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?

 

 

 

Thanks, Brittany

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Brittany Maynard, 1984-2014

No one was surprised by the news of Brittany Maynard’s death on November 1, as she had planned. The news arrived in my Inbox late Sunday night, November 2, in an email from Compassion & Choices, an organization I have supported — as a volunteer, Northern California board chair and in all other ways — for well over 15 years,

What Brittany did for Compassion & Choices, and for you and me, though, far exceeds what any one person might ordinarily have done. Hers was an extraordinary demonstration of how to live, and die.

More of how she lived will continue to be in the news. But it’s how she died, with generosity and grace, that is worth noticing right now. Just to touch on a few things:

Brittany, in making her own choice, showed us how to make our own choices. Demand the right to control your destiny, she was saying. Fight for legalized aid in dying. Complete your own advance directives and make sure EVERYONE in your family and circle of friends knows what your own wishes are. Death with dignity was Brittany’s choice, and she wanted it to be yours — if you choose.

“The freedom is in the choice,” Brittany said.  “If the option of Death With Dignity is unappealing to anyone for any reason, they can simply choose not to avail themselves of it.”

Brittany was irate over insinuations that she had been “manipulated” by anyone. She was a strong, educated, independent, intelligent woman who led a joy-filled life and confronted its abbreviated end with remarkable courage. The reality was simply that she took control of her own final months, weeks, days, by moving to Oregon where aid in dying is legal. The reality is that she wanted her life — and death — to have meaning for all of us. She hoped that by sharing her story all of us might benefit.

It’s about freedom. Brittany, thankfully, is now free of the terrible pain her illness was bringing, a pain that was certain only to increase. Her family will mourn for a long time, but they are free of the pain and anguish that comes from watching someone you love suffer.

You and I are free to choose. We can continue to let those who hold differing views deprive us of our right to control our final weeks and days. Or we can fight to legalize our right to choose a compassionate death. Eventually, that right will prevail.

Thanks, Brittany.

Peaceful dying vs Doctor Knows Best

credit acpinternist.org

Barbara Coombs Lee, the sharp and articulate president of Compassion & Choices, spoke to the issue of death with dignity on PBS NewsHour tonight, with opposing views presented by Ira Byock, noted physician, author and advocate for palliative care. Neither really won; the time was too short and the issue is too complex. The Death With Dignity movement though, is not going away, and we the people will only win when the movement wins.

Lee spent 25 years as a nurse and physician’s assistant before becoming an attorney and devoting her life to personal choice and autonomy at life’s end. She believes a terminally ill, mentally competent adult should have the right to end his or her life when and how he or she chooses. Byock, chief medical officer of the Providence Institute for Human Caring, believes that if doctors were properly trained in pain management and end-of-life care – which he readily admits is far from the case – no one would ever want, or choose, to hasten one’s end. Lee appreciates the grace with which Brittany Maynard is facing her own very premature death; Byock says the active, well-educated 29-year-old is “being exploited” by Compassion and Choices.

A few caveats:

Barbara Coombs Lee is a good friend whom I admire and respect. I have worked with Compassion & Choices for well over a decade as a volunteer, Northern CA member and board chair, and now member of the Leadership Council. I strongly support physician aid-in-dying and individual autonomy.

“Hospice and palliative care,” Lee said on the NewsHour segment, “are the gold standard” for end-of-life care. But no amount of hospice care, or palliative care, can alter “the relentless, dehumanizing, unending” progression of a disease such as Maynard has and many of us will also face. For many of us, as for Maynard, there will be loss of every bodily function, one by one, quite likely accompanied by excruciating pain and possibly things like the seizures Maynard would like to minimize for her own sake as well as the sake of her loved ones who would be forced to watch.Stethoscope

Perhaps doctors will eventually all be adequately trained in pain management and palliative care. But even then – and “then” is a very long way off – must the doctor always know best? Why can’t I, the patient, the person facing my own dying, be the one in control?

Byock is dismissive of the pain involved with watching a loved one suffer agonies of prolonged dying. Maynard’s inevitably increasing seizures, for example, would be helped by palliative care, he suggested, so she wouldn’t suffer terribly. If I chose – as Maynard is choosing – to have my loved ones remember me as a woman at peace while holding their hands rather than a disintegrating person gripped with terrible spasms – why is that not an honorable choice?

Byock – who in this NewsHour fan’s humble opinion got the better time and treatment – slipped in words like “suicide” and “slippery slope” and “euthanasia,” and phrases like “euthanized in the Netherlands” too far along in the program for Lee to answer in the brief time given her. Byock ignores the fact that no one choosing to hasten death under the existing laws (four states now have the law, two others allow aid-in-dying) is committing suicide; they are being killed by their disease. No one has been, or will be, “euthanized.” The United States is not the Netherlands. He also ignores the fact that in the long years of Oregon’s successful law – it was first enacted in 1997 – there has been not one report of abuse. Not one.

There is no slippery slope. There is only compassion. Self-determination. Autonomy. Dignity. Grace. Peace. Why should they not be legal?

I respect the medical and literary achievements of Ira Byock. But I’m sorry: the doctor does not always know best.

Modeling how to die

My remarkable friend Mary died yesterday, after showing us how to do it. Not when, mind you, because she was far too young and energetic — just how. How to question and oppose, to look at options, and eventually to accept the fact that life is fine and finite and go with grace into whatever lies ahead.

Diagnosed with pancreatic cancer barely a year ago, Mary began what would be a studied exploration of traditional and experimental interventions to see if she might wrangle some extra quality time on the planet that she had carefully nurtured throughout her life. Almost as importantly – most importantly to her host of concerned friends – she and her husband Tom signed up on CaringBridge. Immediately, her host of friends also signed on, forming a sort of cybercircle around the family.

As the journey progressed, they would post pictures and notes about their travels and travails, filled with exuberant photos, irrepressible humor and a clear-eyed view of our shared mortality. Friends and relations would sign in with their own comments. Sometimes the latter would include off-beat ideas for something else to fling in the face of the disease; more often they would be notes about how Mary and Tom were brought spiritually into other circles when they couldn’t be physically present. Sometimes they would be long and rambling; more often they would be simple affirmations of how the couple and their family were being held close in so many hearts.

It was an extraordinary gathering. With their three grown children and a few others on site, there was relatively little taking-of-casseroles over these months, though Mary was always the first to show up with a giant jug of homemade chicken soup whenever some affliction struck at my house (and many others.) The cybercircle kept us regularly informed, assured us that we were part of the journey, and served, I believe, as a constant reminder to Mary and Tom that dozens and dozens of their friends were at their virtual side along the way. It helped that both of the central characters – and they were central characters in all the best senses – were thoughtful and eloquent writers.

While preparing for a new round of treatment not long ago, Mary and Tom learned that her tumors had returned with a vengeance. So instead of setting out for one adventure they settled in for another. Hospice was called in, their children gathered even closer. Postings in cyberspace documented the passage of those days, from occasional sunset walks into the nearby hills to readings of comments from friends, as Mary grew weaker, that might win what Tom described as the ultimate honor, “the coveted arched eyebrow.”

As she died, Mary’s family fluffed the pillows and administered “magic drops and potions, all of which helped only sort of.” Afterward, Tom opened the window as a friend had prompted, ” to free her spirit, not that she needed any help from me” and hung their Revolutionary War era ‘Liberty’ flag out front.  And sent a final note into cyberspace for the ever-expanding circle of friends: “All hail, Mary, so very, very full of grace.”

Hospital Safety 101: Didn't Mom Teach You to Wash Your Hands?

San Francisco Chronicle Washington Bureau writer Carolyn Lochhead reported today on a new idea somebody had about making hospitals safer: get folks to wash their hands. Hello?

The president of a leading medical standards organization announced a new program Thursday that is designed to improve health care safety practices, starting with a rigorous approach toward hand-washing by hospital staffers.

And this is serious business.

Hand-washing failures contribute to infections linked to health care that kill almost 100,000 Americans a year and cost U.S. hospitals $4 billion to $29 billion a year to combat, said Dr. Mark Chassin, who leads the Joint Commission, which sets standards and accredits hospitals and health care organizations.

Chassin’s announcement came after Hearst Newspapers published the results of an investigation, “Dead by Mistake,” which reported that 247 people die every day in the United States from infections contracted in hospitals.

Anyone who has ever come home from surgery with an infection, or more specifically anyone whose spouse has come home from surgery with an infection (nasty-wound-tending not having been fully explained in those for-better-or-for-worse lines) will applaud the new program, but it’s hard not to wonder what has taken the medical profession so long. Hospitals have found, Lochhead reports, that “caregivers washed their hands less than 50 percent of the time when they should.”

If there’s ever been a good example of potential savings to pay for universal health care, this is one to top the list. Consumers, we who would do well to wash our own hands when visiting or inhabiting hospitals, owe a debt of gratitude to the Joint Commission (and to Hearst Newspapers for the excellent ‘Dead by Mistake’ series.)

Maybe more sinks will be adorned with the sign that gave my husband and me a healthy chuckle during a recent visit to the Kaiser emergency room:

“Hand-wash unto others” it read, “as you would have them hand-wash unto you.”


Hospitals urged to strictly enforce hand-washing.

Healthcare: Sorting Fact from Fiction

House legislation on health reform is a win-some-lose-some proposition for those over 65. Especially, as outlined in The New York Times yesterday, when it comes to Medicare drug benefits.

Medicare beneficiaries would often have to pay higher premiums for prescription drug coverage, but many would see their total drug spending decline, so they would save money as a result of health legislation moving through the House, the Congressional Budget Office said in a recent report.

Premiums for drug coverage would rise an average of 5 percent in 2011, beyond the level expected under current law, and the increase would grow to 20 percent in 2019, the budget office said.

“However,” it said, “beneficiaries’ spending on prescription drugs apart from those premiums would fall, on average, as would their overall prescription drug spending (including both premiums and cost-sharing).”

The Congressional Budget Office report set off an immediate battle between Republicans and Democrats, each side eager to convince seniors — those vocal voters — that the other was representing the devil incarnate. Republicans swear the House bill will threaten Medicare beneficiaries in order to cover the uninsured, Democrats say the bill will help them by eliminating a gap in Medicare drug coverage.

On this particular segment of the impossibly complex bill, maybe seniors would do well to listen to their own purported champion:

Nancy LeaMond, an executive vice president of AARP, the lobby for older Americans, welcomed the report as evidence that “health care reform will lower drug spending.”

“Opponents of reform may use today’s projections to try to stall reform,” Ms. LeaMond said, “but we hope they will look at all the facts before jumping to a false conclusion.”

And there, some would suggest, is the problem. The facts have been virtually obscured by misstatements, misrepresentations and outright lies. Death panels? A lie that served its scary purpose. Rationing? It’s already here, folks; it’s done by insurance companies that deny coverage in sometimes arbitrary ways. Socialized medicine? Hello? Does anyone over 65 remember those screams before Medicare was signed into law in ’65? When half the population over 65 had no insurance coverage at all?

Set aside the fact that providing healthcare for all is simply the right thing to do. Millions of American seniors (whether you begin that definition at 65, 60 or — to their horror as it sometimes happens — 55) were motivated to support President Obama by not only their hearts but also their brains. If those brains can be called into play to sort fact from fear-mongering, we may yet get the health reform common decency requires of this otherwise civilized nation.

Health Bill Would Cut Drug Spending for Many on Medicare, Budget Office Says – NYTimes.com

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More on Health Care: Where the Costs Are

A few interesting factoids were dropped into the health reform debate by New York Times writer Amanda Cox Tuesday:

In 2006, health care expenses among half the United States population totaled less than $800 per individual, according to the federal Agency for Healthcare Research and Quality.

For openers, that seems entirely reasonable. Would that we could actually care for the citizenry at $800 a pop. Keep reading.

But the expenditures were not uniformly distributed throughout the overall population. Spending was far higher among the elderly, the obese and people who identified themselves as unhealthy. Median spending in those groups totaled $2,300 per individual. Although these patients represent just one-third of the population, they accounted for almost 60 percent of health care spending.

I hate to stomp this nearly dead — oops, bad metaphor — horse even further into its grave, but a lot of us, given the chance to talk to our doctors about aggressive, invasive, often futile end-of-life treatments that are going to make our ends horrific might choose to go home and spend our remaining time with palliative care, at peace. A nifty way to cut that $2,300 back down to $800. But Senator Grassley and others think we should now allow those conversations.

The truth may be too obscured by the cleverly promoted lies, but the issue is about choice. Compassion. Comfort. Peace. Sanity. If anyone could get this truth across to seniors, that one critical segment of reform might still survive. And personally, I’d like to have the option of saving the rest of you taxpayers my $1,500.

via Making Sense of the Health Care Debate – Prescriptions Blog – NYTimes.com.