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.

The_flame_of_wisdom

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

clouds

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.

ER

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.

Arguing With the Doctor – A plea for end-of-life choice

Dandelion

Does the doctor always know best? And in the case of one’s own precious life and death, is it wise to argue the point?

“No One Here Gets Out Alive” – a quote from Jim Morrison – led the title of a lively (pun intended) debate about aid in dying held recently at San Francisco’s Exploratorium. Part of a series on the intersection of science and politics, the event’s full title was “No One Here Gets Out Alive”: The Science, Politics and Law of Death and Dying. The program sought to address a few issues not easily covered in two hours – but still – including (reprinted verbatim):

Is there a constitutional right to “physician-assisted suicide”? What about a “dignified death” – and what is a dignified death? Should terminally ill patients facing mental incapacitation or unbearable pain have access to fatal ingestion – also known as physician aid in dying? Or would that jeopardize our society’s progress toward more compassionate, comfort-based care?

Participants included John M. Luce, Emeritus Professor of Clinical Medicine and Anesthesia at the University of California San Francisco; Laura Petrillo, MD, a Hospice and Palliative Medicine fellow at UCSF; and program host David L. Faigman, Professor of Law at UC Hastings College of the Law and Director of the UCSF/UC Hastings Consortium on Law, Science and Health Policy.

The program kicked off with a discussion of the science of death itself – defining death being more and more problematic these days. Think Nancy Cruzan, kept alive through a feeding tube in a “Persistent Vegetative State” for nearly a decade until her family managed to convince the State of Missouri that she would never have wanted to be “kept alive.” Or Terri Schiavo, whose PVS ordeal lasted even longer. More recent is the tragic story of 13-year-old Jahi McMath, declared brain-dead by multiple physicians more than a year ago but whose body is still existing somewhere, connected to machines that keep her heart beating.

Those cases are just a few of the markers on the path toward today’s critically important death with dignity movement. This writer’s involvement in the cause began with work as a hospice volunteer in the 1980s, a member of an HIV support group in the ’90s and a volunteer with Compassion & Choices (and its predecessor organization Compassion in Dying) since the late 1990s. C&C is currently leading the fight to make aid in dying legal throughout the U.S., having won significant battles – five states now protect that right for terminally ill, mentally competent adults – with others underway in many areas.

And that issue – should medical aid in dying be legalized in California (and elsewhere) – was the heart of the two-hour program. Of the two physicians, Luce was eloquently in favor, and Petrillo was adamantly opposed. In this writer’s admittedly biased view, Luce’s lifetime of experience as a distinguished physician and professor rather embarrassingly outweighed Petrillo’s credentials, but it is possible to see her emerging-palliative-care-physician status as basis for her absolute certainty that everyone on the planet can experience graceful, pain-free death if only he or she has access to palliative care.

I am less certain. Thus my argument.

In the Q&A period, I posed this question to Petrillo: “If you were my doctor, which is unlikely, and I were dying, which is increasingly likely (I’m 81, for heaven’s sake,) and I have expressly, repeatedly made clear that I do not wish to linger – why should you have the right to insist that I linger?”

Petrillo dodged the question. “I would ask what is causing your pain,” she said. “I would try to determine if you are depressed, and talk about how we can alleviate your pain and possible depression…”

After several abortive attempts to get a response to my question, and figuring the audience had not paid good money to listen to me rant, I gave up. But here are the arguments I had for Dr. Petrillo, questions I wish the minority of physicians who do still oppose aid in dying would answer:

Why should you have the right to insist that I linger, when I am dying?

How can you presume to understand my pain better than I? And why should I have to describe it if I don’t choose to do so?

When I have watched dying people with the very best care and pain control suffer in ways I would not choose to suffer, how can you insist on my going that route?

Why should your conviction about the efficacy of your medical field trump my autonomy?

Dr. Petrillo said she is not religious, so this question would be addressed to others: Why should your religion overrule my religion? Or dictate to me?

It’s my only precious life, after all. Why should I be denied control of its precious end?

 

 

 

Death with Dignity: How to crash a website

 

IMG_1580Among a long list of emails piling into my Inbox is one that says “Thanks to a particularly successful story on People.com the increased traffic has crashed our site. Please be patient as we yell and shake our fists at our web hosting company. We’ll be back up and running shortly.”

It’s from Compassion & Choices, an organization I’ve worked with for nearly two decades. Compassion & Choices is an excellent nonprofit, leader in the fight to make Death With Dignity — specifically, physician aid-in-dying for terminally ill, mentally competent adults — a right for all Americans.

This particular story is a People.com type of story: beautiful young woman dying of brain cancer, choosing to die with dignity and courage… and sadly having to move to Oregon to accomplish this. But similar stories, some with happy endings and some not, occur every day: men and women of all ages in the U.S. find themselves with terminal diagnoses and seek to control their final days and hours. It shouldn’t be that hard.

Though I’m no longer active in this capacity, for many years I served as a Compassion & Choices volunteer — trained C&C volunteers will help those who fit the criteria (terminally ill, mentally competent adults) understand their options. In California, which does not have a DWD law but hopefully will within the next few years, the best option is often to stop eating and drinking. Or sometimes just to stop taking the medications that are keeping you alive.  To be candid, some people also hoard life-ending medications and when their numbered days get to be very few — or their suffering becomes more intense than they feel worth the struggle — they stir those pills into applesauce and spend their final moments in peace, surrounded by loved ones and in the quiet of their own homes.

How in the world is this not a good idea? Why in the world is prolonging life to the bitter end, more often than not in a cold & sterile hospital room ever a better idea?

Brittany Maynard, the 29-year-old subject of the People.com story, is choosing to die on her own terms. Wouldn’t we all?

 

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.

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.