Category: General interest

General interest
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A Life-or-Death Decision in Australia

by Fran Johns

Australian Chief Justice Wayne Martin ruled Friday that quadriplegic Christian Rossiter has the right to end his life, if he chooses, by starving himself to death. Of all difficult medical-ethical issues, this has to be close to the top. I do not applaud the decision, do not support suicide (though I strongly support the right of a mentally competent, terminally ill adult to hasten his or her own dying) and hope Mr. Rossiter changes his mind. He may well do so now.

A series of injuries combined to make the 49-year-old a spastic quadriplegic last year. Mr Rossiter, once a keen rock climber and adventurer, told the Supreme Court his life was once exciting and enjoyable.

But the reality of his situation is far from that now.

Unable to move other than wiggle one finger or toe, unable to take nourishment except through a feeding tube, Mr. Rossiter asked his caretakers, Brightwater Care Group, dozens of times to remove that tube. They went to the court for an answer, and the answer has now come. But Mr. Rossiter is talking to his doctors and says he may change his mind. Should he stick with the decision to remove the feeding tube he will not, in truth, be “committing suicide;” he will be allowing natural death. (In the U.S. he would qualify for hospice care.) Either way, the choice should be his.

There are no winners or losers in this tragic tale. But there is something heroic in one man’s determination to keep control of his own destiny. I admire his gumption, and wish him well.

Quadriplegic Christian Rossiter now has control of destiny | PerthNow.

General interest
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Fitness & Health Reform: Stay Flexible

by Fran Johns

Flexiblility is the new necessity. Political flexibility if one is to make the loop from truth to Sarah-Palin fiction, emotional flexibility if you’re following the market from day to day, mental flexibility just to stay sane with it all.

So maybe we’d better look at the physical. If you can just acquire and maintain a little physical flexibility you’re on the way to fitness, health and inner peace. At least, that’s what the yoga people tell me. Plus a lot of gym people, personal-trainer people and public park people. It is these last whom I tend to believe. I failed yoga (tried and just flat-out failed; I was too itchy for sunlight and speedier movement) and can’t afford a personal trainer. But parks! What a gift to the flexibility and fitness of the world and may we please not be closing them.

In our nearby urban park there is a par course. An array of exercise stations installed usually several hundred feet apart along an outdoor trail, the par course is the Everyman/Everywoman route to flexibility, especially for Boomers and Beyonders. It features a number of stretching posts (each station comes with illustrated instructions about what to do and how many times to do it) plus a variety of sturdily-equipped stations for things like chin-ups and sit-ups and other ups. I am addicted to the par course.

For the first five decades, fitness and flexibility aren’t all that hard to come by. Thereafter, one needs encouragement in this obesogenic (my new favorite word) society in which we live. Par courses are all about encouragement. You can’t manage to hand-walk more than halfway on the parallel bars? Last week you couldn’t get past one-third! Or you’re near despair at the chin-up station, and the hunky twenty-something at the adjacent bar applauds as you master a tiny new fraction of an inch.

By the time the final health reform bill is hammered out the issue of preventive medicine may be hopelessly lost in the shuffle. “Takes too long to produce results.” “Isn’t really worth the cost or the effort.” I don’t buy any of those arguments. Until we tackle the need for lifestyle changes like quitting smoking, losing weight and getting fit we’ll just keep pouring money down the drain of preventable illness. E-mail your senator. Write your representative.

Meanwhile, I recommend staying flexible.

General interest/Health/Money/Politics & Causes/USA
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Tracking Down a Rumor

by Fran Johns

Rumors come, and don’t seem to go. Jim Rutenberg and Jackie Calmes of the New York Times have weighed in again today with a few facts… just in case anyone is interested in facts:

The stubborn yet false rumor that President Obama’s health care proposals would create government-sponsored “death panels” to decide which patients were worthy of living seemed to arise from nowhere in recent weeks.

Advanced even this week by Republican stalwarts including the party’s last vice-presidential nominee, Sarah Palin, and Charles E. Grassley, the veteran Iowa senator, the nature of the assertion nonetheless seemed reminiscent of the modern-day viral Internet campaigns that dogged Mr. Obama last year, falsely calling him a Muslim and questioning his nationality.

Rutenberg and Calmes point out that the doggedly persistent rumor “was not born of anonymous e-mailers, partisan bloggers or stealthy cyberconspiracy theorists.

Rather, it has a far more mainstream provenance, openly emanating months ago from many of the same pundits and conservative media outlets that were central in defeating President Bill Clinton’s health care proposals 16 years ago, including the editorial board of The Washington Times, the American Spectator magazine and Betsy McCaughey, whose 1994 health care critique made her a star of the conservative movement (and ultimately, New York’s lieutenant governor).

This is the core of what all reasonable people know:

There is nothing in any of the legislative proposals that would call for the creation of death panels or any other governmental body that would cut off care for the critically ill as a cost-cutting measure.

But as T/S Contributor Andy Geiger points out, the real issue in health reform is that people are suffering because they don’t have health coverage. Opponents to any reform at all have found a handy way to create this smokescreen by keeping everyone riled up with an utterly false rumor.

I’ve spent much of my adult life working for better end-of-life care, including being forever on a soapbox urging everyone, not just seniors, to consider their end-of-life options, have conversations, create advance directives and then get on with living. I strongly, fully support the good provision in the health care bills that may indeed now get cut.

But we need not to lose this forest for a tree. Rational people have got to continue fighting for a decent system, a decent bill.

False ‘Death Panel’ Rumor Has Some Familiar Roots – NYTimes.com.

General interest
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A Story of AIDS & Living Well

by Fran Johns

As he lay dying of AIDS, my friend Michael gazed over my head in the general direction of the bathroom, managed an almost-chuckle and said, “Nahh, not yet.” This was in 1995, on a foggy gray day in San Francisco, before the discovery of protease inhibitors that would alter the course of the disease. Michael and I had sat together at a dozen similar bedsides as members of the same AIDS support group, but he knew the scene far better than I.

Michael’s sister was due in from the east coast that day. In the bathroom medicine chest were the drugs he knew could end his life in hours rather than in the days or weeks he might have left. Michael’s body had grown frail, but his mind and spirit still soared.

AIDS is a terrible way to die. So are any number of other debilitating illnesses. But many of us believe that honest discussion of prognosis, possible treatments and options are not just empowering, but sane. There is a lot of insanity loose in the land.

A study to be published in the August 15 issue of the American Journal of Respiratory and Critical Care Medicine suggests that many surrogate decision-makers actually don’t want doctors to tell them about options and potential outcomes. I say, OK, fine; don’t ask.

But for someone critically ill who wants to know, why shouldn’t physicians be allowed to tell the truth? How likely am I to regain any quality of life? While my bad cells are being destroyed, what other destruction will happen? What if I choose no treatment at all?

Throughout decades of volunteer work with hospice, AIDS and most recently Compassion and Choices (counsel and support for terminally ill, mentally competent adults) 99% of the critically ill adults I have encountered have gained both power and peace from knowing their choices. They could tell you: it is not about death, it’s about living. Dying is going to happen. Living well takes effort.

In the 1990s almost everyone I knew who had AIDS also had a stash of drugs that could bring his life to a swift end. Very few of them used those drugs. Check the Oregon statistics: far more people request life-ending drugs than ever actually use them.

It’s about safety valves. It’s about  personal choice. It’s about control of one’s own life. It’s about living well.

For anyone to oppose the piece of our complicated health reform that provides coverage for critically ill (and other) individuals to gain understanding of their conditions is irrational and unreasonable. If those opponents choose to keep their heads in the sand that’s fine with me; but why deny the rest of us the right to reason?

Michael died that night, without opening the medicine chest. He could have told you he’d had enough. He would have told you that knowing the means to end his suffering was available had given him great strength and a degree of peace for over a year. He would have told you that straight talk from his physician (who also died of AIDS a few years later) empowered and emboldened him in a remarkable battle for life.

It was never about dying; it was about living well.

General interest
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Straight Talk Q&A on Health Reform

by Fran Johns

One of the best fact-checks re health reform I’ve seen lately was just sent out by Ricardo Alonso-Zalvidar for the Associated Press:

Former Republican vice presidential candidate Sarah Palin says the health care overhaul bill would set up a “death panel.” Federal bureaucrats would play God, ruling on whether ailing seniors are worth enough to society to deserve life-sustaining medical care. Palin and other critics are wrong.

Nothing in the legislation would carry out such a bleak vision. The provision that has caused the uproar would instead authorize Medicare to pay doctors for counseling patients about end-of-life care, if the patient wishes. Here are some questions and answers on the controversy:

Q: Does the health care bill promote “mercy killing,” or euthanasia?

A: No.

Q: Then what’s all the fuss about?

And here’s where it all started:

A: A provision in the House bill written by Rep. Earl Blumenauer, D-Ore., would allow Medicare to pay doctors for voluntary counseling sessions that address end-of-life issues. The conversations between doctor and patient would include living wills, making a close relative or a trusted friend your health care proxy, learning about hospice as an option for the terminally ill and information about pain medications for people suffering chronic discomfort.

The sessions would be covered every five years, more frequently if someone is gravely ill.

Alonso-Zaldivar covers all the basics in this brief, to-the-point article. My personal favorite opinion is also in there. It’s a comment made by Monsignor Charles Fahey, 76, a Catholic priest currently chairman of the board of the National Council on Aging:

“What I have said is that if I cannot say another prayer, if I cannot give or get another hug, and if I cannot have another martini – then let me go.”

Maybe we should put that martini provision in the bill.

via Health care overhaul bill Q&A.

General interest/Health/Politics & Causes/USA
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Justice Souter's Retirement Housing

by Fran Johns

It turns out not even Supreme Court justices are exempt from the dilemmas of senior housing. Too many steps? Too many books? What’s a retiree to do?

When he retired from the Supreme Court in June, it was expected that Justice David H. Souter would return to his beloved family farmhouse in Weare, N.H., a rustic abode with peeling brown paint, rotting beams and plenty of the solitude he desired. While the new home is only eight miles from his rustic farmhouse, the two could be worlds apart.

But Justice Souter, an individualist on and off the bench, decided to move.

On July 30, he bought a 3,448-square-foot Cape Cod-style home in neighboring Hopkinton listed at $549,000. The single-floor home, for which he paid a reported $510,000, sits on 2.36 well-manicured acres.

This is not going to work for the downsizers who don’t have access to a cheap, reliable lawn service. But it’s easy to pinpoint a few of Justice Souter’s upgrades in the downsize:

The farmhouse has no phone lines; the Hopkinton house has “multiple,” according to the real estate listing. The farmhouse’s lawn was spotted with brown; the Hopkinton house has a verdant lawn and neatly trimmed hedges. And for Justice Souter, 69, who is known to be a fitness buff, there is a home gym as well as a spa bath.

Or, he can just mow his own lawn. The core issue, however, is closer to those reported by hundreds who are opting for retirement apartments, urban condos and other housing choices mentioned in earlier columns.

Justice Souter told a Weare neighbor, Jimmy Gilman, that the two-story farmhouse was not structurally sound enough to support the thousands of books he owns, according to The Concord Monitor, and that he wished to live on one level.

Perhaps Justice Sotomayor will want to keep a lid on her library shelves.

Off the Bench, Souter Leaves Farmhouse Behind – NYTimes.com.

General interest/Health/Money/Politics & Causes/USA
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Ethical dilemmas for one and all

by Fran Johns

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.

General interest
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Independent living – An all-generations issue

by Fran Johns

My friend Tom, well past retirement age, worries not only about his own future as calamitous health problems mount up, but with the future of his son, who has Asperger’s syndrome. Long an advocate for mental health and volunteer with the National Association for Mental Illness (NAMI), Tom knows the pitfalls and opportunities and options; none provide guarantees for his son’s future.

One innovative possibility for shepherding people with autism (Asperger’s is a form of autism) into a brighter future is being launched this fall in California, and was outlined by Michael Bernick, former Director of the California Employment Development Department, in an op ed piece in today’s San Francisco Chronicle.

The California State University East Bay campus in the Hayward hills is the site of an unusual experiment in higher education for people with autism. Starting in the fall quarter, college-age autistics will be encouraged to attend and build an educational community; one that draws on the autistics’ unusual academic strengths. The experiment will test the possibilities for autistics in a university setting, and more generally the possibilities for a range of students with disabilities.

Twenty years ago in California and across the nation autism was largely invisible. Today, rarely a day goes by that there is not an article regarding autism in the news media. The shelves of bookstores and libraries are filled with books on causation of autism, early intervention, parenting and even “warrior mothers” of autistics.

In earlier generations, people with autism and a variety of other mental illnesses that might well have responded to education and treatment wound up in institutions. Boomers are the first generation to consider people on the autism spectrum in two new lights: they are many, and they may be able to live with a degree of independence.

A (California) Senate report estimates that by the year 2012 at least 70,000 autistics will be registered with the state’s Regional Center system, and the number of Californians with a condition on the autistic spectrum will number more than 350,000. The emerging Center for College Students with Autistic Spectrum Disorders is an attempt to open wider higher education for autistics. The young adults with autism, born in California in the late 1980s and early 1990s when the number of diagnosed cases of autism grew geometrically, are now reaching college age. They and their parents are faced with life after high school. In particular, they are challenged to find alternatives to a life of dependency and Social Security payments that has been the main lot of adult autistics in California.

Those of us on my block have watched a young neighbor with autism grow into adulthood, sometimes with exasperation but always with a degree of affectionate admiration. We despaired over the decibel level of his voice, but there weren’t a lot of dry eyes by the end of his bar mitzvah. Maybe we’ll carpool to his college graduation.

As with the need for older adults to remain independent and as productive as they can or wish to be, autistics aren’t the only ones who stand to benefit from such programs as the one coming to Cal State Hayward.

Imagine Raymond Babbitt of “Rain Man” in college. Might it not be a better alternative for him, and much less expensive for society, than institutionalization or the SSI/SSDI government system? Might he even bring unusual skills that can enrich university life for others?

via College for autistics.

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