Twenty years ... and counting

The public's memory is notoriously short.  Which is why politicians get away with anything, for the most part.

Remember the Terry Schiavo tragedy in the public sphere?  It was awful.  Here was a young woman in an irreversible vegetative state for years, and Republican senators in DC adamantly stood against pulling her plug, in order to defend the sanctity of human life.  They were ok with wars and killing, prisons and killing, cops and killing, but no pulling the plug nor aborting fertilized eggs.  Nutcases!

Their leader at that time, Bill Frist, even made his own diagnosis--without having ever met the patient!  I tell ya, the GOP has been home to nothing but nutcases ever since that newt-led revolution in 1994.

Finally, after 15 years in a vegetative state, Schiavo died.  By then I was already an Oregonian.  And had already authored an op-ed on the state's Death With Dignity Act.  I wrote that in late 2002, soon after I moved to Oregon in response to the Bush administration's effort to overturn the Oregon law.  That effort was led by a religious fanatic John Ashcroft, who was the Attorney General.

The nutcase Republicans in DC gave it their best shot, but Oregon's law prevailed.  A couple of weeks ago, it was the law's 20th anniversary.

In Oregon, use of the law has steadily grown. Last year, it happened 133 times. Nearly 1,200 people have died using the law in the last two decades. A vast majority cited loss of autonomy as their main reason.

You remember how horrible it was before the Oregon law passed?  Like this one:

In 1990, a Portland woman, Janet Adkins, traveled to Michigan where Dr. Jack Kevorkian helped her use his lethal injection device in his Volkswagen van. Her death inflamed a national debate.

Kevorkian was later found guilty for his assistance in a number of cases.  He served time too, which is unfortunate. Almost nine years in prison, as an old man himself.  But, boy did he stand up for his beliefs!

I understand that not everybody will be ready to exit the planet as I am.  I love life. This existence is simply fascinating.  I hate the very idea that I will miss out on everything that I cherish.  But, like every saint and sinner who ever existed, I too will die.  A lonely event that will be.  Living like today could be the last day ever makes clear what my priorities are, how I should spend my time, and what I need to plan for.   Which is also why I don't have much in my bucket-list.

Here today, gone tomorrow! You should even think in terms of writing your own obituary.  At the very least, we could all benefit from having the most difficult conversations: Talk to the next of kin and make clear one's end of life choices.  After all, we talk shit all the time.  We have time for sports. We talk endlessly about the shittiest human ever in the White House.  We talk forever about the weather, for heaven's sake.  We definitely have time for this important conversation.

If you want some ideas on how to go about having such a talk with your people, check out the resources here.

In the meanwhile, enjoy the precious gift of life!

Whose life is it anyway?

“If I cannot give consent to my own death, whose body is this? Who owns my life?”

That is one tough question.

If I give consent to my own death, then I won't even be here after a while to find out what happened; after all, I will be dead!

On the other hand, when the person is "Sue Rodriguez, a 42-year-old suffering from amyotrophic lateral sclerosis, or A.L.S." it is not merely a theoretical thought experiment.

 The NIH fact-sheet on ALS is an awfully depressing read.  What a curse to be afflicted with that disease.  Which is why Rodriguez wanted to have a doctor-assisted-suicide. And it was in that Canadian legal battle in 1993 that she said, “If I cannot give consent to my own death, whose body is this? Who owns my life?”

The NY Times piece reports that she lost the case, which was taken up later by other patients and lawyers.  Now, this has become legal in Canada, and "the Canadian system puts doctors and nurse practitioners at its center."

The legal victory made possible 78-year old John Shields to schedule his death well into an incurable and terminal heart disease.  The report can be emotionally challenging to read; imagine then how intensely emotional it would be to watch a loved one die.  Right?

Here in Oregon, it is "20 years since Oregon voters passed the nation’s first death-with-dignity law."

Washington became the second state to adopt a death with dignity law, followed by Colorado, Vermont and the District of Columbia. Montana joined the list by court order. What may prove to be the turning point came in 2015, when the California Assembly approved a death with dignity law, tripling the number of Americans who can choose to end their lives on their own terms. More than 20 other states are now considering their own death-with-dignity laws.
Other states, including California, have patterned their laws on Oregon’s, which allows a patient with a terminal illness who is expected to die within six months or less to request life-ending prescription drugs. The request must be witnessed by two people and approved by two physicians, and the patient must be determined to be mentally sound. Last year, 204 people in Oregon requested the drugs and 133 people used them. That’s less than 0.5 percent of all deaths.

Of course, in Oregon (and in the other states too) patients have to self-administer the life-ending chemical cocktail.  Physicians are not allowed to press the syringe, unlike in the Canadian or Dutch euthanasia procedures.

The letters to the editor reflect the typical concerns and worries that we might have on this extremely difficult topic.  As one letter-writer notes there even when disagreeing with such an exit, "The growing discussion of dying well is a welcome and needed one."  Yes.

Peacefully exiting when there is no exit

I have always strongly held on to an understanding that India is beyond understanding.  Things happen and  all I can do is merely try to follow the developments.  This is the case for me, who was born and raised in that old country; I have nothing but sympathies, therefore, for the true outsider, whether in love with India or filled with nothing but hate for it.

Thus, I felt blindsided when a friend asked me what I thought about India's supreme court's ruling on euthanasia.  "I was reminded of what you blog about in your Oregon" she said.  Of course, I first had to clarify that what we have in Oregon is not euthanasia but terminally ill patients having the option to call it quits on their own terms, death with dignity, without having to suffer through it all until the bitterest of all ends.

But, euthanasia in India, and its supreme court has asked for a debate? Seriously?

The issue concerns the rights of a terminally-ill person, after doctors unanimously rule out chances of survival. Active euthanasia would involve a doctor injecting a lethal medicine to trigger cardiac arrest. In passive euthanasia, doctors, with consent from relatives, withdraw the life support system of a person being kept alive with the help of machines.

Very different from the Oregon protocols.  But, am shocked that India is now engaged in this discussion.  The India of the sacred cow when governed by the saffronists?

Union health minister Harsh Vardhan here on Sunday said there should not be any rush to decide on euthanasia and efforts should be made for a national consensus on it.
"A consensus should be developed on whether to allow killing of terminally-ill people with no chances of revival. It is a complex issue. There should not be any hurry to decide on this highly emotive subject," the minister said, responding to a query on the July 16 Supreme Court decision to adjudicate legality of euthanasia.

An open discussion despite using phrases like "allow killing of terminally-ill people"?  Only in India!

Even stranger is this: the newspaper reporting on that, the Times of India, has set up a website exclusively for this discussion!

The Supreme Court has in the past acknowledged that the right to dignity in life also extends to the right to a dignified death, though that ruling applied this principle only to ‘natural death’. It is time now to extend it further and adjust the law to the reality and to a more modern moral sensibility by allowing people to choose to die peacefully.

This paper has in the past campaigned in favour of passive euthanasia and decriminalization of attempted suicide. Besides allowing passive euthanasia, the Supreme Court recommended in the Aruna Shanbaug case that the provision penalizing attempt to suicide should be deleted by Parliament. We believe that the time has come not only to do away with Section 309 IPC but also to enable active euthanasia.

In line with the Supreme Court’s  decision to throw the issue open for debate, The Times of India is launching an online campaign so that those who favour active euthanasia can signal their informed support.

Only in India!

Of course, India is not the only country struggling with policies on end-of-life.  For that matter, in the US it is even more of a struggle about the beginning of life itself!  The Economist also has taken a principled stand on this:

Death is a fearful thing, but it is the pain of life that leaves many ill people in despair. Like Nicklinson, some people would like to die peacefully, at a time of their choosing and with the assistance of a doctor. Their desire for a humane end should not offend liberal societies, which rest on the principle of self-determination, so long as one’s actions do not harm others. This newspaper supports making assisted suicide legal. So, according to polls, do more than two-thirds of Americans and western Europeans.

Assisted suicide.
Active euthanasia.
Looks like we in the US are wimps who way prefer euphemisms instead of the brutally honest descriptions.

Whatever be the language used, I hope we will get into honest discussions on this profound public policy issue.  After all, we might even be able to get away from the taxman, but there is no escape from death.  Here is to hoping that death with dignity will become a human right.

How We Die. With dignity, I hope. Thanks, Dr. Nuland

Throughout my adult existence, I have given death a great deal of thought--perhaps more, way more, than how much the average person thinks about it.  One needs to go no farther than this blog itself to get an idea of how much I think and read about it--like these that are tagged with "death."  Of course, there are also quite a few posts tagged with "life."

That there are so many posts about death, and life, should not be a surprise--death is, after all, a part of life. Life comes to an end--it is only a case of when, not if.  Understanding and appreciating death is a powerful route to understanding and appreciating life itself. On this, I got a valuable piece of help almost two decades ago, from Sherwin Nuland's How We Die.

This book came out soon after I was done with graduate school and had joined the "real world" in California.  Life was changing rapidly. I read this book. I was blown away by it. All my thoughts about death which had been nebulous until then all of a sudden made sense. I knew that I wanted to die with dignity when death came knocking.  And thus came about the instructions to the family on my preferences for end of life care.

I talked about it with the attorney friend.  I told him that I thought the worst of all was Alzheimer's.  Funny he always was, and his comeback was hilarious: "With Alzheimer's, it is not your problem but somebody else's problem."

I read in the Twitter feed that Sherwin Nuland died. I meant what I said in my re-tweet:

MT his book taught me a lot About life itself. “@robinlloyd99: Sherwin B. Nuland, ‘How We Die’ Author, Dies at 83 / http://t.co/7SxQPm7Xlb
— sriram khe (@congoboy) March 5, 2014

It is now almost twenty years since I read that book. I live in a different state, Oregon, which was the pioneer with the "Death with Dignity" legislation. Of course, that is not the reason why I moved to this state but, nonetheless, it is of great comfort to me that if the Grim Reaper gives me an advance notice of his visit, then I might be able to exit the stage on my own terms.

It is an ironic coincidence that my first ever op-ed after moving to Oregon was about the Death with Dignity Act, because Bush and his fundamentalist attorney general, Ashcroft, wanted to get rid of this.  While that op-ed, and the gazillion blog posts here on death, never ever mentioned Sherwin Nuland, I owe him a great deal for helping me get a better and clearer idea of that inevitability that we all face-death.

I was certain that Compassion and Choices would have an obit about Nuland. (I have been a paying supporter on and off.)  Sure enough, they do:

“Dr. Nuland was heroic in bringing conversations about dying out of the closet. He openly acknowledged medically assisted dying exists in states like Connecticut where it is considered illegal. Our own fight is to legalize aid in dying and bring a surreptitious practice into the open, where it is safe and accessible to everyone,” said Compassion & Choices President Barbara Coombs Lee, a former ER and ICU nurse and physician assistant who coauthored the nation’s first death-with-dignity law in Oregon.
“Like so many of my colleagues, I have more than once broken the law to ease a patient’s going, because my promise, spoken or implied, [to do everything possible to provide an easy death] could not be kept unless I did so,” Dr. Nuland wrote in “How to Die” (see pages 242-243)
“Dr. Nuland learned from his brother’s death from colon cancer that physicians who urge futile treatments on patients with incurable, terminal diseases often cause great suffering,” concluded Coombs Lee. “Ultimately, Dr. Nuland died as most doctors do, peacefully in his own home. He understood the end was near and opted to die gently in the loving arms of his family. And most Americans want to follow his example.”

Way to go, Dr. Nuland; thanks!

Click here to learn about the efforts underway in different states to make Death with Dignity legal.

The world doesn't stop because it is Thanksgiving in the US

Our views of the world depends on where we view it from.  A couple of years ago, I asked students in one of my classes whether they had thought about how Native Americans might view Thanksgiving.  It didn't surprise me that they hadn't, and nor did I find them to be at fault.  In our daily lives, we usually look at the world only from where we are.

A celebration for one might not all that a great achievement for another.  It is simply impossible that all of us will be in a celebratory mood even on any given day.  That is life.

Here in the US, on a day like Thanksgiving, it is not that the grim reaper will take the day off in order to spend time with his family to say thanks.  Deaths will happen.  It also means then that to those families and friends, every Thanksgiving in the future will become a day to remember that death too.  Or, consider the families whose near and dear ones are waging their own medical battles in order to live or die.  For them, this Thanksgiving will not be all celebratory either.

And then there is that vast world outside the US.  Do I need to even expand on my point here?

So, why such a depressing post?

All because I read Dilbert's Scott Adam's note at his blog (ht.)  Adams writes about his father who was dying and about the painful death.

My father, age 86, is on the final approach to the long dirt nap (to use his own phrase). His mind is 98% gone, and all he has left is hours or possibly months of hideous unpleasantness in a hospital bed. I'll spare you the details, but it's as close to a living Hell as you can get.
If my dad were a cat, we would have put him to sleep long ago. And not once would we have looked back and thought too soon.

Because it's not too soon. It's far too late. His smallish estate pays about $8,000 per month to keep him in this state of perpetual suffering. Rarely has money been so poorly spent.

I'd like to proactively end his suffering and let him go out with some dignity. But my government says I can't make that decision. Neither can his doctors. So, for all practical purposes, the government is torturing my father until he dies.

As one who has never stopped thinking about this issue, and given that only a few days ago I filed a copy of my "advanced directives" at my doctor's office, well, of course, I am in agreement with what Adams writes there.

Adams expresses his raw emotions:

If you have acted, or plan to act, in a way that keeps doctor-assisted suicide illegal, I see you as an accomplice in torturing my father, and perhaps me as well someday. I want you to die a painful death, and soon. And I'd be happy to tell you the same thing to your face.

A tough issue, which will only get tougher as we live very long lives and as medical advancements prolong the agony of dying that would have otherwise ended without the advancements.  At least, I live in Oregon where I can legally preempt such situations in my own life.

Adams includes an update that his father died a few hours after he had posted that.  In deaths like that, I would think that the family and friends are always immensely thankful that the pain and suffering for that person has come to an end.  It is simply horrendous to watch a person suffer--perhaps even tougher for the friends and family who have to face life after that kind of a traumatic experience?

Here is to looking forward to less suffering as we continue to move forward.  And may we have more rational and humane debates on this important social issue.