I (might) heart New Mexico

Flag-map of New Mexico
Flag-map of New Mexico (Photo credit: Wikipedia)

New Mexico is, so far, batting 500: the good citizens of Albuquerque voted down (on November 19) a ballot measure that would have denied women the right to an abortion after 20 weeks. Now a case is underway in a New Mexico district court to establish whether a dying citizen has the right to hasten his or her death with the aid of a physician.

On the surface, the two issues might seem to have little in common — other than both being in New Mexico and involving the two primary causes with which I’ve been concerned for the past several decades. But they are at the heart of similar social justice concerns: individual autonomy, the individual woman’s right to control her own body, the individual of whatever gender, race or religion to choose a humane and compassionate death. They are opposed by the exact same groups: those who say they want “less government” — yet would involve the government in these most personal and private matters, and those who say they want religious freedom — yet would have their own religion dictate to everyone else.

Sanity prevailed in Albuquerque last month. Late term abortions are the most difficult and painful of decisions, and account for only a tiny fraction (one or two percent) of all abortions. But the people who put the issue on the ballot saw this as one more chance to chip away at the already diminishing right to a safe and legal abortion in the U.S.

One can only hope that sanity will prevail again. The end-of-life case now being argued was brought by a 49-year-old woman named Aja Riggs who has advanced uterine cancer, and two physicians who want to be able to prescribe medications – without fear of prosecution – to terminally ill patients wanting to end life on their own terms. Riggs’ cancer is currently in remission, but she has gone through aggressive treatment and extensive periods of terrible pain and suffering and says, “I don’t want to suffer needlessly at the end.”

Would any of us? Would you?

Most of us would feel that decision – what to do as we face life’s end – is one we’d prefer to make with our loved ones and our physicians and without governmental interference. Just as many of us – well reflected in the Albuquerque vote – would prefer having women make their own decisions with loved ones and physicians and without governmental interference.

Maybe reason will win again – a win for New Mexico and the rest of us.

A little thankfulness

English: Cornucopia
English: Cornucopia (Photo credit: Wikipedia)

My Thanksgiving starts, as it’s done for nine years, with the Annual Interfaith Thanksgiving Prayer Service — this year at the Buddhist Church. (Past services have been at churches, synagogues and last year the Mormon Stakehouse; it’s a learning experience and a lovely one.) And because thankfulness is indeed good for the soul, here are just a few of the things I’m thankful for… or not:

While the remarkable folks at places like St. Anthony’s continue to feed the hungry, Thanksgiving Day and every day, for which we can all be thankful, it’s hard to be thankful for Congressional Republicans who voted earlier this year to cut some $40 billion out of the Supplemental Nutrition Assistance Program (SNAP), or food stamps, which millions of Americans count on just to have enough to eat every day. But I’m thankful to live in a democracy and hopeful that a focus on the common good will eventually prevail over today’s focus on the one percent.

I am thankful for the slow but steady progress of the cause of death with dignity in this country. And that is thanks largely to Compassion & Choices, a fine organization if there ever were one. I’m not just thankful, but proud to have worked long and hard as a C&C volunteer for more than a decade.

Closer to my heart today is the cause of reproductive rights, partly because those rights are being relentlessly eroded. I remember so vividly what it was like to be a woman without such rights that it leaves me thankful beyond measure for those working so hard to protect them. People like –

Cecile Richards and everyone else connected with Planned Parenthood. Vilified because abortions are provided at some clinics (a tiny percentage of the services offered,) Planned Parenthood is now defending those who need insurance coverage for contraception. “Put simply, birth control is basic, preventive health care that millions of women rely on every day,” Richards wrote in a recent email. “Over 99 percent of sexually active women use birth control at some point in their lives, for a wide variety of reasons. Thanks to the Affordable Care Act, insurance companies are now required to cover contraception with no out-of-pocket cost, a landmark step for women’s health that gives many women access to affordable birth control for the first time. (But) now a handful of out-of-touch, mostly male employers want to take that coverage away — and force their own beliefs onto tens of thousands of employees…”

In other words, a fertilized egg must be protected at all costs… including the cost of women’s health? Go figure. It’s headed to the Supreme Court, and reason, sanity and women’s health are likely to lose. So I’m thankful that Planned Parenthood is here at least to fight the battle.

Or others, like –

Catholics for Choice President Jon O’Brien, whose recent letter to the New York Times pointed out one simple, obvious truth: “Catholics in the United States have abortions and support access to abortion services at the same rate as other women do.”  Many of my Catholic friends are weary of themselves being vilified for a belief they do not hold — just because church officialdom insists on valuing their fertilized eggs more than themselves.

The Annual Interfaith Thanksgiving Prayer Service always includes a reading of President Abraham Lincoln’s (somewhat tedious) proclamation of a national day of Thanksgiving, urging us all to be grateful for our multiple blessings “with humble penitence for our national perverseness and disobedience.” Some things haven’t changed in the past century or so. But listening quietly to the historic proclamation, surrounded by a bunch of Americans of every imaginable race, creed and political persuasion, somehow makes one hopeful that human rights of all sorts — daily bread and individual choice to name a couple — will eventually win out.

And that’s something to be thankful for.

Life & death decisions: who chooses?

Scale of justice
Scale of justice (Photo credit: Wikipedia)

I was pleased to be included in a panel on Advance Directives recently for the Bar Association of San Francisco, surrounded by three very smart women. Organized & moderated by SF Bar’s John O’Grady, the panel included Harriette Grooh of HGA Personal Care Consultants, Sara Stephens of Good Medicine Consult & Advocacy, and Attorney Elizabeth Krivatsy. The audience — in post-event evaluations — gave us mostly all fives out of possible one to five ratings, which would be a nice touch to my resume if I had a resume. I was there as writer on end-of-life issues, and acknowledged as the wearer of two hats. My death & dying hat alternates with the abortion hat, which I explained was how never to be invited to cocktail parties.

But this panel’s focus was on end-of-life decision making: how, if we consider it, would we prefer to die? Most of us say: At home, at peace. Physician aid in dying — now legal in four states and a movement that is finally gaining ground around the U.S. — is key to peaceful death for many of us, and significant to my work in the area. But opposition to this rational, humane way to die comes from two powerful directions: The Catholic Church (NOT most Catholics, certainly not the excellent folks at Catholics for Choice) and the far right — mostly religious fundamentalists who somehow believe that pain and suffering at the end of life should never be shortened.

The issue becomes one of who chooses: the dying individual, or religious and political powers.

My hats are interchangeable. Comprehensive, justice-rooted women’s health cannot put the fetus in control and cannot take the potential decision to choose an abortion away from the individual. But opposition to this rational, humane way to live comes from two powerful directions. You guessed it: Catholic officialdom and the religious/political right.

Happily, there’s progress, slow but sure, in end-of-life justice and my hat is off to all — Compassion & Choices in particular — who are leading this battle. Unhappily, my other hat might need to be a helmet to protect against the slings and arrows of those opposed to reproductive rights.

Grief: A mind/body conundrum

Physician treating a patient. Red-figure Attic...
Image via Wikipedia

This is a cautionary tale.

The main character, a woman of a certain age, became concerned about suddenly being short of breath. Nine months earlier she had defended her title in a 5k community road race, so it didn’t seem to make sense that she would be huffing and puffing after one block on a slight incline. She worried more and more, and finally went to see her primary care physician.

“No,” said the doctor, “this should not be. We’ll start with a stress test to check out the heart, and then go with a pulmonary function test. Recent x-rays haven’t shown anything wrong with your lungs, but we’ll want to make sure.”

The patient aced the stress test, which relieved everyone. Subsequently, at the end of the pulmonary function tests she did the six-minute walk, as instructed, regular pace, and the nurse who had been following along in case she conked out said, “Well, you’ve got no shortness of breath, and I’m exhausted.”

In between, an interesting thing had happened. During a visit with her niece, who is a family practice physician in another state, the medical dilemma happened to come up. “Well,” said the niece, rather gently, “you’re doing all the right things: seeing your doctor, having a stress test first, checking pulmonary function. But when all is said and done you did just lose a sister to respiratory failure, while you were still grieving the loss of another sister almost within the same year…   It could be that your body is just trying to tell you something.”

Almost immediately I felt better. Went ahead with the pulmonary function test just to err on the side of caution, but by then I was feeling so much better that just walking around that hospital corridor at what felt a leisurely pace was still enough to wear out a nurse who is 10 years younger. She hadn’t told me she was required to follow. And of course, at the start of it all, I hadn’t thought to mention anything about sibling loss to my primary care doctor. Communication is good.

Soon afterwards, I attended a meeting at which the keynote speaker was Lyn Prashant, founder of an organization called Degriefing. Among the handouts was a page headed “Common Grief Reactions,” featuring lists of physical, emotional and mental responses to grief. Number 5 under Physical? You guessed it: shortness of breath.

Who knew? Certainly not this writer, who has only spent the past three decades intensely involved with end-of-life issues. Hospice volunteer, part of an AIDS support group throughout the 1990s, currently a chapter board member and client volunteer for Compassion and Choices, author of dozens of articles and one book about end-of-life issues. Never heard of any of those physical manifestations of grief — or if I had, they were too abstract to register.

That was then, this is now: Loss, sorrow, grief — is it all in your head? Maybe not.

Dementia: stories and sources

The post about dementia sufferers and their tendency to wander (May 6) evoked a host of stories about temporarily lost parents, grandparents, friends and relations. Almost everyone, it seems, has such a story — and unfortunately, those who haven’t may collect one or two in the future.  Reader Cathy Jensen sent a poignant tale of a friend who went wandering in his pajamas during the pre-dawn hours, but was found by the garbage collectors and brought home on the back of their truck. And reader Tom McAfee, en route to see his own mom and hopefully jog memories of children and grandchildren with photos, sent a link to a podcast aired on WNYC in March.

An offbeat idea, the WNYC piece explains, turned out to be a good solution for a nursing home in Germany from which residents were wandering off. Administrators created a bus stop in front of the home, complete with bench and a painted sign for a bus that never came. It provided a place where many wanderers could sit and wait until the urge to go back home, or elsewhere, melted away. Might not work everywhere, but it worked in Dusseldorf.

And reader JTMcKay4 sent, in case you missed them in the comments section, links to the Alzheimer’s Association’s “Safe Return” program and to a source for a long list of related documents. State-specific advance directive forms can also be downloaded, free, from the “Caring Connections” site maintained by the National Hospice and Palliative Care Association site, and this space remains committed to the support of the nonprofit Compassion and Choices, from which forms can also be downloaded.

There is no guarantee against winding up in a memory unit. But a little preparation can go a long way toward helping if the time comes.

More on Health Care: Where the Costs Are

A few interesting factoids were dropped into the health reform debate by New York Times writer Amanda Cox Tuesday:

In 2006, health care expenses among half the United States population totaled less than $800 per individual, according to the federal Agency for Healthcare Research and Quality.

For openers, that seems entirely reasonable. Would that we could actually care for the citizenry at $800 a pop. Keep reading.

But the expenditures were not uniformly distributed throughout the overall population. Spending was far higher among the elderly, the obese and people who identified themselves as unhealthy. Median spending in those groups totaled $2,300 per individual. Although these patients represent just one-third of the population, they accounted for almost 60 percent of health care spending.

I hate to stomp this nearly dead — oops, bad metaphor — horse even further into its grave, but a lot of us, given the chance to talk to our doctors about aggressive, invasive, often futile end-of-life treatments that are going to make our ends horrific might choose to go home and spend our remaining time with palliative care, at peace. A nifty way to cut that $2,300 back down to $800. But Senator Grassley and others think we should now allow those conversations.

The truth may be too obscured by the cleverly promoted lies, but the issue is about choice. Compassion. Comfort. Peace. Sanity. If anyone could get this truth across to seniors, that one critical segment of reform might still survive. And personally, I’d like to have the option of saving the rest of you taxpayers my $1,500.

via Making Sense of the Health Care Debate – Prescriptions Blog – NYTimes.com.

Counseling Improves Life's End. Surprise!

Knowledge, care and compassion really do bring peace. Why should this be a surprise? And why should a few strident opponents prevent those approaching life’s end from having this benefit?

A study appearing in today’s Journal of the American Medical Association points out the benefits of end-of-life counseling, although the widespread misinformation loose in the land may have doomed what should be a significant piece of health reform.

As a political uproar rages over end-of-life counseling, a new study finds offering such care to dying cancer patients improves their mood and quality of life.

The study of 322 patients in rural New Hampshire and Vermont also suggests the counseling didn’t discourage people from going to the hospital.

The Senate bill provision axed by Finance Committee chair Charles Grassley would have allowed coverage for conversations with physicians about things like hospice care, advance directives and treatment options.  But to opponents of reform, it was a handy attack mechanism. They enlisted a few standard bearers like former Alaska Gov. Sarah Palin and media darling Rush Limbaugh to twist the issue into menacing “death panels,” and in no time at all Sen. Grassley had his excuse to excise.

Losers in this are all of us. Eventually, 100% of us will die. Aggressive treatment and expensive, futile procedures are common today to that experience; compassion and peace are harder to come by.

In the new study, trained nurses did the counseling with patients and family caregivers using a model based on national guidelines. All the patients in the study had been diagnosed with terminal cancer. Half were assigned to receive usual care. The other half received usual care plus counseling about managing symptoms, communicating with health care providers and finding hospice care.

Patients who got the counseling scored higher on quality of life and mood measures than patients who did not.

Could someone please get this information to Sarah Palin?

Study: End-of-life advice aids terminally ill.

Ethical dilemmas for one and all

In case you don’t have enough medical/political/ethical dilemmas on your plate, William Saletan tossed out a hefty bunch, in last Sunday’s New York Times Book Review, to chew on:

The most powerful revolutions of our age aren’t happening in Washington, the Muslim world or the global economy. They’re happening in science and technology. At a pace our ancestors couldn’t have imagined, we’re decoding, replicating and transforming the human body. These revolutions are changing how we live, what we think and who we are.

Bodies used to be unalterably separate. Yours was yours; mine was mine. That isn’t true anymore. Organ transplantation has made human parts interchangeable. Thanks to aging and obesity, global demand for kidneys and liver tissue is increasing. Meanwhile, anti-rejection drugs and other innovations have turned more and more of us into potential donors. But supply isn’t keeping up with demand, so doctors, patients and governments are becoming more aggressive. Death is being declared more quickly so organs can be harvested. Rich people are buying kidneys from poor people. Governments are trying financial inducements to encourage donation. The latest proposals, outlined in Sally Satel’s “When Altruism Isn’t Enough: The Case for Compensating Kidney Donors” (2008), include tax credits, tuition vouchers and cash. As pressure grows from the left through socialized medicine, and from the right through free markets, organs will increasingly be treated either as a commodity or as a community resource.

The one that catches my eye (see Looking at One’s Own End-of-Life Choices, 7/30; Palliative Care: Rush Limbaugh vs the Grannies, 7/24, and a slew of other recent posts) is confronted in a reasonable, head-on fashion.

Beyond transplantation and mechanization looms the broader question of longevity. Over the last half-century, the age a 65-year-old American could expect to reach has increased by one year per decade. In 1960, it was 79. Today, it’s 84. Life expectancy at birth has passed 78 in the United States and 83 in Japan. We have no idea where these trends will end. It’s been just six years since we decoded the first human genome and less than two years since we learned how to make adult cells embryonic.

The cost of caring for old people will be enormous, but that’s just the beginning. We’re fixing and replacing worn-out body parts for older and older patients. How much life do we owe them?

The long-run solution, outlined by Robert N. Butler in “The Longevity Revolution” (2008), is to treat longer life as a resource, not just a goal. That means exploiting its benefits, like wisdom and equanimity, while focusing medicine and lifestyle changes on extending health and productivity rather than dragging out the last bedridden months.

It is well past time for us to stop looking at prolongation of life, regardless of quality, as the be-all-and-end-all of health care. Religious groups, right-wing factions and assorted others are screaming that even coverage of honest conversation with one’s physician about prognosis, treatment and options is going to shove people into early graves. But conversations of such sort, and civil discourse in general, are desperately needed.

OK, according to the above statistics this writer still has eight years before my projected demise; but I am definitely one of the grannies Mr. Limbaugh and his ilk profess to be protecting. Thanks very much; rather than drawn-out bed-ridden months I will take wisdom and equanimity any day, if our health care reformists will please focus on addressing health and productivity for all ages. Problem is, the voices of “protection” are drowning out the voices of reason. Which makes this not just a dilemma but a potential national tragedy.

Crossroads – You – The Updated Owner’s Manual – NYTimes.com.