Whose Life is it Anyway? Your Right to a Peaceful Death
Presented by Faye Girsh, Ed.D, Senior Adviser, Final Exit Network, Harvard University
About the Speaker
Dr. Faye Girsh received her doctorate in Human Development from Harvard University and taught Psychology at Morehouse College and the University of of Chicago. For 18 years she practiced as a clinical and forensic psychologist in San Diego. It was in that capacity in 1983 that she became involved in a California case of a quadriplegic woman who wanted to die, by refusing food and hydration—a right that was ultimately affirmed by the US Supreme Court. Faye Girsh, Senior Vice President and past- executive director of End of Life Choices, formerly the Hemlock Society, a national non-profit organization based in Denver, Colorado.
About the Event
Announcements
On Friday, May 14, Amy Goodman, host of the Democracy Now radio program, presented Exception to the Rulers; Exposing Oily Politicians, War Profiteers and the Media That Love Them, which is the same title as the book she co-authored with her brother, to those who came to hear her at Fountain Street Church in Grand Rapids. It was a stirring talk, augmented by film clips and focusing on the “Silenced Majority”as she calls those who are generally overlooked in most corporation owned media portrayals of stories. Anti-septic, video game style video of acquired targets transforming into flashes of light and a sea of retired generals praising the new weapons systems, stand in stead of film showing the victims of those assaults; the “collateral damage” incarnated as the broken and blasted apart bodies of civilians, children and women. People speak for the war protesters when they are shown at all and they (the protesters) are usually depicted as confused and ill- informed. Victim’s families are aired when they are giving “descriptions” but not when they are providing “prescriptions” such as when they tell of who their loved one was to them personally but then the camera quickly cuts away when they begin to tell of their feelings about the war itself and how things could have been handled better. Goodman gives voice and visibility to the silenced and out- of- view in our current and past wars and gave a heart- felt and information- rich talk that night.
In the last minutes, this Secretary provided a full run down of upcoming events and meetings. For those wishing to revisit our current calendar as well as many, many more items of interest to freethinkers, check our website shown above or, for questions, comments and suggestions, send e-mails to , call 616-892-9300 or send correspondence to our new postal mail site: P.O. Box 101, Allendale, MI 49401.
Presentation
Our topic for this meeting was “Whose Life is it Anyway? Your Right to a Peaceful Death” presented by Faye Girsh, Senior Vice President and past- executive director of End of Life Choices, formerly the Hemlock Society, a national non-profit organization based in Denver, Colorado. She graciously agreed to put us on her schedule of stops in Michigan during her run of speaking engagements. Thanks to Jeff Seaver for the impromptu arrangements that he made for her presentation to us, on a special night (Monday). Ann Arbor, Bloomfield Hills and Flint were on her already- scheduled tour from the 14th – 17th of this month.
Girsh received her doctorate in Human Development from Harvard University and taught Psychology at Morehouse College and the University of of Chicago. For 18 years she practiced as a clinical and forensic psychologist in San Diego. It was in that capacity in 1983 that she became involved in a California case of a quadriplegic woman who wanted to die, by refusing food and hydration—a right that was ultimately affirmed by the US Supreme Court. Through that exposure and experience, Dr. Girsh developed an interest in the right- to- die movement, founded the Hemlock chapter in San Diego which she headed for nine years, served on the national board of the Hemlock Society USA and was named its exec. director in in ‘96. In 2003, she was awarded their Lifetime Achievement Award.
The Grand Rapids area representative for End of Life Choices, Nancy Bedell, was on hand as well, to answer questions and promote the wide ranging literature offered for our perusal. End of Life Choices formally replaced the Hemlock Society moniker after surveys of non-members showed this to be a more attractive name to most surveyed. Interestingly, our own group (FA) was overwhelmingly more beholden to the erstwhile organizational name. Perhaps, those involved in freethought are more conversant with other controversial groups, so Hemlock was an already familiar name for many. Also, those skeptical of religious claims have long borne various insults due to being a part of an unpopular minority population by our own choice, making euphemistic language less sought after.
End- of- Life- Choices ( http://www.endoflifechoices.org
The legislation that End of Life Choices promotes specifically states that while it does not authorize euthanasia, hastening death as a secondary effect would not be prosecutable.
Dr. Girsh told us that the Hemlock Society began in 1980 when a journalist in England, Derek Humphry, faced the personal tragedy of his wife Jean’s breast cancer. Everything was tried to help her fight for her life, but with no improvement. Within two weeks in a cancer ward, the cancer spread into her bones and her suffering became severe. The couple began to finally talk about how death was going to be, with Derek’s wife pleading for him to help her go. It was a clearly illegal thing she asked of him. There was no one around then to help them make the choice and no instruction on how to go about it existed. Not only was she in great pain but she had been robbed of her independence and autonomy that she held dear. Their doctor availed them of a method using a mixture of pills, which Jean took, allowing her to pass into a deep sleep, dying peacefully. But both Humphry and the doctor had committed felony level crimes. Humphrey later wrote a book called Jean’s Way which was in essence a love story about their life and together and her death from the perspective of a loving caregiver. This risky confession not only of love and grief but also of a crime caused letters to pour in from people all over who commiserated, sharing similar stories.
Humphry moved to the US where he worked for the LA Times. There, he got the same reaction. Others divulged painful admissions of their loving acts of release and the resulting guilt produced even when they knew they had done the right thing. From this personal experience and the need Humphry saw for things to change, the Hemlock Society started. Always controversial, it was very hard to even secure Board members initially. But membership grew and chapters sprang up as its mission was articulated to more and more people who could empathize with having a say in the manner that those of good conscience elect to terminate; in a dignified, peaceful, quick way, surrounded by loved ones. Humphrey also founded ERGO (Euthanasia Research & Guidance Organization) which is now the chief financial sponsor of the New Technology Research Group (Nu Tech) that strives to develop legal, painless ways of self deliverance from a terminal or hopeless illness.
The major obstacle in the stated goals of Choice is the Church. Arguably this is the case no matter if the “c” in choice is capitalized to regard the organization: End of Life Choices, or lower case, regarding issues such as a woman’s right to choose (the abortion debate) or the right to choose one’s life partner of the same sex (the gay marriage issue, which, as Dr. Girsh noted, had just gotten a boost by Massachusetts declaring it to be legal). As for end of life choices, this is usually formulated from the religious standpoint of it being God’s choice to make as to when and how one dies. Alleviating suffering is not seen as a good counter argument by those who link suffering with piety and even with the grace derived via redemption by knowing that Jesus, who suffered for all, is there with you in your pain.
In an address made by Bishop John Shelby Spong on this issue, from the standpoint of an Episcopalian Christian, he stated his belief that when death has become a kinder alternative to hopeless pain and where dependence on narcotics has stripped one of personal dignity, then the basic human right to choose how and when to die should be guaranteed by law and respected by faith communities. He further noted how inconsistently applied is the idea that humans have no choice in matters over life and death; that it is solely under the purview of God. He illustrated the hypocrisy in speaking of the Christian endorsement of capital punishment, where Christian rulers showed no reluctance in wresting away the power over life and death from the deity. Those critical of religious dogma, such as Bruno Giordano, were burned at the stake (no smiting from God needed) as were homosexuals, at a sufficient frequency in fact where the small wooden piece used to light the fire—the faggot- became a smear word for gays. Then there are the lovely instances of the Inquisition, the Crusades and pogroms and so on.
There are, in Spong’s view, no strict Bible literalists but rather “selective literalists” who quote passages that suit their dogmatic claims while ignoring those that are inconvenient or have become inoperative. Bible quoting has justified the divine right of kings, to prove Galileo wrong, to justify slavery, and to keep women in positions of second class citizenry and to deny that sexual orientation is a given, rather than a “lifestyle choice.” It is part of what people are, not what they do, in Spong’s assessment. He said that “...to have the Bible quoted by the religious community today to bring a final solution to all end of life discussions is hardly something to be feared. It is only the last gasp of a dying religious imperialism. It needs only to be countered with informed data.” The author of Why Christianity Must Change or Die later made the point that if human life is seen as too sacred to to seek release from it under any circumstances then is it not also too sacred to take from another? God- fearing people in past times succumbed to diseases and health problems that are all but eradicated by dint of human effort. Along with human progress comes more control over areas that were once considered to be reserved only for God. We now live in a time where a person can hypocritically condemn medicine as usurping God’s role while they stand there having had a triple bypass operation, a successful hip replacement, laser eye surgery and who have children who have all lived to have children of their own, when once it was a given that only a few of one’s progeny would survive.
Dr. Girsh noted that even mainstream religions sanction the hastening of deliverance from irrevocable pain and deterioration but that while much of Europe has legalized this, only in Oregon, here in the US, has Legal Aid in Dying been accepted as law. Now in its sixth year (Nancy B., mentioned earlier, spoke to our group when the Oregon Law had only just been implemented, when we were meeting at the Urban Institute for Contemporary Art), Scott Swenson, the Executive Director of the Death with Dignity National Center, said that Oregonians have demonstrated exacting and responsible care in its implementation. The statistics show that approximately one- seventh of one percent of the 31,000 total deaths in the state last year were of those who availed themselves of the Oregon Law. With this statistic, Girsh gave us the quote: “Despite the high cost of living, it’s still very popular.” These individuals tended to be well-educated and cited loss of autonomy, decreasing ability to engage in enjoyable activities and loss of dignity as their primary end- of- life considerations. More than 90% died at home and cancer was the most common disease with ALS being close behind.
Girsh spoke of Michigan Advance Directives as being of paramount importance in having your end of life choices carried out. It consists of two parts; having a legitimate Living Will that speaks to not employing artificial measures to sustain life when one has no hope for recovery, and in appointing a patient advocate whom one can be confident in their honoring one’s wishes. The difficulty in letting go, the guilt associated with it, and the human capacity for hope always springing eternal confounds the most fervent desires of the dying person too often. There is also the steady drumbeat of phrases one hears including that this promotes a “culture of death” and makes for a “slippery slope” and fears of a patient being coerced in their decision and asks “what if there is a miracle?” Judith Coats writes of a distraught 62 year old son who sought all means possible in prolonging the life of his dying 98 year old mother, even when doctors explained to him that there was nothing more they could do. His mother’s heart and lungs were failing, she was being fed through a tube and was festooned with other tubes and the veins in her arms and legs had collapsed, so that an IV had to be placed in her upper leg. She begged her son to allow her to have an end to this wretched existence and had in place a solid advance directive, but unfortunately, her son was not emotionally able to comply with her explicitly- stated wishes. This underscores the point about choosing a patient advocate who will truly take one’s wishes into account at this difficult time, often when the patient is incapable of speaking for him/herself. There should also be an alternative advocate, should one back out from fulfilling your requests.
The advocate must “persist and insist” on one’s behalf, one’s directive must be clear and unambiguous as well as precise as to exactly what treatments one would not choose to have in specific instances. Copies of the a. d. should be made, with one sent to an alternative physician, to broaden the likelihood of the instructions being adhered to by at least one doctor. Copies should also be easily accessible and given to friends, family, the hospital and one’s advocate. It is suggested that a copy should accompany one when traveling. The Martin Standard requires that “clear and convincing” evidence must be given in refusing treatment, including the cessation of food and hydration. Since 1995, a Do- Not- Resuscitate law and document has been available in Michigan and Michigan law allows you to have a copy of your medical records. Documents should be drawn up for any states that one has residency in during the year. The Michigan Advance Directives law requires that “designations of patient advocate” be in writing and be signed and witnessed. While gifts of appreciation may be given, no payment is to be made to one’s patient advocate. Finally, the directive should include life care treatment, especially for psychiatric or psychotropic medications and hospital treatment, if one’s medical history indicates that one may at some time need those. And, one must specifically give permission to one’s patient advocate to order such care if one is incapable of asking for it, otherwise treatment could be withheld.
Progress is made, but it is slow. As examples, the Living Will law took a dozen years for every state to adopt it with an additional five years for the health care proxy law to be made and another 12 years for every state to adopt that. Impeding the societal evolution are those who have the knee- jerk response that loving caregivers become murderers when they permit the release from suffering of a loved one. Another complication arises in cases where there is not just a single death, such as when there is cortical death, where the “person” simply isn’t there anymore, that can come long before there is actual full corporeal death. Dr. Girsh asked why we need the Supreme Court to adjudicate whether one eats or drinks or not. She mentioned the irony that sociopathic killers and dogs can be given a lethal injection but for the rest of us; those who not predate on others and who are Homo sapiens, it is much more difficult.
Our presenter spoke of hospices as places that will neither prolong nor hasten death, but where good, humane nursing care is given and medication to ease the pain is administered without hesitation. Sometimes it is harder on the families, Girsh said, as they watch their loved one lapse in and out of consciousness or are too medicated to have their “right mind” about them. People who elect to prepare advance directives and secure advocates typically want to be able to exercise more control over their own death, have their self deliverance on their own terms, be mentally aware and lucid and be in the company of family and friends when they say their final goodbye. They also want to have the choice in whether they follow the directive or not. What if a miracle? What if they show recovery after what seemed hopeless? Then they recover to the jubilation of their loved ones and have not already gone into irreversible brain death from which there is no documentation or appointed advocate to help give them release.
While it was not mentioned, this writer saw a parallel to the abortion debate when Faye Girsh talked about how now, without a proper and legal protocol in place in 49 of our states, the decision to self- terminate is too often a lonely, barbaric, messy, uncertain and sad event. People come upon the traumatic sight of the person who hastened his/her own death in an ugly fashion. Also, sometimes the outcome isn’t desired death but even more impairment and loss of function. Pro- choice advocates often say, too, that legalization of abortion greatly reduces a messy, uncertain, painful, traumatic and sometimes lethal outcome for the woman who takes matters into her own hands in desperation, or leaves it to unqualified individuals in unsafe settings.
In Oregon, two doctors have to determine that you have less than six months to live and then there is a 15 day waiting period before a prescription can be be filled of fast-acting barbiturates and only by a willing pharmacist. The law is that one has to self- administer the medication and one has to have been a resident of the state for a certain minimum number of months. End of life care is highest in Oregon but it is still not as good as it could be, according to Girsh. The law is always under attack and by very well funded (and in many cases tax- exempt) and highly dedicated opponents. Lawsuits from the Ashcroft types threaten at all turns self determination in end of life choices. In most developed countries of the world, it was noted, religion does not parlay itself into political potency the way it does here. Italy (home of the Vatican), for instance, has the lowest birth rate of European countries and religion is simply less influential in most countries. However, there is a counter to this, and that is that we have 50 states, so not all has to change as a whole—all at one time. A state can set precedence and serve as an example while evaluations are made and sound debate is generated.
The book Final Exit was called the “...best insurance policy you can buy” by Dr. Girsh. It gives the ways and means—even a dosage table—for those who “...don’t live in Oregon” but seek a quick, gentle solution. It also tells how not to go about it. The greater distancing in the relationship between doctor and patient in modern times is another obstacle to effective communication of wishes and treatment regarding the end choices made. Our speaker said that when people seek help and information from her organization, End of Life Choices require documentation for the claims in the form of medical records, to avoid being trapped by a group with ulterior motives. One has to be capable of ending one’s own life to be “eligible” and the individual is to be kept informed and given alternatives to hastening their death to explore.
The Caring Friends Program was discussed as to their role in support and information. They provide state- specific assistance on advance directive guidelines and examine them for accuracy as well as how to use the a. d. effectively and they instruct surrogates on their responsibilities. A medical durable power of attorney designates a surrogate to act on one’s behalf, with directions for the surrogate to follow. The Caring Friends also maintain copies of members’ advance directives and give information not directly related to choosing a hastened death.
Among our attendees to this meeting were several people for whom this issue was very personal. Some were themselves in the early stages of some degenerative disease, or faced heart wrenching decisions with a dying loved one or had family members in the clutches of an unforgiving and undeniable life-shortening illness. In speaking to these non-academic concerns they made powerful statements.
“The Right to Die is not a response to our institutions but to the way they fail us.” Dr. Faye Girsh.
“Making someone die in a way others approve, but he believes a horrifying contradiction of his life, is a devastating, odious form of tyranny.” Dr. Ronald Dworkin, author of Life’s Dominion.
“We can prolong people’s lives even if they’re in agony… but do we have the moral expertise to be kind to people and let them go?” Randy Marcus, son of an ALS victim.
Secretary: Charles LaRue
