Can we talk? Can we afford not to?

Family Planning changes lives

Family Planning changes lives (Photo credit: The White Ribbon Alliance for Safe Motherhood)

A thoughtful reader named Lydia left a comment in response to my blog (just below) giving thanks for Mark Ruffalo and his support for reproductive rights. If you’re not into reading comments, here is Lydia’s in full:

So, are you saying that killing your unborn child was a better option than allowing the child to live-maybe to be welcomed into another family’s life, and your secrecy was better than taking action to hold the rapist accountable for what he did? I have had an unwanted pregnancy, too, and as horrified and hopeless as I felt, I allowed my child to live and I have no regrets. Abortion is never the right choice, but I know it sometimes feels like the only choice. That is why women need to pick up the phone and call a crisis pregnancy counselor. Abortion is like suicide. It is a permanent solution to a temporary problem.

If we’re going to talk, we have to listen. In trying to listen to Lydia I hear a couple of points of similarity and/or agreement. She and I each struggled with how to deal with an unwanted pregnancy (hers I suspect much later than mine in 1956.) We both appreciate strong & welcoming families. We both believe women need access to a pregnancy center which might offer help. Maybe we can build on these points. And try to work through some disagreements.

We need to set aside the business of holding the rapist accountable, at least in my case. In 1956, workplace rape was without recourse. I would have been laughed out of town — after destroying the fabric of several families, probably not including his. Today, women often fail to prosecute acquaintances who don’t hear No. Should they be required to prosecute, to relive painful experiences in the name of public justice? I’m not sure. Perhaps they deserve the right to make that decision for themselves, with legal advice if they choose and with the support of loved ones. Should they be required to carry the fetus that results from a painful experience for nine months in hopes that it might — might — be welcomed into another family? I don’t think so. I think they should have the right to choose otherwise, with the support of physicians and loved ones. I think no two such experiences are identical, so blanket dictates seem unwise.

Neither Lydia nor I have regrets about the course of action we chose. We differ on definitions. Lydia equates fetus with child, presumably because she believes life begins at conception. I respect the religions that teach this doctrine. I strongly support their right to protect the life of any fetus they happen to have, wanted or not. I just do not share the same belief about life’s beginnings. My own deeply held Christian beliefs see the beginning of life somewhat later on. But I think neither my religion nor Lydia’s has the right to tell other women — Jews, Muslims, Buddhists or nonbelievers — what they may or may not do with their bodies.

Lydia sees abortion as never the right choice. I see it as complex and personal, but sometimes the right choice. Mother Nature often sees it as the right choice when miscarriage happens. No one but the woman herself can know about her fetus, her body, her circumstances, her life, so I think it’s improper for me to presume to tell her what she must do. Often, counseling can help.

Which brings us to the crisis pregnancy center. Despite the fact that women have reported hearing untruths and accusations at crisis pregnancy centers, I believe many of them offer compassionate counseling and useful information. My greatly beloved daughter-in-law works at a pregnancy crisis center, and I know my daughter-in-law to be honest, kind-hearted and truthful. I support the right of pregnancy crisis centers to thrive and prosper although I do not support their promotion of unscientific theories. If we can talk, can we consider the possibility that pregnancy crisis centers might coexist with regular reproductive health centers? The latter, after all, offer many, many services unavailable elsewhere: information and testing about STDs; contraception and family planning services; pregnancy testing and counseling — even, in some of them, abortion. In that latter case, abortion is nearly always a tiny percentage of total services. Where they are being driven out of business, all of those services disappear and the results are tragic for countless men, women, boys and girls.

I can absolutely guarantee that when abortion is unavailable women suffer and die. I don’t think those on either side want women to suffer and die. Those on both sides want healthy women, few-as-possible abortions, healthy families.

What do you think, Lydia, is there any hope for conversation?

The curious world of cyberspace

Disappearing from cyberspace is a little like being a tree that falls in the forest. A very small tree. Having disappeared from cyberspace myself for a couple of weeks, I am comforted by the fact that the forest is very large.

It’s not that this space disappeared, just that Boomers and Beyond disappeared. Boomers and Beyond is a blog primarily about issues critical to over-50 generations, and it came to pass on  True/Slant.com a couple of years ago. It dealt with health care and fitness and housing choices and brain exercises and driving safety, and often diverted into rants about gay rights and abortion rights and gun control and other miscellany — because the True/Slant folks were a free-wheeling bunch and why should anybody quit worrying about rights and justice when they turn 50? All those profound words are archived in this nifty blog (this WordPress one right here) created by incredible friend-of-B&B-&-this space Mary Trigiani, so that if anyone stumbles into the forest and wants to study a small bush those twigs — OK, enough with the metaphor — are there to be read.

True/Slant didn’t actually disappear; it got bought by Forbes, and is gradually reappearing (as a New And Improved Forbes blogsite) there. Boomers & Beyond is reportedly going to reappear thereon, as soon as a contract appears. In the interim, it is just sitting there inert, and after several watchful readers noticed its inertia (posting anything new isn’t an option at True/Slant any more) I decided to venture once more into cyberspace.

It’s pleasant to meet you here. I hope we’ll meet again soon.

Early cancer tests, surgeries questioned

Was this mastectomy necessary? It’s a question few breast cancer survivors want to ask, and one that few are likely to answer absolutely. But after years of aggressive emphasis on early diagnosis and treatment, some previous imperatives are being called into question. Noting that breast biopsy has long been considered the “gold standard,” a report in today’s New York Times addresses the new rethinking:

As it turns out, diagnosing the earliest stage of breast cancer can be surprisingly difficult, prone to both outright error and case-by-case disagreement over whether a cluster of cells is benign or malignant, according to an examination of breast cancer cases by The New York Times.

Advances in mammography and other imaging technology over the past 30 years have meant that pathologists must render opinions on ever smaller breast lesions, some the size of a few grains of salt. Discerning the difference between some benign lesions and early stage breast cancer is a particularly challenging area of pathology, according to medical records and interviews with doctors and patients.

Diagnosing D.C.I.S. “is a 30-year history of confusion, differences of opinion and under- and overtreatment,” said Dr. Shahla Masood, the head of pathology at the University of Florida College of Medicine in Jacksonville. “There are studies that show that diagnosing these borderline breast lesions occasionally comes down to the flip of a coin.”

Much of the current finger-pointing is toward pathologists, where their money comes from, whether they are ‘certified’ or not and in general, how good a job they do.

In 2006, Susan G. Komen for the Cure, an influential breast cancer survivors’ organization, released a startling study. It estimated that in 90,000 cases, women who receive a diagnosis of D.C.I.S. or invasive breast cancer either did not have the disease or their pathologist made another error that resulted in incorrect treatment.

After the Komen report, the College of American Pathologists announced several steps to improve breast cancer diagnosis, including the certification program for pathologists.

For the medical community, the Komen findings were not surprising, since the risk of misdiagnosis had been widely written about in medical literature. One study in 2002, by doctors at Northwestern University Medical Center, reviewed the pathology in 340 breast cancer cases and found that 7.8 percent of them had errors serious enough to change plans for surgery.

This space has argued occasionally for reconsideration of yearly mammograms and for longer, stronger consideration of other options before a mastectomy is performed. Especially in the case of older women.

Would I insist on further studies or opt for less radical treatment if I were diagnosed with breast cancer today? Probably. Can I undo the mastectomy I had at 72? Not exactly. Second-guessing is beside the point for someone who is healthy and fit, but asking questions won’t ever hurt.

Earliest Steps to Find Breast Cancer Are Prone to Error – NYTimes.com.

Live longer, healthier: prospects ahead

More news just in on the health and longevity front. At the University of California San Francisco medical center, which I can see from my studio window but that’s about as close as I will ever come to claiming kinship, a clinical trial getting underway will investigate the telomere factor. You haven’t been worried about your telomeres? Get used to them. It hasn’t been so long since cholesterol and genomes became household words.

Bay Area women who volunteer for a clinical trial at UCSF will be among the first people in the world to learn the length of their telomeres – the protective caps at the ends of chromosomes that regulate cell aging and may help people live longer, healthier lives.

Research has shown that the length of people’s telomeres is related to their “cellular age” – the health and stability of certain cells in their body. Because telomere length helps determine cellular health, it’s also been identified as a possible biomarker that can reveal information about a person’s overall health. Short telomeres have been linked to health problems like heart disease and diabetes.

UCSF researchers say it’s possible that identifying a person’s telomere length someday could become as common as checking cholesterol levels. A handful of private companies already have started advertising telomere testing to individuals. In fact, two of the researchers involved in the UCSF study are looking into starting their own company to test telomere length.

The study, reported by Erin Allday in today’s San Francisco Chronicle, will concern such issues as what relationship your telomeres’ length have to health and aging in general, and whether you even need to know a lot about the little cellular-ites. “The idea of telling people their telomere length is totally new and somewhat radical…,” said Elissa Epel, an associate professor of psychiatry at UCSF and one of the lead researchers in the telomere study. (On a purely personal, though relative note: you just try not to worry about it all when you are overage — they want women 50 to 65 — for an aging study and the lead researcher looks like she’s about as old as your granddaughter.)

Medical ethicists say the UCSF study makes sense – as more attention is drawn to telomere length as a potential marker of overall health, doctors should understand whether it benefits their patients to get that information or not.

If people can’t change their telomere length, there may be no point in telling them. Telomere length may be similar to some types of genetic testing that tell people whether they’re at increased risk for Alzheimer’s disease or certain types of cancer, said Arthur Caplan, director of the University of Pennsylvania Center for Bioethics.

Some individuals may decide they want that information – but it’s not always an easy decision to make, he said. “You might find out that you seem to be a premature or rapid ager, but whether there’s anything anybody can do to stop it or reverse it, that remains to be seen,” Caplan said.

How much our telomeres will tell us, what use we can make of it all, and whether you and I really want to know — these issues remain to be seen. Or at least, to be discovered in  the coming study. I have absolute trust in the folks at UCSF. If you do too, and you fit the parameters (female living somewhere in this lovely part of California, between 50 and 65) and want to volunteer to be a part of it all, whip off an e-mail to knowyourtelomeres@ucsf.edu.

UCSF to look at new longevity, health marker.

On being treated to death – Part II

Is there a fate worse than death? Yes. In the U.S., often it is the fate of dying slowly: aggressively treated, over-treated and worn down by the system until that fate has made death truly a blessed relief.

Deborah Wright, an ordained Presbyterian minister and writer now working in secular fields while simultaneously serving as personal pastor to many, forwarded an article that proves out the fate-worse-than-death highlighted in this and recent other articles (see June 25 post below.) The fact that stands out, she comments, is that “the length of time we use palliative care services is growing shorter — because we start it too late.”

We start palliative care too late, we treat too aggressively and too long. The opening story in AP writer Marilynn Marchione’s thoughtful, poignant article just published in Daily Finance serves as a classic example:

The doctors finally let Rosaria Vandenberg go home.

For the first time in months, she was able to touch her 2-year-old daughter who had been afraid of the tubes and machines in the hospital. The little girl climbed up onto her mother’s bed, surrounded by family photos, toys and the comfort of home. They shared one last tender moment together before Vandenberg slipped back into unconsciousness.

Vandenberg, 32, died the next day.

That precious time at home could have come sooner if the family had known how to talk about alternatives to aggressive treatment, said Vandenberg’s sister-in-law, Alexandra Drane.

Instead, Vandenberg, a pharmacist in Franklin, Mass., had endured two surgeries, chemotherapy and radiation for an incurable brain tumor before she died in July 2004.

“We would have had a very different discussion about that second surgery and chemotherapy. We might have just taken her home and stuck her in a beautiful chair outside under the sun and let her gorgeous little daughter play around her — not just torture her” in the hospital, Drane said.

Marchione tells other stories of patients who might have had far more peaceful final days — and of patients who chose extensive, aggressive or experimental treatment for a variety of reasons. It should be the individual’s choice. But the reality is that discussion of palliative care or hospice care (there is a difference: hospice involves declining further treatment; with the newer “palliative care” concept some therapies may be continued) simply doesn’t happen until too late. If it happened sooner, many of us — likely including Rosaria Vandenberg — would choose hospice care over aggressive end-of-life treatment.  But physicians are too busy talking treatment, and patients have not considered their other choices. Comfort and peace lose to the system.

An article posted today on the website of the National Hospice and Palliative Care Organization points the finger in the right direction, right at you and me. If we took the time and energy to write our advance directives, and talk them over with family and friends, millions of days of suffering and millions of wasted dollars would be saved.

Recent media coverage on the challenges patients and families face with overtreatment of a life-limiting illness brings the issues of hospice and palliative care and advance care planning to public attention.

“It’s important to remember that quality of life and a patient’s personal wishes, beliefs and values must be a factor when making care decisions brought about by a serious or terminal illness,” said J. Donald Schumacher, president and CEO of the National Hospice and Palliative Care Organization.

“Discussions helping patients and families understand the many benefits of hospice and palliative care must be more common and held long before a family faces a medical crisis,” Schumacher added.

Advance care planning—which includes completing a living will and appointing a healthcare proxy—is somewhat like planning a road trip to an unfamiliar destination.  Very few people would expect to get to a destination safely and comfortably without having a well-thought-out map in hand.   Yet, it’s estimated that 70 percent of Americans have not completed a living will.

  • A living will charts the course for your healthcare, letting your family and health care providers know what procedures and treatments you would want provided to you—and under what conditions.
  • A healthcare proxy or healthcare power of attorney form, allows you to choose someone you trust to take charge of your healthcare decisions in case you are unable to make those decisions yourself.
  • Advance directives can be changed as an individual’s situation or wishes change.

Still, you and I put it off. Or you may be putting it off, at least, and if so you are taking an absurdly unnecessary risk. You could, instead, download free forms, fill them out and avoid that risk.

Deborah Wright has shepherded countless friends and family members through their final days, and knows what a blessing hospice and palliative care can be. Problem is, though, “we start it too late.”

Americans are treated, and overtreated, to death – DailyFinance.

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.

Your doctor's in shape… but may just be getting in shape to retire

U.S. doctors as a group are “leaner, fitter and live longer than average Americans… male physicians keep their cholesterol and blood pressure lower… women doctors are more likely to use hormone-replacement therapy than their patients,” according to several recent surveys.

That’s the good news.

The bad news is that they are taking all this health and fitness into early retirement. And thanks to the hordes of baby boomers hanging up their stethoscopes for good, finding enough doctors in any shape at all is going to be a challenge, particularly in light of the numbers of newly insured.

Nearly 40 percent of doctors are 55 or older, according to the Center for Workforce Studies of the Association of American Medical Colleges. Included in that group are doctors whose specialties will be the pillars of providing care in 2014, when the overhaul kicks in; family medicine and general practitioners (37 percent); general surgeons (42 percent); pediatrics (33 percent), and internal medicine and pediatrics (35 percent).

About a third of the much larger nursing workforce is 50 or older, and about 55 percent expressed an intention to retire in the next 10 years, according to a Nursing Management Aging Workforce Survey by the Bernard Hodes Group. New registered nurses are flowing from colleges, but not enough to replace the number planning to leave the profession.

“Moving into the future, we see a very large shortage of nurses, about 300,000,” said Peter Buerhaus, a nurse and health-care economist and a professor at Vanderbilt University. “That number does not account for the demand created by reform. That’s a knockout number. It knocks the system down. It stops it.”

According to the census, baby boomers include the 66 million Americans born between 1946 and 1964.

In an article for the Journal of the American Medical Association, Buerhaus and colleagues Douglas Staiger and David Auerbach predicted that there will be at least 100,000 fewer doctors in the workplace than the 1.1 million the federal government projects will be needed in 2020 under the health-care overhaul.

“There’s a much more rapid retirement of physicians,” Buerhaus said. “What does this retirement mean? This will mean at least 100,000 fewer doctors in the workplace in 2020.”He said the article does not estimate the change in demand or the level of recruitment by medical colleges, which is being beefed up significantly under the health-care law.

Although current studies involve more than a little conjecture — Will professions in the medical field continue to be as attractive as other areas? Will doctors and nurses work longer if truly needed? — there is no doubt about the coming shortage.

Lori Heim, president of the American Association of Family Practitioners, said someone might soon have to replace her. “My age group is looking at when we are going to retire,” said Heim, who is 54. “More physicians are changing their practice, doing things that have less calls. They want administrative roles.”

Heim said her statement is based on an impression. “I haven’t seen any numbers on this.” But, she said, her association is among the many that for years have pointed out the shortage of primary care doctors and nurses to the White House and Congress.

Staying healthy might be the best defense.

Retirements by baby-boomer doctors, nurses could strain overhaul.