Longevity and Long-Term Care: The Medical Crisis of the 21st Century : Part 2

Throughout the 20th century, most Americans saw “longevity” as a goal. If we took care of our bodies, we reasoned, we could “live longer and better.”

But in the 21st century, I suspect that some of us will learn to fear “longevity” the way we now fear cancer.

This is the second in a series of posts that will explore the anguish that some experience when they live into their late eighties and nineties–and how we, as a society, can address the hardships of “old, old age.”

                                           Senile Dementia   

Thanks to better diets, exercise, and advances in medical knowledge, more and more of us are living to four score and seven. But the downside is that in too many cases, our bodies are out-living our minds. As I note in the post below, since 2011, 40% of the increase in Medicare’s outlays can be attributed to spending on Alzheimer’s patients.

Why is the incidence of Alzheimer’s (AHD) spiraling? Because we are less likely to die of heart disease or strokes, millions of Americans are living long enough to be diagnosed with senile dementia. One could say that longevity is the proximate cause of Alzheimer’s.

Because women live longer than men, they are more likely to fall victim to AHD, the most common form of dementia. If a woman lives into her 60s her risk of being diagnosed with Alzheimer’s at some point over the rest of her life is 1 in 6. By contrast, for breast cancer, her risk is 1 in 13.  By 2050, the number of people age 65 and older suffering from Alzheimer’s may well triple, rising from 5 million to as many as 16 million.

Why then don’t we hear more about this scourge? Because at this point there is little or nothing that doctors can do to stop it. The Mayo Clinic’ website explains: while some drugs can “temporarily improve symptoms of memory loss and problems with thinking and reasoning . . .  these treatments don’t stop the underlying decline and death of brain cells. As more cells die, Alzheimer’s continues to progress.”

Last month Consumer Reports warned that “the overall results” for Alzheimer’s drugs “are far less encouraging than the ads portray. Most people who take them don’t experience a meaningful benefit.

More than half experience side effects. And they’re expensive, costing anywhere from $140 to more than $656 monthly..

Even a small benefit or chance of improvement might be worth it if Alzheimer’s drugs were risk free,” Consumer Reports observed. “But they are not. They can cause side effects such as insomnia, nausea, muscle cramps, diarrhea, and reduced appetite, all of which can be troublesome for people with dementia.” Occasionally, the drugs may cause more serious side effects such as internal bleeding and a slowed heart rate that could be potentially dangerous.

Meanwhile, the average Alzheimer’s patient lives 8 years—and 40% of those years are spent enduring the most severe, late stages of that disease. Some patients linger for 20 years. This is what makes Alzheimer’s so expensive.

                                The Need for Long-Term Care

At this point, we cannot cure senile dementia, but we can reduce the suffering that patients and their families endure by creating the long-term palliative care system that millions of baby-boomers and many of their parents will need. First, this means figuring out how to fund such a system. Medicare pays for some treatments, but it does not cover long-term care.

Up until now relatives have provided much of that care at home, but increasingly, the burden is becoming too great for aging spouses. And even if their children live close to home, daughters as well as sons have jobs that they cannot leave.

Medicaid will pay for nursing home care, but only after the patient and spouse spend down nearly all of their resources. (New laws now make it very difficult families to transfer assets to heirs when they see Alzheimer’s coming.) And even when families exhaust their assets, nursing homes and hospices often do not provide the combination of palliative care and skilled nursing that patients require.

Finally, and most importantly, we need to think about how to ease the path to death. Here, I am not talking about euthanasia. (In a later post, I will address  “aid in dying” –a.k.a. “physician-assisted suicide”–and explain why some palliative care specialists have had second thoughts about that solution.)

In this post, I am focusing on reducing the fear, the panic, the overtreatment, and the medical flailing about that makes what I have called “the American way of dying” so traumatic. Death always will involve loss and suffering, but it does not have to be impossibly cruel, and it does not have to wreck families.
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Breast Cancer: Catching Up With Amy Berman, a Woman Who Chose Life Over Longevity

HealthBeat readers may remember the two-part post that I wrote about Amy Berman back in October of 2011.

Part 1 began:  “When Amy Berman was diagnosed with Stage IV breast cancer a year ago, she made a courageous choice. Instead of fleeing death, she decided to pursue life.  Rejecting chemotherapy, radiation and surgery, she chose palliative care instead.” 

                                   Our War on Cancer

Berman knew that her stage IV cancer could not be cured. As a nurse, she also knew what women who undergo aggressive treatment endure—and that, despite that treatment, many will never escape the disease.

As Clifton Leaf points out in his new book The Truth in Small Doses, when people talk about the strides that we have has  made in our War On Cancer, they greatly exaggerate our success. When it comes to breast cancer, for example, 30 years after we launched the way, the number of women per 100,000 who die of breast cancer had actually grown from 28.4 per 100,000 in 1970 to 29.2 per 100,000 in 2000.

Over the next 10 years, the death rate fell to 26.2 per 100,000 women. But we know that this was mainly because we have gotten better at detecting breast cancer early, when the tumors are small and easily removed.  By contrast, most of the caustic drugs designed to defeat cancer have disappointed.

Of  “the myriad compounds that have set the research community abuzz, the ones that have already built up billions of sales,” Leaf observes, “there is little evidence” that “they have had more than a modest effect on long-term patient outcomes. Taken together, this multitude of drugs has been responsible for about a quarter of the reduction seen in the standardized death rate.”

Granted five-year-survival rates have improved. But this, too, is largely because we are diagnosing cancer earlier.  In the past, if the disease was detected when a woman was 65 and she died at 67, we would say she died of cancer. Today, if a tumor is detected when she is 62, and she lives a few months past 67, she has made it to the five-year mark and is counted as a “survivor.”  Thus Elizabeth Edwards’ name was added to the roll of victories–even though breast cancer killed her.

By measuring our progress in terms of five-year-survival rates we “transform nearly six hundred thousand annual deaths into a victory-in progress,” Leaf notes. This allows us to hide from what he calls “an unshakable reality: the rising toll from cancer is plain to see, but this method of counting is so firmly established and so commonly used by health care researchers and policymakers, that few remember anymore that it’s a statistical sleight of hand.”

Even If She Could Not Be Cured, Why Didn’t Berman Try to Buy More Time?

After she was diagnosed, Berman secured an appointment a pre-eminent researcher/clinician in the field of inflammatory breast cancer.

He was clear about what she should do: Chemo, radiation and a mastectomy, followed by more chemo. This he told her, is “what I recommend for all of my patients.”

In part 2 of my 2011 post, I quoted her memory of that conversation:

“I pressed him, ‘Why do the mastectomy?’ I asked, puzzled. ‘The cancer has already spread to my spine. You can’t remove it.’

“His brow furrowed: ‘Well, you don’t want to look at the cancer, do you?’

“He made it sound like cosmetic surgery,” she recalled. “Considering that a total mastectomy includes months of pain and rehabilitation, I thought that worrying about the view was secondary.”

She continued to press him.

“But what about the side effects of radiation?’ I asked. ‘I’ve heard they are terrible’.

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