Search This Blog

Friday, November 9, 2012

Massachusetts Votes No on Question 2

In Massachusetts Question 2 was defeated. Question 2 was a death with dignity initiative modeled after the laws in Washington and Oregon. As little as a month ago it looked like the legislation would be passed into law. One poll maintained 68% of people were in favor and only 19% opposed.  Compassion and Choices, formerly the Hemlock Society, put their full weight and power in advocating for “death with dignity” in Massachusetts. The defeat of Question 2 was a great victory for two disability rights groups; Not Dead Yet and Second Thoughts. I tip my hate to Steve Drake and Diane Coleman of Not Dead Yet and John Kelly of Second Thoughts. Lest I mislead readers, a diverse coalition of groups led to the defeat of Question 2.  High praise though goes to one man—John Kelly—who I have not met. He worked tirelessly in the months leading up to the election. He came across as reasoned and articulate even when confronted with questionable views that had no basis in fact. I urge readers to listen to Kelly debate Marcia Angell on NPR All Things Considered. See link:
Kelly was understandably thrilled with the election results. He stated:
This vote confirms that Massachusetts voters saw through the rhetoric and outright misinformation put out by those supporting assisted suicide.  Opposition to assisted suicide cuts across all partisan and ideological groups because the more people learn about the issue, the more they have second thoughts. Assisted suicide doesn't expand choice, it limits choice – and that puts at risk anyone living with a disability, mental illness or serious illness.
It is my sincere hope that not only will President Obama seize upon the election results but disability rights groups will do so as well. The opportunity is laid before us to marginalize the conservative right wing and hopefully eliminate  groups such as the Tea Party. This is an opportunity Obama must seize. We in disability rights must do our part as well. In Massachusetts for one of the first times in recent memory, if ever, the general public was exposed to a disability rights perspective. In part, this was because we were galvanized in our opposition to Question 2 and other death with dignity laws. The facts are on our side—scratch the surface, do some reading and it becomes clear—assisted suicide legislation is inherently dangerous and more to the point not necessary. Do not be swayed by sob stories the mainstream media hypes about people dying in agony. People die poorly because we do not discuss end of life issues.  If it were up to me Ira Byock’s The Best Care Possible: A Physician’s Quest to Transform Care Through the End of Life would be required reading for all Americans.

I do not dispute the fact many people die badly. However, Compassion and Choices sales pitch—we have the right to die is nothing more than a meaningless slogan. Proponents of assisted suicide want to control not death but its methodology. They state repeatedly that we should control how and when we die. This is deceptively simple. Of course we should have such control! Not so fast. Why do people want to die? People die because they do not want to lose their dignity. People want to remain independent. People fear losing control of bodily functions. People fear medical bankruptcy. All these fears have solutions and in most cases the problem is less physiological and more social. With proper social supports people can retain their autonomy and dignity. With proper medication, people need not suffer from pain. 
Do we really want to enter a world in which people such as Barbara Wagner are denied chemotherapy for late stage lung cancer in Oregon (it would have cost $4,000 a month and was not approved for her condition)? In its place the Oregon Health Care Plan office was willing to cover a lethal prescription. When it comes to the intersection of medical costs, personal experience, and concerns about vulnerability, it behooves us to listen to people with a disability. Proponents of assisted suicide dismiss our concerns and quickly point out there is no record of abuse in Oregon and Washington. Worse yet they think disability rights groups are pawns of the Catholic Church. Abuse is not reported because ending the life of an elderly, terminally ill or disabled person can and often is perceived as an act of compassion. It is rarely if ever considered a crime. This is a significant problem as the line between life and death is razor thin and easily manipulated. Social factors figure in prominently. I urge people to read a story recently published in Health Affairs by David Muller, “Physician-Assisted Death is Illegal in Most States, So My Patient Made Another Choice”. See link: This article scared me and made me realize yet again how dangerous accessing health care can be for vulnerable populations. Muller’s article was deceptive and illustrated that the line between a “hastened death” and “assisted suicide” is subjective in the extreme. When I first read Muller’s article I was stunned. My first thought was the elderly man he cared for was murdered. Yes, I thought the article depicted a clear case of murder. Muller was directly responsible for a patient’s death. In another post I will deconstruct Muller’s article. There is only one point of agreement between myself and Muller. He wrote: an enormous gap exists between the thoughts many of us will have about aid in dying when we are hopelessly or terminally ill and our willingness to discuss those thoughts with a doctor. The reasons for that gap include the enormous social stigma surrounding death and dying, the fear of being labeled “suicidal” or “cowardly,” and the fear of alienating or disappointing one’s family members or physician. I do not question a gap exists between patients and physicians. I do not question the fact we fail to discuss end of life issues. I do however question why Muller chose not to mention fear. Vulnerable people rightly fear not only physicians but the health care system itself that is hostile to our existence. A hostility Muller is utterly unaware of I suspect. We people who are members of vulnerable populations are often an expensive drain on limited resources. We may have a limited life expectancy or our existence itself may be deemed “incompatible with life”.  But we have rights, civil rights than cannot and should not be violated.  

Thursday, November 8, 2012

An Interesting Ten Days

The last two weeks have been interesting to say the least. Hurricane Sandy devastated much of the New York City area, especially coastal areas. The images and lives lost is nothing short of a shock. I faired very well. Truth be told, I abandoned ship and headed east and north. I stayed with a close friend for a week. I returned home to no power and luckily no damage to my home. I did lose many trees and consider myself extremely lucky. In my area Sandy was much worse than last year's freak Halloween snowstorm. We lost power for about the same length of time but the number of trees that came down last week was nothing short of amazing. I can only imagine what the storm sounded like when huge trees were ripped from their roots and came down with great force.

With my power restored I was able to watch the election. I was fascinated and nervous. I was deeply concerned Romney might win. I will confess when I saw the early results with Romney ahead I was freaking out. By midnight it was clear Obama had won and I went to bed a happy man. I was happy not just because Obama won but rather that the extremists that dominate Republican and conservative politics lost. We need conservatives in this nation; I do not question this fact. But conservatives today are frightening people. As I see it, conservatives want to undermine the separation of Church and State. They want to ban abortion and set back women's rights sixty years. They are anti-science, anti-education, anti-health care reform, anti-gay…Many do not believe global warming exists. Conservatives, as I perceive them, are punitive. The sort of rugged individualism they try to sell is grossly misleading and caters to the lowest common denominator. As I wrote in my last post, none of us are ever truly independent. There are times when a person will need social supports. There is a reason we have a social safety net designed to protect people when they are vulnerable. Conservatives want to destroy that social safety net. Conservatives decry "big government". And in part they have a point--our Federal government is indeed a giant bureaucracy and far from efficient. Despite its flaws, and there are many, we need a Federal government. We need FEMA for instance. Consider what Sandy did last week. NYSEG, my local power utility, has had three extended outages in the last 18 months. Do not tell me NYSEG, owned by global energy corporation Iberdola, and serves 2.4 million customers in New York could not do a better job at restoring power. Corporations are designed to do one thing well, make money. Corporations may be made up of hard working and good people but corporations exist to make a profit. Given this indisputable fact, we need the Federal government to establish regulations that will force a company like NYSEG to have the ability to restore power in a timely manner. We need a Federal Government to force corporations to look past profit margins.  We also need a Federal Government to protect our civil rights. Hence I was struck by the closing of Obama's speech when he said:

I believe we can build on the progress we’ve made and continue to fight for new jobs and new opportunity and new security for the middle class. I believe we can keep the promise of our founders, the idea that if you’re willing to work hard, it doesn’t matter who you are or where you come from or what you look like or where you love. It doesn’t matter whether you’re black or white or Hispanic or Asian or Native American or young or old or rich or poor, able, disabled, gay or straight, you can make it here in America if you’re willing to try. I believe we can seize this future together because we are not as divided as our politics suggests.
I take exception to just one line above. We are in fact divided as a nation. The extreme disparity in the distribution of wealth nation wide is disturbing. Fewer and fewer realize their dreams no matter how hard they work. The great divide between rich and poor plays out in a myriad of ways. For example, years ago I saw an eye doctor I liked very much. Nan Hayworth was a good doctor and treated me with the utmost respect when I had my yearly examination. I suspected we got along because we had children similar ages and lived near one another. Hayworth retired at some point and life moved on. Fast forward to 2010 and I saw her name the local newspaper described as a “moderate Republican”. Hayworth was one of 41 conservative Republicans swept into Congress (she was embraced by the Tea Party). I read about her views and was appalled. How I wondered could she have treated me with such respect in her office yet hold views I found repugnant. Hayworth was no “moderate” Republican. She is a radical conservative in bed with Tea Party extremists. In Congress she tried to cut Amtrak funding by 50% She wanted to end Federal regulation of big business and supported fracking. She was staunchly opposed to health care reform. While I could go on suffice it to say Hayworth’s views are appalling to me. I suppose this is what happens when one loses touch with what ordinary lives are like. This can happen when one has amassed individual wealth in the range of $10 to $20 million dollars. More to the point however electing a class of people to Congress, the wealthy upper class, has consequences. Dissecting Hayworth’s positions is beyond the scope of this post. What is of interest to me is the ideology behind her views.  Simply put, we do not exist on the same economic plane. Hayworth’s daily life is grossly distant from mine. The same can be said for most people elected to Congress and the Senate. These elected officials are a class apart. They do not represent their constituents. Until this changes I see no reason why the divide between rich and poor will narrow.
Rather than end on a gloomy note, I find it delightful that the election was profoundly influenced by black, Hispanic, and women voters. Polling data reveals Obama got 75% of the Latino vote, 73% of the Asian American vote, and 93% of the black vote, and 66% of the women vote. I hope conservative Republicans note this demographic shift. I will confess to feeling more than a little happy Nan Hayworth lost. Better yet she lost to an openly gay man, Sean Patrick Maloney, who she accused of being a carpetbagger. Hayworth lost because her ideology failed to resonate and I hope is the start of a national trend.