Sisters and Heroes

When Red Room, my good Authors site (surf on over) invited everyone to blog about heroes this week I couldn’t resist posting the eulogy I wrote for my sister Mimi a few months ago. And can’t resist morphing it over here too, so herewith:

Mimi was my hero. Beginning with the day she stood down the Alpha kid in our Ashland VA gang. We were about 6 and 8 at the time. Beverly Ann Brooks kept the gang under control by placing her hands on her hips when she didn’t get her way, and declaring, “Well, I QUIT.” I was totally in awe of Beverly Ann. But one day when everyone wanted to do one thing and Beverly Ann wanted to do another and pulled that on us, my sister Mimi drew herself up to her full several feet, put her own hands on her hips and said, “Well, quit then, Beverly Ann.” I still draw on that moment for strength in times of distress.

So we grew up, with Mimi rather graciously sharing the power she acquired that day. And then we went off to Randolph-Macon Woman’s College, where Mimi regularly bailed me out when I overspent my budget – this was a time when bailouts involved several trillion dollars less than today, but they were still critical in my life. At her senior piano recital I was a nervous wreck, she was cool as a cucumber, the recital was flawless, and I remember being so proud I could hardly contain myself.

After I graduated, Mimi and my college roommate Pat and I got an apartment in downtown Richmond where we set the town on fire. Literally. One of us, who will remain nameless, left the sun lamp on late one night and we woke up to an inferno. Pat and I immediately took off – we did get the other apartment dwellers up and out, but to be truthful we were interested in our own hides. Mimi calmly sat down by the phone and called the fire department, while she took the curlers out of her hair.The neighborhood gathered in the middle of the street, watching the firemen toss our furniture over the balcony.It was 28 degrees.Pat and I nearly froze until somebody got us coats; Mimi was fully clothed with her hair combed.Those of you who knew our mother will appreciate that when she learned of her children’s brush with death her first response was, “Oh, dahling. Any lady would have stopped to put on a bathrobe.” I don’t think Mimi was interested in being a lady, she just thought ahead.

Eventually I went south to Atlanta and Mimi went northwest to Michigan. She immediately learned that southern drawl equated to dumb girl, so she sped up her vocabulary to a point at which I could barely understand her.So I talked her into moving to Atlanta, where she began a long and very distinguished teaching career.

Mimi was pursued by the sharpest and best-looking men across four states and the District of Columbia. But when she met Tom I think she recognized the person with whom she could spend nearly 50 years and never be bored. Leslie was the light of her mother’s life from the day she was born. There is, though, one issue that should probably be brought into the open here. When our kids were in high school, Leslie – along with hundreds of other teenagers – was caught up in a movement led by a Christian youth minister who will also remain nameless, since he may still be out leading movements and helping kids grow up like Leslie and we should all be grateful. But he was some distance to the theological right of many of us, and it drove Mimi nuts. Finally one day I said, “You know, Meem, given all the things we have to worry about with our children these days, I’d pick ‘too religious’ every time.” So maybe I was her hero at that point.

Mimi’s health became fragile over the past decade, and she didn’t do fragile very well. She did piano, alto, organ, accordion, Spanish, tennis, bridge, dinner parties – or declaiming on her incomparable grandchildren – she did all that fine. I am proud of her refusal to do fragile any more. I do know that heroes are masculine and I should’ve said heroine. But in the good old gender neutral a Hero is omniscient.I’m of that old school, and I’m also from woo-woo California and so I believe Mimi is now here, and omniscient, and she is still my hero.

End-of-Life Care is Losing to Lies

Here is some of the current worst news on health reform:

The Senate Finance Committee’s health care plan will not include provisions dealing with end-of-life care, now one of the more controversial topics in the health care debate, the committee’s top Republican said on Wednesday.

Senator Charles E. Grassley of Iowa said in a statement that the committee “dropped end-of-life provisions from consideration entirely because of the way they could be misinterpreted and implemented incorrectly.”

If anyone knows misinterpretation, it’s Senator Grassley. He’s the originator of such enlightened parting phrases as the one he tossed out at an Iowa meeting Wednesday, about not wanting a health plan “that will pull the plug on grandma.” There is, of course, no grain of truth in that phrase, but its repetition does exactly what Sen. Grassley and his ilk wish: whip the opposition to any real reform into an emotional, unthinking frenzy. And they are winning the war against reason one battle at a time.

A Senate Finance Committee aide confirmed that the panel was not discussing end-of-life measures, adding that they were “never a major focus” of the committee’s negotiations.

House committees have passed legislation that would provide Medicare coverage for optional counseling sessions on end-of-life services.

But as people like Senator Grassley, and former N.Y. Lt. Governor Betsy McCaughey who sought fame and perhaps fortune by starting this whole flap, keep the country inflamed with misinformation the chances of decent legislation rising from these ashes grow dim.

The hopeless optimists of the land continue to believe that calls and letters and e-mails of sanity will convince our legislators that the country will rally around a decent bill… but Mr. Grassley and Ms. McCaughey are making optimism difficult.

via Senate Bill Will Not Address End-of-Life Care – Prescriptions Blog – NYTimes.com.

Health Care that Works: Integrated Medicine

President Obama speaks at a Portsmouth, NH event on August 11 (Darren McCollester/Getty)
President Obama speaks at a Portsmouth, NH event on August 11 (Darren McCollester/Getty)

Last night’s NewsHour included a segment that gives me hope: a clip of President Obama citing integrated medical systems that are actually working, followed by an excellent in-depth piece on the Billings MT clinic that proves the point. Billings is only one of such examples.

How do they work? By getting everybody under one roof and coordinating patient care. By letting different specialties work together, rather than sending a patient from one to another to another. By compensating doctors with salaries. This last is a sticking point: if you own a piece of the MRI business, for example, you might just be inclined to order more MRIs. Or you’re tied to the work-harder-get-richer principle. But more and more doctors seem interested in having a life, in not being on call 24 hours a day, in earning good money (integrated system compensations compare well with private practices) while focusing on patient care — without over-prescribing and over-ordering to guard against getting sued.

Why does this make such good sense? Because most patients (not all) sing its praises. Because integrated care saves money by keeping people healthier, reducing unnecessary procedures, keeping people out of hospitals… the list goes on.

My oncologist retired a year after a 2006 breast cancer episode. I went to meet my new choice on the 8th floor of Kaiser Medical Center in March, 2008. She looked at lab tests (2nd floor), spotted anemia, said I shouldn’t be anemic, ordered colonoscopy/endoscopy. G.I. doc (2nd floor) found celiac disease in June, connected me to nutritionist (across the street) and to endocrinologist (6th floor) who helped me design diet plus vitamins etc so I’m healthy again. Physical therapist (4th floor) discussed fitness plans. All of these specialists, my surgeon (2nd floor) and my primary care doc (4th floor) are friends. All respond to frequent e-mails within 24 hours, saving multiple calls and appointments. All post test results, etc on my personal web page. Thus, over a 3-year period: one overnight hospitalization for mastectomy, one out-patient procedure, a reasonable number of appointments, healthy patient.

Not everybody loves Kaiser, or the other clinics being studied. But it’s a model that works.

A Story of AIDS & Living Well

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.

Reading Along with David Souter

You have to love David Souter. First he tosses the world’s best tenured job out the window when jobs aren’t exactly going begging, then he doesn’t announce a book deal, then you start learning about his digs. The New Hampshire farmhouse, it turns out, wasn’t exactly a castle: no phone, no running water, a definition of Souter-rustic. Then you learn he has quit the farmhouse in Weare for a Cape Cod in Hopkinton. How many people do you know who uproot from Weare and resettle 8 miles away in Hopkinton? I learned this from a learned piece in the New York Times and explored some of its implications on my True/Slant blog (you’re invited.)

Here, though, is why I love David Souter: his books were getting too heavy for the farmhouse to handle. When you get too many books, you buy a house with stronger shelves. David Souter has his priorities right.

My father might have rivalled the good Justice. When he retired, after 28 years, from the 3-story house owned by the college he worked for, it fell to my sisters and me to deal with the books. Over a period of roughly two years we furnished a small room in the college library, gave away truckloads to anyone with a book-yearning appearance, divvied up another hundred or so and finally ripped the backs off — and this is as painful for the ripper as for the rippee, I suspect — of the rest so they could go to the country recyclers.

My current, final husband is in this same rarefied class: books are in stacks on the floor where they overflow the wall-to-wall shelves. But when a friend publishes something new or the Daedalus catalogue comes… well, what’s a reader to do.

I submit this Souter Plan for reviving the economy: accumulate more books, buy more shelving, move to a house with stronger walls when necessary. (Excepting this writer, please; I asked for a pre-nup that stipulates I will die first so I don’t have to deal with it all.) If everyone followed this plan we wouldn’t need Cash for Clunkers to stimulate the economy, and we’d probably have world peace because we’d all be too busy reading.

Straight Talk Q&A on Health Reform

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.

Justice Souter's Retirement Housing

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.

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