John McCain & Death with Dignity

McCain, John-012309-18421- 0004

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.

 

A new fight for good death

Kathryn Tucker

Kathryn Tucker

Christie White and Dan Swangard are fighting to live – and also fighting for their right to die: peacefully, at home, surrounded by those they love.

Kathryn Tucker and Nico van Aelstyn are now taking that fight to the Superior Court of the State of California; and it will be a fight worth watching.

Tucker, a distinguished attorney now serving as the executive director of the Disability Rights Legal Center, has already led a number of such battles for peace at life’s end, including defense of the Oregon Death With Dignity Act several times in the early years of that now 18-year-long success story. van Aelstyn has a similarly notable record and an award-winning history of pro bono work on end-of-life issues. Many supporters of end-of-life choice, including this writer, are optimistic about the potential outcome.

But court battles aren’t settled overnight, and White and Swangard know they may not have a lot of time left.

Christie White

Christie White

“My mother will tell you,” White remarked during the press conference announcing the lawsuit, “that from the time I took my first steps I wanted to be in control. I want to be in control. I am adamant about not wanting to die in a hospital, but at home, surrounded by my family. I want to be able to gather my loved ones and meet my death with some dignity and peace of mind.”

Since first diagnosed with non-Hodgkin’s lymphoma and then acute myeloid leukemia or AML Leukemia more than five years ago, White has undergone chemotherapies, radiation therapy and a bone marrow transplant. Because of those prior interventions, her medical options would be severely limited should her leukemia recur.

Dan Swangard, MD was diagnosed with tumor of the pancreas, with metastatic disease to the liver, and had major surgery in 2013. “Not to state the obvious,” he told the press, “but dying is something we all do. It can be loud, quiet, filled with anxiety, pain and suffering, at home or on the road. It can also be peaceful, filled with connections to people we love the most – if planned.”

Swangard has practiced medicine for 22 years. He has also served as a volunteer with Zen Hospice and at Laguna Honda Hospital in San Francisco, experiences that add to his own understanding of what a good death can be.

This lawsuit is about the possibility of a good death for everyone in California. Christie White and Dan Swangard are two good Californians who deserve such an option.

 

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.

Montana court affirms aid in dying

Montana has become the third U.S. state to give terminally ill adults the right to choose aid in dying. The decision, which came from the State Supreme Court on New Year’s Eve, 2009, was handed down by the highest body for state issues and thus cannot be appealed. The other two states honoring a patient’s wish to choose aid in dying are Oregon, which has successfully maintained its Death with Dignity legislation for more than a decade, and Washington, which passed a similar law last year.

The Montana ruling came too late for one plaintiff.

Roberta King, of Missoula, the daughter of plaintiff Bob Baxter, said, “My father died without the peace and dignity he so dearly wanted for himself and others. He feared when he filed this lawsuit that he would not live long enough to benefit from it. I’m sure he would be deeply gratified that other terminally ill Montanans will have the choice and comfort that aid in dying affords them.”

The Montana case was backed by Compassion and Choices, with C&C Legal Director Kathryn Tucker serving as co-counsel to the plaintiffs/respondents. (Full disclosure: I serve on the board of Compassion and Choices’ Northern California chapter.) The decision gave Tucker a major boost for her New Year’s celebrations. She was quoted on New Year’s Day as saying,

Montanans trapped in an unbearable dying process deserve, and will now have, this end-of-life choice. This is the first state high court to find protection of this choice, and makes clear that in Montana, patients are able to make this choice and physicians can provide this care without risking sanction.”

Others, including medical professionals and critically ill patients who invested long hours in seeking the new ruling, were equally gratified.

Dr. Stephen Speckart, a Missoula cancer specialist and a plaintiff in the lawsuit, said, “This decision affirms that a terminal patient’s fundamental right to self-determination will guide end-of-life health decisions. I regularly treat patients dying from cancer, and many of these deaths are slow and painful. Terminal patients will no longer be forced to choose between unrelenting pain and an alert mental state as they approach the end of their lives from terminal diseases. The comfort this brings to their last days can have an immeasurable benefit.”

Missoula attorney Mark Connell, who argued the case to the Supreme Court on behalf of the plaintiff physicians and patients, described the decision as “a victory for individual rights over government control.” Connell added: “The Montana Supreme Court has now recognized that, where intensely personal and private choices regarding end-of-life care are involved, Montana law entrusts those decisions to the individuals whose lives are at stake, not the government. I know Bob Baxter would be very pleased that the court has now reaffirmed that these choices should be left to the terminally ill people in our state.”

Steve Johnson, 71, of Helena, who is terminally ill with brain cancer, hailed the decision and asked the Montana medical profession to provide patients like himself with aid in dying. “I approach the end of my life with a clear mind, and I would like to work with my doctor to minimize the pain and maximize the peacefulness in my dying. I would like my physician to be able to respect and honor my choice to die with dignity. Adults like myself should have the option, if terminally ill, to request physician aid in dying. It’s only compassionate to minimize unnecessary suffering at the end of life, and to let me make the choice about how much suffering to endure, based on my own values and beliefs,” said Johnson.

The movement had widespread support across the state.

Montana State Sen. Christine Kaufmann, Rep. Dick Barrett and twenty-nine other state legislators; the American Medical Women’s Association, the American Medical Students Association, and a coalition of Montana clinicians; the American College of Legal Medicine; the American Civil Liberties Union of Montana; the Montana Human Rights Network; the Northwest Women’s Law Center; terminal patients’ surviving family members; Montana religious leaders; and Montana’s leading constitutional law experts had urged the Court to find in favor of the terminal patient’s right to receive aid in dying from their physicians.

According to Compassion and Choices president Barbara Coombs Lee, the battle for “the right to choose a humane and compassionate death will continue. (We) encourage terminally ill patients to call 800 247-7421 if they would like information about aid in dying, or suggestions on how to open a dialogue with their physician and loved ones.”