Surviving to live another day

It started innocently enough: I was complaining about being short of breath at a dinner party. Several physicians were at the table; one suggested that it might be possible to increase lung capacity by doing exercises with a spirometer. “I’m not a pulmonologist,” he said, “so I don’t know; it’s just a thought.”

Incentive_spirometer

The thought was planted. I fired off an email to my primary care physician (we love Kaiser Permanente) asking if she knew of such a thing, and/or might refer me to someone to give it a try. She replied with a request that I come into the office so she could evaluate me. Well, grump, grump; all I wanted was a quick fix, but anyway. It takes all of about 10 minutes to get to the Kaiser Medical Center. I arrived for an 11 AM appointment.

The good Dr. Tang patiently explained that she did not prescribe via email. And because it had been 2 or 3 years since we last examined the heart/lung situation she would like to do another work-up, to see about this shortness of breath business. She went very lightly on the issue of my being 83 years old for heavens sakes, although she did mention she had 60-ish patients in worse shape than I. (This is a compliment, coming from one’s physician whom one reminds of her mother, although I was still looking for some magic way to walk uphill without having to stop and catch my breath.)

She then ordered a zillion blood tests, an EKG and a chest X-ray. Still grumping a little, I set out for all these, vowing that if even the smallest of lines appeared I would just come do it all another day. It took me roughly 3 minutes to get in for the EKG, less for the X-ray, and when I got down one more floor to the lab and pulled ticket #372 the automated voice was already saying “Now serving #372 at Station #4.” After dutifully following all these instructions, I went home to take a nap.

Within an hour, a voice mail message arrived from my doctor. “Your tests are fine, I don’t want to alarm you. But I’d like for you to come back in right away. Just tell the front desk you’re here.” Alarmed, I set out for the Medical Center once again. Lung cancer. Definitely. A spot on the lung showed up on the X-ray, and I will definitely die of lunch cancer in the immediate future. fear

Fortunately, the 10-minute drive didn’t allow too much time to contemplate my impending demise. “No, your X-ray is fine!,” she said. “Your lungs are fine! It’s just this one test that came back pretty high. It’s a screening test for possible blood clot. These tests are set very high because we don’t want to miss anything. Still, I want to be sure there’s no clot there that could indicate a pulmonary embolism causing your shortness of breath.” OK, I prefer not to have clots floating around in my bloodstream.

So does Dr. Tang. Whereupon she ordered a CT scan – which meant walking uphill a block to the hospital where they have those fancy machines (and radiologists to read what the machines report.) “Once you’re done,” she said, “come back to the office and as soon as we have the results we can talk about them.” I set out on the brief uphill walk. Pulmonary embolism. Definitely. Isn’t that what did in my mother at age 70? Embolism, aneurism, something blood-clotty. I’ll probably die of pulmonary embolism before I get back down this hill.Grim reaper

It is now close enough to closing time that most Kaiser people are closing up. But the CT scan people wait for me, hook me up to the dye thing and run me back and forth through the machine. I walk back downhill, mildly optimistic because nobody gasped while I was getting dressed in the cubicle several feet from the scan people. With nobody now at the receptionist desk, I walk into the nursing/examining room area and tell a smiling nurse that I’ll be outside if Dr. Tang needs me. And sure enough, in another 5 minutes – not enough time to consider calling the crematorium – she comes bursting through the door saying she’s so glad I waited.

“As I said, these screens are set very high so that we don’t miss anything,” she begins. “In your case, there was nothing to miss. It was just a false positive.” I exhale. We talk briefly about how I might increase my exercise regimen if possible – which might even address the shortness of breath issue; I concede that I am, indeed, 83.

On the way home, no longer planning to die in the immediate future, I count the cost: six hours, several hundred dollars co-pay. And I give thanks for our Kaiser membership, modern medical technology and my good doctor.

happiness

 

 

To Have (or maybe not) a Stroke

Heart attack

“You’re not leaving here with your blood pressure that high,” the doctor said. It was 189 over something equally ridiculous. It was not interested in coming down. Finally she said, “Okay, pick up this prescription on your way out and take it the minute you get home.”

Vividly running through my head were images of my mother, who suffered a series of strokes that eventually killed her in her 70th year. Plus images of assorted aunts and others who suffered debilitating strokes and often early deaths.

“But . . . but,” I said to the doctor, as I have repeatedly said since my carefree youth; “I don’t have high blood pressure. My three older sisters? They all had high blood pressure. They also all had beautiful auburn curls, while I got the utterly straight, dishwater blond hair. So, shortly into our adulthood, I took to saying, ‘OK, keep your gorgeous curly hair, I’ve got the good blood pressure.’ It seemed like a pretty fair trade.” My physician said, not unsympathetically, “Those genes may have caught up with you.” And just like that, I joined the ranks of the hypertensive. That great mass of humanity waiting apprehensively for the stroke or heart attack that might swoop in and end it all.

By the time I got home I was visualizing an immediate demise.

Unlike my mother’s generation, though, today’s hypertensives have internet encyclopedias worth of information and an arsenal of drugs bewildering enough to induce a small stroke if you really try to figure them all out. Beta blockers. Diuretics. Angiotensin II receptor blockers. Vasodilators. A good doctor, whose advice you can follow, at least on which meds to take, is a great boon. french fries

The rest of the try-not-to-have-a-stroke business is fairly straightforward. Quit with the nicotine, and moderate the booze (or quit that too.) Watch the weight – extra poundage, especially around the midsection, can increase your stroke probability rather dramatically. Walk for at least 30 minutes a day, increasing the distance as you can. (Swim, bike, exercise.) Salt can do you in fast; if you’re trying to stay within the recommended 1,000 to 2,000 mg per day, a large order of fries (350 mg) might not be a wise choice.

This writer is good with most of the above – excepting an occasional uncontrollable urge for a small order of fries. Plus whatever that was I picked up from the Kaiser pharmacy definitely worked. One tiny little pill, and the next day my blood pressure was 114 over 85.

Maybe I’ll stick around for a while.

Wise Words from Doctor Turned Patient

Bob-baldric

Not every doctor gets an extended view of what his or her patients experience. But one who did – and has shared both the experience and its message(s) is a recently recovered friend and end-of-life issues colleague of this writer, Robert Liner, MD. Liner spent 20 years as an Ob/Gyn with clinical and teaching positions, principally at Mt. Zion Hospital in San Francisco, followed by 20 years in private practice of prenatal diagnosis and gynecologic ultrasound. Among his exhausting list of interests and endeavors are piano lessons, playwriting, poetry, working to publish an illustrated lullaby — and serving on the Leadership Council of Compassion & Choices of N.CA. (And occasional adventures into designing menswear, such as a reincarnation of the ancient ‘Baldric‘, modeled above, which Liner feels makes a lot more sense than the necktie.)

Not long ago, though, all of these – plus a simultaneous major house move and recent new marriage to longtime lady friend – were severely complicated by a bout with life-threatening illness.

“A year ago, on my sixty-ninth birthday,” Liner wrote in an article that recently ran in San Francisco Medicine, “I checked into Kaiser Hospital for work-up of a chronic cough, back pain, severe anemia and a low-grade fever. Believing that patients often overreact to symptoms and seek medical attention prematurely, I had let things go a bit far. I’d been easily fatigued and a bit short of breath, but when a couple of days prior to my hospital admission my wife saw me leaving food on my plate at a favorite restaurant, she insisted on taking me to the ER. I told her this would be an abuse of ER resources but, once there… watching two units of blood being transfused into me, I brilliantly arrived at (the same) conclusion: I was seriously ill.”

Liner covers the days of his hospitalization with openness and humor: “Generally, when getting medical care, I avoid mentioning that I’m a physician. Even experienced providers sometimes have steadier hands when not aware they’re administering to a physician. Or, for that matter, to a malpractice attorney.” (You can read the entire, illuminating piece in the current issue of San Francisco Medicine. It is a significant message to physicians, and an informative and reassuring message to anyone facing hospitalization.)

Liner emerged from more than six months of chemotherapy, radiation therapy and “a lot of drugs” with his B-cell lymphoma in complete remission and a low percentage chance of recurrence. But in addition to the firsthand lessons for physicians and patients about illness, he offers a powerful lesson for all of us about dying – since all of us, patient and doctor alike, do eventually die. Liner and his wife faced that possibility throughout a 36-hour period in which it seemed likely that his disease would, in fact, be terminal; they faced it with “a profound sadness.” But he explains:

“There was nothing irrational about that sadness. Patients who are genuinely terminally ill and who seek physician aid in controlling the time and circumstances of their deaths should not be thought of as irrational or pathologically depressed. If, unexpectedly, my lymphoma recurs, the prognosis would be ‘dismal.’ If that happens, I believe it should be within the scope of ethical, legal medical practice for my doctor to provide me with a lethal prescription – a key to the exit.

“Physician aid in dying is something distinct from suicide. The disease would be killing me. No compelling state interest here. No slippery slope. Only a decision to be made by me as a patient, along with my family and my doctor. As a physician and as a patient, I see this as a fundamental liberty interest and as sound, compassionate practice of the art of medicine. Of, course, where my death is concerned, I’d rather skip the whole thing.”

Wouldn’t we all.

 

 

Life: does longevity trump quality?

“We have to get out of the way,” she said; “make room for other, new people on the planet.” Accomplished author/editor Cyra McFadden, at a recent dinner party, was talking about a group of women scientist friends’ excitement over discoveries they have made which show promise of extending life a fraction longer. Cyra was in fierce, though silent, disagreement.

It may be time for those of us who disagree with the rampant prolong-life-at-all-costs theories  to stop being silent.

Americans are, in fact (as reported in Epoch Times below, and elsewhere) living longer all the time. Sometimes that’s just fine, especially if we’re in reasonable health. But what if we’re not? What if we’d just as soon be getting on with whatever follows this temporary time on earth? Millions and millions of people are living for hours, days or extended months and years in circumstances they would not choose simply because we have created a culture that says we must be kept alive no matter what.

Average life expectancy continues to increase, and today’s older Americans enjoy better health and financial security than any previous generation. Key trends are reported in “Older Americans 2008: Key Indicators of Well-Being,” a unique, comprehensive look at aging in the United States from the Federal Interagency Forum on Aging-Related Statistics.

“This report comes at a critical time,” according to Edward Sondik, Ph.D., director of the National Center for Health Statistics. “As the baby boomers age and America’s older population grows larger and more diverse, community leaders, policymakers, and researchers have an even greater need for reliable data to understand where older Americans stand today and what they may face tomorrow.”

Where do we stand right now? Well, the same source that says we’re living longer and enjoying better health and financial security (hmmmm on the financial security business) reveals that Americans are “engaging in regular leisure time physical activity” on these levels: ages 45-64: 30%; ages 75-84: 20%; geezers 85 and over: 10%. Hello? Better health and financial security, just no leisure time physical activity? Could it bear some relationship to obesity factors in the same data: 30+% for men, 40+% for women?

Does living well need to be assessed in the compulsion to live long? Why not? Everyone should have the right to live at whatever weight and whatever level of inaction he or she chooses. But the system is weighted toward keeping us alive under all conditions, and bucking the system is not easy. A poignant, wrenching tale of her father’s slow decline and death — and her mother’s refusal to go down that same path — was recently told by California writer/teacher Katy Butler in the New York Times Sunday Magazine.

Almost without their consent, Butler’s gifted, educated parents had their late years altered to match the system’s preferences:

They signed living wills and durable power-of-attorney documents for health care. My mother, who watched friends die slowly of cancer, had an underlined copy of the Hemlock Society’s “Final Exit” in her bookcase. Even so, I watched them lose control of their lives to a set of perverse financial incentives — for cardiologists, hospitals and especially the manufacturers of advanced medical devices — skewed to promote maximum treatment. At a point hard to precisely define, they stopped being beneficiaries of the war on sudden death and became its victims.

Given the limitless sources of victimization floating around, we should not have to add just-try-to-keep-them-alive-forever health care to the list.

My husband and I, having long ago signed advance directives with additional specific issues sheets (“If this happens, do that; if that happens, don’t do this,” etc) recently got them out and talked things over again, a very good thing to do for EVERYbody over 18. We will add dementia provisions to the existing documents while we can remember to do that (the closest you can come to avoid being warehoused in a memory-loss facility for umpteen years.) We are clear, and our friends and family understand, about having no interest in hanging onto life in a greatly diminished state if such an opportunity presents itself; for increasing thousands, it presents itself every day.

All this being said, there’s still a reasonable chance that I’ll be out of town one day when I’m in my 80s (which aren’t that far off), get wiped out by a speeding cyclist and picked up in a seriously mangled state by the paramedics, taken to a hospital that’s not Kaiser (which has all my directives on file,) miraculously brought into some heavily-sedated state of being because the hospital doesn’t consult Kaiser or the living will registry (which also has my directives) and kept alive by assorted mechanisms. By the time my husband or children get there to insist everything be unplugged — which of course will involve long hours and possibly court action — hundreds of thousands of dollars will have been needlessly spent.

I consider myself a highly valuable member of society, and my life a gift from God. But would those dollars not be better spent on a few kids needing specialized care?

Epoch Times – Americans Are Living Longer, According to Federal Report.

Patients fight hospitals (& not just Catholic hospitals) for proper care

“Suppose I wind up being taken to a hospital,” said the lady with the penetrating blue eyes and a lovely, long braid over her shoulder. “How can I keep them from doing all those things I don’t want — ventilators, feeding tubes…?”

The lady with the lush braid was among a small group of retirement community residents with whom I spoke yesterday about end of life choices. None of them fear death. All of them fear aggressive, unwanted treatment. A colleague and I had been invited to talk with them about documents (advance directives, POLST forms, etc) and legal measures that can help insure a compassionate end. But the distressing reality is that there are no guarantees.

This is where we are with health care: patients having to fight against doctors, hospitals, systems — and directives from Bishops — for the right to die in peace.

A recent Kaiser Health News article (KHN is a publication of the Henry J. Kaiser Family Foundation and unrelated to Kaiser Permanente) cited problems arising from directives to Catholic hospitals about a variety of issues. The directives, issued in November by the U.S. Conference of Catholic Bishops, changed the policy on feeding tubes, for example, from “presumption in favor of”  to an “obligation.”

“This obligation,” the bishops said, “extends to patients in chronic and presumably irreversible conditions,” such as persistent vegetative state, who might live for many years if given such care. A feeding tube is not required, however, if it wouldn’t prolong life, would be “excessively burdensome for the patient,” or would “cause significant physical discomfort.”The directive raises fresh questions about the ability of patients to have their end-of-life treatment wishes honored — and whether and how a health care provider should comply with lawful requests not consistent with the provider’s religious views. Hospitals and nursing homes do not have to comply with requests that are “contrary to Catholic moral teaching,” according to longstanding policy that, as in the case of the revised directive, applies to non-Catholic patients as well.

As the women in our group yesterday understand, you can wind up with unwanted treatment in all sorts of circumstances, not just when you’re dying.

Dr. Lachlan Forrow, a Harvard University medical ethicist and palliative care specialist, expressed strong concern about the new policy, stressing its potentially broad scope. “That gets to be a very, very large number of people,” said Forrow, who heads a panel developing recommendations for the state of Massachusetts on end-of-life care.

(A)ccording to Catholic officials and outside experts, the directive may well apply to a wider range of patients, those that it describes as having “chronic and presumably irreversible conditions,” though the organization representing Catholic health facilities downplays the impact. Experts say this affected group could include those with massive strokes, advanced Alzheimer’s disease, traumatic brain injury and Lou Gehrig’s Disease.

If a patient or family didn’t want a feeding tube “and the reason they don’t want it is they basically want to die, then the Catholic institution would explain to them they can’t cooperate with that and they would have to go to another institution,” said the Rev. Thomas G. Weinandy, executive director for doctrine at the bishops’ conference, who helped draft the policy.

Weinandy said “obviously the public should know what the directives say,” and patients and relatives “can easily download the directives or get a copy.”

Oh, sure. The EMT people are loading mom into the ambulance, and you ask them to wait until you download a few pages of papal edicts.

In the days before she died two weeks ago (in a non-Catholic hospital) my sister Jane occasionally showed signs that, though sleeping, she might be experiencing pain. My niece, who was keeping round-the-clock watch over her mother, more than once asked the attending physician for additional pain medication and was told, in a “There, there now, dear” voice that “We can’t hasten!!” My niece is a tenured law school professor.

Doctors make a lot of fuss about that “First, do no harm” business in the Hippocratic oath. Is withholding pain medication because it might cause death a few hours sooner than later doing no harm? Is inflicting painful, unwanted and unwarranted interventions for some obscure religious reason doing no harm?

Catholic Directive May Thwart End-Of-Life Wishes – Kaiser Health News.

'Lesbian Health 101' seeks to open doors, minds

Years ago a lesbian friend, who would soon die of uterine cancer, told me how she hated going to her gynecologist and consistently postponed it. “I’m sitting there in the middle of all those bulging bellies and beatific smiles,” she said, “like some sort of an alien.”

How I wish she were alive, so I could send this clipping from the San Francisco Chronicle:

When Dr. Patricia Robertson held the first lesbian health clinic at San Francisco General Hospital in 1978, she decided to cover the “family planning” signs in the lobby – she didn’t want to deter patients who thought gynecologists were only for dispensing birth control and helping women get pregnant.

“We wanted to put together evidence-based research that would support clinical guidelines, so when we talk about why lesbians are different from heterosexual women we can back that up,” said Robertson, who is a professor in the UCSF department of obstetrics, gynecology and reproductive sciences. “Doctors are going to be able to legitimize their advice after they read this book.”

The article points out that although progress has been made in health care since then, “lesbians are more likely than straight women to suffer depression and drug and alcohol abuse. They may be less likely to get regular health screenings like pap smears and breast exams.

With those disparities in mind, Robertson and Suzanne Dibble, a registered nurse with the Institute for Health and Aging in the UCSF School of Nursing, have put together the first textbook on lesbian health care. ‘Lesbian Health 101’ was released this month.

The textbook is written in medical language and designed for doctors, nurses and other health care providers, although Robertson and Dibble say they’re encouraging lesbians to use it as a resource for understanding their own health issues. Most of the chapters were written by health care providers who are also lesbian.

Chapters in the nearly 600-page book focus on a wide variety of health issues, from heart disease and breast cancer to partner violence and how to decide which woman in a relationship should get pregnant.Some sections focus on the risk factors that affect lesbians more than straight women – higher smoking rates, for example, or what effect not having children might have on breast cancer risks – while others address how doctors can best meet the particular needs of lesbian patients.

Many of the health issues that affect lesbians can be tied to stress related to their sexual orientation, Dibble said. Discrimination, the stress of coming out to family and friends, or feeling ostracized and alone can all lead to health problems.

Dr. Erica Breneman, an obstetrician-gynecologist with Kaiser Permanente in Oakland, said she’s pleased to see such a textbook available to doctors now, even if it’s troubling that the book is even necessary.

“In a perfect world, we wouldn’t need this,” Breneman said. “A woman who happens to be gay shouldn’t need much that’s terribly different than a woman who is straight. But the reality is, because of the particular demographics of lesbian women, they do have other health issues.”

Perfect worlds, it seems, are slow in coming.

‘Lesbian Health 101’ seeks to open doors, minds.

New idea: patient-centered healthcare

American health care, with or without the reform so desperately needed, seems headed in the direction of comprehensive care. For us patients — those of us fortunate enough to have coverage allowing us to be patients — part of this is having one doctor who really knows and follows your general condition. A century ago, before costs went through the roof and access to care went out the window, American health care worked that way.

At the California Wellness Foundation‘s Healthy Aging Conference in Los Angeles earlier this week the talk was all about “medical home“. Unwilling to risk a blatant display of ignorance I spent much of the morning frantically searching the speaker’s handouts for a clue about what a medical home might be. The speaker, it being early on in the event when my bewilderment arose, was keynoter John Rother, Executive Vice President of Policy and Strategy for AARP.

Though it was not in the handouts — the audience consisted largely of health professionals who presumably knew all this — I will clarify the medical home business here. With a little help from Wikipedia: “an approach to providing comprehensive primary care… that facilitates partnerships between individual patients, and their personal physicians, and when appropriate, the patient’s family.”

Rother’s power-point presentation, billed as “Moving Past Talk: the Challenge of Wellness” reviewed the state of U.S. health, health care and endangered health reform before getting to the medical home issue. When he did, he characterized the medical home as “more personalized delivery of services,” adding that the concept envisions that “someone’s in charge.” It enables hospitals and doctors to work more closely together, Rother said, and provides extra payments for primary care doctors.

Kaiser has this. Many of us enjoy this. Could we please find a way for the healthcare homeless of America also to find a medical home?