Monthly Archives: May 2014

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

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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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A Patient’s Story–How Much Can or Should– Your Doctor Tell You About Potential Risks?

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Below a non-fiction story from Pulse: Voices from the Heart of Medicine, “an online magazine of personal experience in health.”  Pulse is both a magazine and an online community that provides a chance for patients, doctors, nurses, social workers to come together, and share their experiences.

The magazine’s founders write: “Despite the large numbers of health magazines and medical journals, few openly describe the emotional and practical realties of health care. We at Pulse believe that our stories and poems have the power to bring us together and promote compassionate health care. “   Pulse was launched by the Department of Family and Social Medicine at Albert Einstein College of Medicine/Montefiore Medical Center in the Bronx, New York, with help from colleagues and friends around the state and around the country (Subscriptions are free: You will find the home page here.

At the end of the story, see my note, asking HealthBeat readers: “What Do You Think: Should the patient have sued the doctor?” Would she even have a case?

                                                    Collateral Damage

By Brenda Scearcy

Dr. Robert’s office felt right to me, with a musical birdsong soundtrack, soft lighting and fresh green tea, and I had my best friend in tow: piece of cake. In this serene atmosphere, I was sure that I’d find out what to do next to finish treating my endometrial cancer.

It’s probably gone now, since my hysterectomy two weeks back, I thought. But let’s play it safe; he’s the gynecological-cancer guru.

Like a general gearing up for combat, Dr. Robert said, “We can beat this. We’ll do a second surgery to remove lymph nodes and omentum–robotically, of course, so your recovery time will be quick. Down the road we’ll definitely do radiation and chemo, and your odds of recurrence will go way down.”

That tone. So assured…

“What’s an omentum?” I asked hesitantly.

“A slab of belly fat deep in the abdomen that can trap cancer cells; we usually recommend its removal if the cancer nearby is aggressive.”

“Side effects?” I asked.

“Not much to speak of. In rare cases, you get a slightly draggy foot from nerve damage.”

My whole psyche was dragging its feet. Did I need this, just after coming through a highly successful surgery?

A month before, I’d sought treatment for a garden-variety fibroid. My primary ob/gyn, Dr. Ann, had offered to remove the fibroid laparoscopically. Beforehand, as part of her usual pre-surgical procedure, she sent a tiny chunk to the lab for a cancer check.

Bingo.

A cancerous fibroid is a whole different ballgame, so Dr. Ann and I went to Plan B–a full hysterectomy and ovary removal.

Immediately after the surgery, Dr. Ann cradled my head in her sweet-smelling arm and whispered affirmations to me, cheek to cheek. Although everything else is erased by anesthesia, I clearly remember the feel of her skin and how fervently she whispered, “You’ll even want to eat–salmon!”

I did heal like a champ, wowed by blissful, oxycodone-induced hallucinations and by seeing my teenage daughter mature as she stepped into her new role as pants-puller-upper.

Call me a flake, but I believed that Dr. Ann’s surgery had removed the cancer. During waking hours, I couldn’t drum up any sincere worry. (But I did have nightly “mares,” always the same: a terrifying man breaking into my house, and I a throttled screamer. On a subconscious level, my fears about cancer were in overdrive.)

My first post-op visit with Dr. Ann, a few days after the surgery, was tremendously reassuring. She showed me the lurid photos she’d taken of my cancerous uterine fibroid, backlit and glowing ruby-red, so I’d finally see my torturer. (I still have a wallet-size photo.) We laughed–hard, which I don’t recommend after abdominal surgery.

Then she went over the lab results with me. The cancer was grade one (not aggressive) and had been relatively contained, with just one other spot on one of the removed ovaries. Dr. Ann told me that this spot was a bit of misplaced endometrial tissue that had sprouted a tumor. It was not ovarian cancer, which is often more aggressive. Welcome news. She poured her heart into reassurances.

But still. “There are other treatments, like lymphectomy, chemo or radiation, that I want you to consider,” she said. A recent cancer survivor herself, she wanted to make sure that I stayed in touch with my inner warrior. She sent me to Dr. Robert.

And Dr. Robert insisted that lymphectomy/omentectomy was the least I should do. According to him, chemo and radiation were necessary insurance against the Big C.

He described the omentum as having little purpose and regaled me with stories of women who were vacuuming the house eighteen hours after their surgeries.

I’d studied ecology in grad school; its principles guide every part of my life. I know that everything is interrelated, and that when you do one thing, it can affect other things in surprising ways. But I wanted to believe that the cancer was behind me.

Also, I was foggy-headed, suffering from cold-turkey estrogen withdrawal after the hysterectomy. So my antennae weren’t up, and my energy for fact-checking Dr. Robert’s claims was nonexistent. And then there were those nightmares….

Ultimately, it came down to this: Dr. Ann recommended that I take Dr. Robert’s advice. He was the expert. Hoping that lymphectomy would seal the deal, I had the surgery.

The immediate after-effects:

(1) Excruciating shoulder pain, referred from my diaphragm, from gas injected during surgery.

(2) Lymphedema, a build-up of fluid caused by lymph-vessel blockage. Within two days, I looked like a sumo wrestler, with lymph pooling around my middle. No clothes fit.

(3) A walnut-sized pocket of lymph in my right belly. One night at supper, my shirt suddenly grew wet as lymph spurted out of one of the operation slits.

(4) Permanent nerve damage and numbness: Dr. Robert had accidentally cut nerves to my left quadriceps, groin and lower belly.

Dr. Robert had mentioned none of these possibilities.

During my hospital stay, I never saw him. Once home, I repeatedly phoned his office, begging for help, but he never called back. Two weeks later, during our only post-op visit, he said the nurse had never told him.

Having removed more than half of my abdominal lymph nodes, Dr. Robert found that they were all cancer-free. My post-op report stated that he’d removed them prophylactically; as I saw it, that was like removing a hip so I wouldn’t break it.

A year later, I found my legs and buttocks swelling up again. At first I thought I’d twisted my ankle, but eventually Dr. Ann enlightened me: I had chronic lymphedema.

She steered me to cancer rehab, where I learned I could improve the symptoms slightly with time-consuming exercises, careful skin care and $135-a-pair pantyhose that squeeze me girdle-tight.

Now I roll a tennis ball around my ankle to break apart the fibrosis caused by lymphedema. I research cheaper pantyhose. And to give myself time to exercise and heave my hips into those leg-hugging hose, I set my alarm forty-five minutes early each morning.

I’ve damaged my knee with the grunting maneuvers required to don the hose. Long walks are temporarily a thing of the past.

The last straw is that I must hand wash these tights nightly–an odious eight-step chore.

Looking back, what astounds me is Dr. Robert’s profound lack of curiosity about his interventions’ potential impact on my daily life. He could have anticipated some of the problems–what symptoms might I develop? How ugly would I feel as a human blimp?–and might at least have warned me about what to expect.

And if I’d known the risks beforehand, I could have asked myself which I would choose: uncertainty about a recurrence, or the tedious gamut of lymphedema care?
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