still need real people to provide companionship, to make complex medical decisions, and to plan for the future. But robots are valuable adjuncts that can do some of the mind-numbing as well as the back-breaking work that humans do today. It will take more young people studying robotics, more government investment in research, and more companies producing technological innovations to compensate for the problems older people face.

Approaching the Endgame

At age 94, one of the giants of our era is reportedly dying. Nelson Mandela has been hospitalized with pneumonia for the last 3 weeks, his fourth hospitalization in less than a year. Like all patients, Mr. Mandela deserves privacy and dignity as his life draws to a close. But whenever a public figure is desperately ill, the choices he or she makes about medical treatment provide an opportunity for us to reflect on the approach to care we would want in the final stage of life.

What is striking about  the many media accounts of his situation that I have seen is that none have made reference to hospice as a possible approach to care. The widespread assumption appears to be that hospital treatment is the only possible course and that every effort will be made to prolong life with technological means, regardless of how burdensome, ineffective and ultimately futile such treatment might be. Hospice care, by contrast, seeks to relieve suffering and to focus on maintaining quality of life as long as possible, often in the  home.

When Jacqueline Kennedy Onassis died in 1994, she made the explicit decision to leave the hospital and die at home. She had reached the point in her treatment for non-Hodgkin's lymphoma, a cancer of the lymph nodes, where she felt that further possibly life-prolonging medical treatment would cause more harm than good. She declined antibiotics for pneumonia, a complication of her cancer, and died at home, surrounded by the family, friends, and books she loved. The choice made by this intensely private but very well-known icon showed millions of Americans that it was feasible to die gracefully at home.

When Pope John Paul II died in 2005, he was also cared for in his personal residence, though with physicians and nurses in attendance. At age 84, he suffered from advanced Parkinson's disease and developed an overwhelming infection, as often happens in the final phase of Parkinson's. The Pope continued to receive some potentially curative medical interventions until the end, consistent with his personal beliefs, but he was not put on a breathing machine as his respiratory status deteriorated, he did not get dialysis when his kidneys failed, and he did not have a permanent feeding tube for artificial nutrition. The Pope's care illustrated the encyclical he had issued earlier, stating that "when death is imminent and inevitable," patients can refuse treatment that "would only serve a precarious and burdensome prolongation of life."

Life is precious. We do not want to die. We do not want to lose those we love. We do not want to say goodbye to someone as revered as Nelson Mandela.  And choosing how much and what kind of medical care to receive near the end of life is a very personal decision, with religious beliefs, cultural factors, and personal preferences all influencing people's choices. But we are all mortal.  The illness of this great man should stimulate us each to think about the approach to care we want as life draws to a close--and to write down our thoughts in an advance directive and tell our families and physicians.