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Public Comment by Marilyn Golden, Policy Analyst, Disability Rights Education and Defense Fund (DREDF) Before the Institute of Medicine Transforming End-of-Life Care Committee 
May 29, 2013
I’m Marilyn Golden, Senior Policy Analyst at the Disability Rights Education and Defense Fund. We’re a leading national law and policy center on disability civil rights.
We have many concerns – –the common thread is the many stories we hear from people with disabilities, again and again, illustrating that our lives are seen as less worth living than others——so much less that health care providers too often think death is the correct course.  They press this viewpoint on us, our families and sometimes even overrule us when we disagree.
Let me tell you a true story about a young disabled woman who worked for the Center for Disability Rights in upstate New York. At the age of 19, she’d had a car accident . . . . While lying in a hospital bed on a ventilator . . . doctors would ask her mother if she was ready to “pull the plug”.  ”Why would I want to do that?” she would ask. The doctors answered, “What kind of life will she have—she won’t be able to dance, walk, work, have a social life, or be independent.” Over and over.
Terrie had a rough time medically, but eventually, she was spending hours a day off the ventilator and the doctors were still asking if she wanted to live with this condition. If she chose no, they would keep her off the ventilator and she would die, with morphine for comfort.
When she returned a year later, with a power wheelchair and no ventilator, the doctors’ jaws dropped to the floor and their eyes began to fill with tears. They always meant well and thought they had been doing the right thing.
Today Terrie is still working for disability rights and has a darling young daughter. We’re so glad she had the wisdom to go against her doctors. 
A related problem we see in the end-of-life field is a deep misunderstanding that the only problem to be addressed is over-treatment at the end-of-life. A balanced approach would address something rarely acknowledged: that there is another problem, under-treatment at the end-of-life, and pressure against life saving treatment, resulting from health care disparities, discrimination, including discrimination against people with disabilities, and economic considerations.  
These issues come up in many ways:

• discriminatory “futile care” policies allowing healthcare providers to use quality of life judgments to overrule our decisions to receive treatment;
• discrimination in organ procurement and transplant practices; and          
• discriminatory rushing to judgment and denial of life sustaining treatment of newly injured persons based on hasty and unsupportable diagnoses of “persistent vegetative state” (PVS).  

Lastly, on another point, we and many disability organizations oppose the legalization of assisted suicide, which is just too dangerous.  It’s a prescription for elder abuse, and when legal,  it’s the cheapest treatment available, a frightening thing in our profit-driven healthcare system. Terminal diagnoses are too often wrong, the so-called “death with dignity” safeguards are hollow. Because the dangers so outweigh any benefit, the legalization of assisted suicide should be opposed.
Sincere thanks to Marilyn and DREDF for delivering this important message to the Committee.  Let’s hope the members and staff listen carefully. – Diane Coleman
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Why Pro-Choice is Destroying Society

How legalizing euthanasia changed Belgium.

The following article was originally published on MercatorNet on May 17, 2013

By Tom Mortier & Steven Bieseman

In 2002, Belgium became the second country in the world after its neighbour, the Netherlands, to legalise euthanasia. Over the next decade our country has become a living laboratory for radical social change. With many other countries debating legalisation at the moment, now is a good moment to stand back and take a good long look at the results.

In 2002 Belgium was governed by a coalition of Liberals and Social Democrats. The slightly more conservative Christian Democrats had been excluded. With blue as the colour of the Liberals and red of the left-leaning Social Democrats, the press dubbed it the Purple coalition.

The Christian Democrats took a dim view of euthanasia, but they were in opposition. The Purple coalition was free to pass a euthanasia law based on the view that an individual should always have a “free choice” to end his life. In absolutizing individual self-determination the left and the right found common ground.

The law states that doctors can help patients to die when they freely express a wish to die because they are suffering intractable and unbearable pain. The patient needs to consult a second independent doctor; for non-terminal illnesses an independent psychiatrist must approve. In practice, however, this independence is irrelevant. Belgium is a small country and compliant doctors are easy to find.

A string of recent cases leaves no doubt that the euthanasia law has fundamentally and drastically changed Belgian society. Last year 45-year-old deaf identical twin brothers who couldn’t bear the thought of going blind were granted euthanasia. Doctors granted their request because they “had nothing to live for” anyway. According to the doctor who gave the lethal injection it was not “such a big deal”.

In another case, a 44-year-old woman with chronic anorexia nervosa was euthanased. Then a 64-year-old woman suffering from chronic depression was euthanased without informing her relatives. The doctors defended their decisions by explaining that these extreme and exceptional cases were legitimate because all legal conditions were met.

Euthanasia is hardening from a medical option into an ideology. Belgium’s euthanasia doctors even believe they are being humane because they are liberating people from their misery. Fundamentalist humanists go further and describe euthanasia as the ultimate act of self-determination. The opinion of the patient’s family has no weight whatsoever. A doctor is entitled to give the mother of a family a lethal injection without offering any explanation to her children. Euthanasia is being promoted as a “beautiful” and positive way to die. Doctors are transplanting organs from patients who die in the operation. (This is said to make their lives meaningful.) The law may soon allow children and patients with dementia to be euthanased.

Since 2002 opponents of the law (like us) have been marginalised as rigid and heartless conservatives who feel ill at ease in a post-modern, pluralistic and progressive society like Belgium. (1) The Christian Democrats have repudiated their traditional values and support the law. Questioning it has become taboo because the absolute right of the individual might be violated.

Herman De Dijn

There are still some significant critics, apart from the Catholic Church. The Belgian philosopher Herman De Dijn is an outspoken opponent. He describes Belgium as a “sentimentalist society” in which traditional values have been drastically minimized and replaced by subjective preferences. (2) A sentimentalist society no longer subscribes to ethical values other than those which are related to the search for individual happiness (autonomy and no-harm). Communal responsibilities and moral institutions are being discarded in the search for purely individual well-being; interdependence and connectedness are ignored.

De Dijn feels that this is the nub of the problem. A human being is not a bundle of individual feelings, opinions and preferences, but part of a species, a member of mankind, a vital link in the moral ecology where every individual has a unique symbolic value. Respect for human dignity includes not only respect for personal choices but also for connectedness to loved ones and society.

  

Supporters of the euthanasia regime repudiate this secular critique -- as well as the baneful influence of the Catholic Church. (3) However, their ideology of absolute self-determination has become so strong that it is morphing into a theology, a quasi-religious fanaticism. They have invented comforting symbols and rituals to express their beliefs. A self-determination card describes a patient’s final wishes so that the social services know what to do in a terminal illness. There are centres where people can ask questions about how euthanasia can be performed. There is indoctrination in self-determination for doctors and volunteers who wear their euthanasia enabler certificates as badges of honour.

Nonetheless, we are hopeful. Surely it must be possible to convince the Belgian public that something is terribly, terribly wrong when politicians are debating whether parents can legally have their children put down. It is not humane and it is not scientific. There is no scientific scale of unbearable suffering. With advances in pain relief, euthanasia is not even needed.

The key insight of the green movement is that all living beings are interconnected – even us humans. Especially us humans. The job of politicians is to protect this connectedness. Otherwise, why should parents care for their dependent children? Why should children care for dependent parents? Once we lose the sense that each of us is bound to one another with invisible cords of fellowship, we will end by killing all those who are burdens on society. And at some stage, all of us are going to be burdens.

Euthanasia does not threaten religious dogmas. Churches will stay open no matter what happens in hospitals and nursing homes. What is threatened is humanism. Instead of standing strong, arms linked together as brothers and sisters, the dogma of self-determination separates us, places us in bubbles of isolation, and then offers to kill us – if we want.

In today’s Belgium all of us are at risk.

Tom Mortier and Steven Bieseman teach in Leuven University College, in Belgium. They would like to thank Emeritus Professor Herman De Dijn for valuable discussions and Sylvia Statz for advice about translating the text.

Notes

(1) Burms A. and De Dijn H., De sacraliteit van leven en dood, Pelckmans Uitgeverij nv, Kalmthout, (2011), S. 71-89.

(2) De Dijn H., Taboes, monsters en loterijen, Uitgeverij Pelckmans, Kapellen (2003), S. 23-25.

(3) Burms A. and De Dijn H., De sacraliteit van leven en dood, Pelckmans Uitgeverij nv, Kalmthout, (2011), S. 91-99.

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Time

It doesn't seem to make a sifference; no matter how I try I never get catchup to the times I have to do.  I do not even have time to blog.  Everyday a new prioritory presents itself.

This past week Randy was being difficult and I did not know why.  Finally, yesterday he pointed to an application which I picked up from the bank when we were doing the banking.  After much pointing last week and yesterday I finally gave him a letter board and he slowly spelled out C+R+E.  I knew then he wanted me to fill out the credit card application.  I asked him why would he want a credit card.  No answer.  I then asked him if he wanted a credit card in case of an emergency.  He nodded his head YES. We mailed the credit card application and he was happy. He amazes me at times with his memory and determination. 

Since January 2013 Randy has been on strike against the RTs at GPC. He won't let them treat him.  Why, because he sees them as being the cause of him not having a passey-muir valve which would enable him to talk.  I was never told that he can't talk if it was attached to his trach, but rather that it was too dangerous...
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Terri Schindler Schiavo and Us

Need I say more about the dangers of advanced directives/DNRs ...see below letter dated May 10, 2013  This letter does not mention that from the time a patient knows of a DNR in Texas it is only a few day I think I read ten days to find another hospital to transfer to.  Good luck finding one on short notice. 

You might want to refer to the recent Kenny Ng 2013 BC Supreme Court decision which allowed his surrogate to starve Kenny to death and it was supported by evidence given that it was a medically appropriate decision. 

We live in a climate that many of us do not even have a family doctor who could (maybe) advocate for us. Just strangers who are under intense pressure to contain unproven cost savings and promote the mantra that quality of life is more important than life itself.  I was horrified when in January 2013 I was told by a young doctor that medicine was about quality of life. If newly educated doctors are taught this and they continue to believe it, we are lost.

Recently I spoke to a health professional who really did not understand advance directives but who told me that if he didn't honour a DNR that he could be sued.  What ignorance. What stupidity. You can't sue hospitals or hospital medical teams. As a further comment: do you think any court will $award anything for saving a life. Impossible.

All health is pro-life; otherwise, it is not healthcare. (Ron Panzer)


Dear Texas House Members,


My sister, Terri Schindler Schiavo, and the horrendous acts that took her life represent the tragic logic of the slippery slope of futile care policies, similar to the one enshrined in current Texas Advance Directives Law (Chapter 166.046 of the Health & Safety Code).

On March 31, 2005, Terri finally succumbed to dehydration and starvation because her estranged spouse and those entrusted to protect and care for her rejected her value as a disabled human.

Since Terri’s intentional death by dehydration, my family and I have established a foundation, the Terri Schiavo Life & Hope Network, through which we advocate for patients and families who fall victim to the same quality of life judgments to which our beloved Terri was subjected.

The hospitals and personnel and locations may be different than Terri’s, but the story is often the same: An unelected body of hospital or facility caregivers, strangers to the patient and deciding in secret, impose their own value judgments about a patient’s life and illness and then determine that continued wanted medical care should be withheld or denied. See the recent 2013 BC judgment of Kenny Ng wherein it was stated that it was a medically appropriate decision to starve Kenny to death.Search Vancouver Sun KENNY NG.

"Futilitarian ethics" seems to be growing in hospitals and care centers across America, and the powerful medical lobby has become more aggressive in codifying policies that jeopardize the lives of the disabled and dying.

Current Texas law is one such threat, and our foundation has been involved in helping a number of patients navigate through the futility review process and transfer to another facility. The alternative is a process of imposed death in which all power is in the hands of the treating facility.

Recently, I was made aware that proponents of a dangerous bill, Senate Bill 303, are using Terri’s photo to manipulate the truth about the bill and to confuse messaging about the dangers of SB 303.

I eagerly signed a joint letter opposing SB 303 that remains our firm opinion today. I have studied the legislation, and remain vehemently opposed to that bill. While recognizing that TADA needs reform, but I consider SB 303 to be worse than current law by expanding the power of hospital ethics committees over the lives and deaths of its patients by specifically authorizing imposition of DNR orders without consent of the patient or family, and requiring them to file a written appeal, this at a time of family crisis.

No one in my family authorized the usage of Terri’s photo or name in conjunction with SB 303. In fact, we urge you as legislators and protectors of the most vulnerable to oppose SB 303. In addition to further embedding the futilitarian mindset, SB 303 does nothing to restore any due process rights for patients. The hospital ethics committee is stacked with its own personnel and associates, yet they, with a clear conflict of interest, have the final say over a patient’s life and death with no outside checks and balances.

If you allow Senate Bill 303 to become law, the acts that led to the death of my sister will only increase in Texas. The decision to end my sister’s life unnaturally was based on quality of life judgments vs. clinical medical judgments. The calls to our foundation from Texas families feature the same conflict: value judgment on the patient has supplanted objective medical evaluations.

My sister lived for 13 days after the third court-ordered removal of her feeding tube. Texas SB 303 would sanction removal of artificial hydration and nutrition based on the following criteria—all of which were used to end Terri’s life. Under Section 7, Section 166.046(e), artificially administered food and water does not have to be given when the treatment—according to the hospital panel—would:

(1) hasten the patient's death;
(2) seriously exacerbate other major medical problems not outweighed by the benefit of the provision of the
treatment;
(3) result in substantial irremediable physical pain or discomfort not outweighed by the benefit of the provision
of the treatment; or
(4) be medically ineffective in prolonging the patient's life.

These criteria are broad and leave too much room for interpretation. “[N]ot outweighed by the benefit,” “substantial… pain or discomfort,” and “seriously exacerbate” are quality of life, subjective decisions imposed by the facility and physicians, not medical or clinical assessments.

Do not let what happened to Terri happen to patients in Texas. I urge you, State Legislators, to protect the most vulnerable, the disabled, and the dying from hastened death by rejecting SB 303 and the House version, HB 1444.

Respectfully,

Bobby Schindler
Executive Director
Terri’s Life & Hope Network

Mystery Solved

The mystery is solved.  A nurse telephoned me and said that that is what nurses on shift do.  She would do it whenever she had to write a letter ... before there were smart phones.  Now the puzzle of my banning is starting to make sense.  Staff doesn't want anyone around especially someone like me who visited Randy every day. 

So that is what Whilley has on the staff at GPC: I won't say what staff is really doing as long as no one objects to me sleeping at GPC on my own comfortable lounger (drapped in sheepskin). He was doing this for six years. I think this is a blatant example of corruption in full sight.

The banning of myself from GPC has had a devastating effect on me.  It was orchestrated by the staff on Ward 2 and Whilley.  I still remember Whilley telling me that a petition was being signed to get me banned from GPC.  I was terrified. I will never forget the injustice of it all.  Whilley is still there as well as the staff when I got banned.  No one spoke to defend me.  Even now no one speaks for  me.

Now I have become a monster:.  a true advocate for the disabled, the elderly, the ailing and for those that have been blind sighted to agree to any form of advanced directive. A proponent for the sanctity of  life. ..

Helpless

I went to see Randy during a group keep fit activity today at GPC.  Comparing his level of participation with other residents of the group, I felt so helpless realizing just how handicapped Randy really is.  He tried so hard to participate but could barely do so. It was painful to watch him.

I still haven't heard from the Ethics Committee as to why we were subjected to repeated DNR requests. 

What are they doing behind the curtains

When I return Randy back to GPC, I leave him in the hands of the nurses as they ready him to bed.  After watching vimeo.com/64462798 an interview with the daughter of a man who died of bedsores at Burnaby General, a thought raced back to me.  What are they hiding?  On Saturday I returned Randy and since he did not want to return to GPC I promised that I would wait until after he was put to bed and then stay with him until the visiting hours were over.  When returned I was told by his nurse to leave his bedside and I had to wait one hour before he was safe in his bed. Why should this have taken one hour; when it should have only taken 10 minutes; 15 minutes top.  What are they doing.  Hiding something I should see or alternatively texting on their smart phones  I have seen this man naked before, so why am I ushered out of  his "home" by the nurses...Randy can't even talk to tell me what is going on....of the ten residents on Randy's "open" Ward, only one can talk ...



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When did it Change

In the 1960, the 1970s and the 1980s society (medical industry) was doing everything to extend life and they did.  The sanctity of life was in tack. And it was not until the early 1990s that it was decided that the unproven financial  cost to allow everyone to live longer was too high.   In the 1990s it started to change to "quality of life" and the willingness of patients to end their lives sooner than they needed to.by being convinced/coerced that it was in a patients best interest and he alone made this decision. The method they used to triage patients was advance directives/levels of care... Who needs patients who are a burden on society and their families and difficult to treat and will never be productive members of society.  They are not only going after the elderly but others as well like those who were injured through extreme sports or have a long-term disease.They are targetting each one of us.  It is easy to postpone treatment for heart attack, stroke, pneumonia or cancer until a patient/resident has a sudden death. This is called a slow DNR.

I remember reading recently of an economist from back East saying that our medical system is sustainable and it is not necessary not to treat the elderly.......  The elderly are paying taxes on their pensions/income/assets/purchases and are a source of revenue for the economy.  When I went back to cite this article I could not find it but it made sense to me at that time.  So maybe all this about cost savings is not cost saving but rather to dispose of those of us who are not perfect and not in good health. And you might ask where do your assets go upon your death... 

All forms of advanced directives have to be banned. This to ensure that everyone has security of person i.e. life..