Fighting for Our Lives in CT: Patients with Disabilities Denied Treatment, Food and Water

From the JFA Moderator:

These cases turn my stomach.  Below is an Afficdavit given by Nancy B. Alisberg of the Connecticut Office of Protection and Advocacy in the OPA's motion to intervene in an assisted suicide suit.  She describes three cases where guardians and medical professionals decided to withhold treatment (including in one case, nutrition and hydration) from people with varying disabilities.  OPA stepped in to reinstate treatment, and those individuals have recovered and are thriving.  I know there is a lot of controversy around whether people should be allowed to end their own lives, but I can't imagine many people support the right to end someone else's life, someone who has demonstrated a desire to continue living.  I try to imagine similar circumstances if the child or patient did not have a disability, and I am convinced those decisions would have been made very differently.  Read below and judge for yourself.

Below is a retyped copy of the affidavit:

NO: HHD CV 09 5033392 S

GARY BLICK, M.D., and
RONALD N. LEVINE, M.D.
V.
OFFICE OF THE DIVISION OF CRIMINAL JUSTICE, et al.
SUPERIOR COURT
JUDICIAL DISTRICT OF HARTFORD
AT HARTFORD

APRIL 8, 2010

AFFIDAVIT OF NANCY B. ALISBERG

1.    My name is Nancy B. Alisberg.  I am over 18 years of age and I understand the obligations of an oath.

2.    I am employed by the State of Connecticut Office of Protection and Advocacy for Persons with Disabilities (“OPA”) as the Managing Attorney.  I have been employed in this capacity since March 31, 2000.  I have been a member of the Bar of the State of Connecticut in good standing since November, 1983.

3.    As the Managing Attorney, my duties include, but are not limited to, supervising staff attorneys employed by OPA and maintaining my own caseload of cases.

4.    In 2007 I represented a woman with a profound intellectual disability who lived in a group home.  She had a history of aspiration pneumonias.  Her physician decided that she would not recover from her current aspiration pneumonia without the insertion of a feeding tube.  The physician was concerned that she might not accommodate the feeding tube easily.  The physician therefore recommended that my client be starved to death by the withholding of nutrition and hydration.  Her guardian, who was her brother and lived in another part of the country, consented to the order.  The brother also signed a Do Not Resuscitate (“DNR”) order.  These orders were approved by the Department of Developmental Services (then the Department of Mental Retardation).

5.    When OPA learned of this situation, I immediately brought a motion in probate court to begin nutrition and hydration, and to remove the “DNR” order.  The court granted my motion.  The woman is now happily living in a group home and has learned to live comfortably with her feeding tube.

6.    In 2008 I represented a 15 year old boy who had a profound intellectual disability and was in the care and custody of the Department of Children and Families.  He had developed a severe yet treatable form of leukemia.  The physicians who were treating him believed that he would not understand why he would “suffer” from the side effects of the chemotherapy, and that he might lose some additional cognitive functioning from the radiation treatment.  They therefore felt he should not be treated and should be allowed to die.

7.    The physician’s position was brought to the hospital ethics panel which supported the physicians.  It was only because of the intervention of the OPA and another interested advocacy organization that DCF ordered that treatment be commenced.  This young man is now in complete remission and living in an adoptive placement.

8.    In 2009 I represented a woman who has a brain injury that was the result of a complication of a heart transplant.  The woman lived at a long term rehabilitation facility.  The treatment providers at this facility informed my client’s parents, who were her conservators, that she had reached what they believed to be her maximum level of rehabilitation.  Her parents decided that she would not want to live with her level of disability, and thus ordered that she receive only “comfort care.”  That decision sentenced her to death as it ended all routine anti-rejection treatment for her transplant.  My client expressed an unequivocal desire to live.  Her providers at the rehabilitation facility were aware of her choice yet they implemented the parents’ orders.  We were therefore required to obtain an order of the probate court in order to restart the required anti-rejection care to save her life.  She is now thriving, acquiring new skills and in a loving relationship.

9.    As the managing attorney, I have also supervised staff attorneys who have represented clients with intellectual disabilities who have had Do Not Resuscitate Orders imposed by guardians or conservators or who have been denied dialysis treatment for reasons related only to the level of their disability.  It is only because of the intervention of OPA and the probate courts that the lives of these individuals have been saved.

From Stephen Drake, Not Dead Yet (4.14.10):

First, it could be that I am just paying more attention to these things, but I am getting the feeling that these cases are on the upswing.  In just the past few years, the Protection and Advocacy offices in Illinois, Wisconsin and Pennsylvania have all had to intervene in these types of situations.  I know of at least one other state in which Protection and Advocacy has had multiple occasions to intervene in attempted treatment withdrawal or withholding based on disability discrimination.  There's no reason to believe that the problem is limited to those states...

>>> For Not Dead Yet's Full Response

Comment Below: How is it that people responsible for protecting and preserving life can openly seek to end the lives of the people they are responsible for by withholding basic treatment, food and water?  How do we defend ourselves when our lives are seen as worthless and our wishes are ignored?  I know the above stories are only  a drop in the ocean.  Share your stories below. Do you know someone whose treatment was withheld, whose voice was shut out, and whose life was devalued by medical professionals, over-burdened family members or guardians? 

Comments

[Julie]

Kudos to NANCY B. ALISBERG for her work! We need thousands more like her!

[Patricia Sprofera]

Brava to Nancy Alisberg!

[Raymond E. Glazier]

In 1968 brain injury in an auto accident left me paralyzed and comatose for nearly a month. My in-laws had initiated the paperwork to commit me to the back ward of a state mental hospital. Because I was unable to speak or to signal my awareness as I came out of the coma, I probably would have lay there, terrified and helpless, the rest of my life, presumed to be in a vegatative state. Fortunately my wife stalled these plans until, after three weeks, I came out of the coma and could answer questions by blinking.
After months of intensive rehab, I returned to my job, an active, self-sufficient (with personal care assistance) quadraplegic with speech impairment. In the life restored to me, I have maintained my employment in a fast-paced, demanding policy research environment; fathered two sons; returned to graduate school and earned my doctorate.
I could not be more thankful that no one pulled the plug on me.

[Tricia]

Terri Schiavo in Florida. Many people were saying, I say pull the plug, who wants to live like that?

Terri Schiavo had no plug to pull! She used a feeding tube and that was the extent of it.

They starved her and kept water from her and she lived for over a week suffering.

Where was OPA in Florida for her?

We need to educate people in that she did not have a plug and that what killed her was not her condition but blocking basic human needs from her - food and water.