Being At One with Desmond Tutu

credit acpinternist.org

It’s almost like being on the side of the angels, claiming kinship-by-association with Desmond Tutu. Ever since the retired Anglican bishop, South African social activist, Nobel laureate and all-around pretty saintly gentleman came out in favor of this writer’s cause, Death with Dignity, it’s been a cause for celebration. Bishop Tutu’s eloquent statement, published in The Guardian of July 12, was prompted by a bill currently under consideration by Britain’s House of Lords – which has now gone farther than many had expected and may indeed become the law of the land in the Mother Country.

Death with dignity – physician aid in dying, the legal right for a terminally ill person to hasten the process if she so chooses – has slowly been gaining in the U.S. The Oregon law has proven successful for well over a decade, and DWD is now legal also in New Mexico, Washington, Vermont and Montana (where it’s considered a private issue between patient and doctor.) Bills are currently underway in a handful of other states. And in California, the movement’s leading organization, Compassion and Choices (on whose Northern California leadership council this writer still serves) is mounting a multi-million dollar campaign to legalize death with dignity in that state. Past efforts in California, where polls show a large majority of citizens support DWD, have failed by very small margins. It’s interesting to note that opposition to end-of-life choice comes largely from the same religious and conservative groups that oppose women’s rights to reproductive choices; at least one out of two of this writer’s causes is gaining ground.

Support for Death With Dignity from across the ocean  is encouraging. And when it comes from Desmond Tutu it carries a particularly gratifying weight.

Bishop Tutu, acknowledging that he is himself closer to the end of life than its beginning, said in his statement, “I have been fortunate to spend my life working for dignity for the living. Now I wish to apply my mind to the issue of dignity for the dying.” That means, he explains, allowing death to come as naturally as possible and avoiding any machines that would artificially prolong life.

“Dying is part of life,” Tutu writes, “…And since dying is part of life, talking about it shouldn’t be taboo. People should die a decent death. For me that means having had the conversations with those I have crossed in life and being at peace.” He also advocates completing advance directives, something Compassion and Choices emphatically promotes. Forms are available on the website. Whatever your age or state of health, if you haven’t done these things yet, this very minute is a good time to start.

Bishop Tutu declares the dying days of his friend Nelson Mandela “an affront.” When the widely beloved South African leader was televised with political leaders Tutu points out that Mandela “was not fully there. He did not speak. He was not connecting. My friend was no longer himself. It was an affront to Madiba’s dignity.”

The good bishop is having none of that.

“I revere the sanctity of life,” he writes, “but not at any cost. I confirm I don’t want my life prolonged… I would probably incline towards the quality of life argument.”

The entire statement is well worth the time of every reader. Check it out – after you’ve completed your own advance directive.

The Intriguing Invisible Audience

The questions were sharp, incisive. The comments were poignant, sometimes wrenching, sometimes funny. But the really funny thing was that I couldn’t see a soul in the audience.

This was a recent talk and group discussion with the Senior Center Without Walls. I was on the phone in my living room, the moderator was somewhere else, and some 20 to 30 seniors – most of them old, if unseen, friends by now – were sitting comfortably in their San Francisco Bay Area living rooms. Who knew?

This particular discussion dealt with end-of-life issues, although I got in (with advance permission) an introductory plug for Perilous Times: An inside look at abortion before – and after – Roe v Wade, and my current soapbox about preserving reproductive justice. I talked briefly about my longtime involvement with Compassion and Choices, about the work of that excellent organization, and the multiple benefits of considering one’s own mortality before one’s own death is knocking at the door. From the various phones came personal tales – “My husband died exactly as he wished…” “one member of the family wanted to contradict what (the dying person) explicitly wanted…” And questions about what C&C can do (counsel, advocate, support) and even – every nonprofit representative’s favorite: “Where can I send money?”

Audience members come and go at will, during Senior Center Without Walls discussions, and the pretty constant beeping that heralded the comings and goings made the entire event feel like a free-wheeling open house. Which is, in fact, not far from the truth.

Senior Center Without Walls participants play bingo, read plays, join support groups for everything from low vision to LGBT issues, bird-watch (guided help with identifying the birds seen from your window) and share in adventures that range from armchair travel to sing-alongs.

I hope they learned a little from this discussion leader; I learned a LOT from the scattered seniors of Seniors Without Walls.

 

 

 

Laboratories of the States: The good… and then, the very bad and ugly

This essay first appeared on Huffington Post

Will a few states rule the United States? Or fundamentally change it? And if so, who are the winners and losers? Depending on your point of view, this “laboratory-of-the-states” business is good news today… or not.

The metaphor dates to the dissenting opinion of Supreme Court Justice Louis Brandeis in a 1932 case, New State Ice Company v. Liebmann and is often used today to assert the success of one social program or another. The best most recent — and decidedly successful — laboratory-of-the-state demonstration is Oregon’s Death with Dignity law. This writer’s extraordinary attorney friend Kathryn Tucker published a paper in the 2008 Michigan Law Review, when she was Director of Legal Affairs for Compassion & Choices, titled “In the Laboratory of the States.” Tucker wrote, “Because Oregon’s Death with Dignity Act has proven both useful and harmless, this Article concludes that it is time for other states to follow Oregon’s lead and enact their own legislation to allow their citizens an alternative to what otherwise could be a prolonged and painful death from terminal illness.”

Tucker deserves much of the credit for expanding the Oregon law into the movement that now seems a clear national trend, along with Compassion & Choices (full disclosure: this writer has long been a C&C supporter, volunteer and local board member). Washington and Vermont have passed similar bills and Montana wisely concluded that it’s none of the state’s business what a doctor and patient decide to do, making physician aid in dying now legal in those states. A handful of other states have pending bills and still others are mounting strong movements. So Oregon’s laboratory of success is likely to be the nation’s overall policy in the foreseeable future, and we’re all better off for that. (Opposition has come from religious and political forces that hold onto a belief that God requires some sort of existential suffering be visited upon Her dying creatures.)

The laboratory-of-the-states pathway is both effective and well trodden, said San Jose State Professor/author Larry Gerston at a recent Commonwealth Club political panel event. The panel was looking at other current trends, but Gerston specifically cited the Oregon Death with Dignity model as an example of how it all works.

Now — what if Texas becomes a laboratory for the denial of reproductive rights?

In Texas, just for a rough overview, recent laws have passed requiring parental notification and now parental consent; requiring abortions to be performed in ambulatory surgical centers with hospital-grade operating rooms; requiring women who seek abortions to submit to ultrasounds and then wait 24 hours for the procedure. The list of harsh, medically unnecessary restrictions and requirements is long, and a clear violation of both ‘best medical practice’ and women’s rights.

It is worth noting who are the winners and losers in these state laboratories. In Oregon, the winners are we the people everywhere. Few of us would turn down the right to a humane and compassionate death, which is made a possible choice by death-with-dignity laws. Losers? No one. No one is compelled to choose a hastened death, anywhere, any time.

In Texas, however, the scorecard is seriously skewed. The winners are archconservatives that have learned that this is a good way to get votes. Winners also include those, men and women alike, whose religion teaches that life begins at conception and thus all abortion is wrong. This writer can appreciate those who hold such views, but it is not possible to uphold the rights of a fetus without denying the right of the woman in whose body it resides. Many of us come down on the side of already-alive women and on the doctrine of church/state separation.

And the losers in Texas: women. All women. Primarily they are women without money or resources, who are frequently disadvantaged and disproportionately women of color. These women are already turning to desperate measures to end unwanted pregnancies; increasingly they are turning up in emergency rooms with failed attempts to self-abort. To a lesser degree, but still worth considering, the losers include those — men, women, boys, girls — who need the other services provided by rapidly closing clinics: birth control, sex education, STD testing, breast cancer screening and many other critically important needs that will now go unmet.

It’s hard to contemplate the win-lose picture of this Texas laboratory. But if it indeed becomes a laboratory-of-the-states argument in upcoming Supreme Court cases, and elsewhere, the losers will be all of us. You and me. We the people.

On choosing one’s words…

I was taken to task, rightly so, by a reader who categorized my saying “no one… has an abortion without anguish” (you can read B’s articulate comment, and my response, in the 2/22 Comments) as “hokum.” She might also have said “hogwash.” Mea culpa. “Anguish” was a poor descriptive choice. “Serious thought” maybe; “self-reflection,” “concern.” Actually, the decision does involve anguish for many women, especially those whose rights are being denied by lack of access or harsh state restrictions.

But one word can wreak havoc.

Take the hyphenated word “pro-life,” which has been appropriated by those who are ferociously anti-woman. As if the issue of abortion — always complex and private, and occasionally anguishing — involved nothing at all beyond the (potential) life of a fetus. I consider myself ferociously pro-life, it’s just that I value the life of a woman. And am pro-woman’s-life enough to honor and trust her ability to make her own decisions about her body.

Or the emotionally charged word “suicide.” Those of us who believe in the individual’s right to a compassionate and dignified death have worked hard to get that word out of the discussion. Suicide is the desperate act of a despairing person; “physician aid-in-dying” is a compassionate choice made by a terminally ill, mentally competent adult.

Word choices took much of the focus in a fascinating panel on “Defining Death” sponsored recently by the University of California San Francisco Medical School. More about that event on HuffingtonPost as soon as I can get to it. Cases under study included the tragic, ongoing story of 13-year-old Jahi McMath, and the equally tragic story of 14-week-pregnant Marlise Munoz, whose brain-dead body was briefly kept on “life” support because the hospital and the State of Texas placed the potential life of that pre-viable fetus above the expressed wishes of her husband, parents and even Munoz herself. The distinguished UCSF panel of experts on medicine, law and ethics spoke repeatedly of how much anguish — the word definitely fits here — might have been prevented if only a few, kind words could have replaced some of the jarring words that unfortunately must eventually be said.

Imagine you’re the patient, or family, or attending healthcare worker (try to leave the lawyers out of this.) When does a moments-ago-healthy person become a “corpse”? A “dead body”? Who decides if a pre-viable fetus is a “person”? How can the average person even understand “brain-dead”? If you bring the lawyers in, you encounter “property.” In more than a dozen states there are laws on the books that say that if a pregnant woman dies her body must be maintained until the fetus can be delivered… no matter what advance directives she may have that specify her wishes to the contrary. One family fought against this outrageous miscarriage of justice by claiming their dead loved one’s body — which was, in the eyes of the law, their “property.”

It’s a scary world we live in. But that word JUSTICE. If we can only hang onto that one.

 

 

End-of-life compassion slowly winning

If you think you might die some day, and you’d like to do it with as much dignity and as little pain as possible, things are looking up. Which is encouraging to me, a believer in end-of-life and reproductive rights both — and progress in one out of two causes is something to cheer about.

credit acpinternist.org
Credit acpinternist.org

The outlook for a compassionate end to this life in the U.S. continues to brighten. In a recent New York Times article summing up advances that are being made in multiple states,reporter Erik Eckholm quotes my good friend Barbara Coombs Lee, President of Compassion and Choices: “There is a quiet, constant demand all over the country for a right to die on one’s own terms, and that demand is likely to grow as the baby boomers age.”

Lee, a baby boomer herself, is in a position to know. She has been at the forefront of the death with dignity movement since it was in its infancy. We first met when I was researching Dying Unafraid (Synergistic Press, 1999) and she was head of Compassion In Dying, headquartered in Seattle. That group had formed, I learned during a weekend spent with leaders and volunteers in the late 1990s, “because we got tired of reading headlines about people with AIDS jumping off of highway overpasses. And we thought there had to be a better way to die.” Compassion In Dying later merged with End-of-Life Choices, which had itself grown out of the somewhat more in-your-face Hemlock Society, to become Compassion and Choices. (And I am proud to have been a part of C&C since its inception as a volunteer, former local board chair, current leadership council member and general cheerleader.)

In those early days, all was not optimism. While Oregon was proving that a physician-aid-in-dying law could work, efforts elsewhere were failing with heartbreaking irregularity. The one most painful to me culminated in the defeat, in 2006, of a bill which would have legalized compassionate dying — in other words, with the aid of one’s physician if one so chose — in California. Assembly members Patty Berg and Lloyd Levine introduced the legislation, and polls showed overwhelming support among Californians, including a majority of California physicians. Victory seemed all but certain, despite a vigorous and expensive campaign against the bill by the Catholic Church (not most Catholics, just Catholic officialdom) and the California Medical Association (of which a small percentage of CA doctors are members.) At the judiciary committee hearing chaired by then CA Senator Joe Dunn  — who had loudly proclaimed his support —  Dunn suddenly had a change of heart. Something about a conversation with his priest, he said in a rambling commentary. Dunn then cast the deciding vote against the bill and it died an unnatural death in committee. A few weeks later Dunn was termed out of the California legislature and took a job — surprise, surprise — as CEO of the California Medical Association. It was not my personal most encouraging experience with the democratic process.

Now, however, sanity is prevailing. The option of choosing a compassionate death is legal in Washington, Vermont, Montana and New Mexico and the cause is gaining in other states. As Steve Heilig, another highly esteemed friend who is co-editor of the Cambridge Quarterly of Healthcare Ethics, points out in a current letter to the New York Times, “Progress is possible if carefully and ethically pursued.”

If only there could be a careful, ethical pursuit of progress — instead of the ongoing, reckless, politically and religiously-driven backward march we’re seeing — for reproductive rights.

You CAN go home again…

… but it won’t be quite the same.

I’m just home from a trip to Washington, DC

commons.wikimedia.org
commons.wikimedia.org

for a nice event at The Corcoran Gallery that included a wide-ranging assortment of events — business, pleasure and in between. There were old faces, new faces and vastly altered landscapes, familiar turf and unfamiliar weather.

There were serendipitous treats like catching up with old friends I’ve not seen in a few years or a few decades… in the case of old friend  Roger Mudd, it was a matter of catching up on some 60 years.

Photo credit W&L.edu
Photo credit W&L.edu

And a side trip to my childhood hometown of Ashland, VA, where the characters of many of my short stories roam.

Thomas Wolfe, whose book title inspired this blog post, put it this way: “Some things will never change. Some things will always be the same. Lean down your ear upon the earth and listen.” I wasn’t inspired to lean down my ear on the frosty February earth of Ashland (although the phrase brings fond memories of leaning our childhood ears upon the train tracks to figure out whether a locomotive was en route,) but it was fascinating to find things changed, and unchanged:

The dining room where I ate dinners for some 20+ years features a different wallpaper and is decorated with different art, but it’s still a warm and welcoming room and I was incredibly blessed to be invited to a “Homecoming Dinner” therein with family, old friends and the now residents of the home. 2014-01-31_18-53-31_136

Randolph-Macon College is unchanged in some of its gracious, over 100-year-old buildings and long familiar original campus on which I grew up, but surely changed in the rapidly expanding new campus… and the student body which was all male in my long ago childhood. It was a very special treat to meet with some of the current students and faculty, in class and at lunch. That story follows in a few days here; I hope you’ll stay tuned.

Faces of hope for women’s rights

The universe may, after all, be unfolding as it should (apologies to Max Ehrmann’s Desiderata.)

This could be encouraging.

Within the past several days I’ve been to a number of events concerning our rapidly disappearing reproductive rights; I’ve discussed end-of-life options with a friend newly diagnosed with ALS; and — this one puts things into a new perspective — listened to the remarkable nuclear arms experts Eric Schlosser (Command and Control: Nuclear Weapons, the Damascus Accident and the Illusion of Safety) and Joseph Cirincione (Nuclear Nightmares: Securing the World Before It Is Too Late) explain how easily we could obliterate one another.

StethoscopeMore on compassionate dying and nuclear weaponry later. I just finished talking with about 40 young medical students and healthcare professionals about reproductive rights. Many are students, and members of an excellent organization, Medical Students for Choice. They are committed to protecting women’s health, educating other healthcare providers and the general public about women’s health needs, and making sure that women everywhere have access to safe, legal abortion.

These young people can make believers of you. Belief, that is, that women’s rights will indeed be protected and that lack of access will not lead again to women dying from botched abortion. The articulate president of MSFC (who bought a copy of Perilous Times and said everyone should know these stories; no wonder I’d follow him anywhere) told me he was certain that each and every member of MSFC would continue to provide safe procedures even if abortion becomes illegal again; but he also said, “I don’t believe that will ever happen.”

I wish. But even though I am a hopeless optimist I’m not optimistic about Roe v Wade staying in place once it’s challenged at the Supreme Court level, which is likely to happen soon. Many of the young healthcare professionals were also upbeat with the belief that women don’t stand to be harmed as severely as pre-Roe “because medical abortion is so simple now, and misoprostol (the abortifacient pill) so readily available.” I wish again. Many, many women today are already facing harm because they take misoprostol without proper supervision, in improper dosages or too late. But these women are — as obvious in the statements of the young professionals at this seminar — essentially invisible. They are poor, disempowered and living in remote (even not so remote any more) areas where they have no access to safe abortions. They’re not dying in droves — one of the things that prompted passage of Roe v Wade — but they are often harming themselves… or having more unwanted babies.

I’m siding with the students. Their dedication and commitment are an inspiration and their hope for the future admirable. My hope is just that they are right… and the universe will continue unfolding, with justice, as it should.

Dementia, the last taboo

Dementia, the elephant in the conversational room, has begun to lift its trunk and trumpet around. Ask anyone over 60, or almost anyone whose parents are over 60, to list the Big Fears, and dementia will be up there at the top. But precisely because it defies solution, can’t be predicted and won’t go away, it has long been among the great taboos for meaningful public discourse.

Perhaps that’s beginning to change. There are a few answers emerging as alternatives to warehousing, or being warehoused, in an institution somewhere when Alzheimer’s or other dementia takes over. Some of them make very good sense. All of them require consideration with a cold, clear eye while still sane and healthy, and that’s when the elephant in the room needs to be shoved aside so conversation can happen.

At a recent meeting of advocates for improved care and expanded choice at the end of life, a small group gathered to discuss raising awareness for Compassion & Choices, one of the leading organizations addressing these issues today. The talk quickly turned to the subject of advance directives – everyone in the room had such documents in place – and from there to dementia.

“I suppose if my Alzheimer’s gets really bad I won’t care any more,” said one, “but I absolutely hate the idea that the images my friends and family will be left with won’t be images of who I am at all.” Said another, “To me, it’s the money. I just don’t want every last penny I want to leave my family going instead to some nursing home.” And a third added, “My husband has promised to slip me poison.”

Actually, there may be better solutions, even if they remain only partial solutions. Compassion & Choices now offers a “Dementia Provision” document that may be attached to one’s advance directives, stipulating that in the event he or she winds up with dementia the signer declines all measures that would prolong life. Author/ethicist Stanley Terman is taking this concept farther (devising stronger, more explicit instructions) for those wanting to avoid prolonged life after dementia strikes. While I don’t always agree fully with Dr. Terman (except for his inclusion of a story of mine in The Best Way to Say Goodbye; I don’t get royalties) I applaud his dogged search for answers, partial or absolute, to a problem that defies easy solution. The conversation is also being aided and abetted by some good new books, including John West’s The Last Goodnights, and everything starts with the conversation.

If the conversation continues, the elephant may leave the room.

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