John McCain & Death with Dignity

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Official portrait (Wikipedia)

John McCain did it right. Not just carefully constructing the last word in his acrimonious exchange with Mr. Trump, or in the countless ways he demonstrated patriotism, dignity & courage and pointed out how democracy is now being threatened. I disagreed with his political positions more than I agreed with them, but in the last few years I’ve sent him more than one thank-you letter. The thumbs-down elicited my most enthusiastic note. But here’s what else he did right:

John McCain kept control of his dying – which is to say, the last piece of his living. In so doing, he left one more gift to America: some suggestions about how to die.

We spend untold energies, and untold billions of dollars, on the national obsession with avoiding death. In exremis we go to the Emergency Room – where tests and procedures are undergone, suffering is often prolonged and increased, and costs skyrocket.

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Talking about dignified death with Kathryn Tucker

Here is some food for thought from a recent Arcadia Healthcare study: Just looking at the costs (forget the pain & suffering) of the final months of care according to where that final month took place – for the 42% who died at home, $4,760. Another 40% died in the hospital: $32,379. Dying in a nursing facility came in second from the top at $21,221.

I have no idea where John McCain was when he died, but I’d be willing to bet he was at home. Home is where 99% of us say we want to die – but we don’t work very hard at making that happen. Instead, we put off making plans, writing advance directives, talking to friends and family about what we want, planning our funerals. Seriously now, do you have anything written down about what you’d like for your memorial service? Senator McCain reportedly spent eight months at the end of his life lining up eulogizers, specifying music, contacting speakers, saving his family that often burdensome task.

Kathryn Tucker 9.20.18

Kathryn Tucker

But it’s the business of dying – living as one chooses right up until the time of death – that McCain seemed to do so well. Not many of us pay such attention. He apparently didn’t need to hasten his dying, but we would all do well to know about hastening, whether we choose it or not. Even in states where medical aid in dying is legal, dying patients put off making their own decisions, or find out too late that their physician will not participate. Fortunately for us all, there are people like Kathryn Tucker, Executive Director of the End of Life Liberty Project, fighting to protect and build the movement toward death with dignity. (I was privileged to host an event for the distinguished Ms. Tucker recently, hence the photos.)

So maybe you’re not as strong-willed as John McCain. Maybe you don’t have access to the Navy Band for your memorial service. But you can acknowledge that dying is something we humans do and write down what you want (or don’t want, like painful, expensive last-minute heroic measures) for yourself as you’re doing it. You can TALK to family and friends. You can send a contribution to ELLP. Or Death with Dignity or any on the other organizations working to make death with dignity possible.

 

Life: a sexually transmitted, fatal condition

Life: a sexually transmitted, fatal condition

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Life is a sexually transmitted condition that is invariably fatal.

That well-phrased truth – often attributed to British author Neil Gaiman – led off a talk not long ago at San Francisco’s Commonwealth Club by Atul Gawande, physician and author of, most recently, Being Mortal. Gawande’s message was all about being mortal, and facing that inevitable death in advance. In other words, if we mortals could please just admit our mortality – and talk about what we’d like our final days/weeks/months to look like – much good would result.

This writer has been on that soapbox for several decades.

Gawande and his interviewer, University of California San Francisco professor Alice Chen MD, spoke of the need for shared decision-making, shifting away from the paternalistic ‘doctor knows best: here’s what we’re going to do for you’ attitude to the physician giving information and involving the patient in making choices. But their decision-making would still put the doctor first and patient second. This writer respectfully disagrees.

Atul Gawande

Atul Gawande

In response to a question from the audience, Gawande agreed that “a patient with unbearable suffering should be given the option to hasten death.” But he followed this perfectly rational statement with an irrational comment: “every hastened death is a failure of the medical system.”

Give us a break.

The medical system needs, at some point, to confront this reality: Life… is invariably fatal. The medical system cannot forestall anyone’s death forever. The medical system cannot protect, absolutely, against unbearable suffering. Compassionate physicians across the U.S. are recognizing this fact, and increasingly backing the legalization of aid in dying for the mentally competent terminally ill.

Gawande, Chen and countless others are proponents of palliative care, an excellent, relatively new segment of care in this country. They would have us believe that palliative care is the be-all and end-all of end-of-life care, and they oppose the option of legal aid in dying. Palliative care, an option many choose, is a fine addition to healthcare. It can keep pain to a minimum and often insure comfort; as a last resort, palliative sedation can render the patient essentially unconscious for whatever hours or days remain until death comes.

But it is a cruel myth that palliative care, or even the best hospice care, can guarantee anyone will slip peacefully from good life to gentle death. Pain, indignity, discomfort and distress are part of the process; some of us don’t want much of that.

Legal aid in dying, the option to choose at what point to let invariable fatality happen, is the only guarantee. It’s an option that we should all have.

Dying in the Fix-It Society

Buddhist teacher/lecturer Frank Ostaseski spoke recently to the Bay Area Network of End-of-Life Care on the subject of compassion – something Ostaseski preaches, teaches and practices himself. Co-founder, in 1987, of the Zen Hospice Project, the first Buddhist hospice in the U.S., Ostaseski currently heads the Metta Institute, created to provide education and training on spirituality in dying.Buddha

Buddhism, Ostaseski said, holds that life is supported by two wings, compassion and wisdom, and neither is at its best without the other. His audience, made up of physicians, hospice workers and others involved with end-of-life care, was in interested agreement with the renowned speaker as he expanded on the theme. But this writer, also in agreement, found one side remark particularly pertinent to today’s end-of-life issues.

Ostaseski spoke of a severe heart attack he suffered not long ago, and of the wisdom gained from that experience. It was insight on critical illness “from the other side of the sheets.” During his hospitalization most visitors, even longtime friends with credentials in compassion, said the wrong things. “They were always saying, ‘It’ll be better tomorrow, Frank,’ when I wanted to talk about what was going on that very moment.” Additionally, Ostaseski found that nurses and doctors “interacted with monitors far more than with the patient.” What could well have been an end-of-life situation was, in short, lacking in compassion and wisdom both.

“Hospitals are fix-it places,” Ostaseski remarked.

We may have gotten fixated on being a fix-it society. Whatever the problem, a chemical or technological answer, in the fix-it society, is instantly sought. We fix brain injuries, once-fatal diseases, missing limbs, and more. But can we let someone who is terminally ill quietly die? Seldom. More often than not we keep trying to fix her with extended interventions, futile and expensive treatments or hospital stays that make dying a horror.

Ostaseski and others are working hard to help people find meaning in their final days, focusing on palliative care. Some, including this writer, are working hard to make medical aid in dying a legal option available across the U.S. ALL of us want a peaceful and compassionate death.

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The flame of wisdom

 

The personal bottom line, yours and mine, is this: eventually we die. If the focus can be shifted away from constantly trying to extend our days, we can fix the final days that lead, one way or another, to the mysterious, inevitable, unpredictable, un-fixable but quite natural end. All it takes is a little compassion, and a lot of wisdom.

Death, Dying & the Grey Zone

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Death-and-dying usually goes with I-don’t-want-to-talk about-it.

Katy Butler wants us to talk about it. She worries, though, about the culture of death-denial, and about the lack of language when we do try to talk. How, for instance, do you say “I don’t want any more surgeries,” without its sounding like “I’m giving up”? Or how do you say “She doesn’t want that treatment” without its seeming you don’t want to keep Mom around? Especially when you know what Mom wants, but the doctors don’t?

Butler, author of the acclaimed 2013 memoir of her parents’ dying years Knocking on Heaven’s Door, spoke at a recent meeting of the San Francisco Bay Area Network for End-of-Life Care. Network members – physicians, teachers, counselors and individuals associated with a wide variety of end-of-life organizations – were clearly in tune with the message: death comes, but few acknowledge or prepare for it. It’s that vast majority, those who don’t want to talk about it, who concern Butler and her audience, including this writer.

Knocking on Heaven’s Door details, in graceful prose, how Butler’s highly educated, physically active, devoted parents managed to get caught up in the brutal reality of dying in the U.S. Her father, a decorated veteran of World War II, suffered years of gradual descent, including having a pacemaker put in when that was mainly a cruel prolongation of suffering; her mother suffered in parallel but very different ways as his caregiver. It is all, Butler fervently believes, unnecessary suffering. She quotes her father as he declined:

“I don’t know who I am any more.” Another year or so later: “I’m not going to get better.” And still later, “I’m living too long.”

Butler speaks of this in terms of “the Grey Zone.” Whereas most of us want simple, black-and-white answers – “This pill will fix everything;” “you can expect to live another four to six months” – in truth, the time before dying is the Grey Zone. And whereas the Grey Zone used to be short and swift, today – thanks to modern medicine and technology – it is forever expanding.

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Everyone will enter the Grey Zone sooner or later. You, reader of these words, and I, writer. You may ski into a tree, or get hit by a truck tomorrow, causing your Grey Zone to be little more than a blur; I could have a major stroke or aneurism and be at the crematorium tomorrow. But in all probability, our Grey Zones will come in bits and pieces, and will extend for many months or years. They are likely to include a few hospital stays for broken bones or debilitating illnesses, chemotherapy for cancer, possible time on a ventilator, multiple medications with occasional unpleasant side effects, outpatient and inpatient experiences with doctors we have never seen before and encounters with medical technology yet to come.

Butler advocates shifting our Grey Zones away from the relentless need to prolong life at all costs to the consideration of what really makes life worth living. We would do well, she says, to be aware of when “that space between active living and dying” should shift from Cure to Care: to easing our way from good life into good death.

Butler’s understanding of these issues come from witnessing her father’s long, anguished journey through a Grey Zone of many years and her mother’s steadfast refusal to allow a similar prolonged struggle to mark the end of her own life.

Quite apart from the expanding battles to legalize medically hastened dying, the need to acknowledge the Grey Zone is equally urgent. Most of us would opt to shorten that space between active living and dying, or at the very least to move gracefully from good life into good death.

It can happen, but not without paying attention. Reading Butler’s book, with an eye to how you would like to knock on heaven’s door yourself, is a good way to start.

Because looking realistically ahead makes infinitely more sense than zoning out.

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.

 

 

Looking at one's own end-of-life issues

A tough story eloquently told by California physician Martin Welsh adds poignancy to the fight for legalized physician aid in dying, and emphasis to the need for patient choice as a consideration in health reform. Dr. Welsh speaks in clear language of his current dilemma:

I am a 55-year-old retired family doctor with a large, loving family and innumerable friends and former patients whom I see often. I am an extraordinarily lucky man.

For the last five years, I have also been a patient. I have ALS (or Lou Gehrig’s disease), a cruel neurological illness in which a normally functioning intellect becomes trapped in an increasingly weak and eventually paralyzed body. Soon, I will die from it.

Through my career, I tried to honor my patients’ end-of-life wishes. But after a quarter-century as a firsthand witness to death, I’ve developed my own perspective.

It’s not that I’m a quitter. I have struggled against adversity of one sort or another all my life, and those challenges have helped prepare me for what I face now. I still delight in accomplishing difficult things, and I always wear a bright red ALS wristband that says “Never Give Up.”

That said, there will come a limit. I have made it very clear to my wife, my family and my doctors that I want no therapy that will prolong my suffering and lengthen the burden on others. I do not want a feeding tube nor a tracheotomy when the time comes that I can no longer eat, drink or breathe for myself.

Dr. Welsh suggests, for himself and others, making a list of 100 things that make life worth living, ordinary things one does every day.

Some are routine, some are “chores,” some are pleasurable. Get out of bed and walk to the bathroom. Kiss your wife. Answer the phone.

Drive your car to work. Go play golf with your friends. Brush your teeth. Write a letter, lick and seal the envelope closed and put a stamp on it. Hug your child.

Of course we do many more than 100 things each day, but for now, just imagine 100 that are essential to the life you live. Now if you take away one, you can still do 99. Is life worth living without being able to smell the rose in the garden? Of course it is! How about losing two or seven, or 23 — is life still worth living? Of course.

But suppose you get to where you’ve lost, say, 90 things, and now with each thing taken away, a bad thing is added…

At some point, no matter who you are or how strong, you can lose enough things that matter — and acquire enough negatives — that the burdens will outweigh the joys of being alive…

Recognizing he’ll reach that point one day, Dr. Welsh looks his destiny squarely in the eye:

…as I face my diminishing list of the 100 things that make life worth living, the choice of quality over quantity has to be mine to make.