Connecticut: Affidavit of Nancy B. Alisberg in Motion to Intervene in Assisted Suicide Suit

As promised in yesterday’s blog posting, today I’m sharing the affidavit submitted by Nancy B. Alisberg, Managing Attorney at the Connecticut Office of Protection and Advocacy for Persons with Disabilities (OPA) in the OPA’s motion to intervene in Blick v. Division of Criminal Justice.  Alisberg’s affidavit goes into detail about some of the actions she and her staff have taken to intervene in “end of life” (note: she doesn’t use that term, but it seems fair to characterise them that way.) decisions imposed on individuals by guardians, conservators and medical professionals.

A scanned pdf copy of the affidavit can be accessed here.

Below is a retyped copy of the affidavit.  I’ll share some of my own thoughts and reactions at the end.

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.

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.

Second, the most disturbing part of Alisberg’s affidavit is the description of the plan to end the life of the woman who was a heart transplant patient.  According to Alisberg, in spite of the woman having “expressed an unequivocal desire to live,” the medical staff were fully prepared to end the woman’s life through denial of anti-rejection therapy.  It seems to me that a medical team that could learn to live with ending the life of someone who expressed a desire to live could learn to live with just about anything.  That’s not a pretty thought.

Third, should we come up with a new term to cover individuals like the ones described in this affidavit?  Their current survival highlights to absurdity of some of the situations covered by the term “end of life decisions,” as the decisions to remove needed medical treatment were surely framed by guardians, conservators, and medical professionals in these cases.  Maybe we should call them “life nearly ended by an end of life decision” cases.  That’s probably too cumbersome to catch on.  Maybe we could fall back on a variation on the the familiar “near-death-experience.”  We could call these cases “near-eol-experiences.”  (Personally, I favor throwing the whole term “end of life” out in the trash and starting from scratch, terminology-wise, but I don’t think that’s gonna happen.)

I’m not really satisfied with the alternatives I put up.  Any suggestions out there?  I have a feeling there are a growing number of people who could fall under this new label.  Be nice if we could be the ones to craft the terminology this time.  –Stephen Drake