Matter of ES

[*1] Matter of ES 2006 NY Slip Op 50730(U) [11 Misc 3d 1087(A)] Decided on March 21, 2006 Sur Ct, Albany County Doyle, J. Published by New York State Law Reporting Bureau pursuant to Judiciary Law § 431. This opinion is uncorrected and will not be published in the printed Official Reports.

Decided on March 21, 2006
Sur Ct, Albany County

In the Matter of the Guardianship of ES, a Mentally Retarded Person.



G-90XX00



Michael O'Brian, Esq.

Tania Seaburg, Esq.

John VonAhn, Esq.

Attorneys for the Guardians

393 Delaware Avenue

Delmar, NY 12054

John Dorfman, Esq., Albany

Cristy Coe, Esq., Oneonta

Attorneys for Mental Hygiene Legal Services

40 Steuben Street, Suite 501

Albany, NY 12207

Chad Balzer, Esq.

Guardian Ad Litem

5 Clinton Square

Albany, NY 12207

Cathryn M. Doyle, J.

By decree of this Court dated March 14, 2001, CS and DS were appointed guardians of the person and property of ES pursuant to SCPA Article 17-A. Mental Hygiene Legal Services (hereinafter MHLS) appeared on ES's behalf in the guardianship proceeding and, following an investigation, found no grounds to request a hearing or to object to the granting of letters of guardianship.

Approximately five years later, by order to show cause dated January 6, 2006, MHLS commenced a proceeding in this Court seeking: 1) a declaration that ES not be denied life-sustaining treatment in the absence of compliance with SCPA § 1750-b, and 2) an order pursuant to SCPA § 1755 modifying the March 14, 2001 letters of guardianship to direct, among other things, that ES submit to a physical examination by a medical expert retained by MHLS and [*2]MHLS be provided with all medical, hospital and psychological records pertaining to ES.[FN1]

The petition states, in relevant part, that ES has progressive end stage kidney disease. MHLS bases this assertion on conversations MHLS had with the "staff" at Springbrook, the residential facility where ES resides, and a review of the medical records maintained at Springbrook. Attached to the petition is ES's December 5, 2005 Outpatient Laboratory Report and a letter from Dr. Howard M. Lifland, a Connecticut licensed physician, stating that ES is in need of dialysis as a life-sustaining treatment. Lifland's opinion is based entirely on the laboratory report from Springbrook.[FN2]

On January 4, 2006, oral argument was heard on the petition. John Dorfman, Esq. appeared on behalf of MHLS, the guardians appeared pro se, and the Court appointed Chad E. Balzer, Esq., as guardian ad litem for ES (see SCPA § 1755). As a threshold matter, the Court confirmed the guardians' authority to make health care decisions on behalf of ES which "may include decisions to withhold or withdraw life-sustaining treatment" (see SCPA § 1750-b).

MHLS thereafter argued that ES has a medical condition which requires life-sustaining treatment and further, that her guardians have made a decision to withhold such treatment, thus triggering the procedures set forth in SCPA § 1750-b (4). In support of its contention, MHLS submitted a letter, which was not attached to its' petition, from Dr. James Listman, ES's treating physician, to the guardians stating that ES "has advancing chronic renal insufficiency" and "recent laboratory results suggest that she is nearing end stage renal disease." The letter further states that Dr. Listman will support the guardians' decision not to proceed with dialysis "when it becomes medically indicated" (emphasis added). After hearing from all parties, the Court adjourned the matter pending receipt of the guardian ad litem's report.

Shortly thereafter, MHLS orally requested that the Court reconvene the proceeding as a result of a telephone call MHLS received from Springbrook that afternoon. The Court granted the request, and reconvened the proceeding at 4:00 p.m. that day. John E. Dorfman, Esq., appeared on behalf of MHLS, John Van Ahn, Esq. and Michael O'Brien, Esq., appeared on behalf of the guardians, and Chad E. Balzer, Esq., appeared as guardian ad litem.

MHLS asserted that at approximately 2:45 that afternoon, it received a telephone call from a registered nurse at Springbrook who stated that a Medicaid Service Coordinator asked her to call ES's treating physician and confirm whether ES is a candidate for dialysis. MHLS presented a letter from the registered nurse addressed to "whom it my concern," stating that ES's nurse practitioner confirmed that she could be a candidate for dialysis but that dialysis was not [*3]urgent or required at this time.

After hearing from all parties, the Court pointed out that the initial petition was brought by MHLS based upon a letter from a physician in Torrington, Connecticut, who was contacted solely by MHLS and who is not admitted to practice medicine in the State of New York and; further that this proceeding was sought based on the assertions of a Medicaid Service Coordinator, who has no medical degree and does not work in the field of medicine other than to work on the billing aspect of it. The Court found that MHLS failed to provide the Court with evidence that ES's "attending physician . . . with the concurrence of another physician with whom such attending physician shall consult" determined to reasonable degree of medical certainty that ES presently requires life-sustaining treatment (see SCPA § 1750-b [4] [b]) and dismissed the petition, without prejudice. By written order and judgment dated January 25, 2006, the Court confirmed the guardians' SCPA § 1750-b authority and dismissed the petition.

Thereafter, by order dated January 30, 2006 and upon stipulation of the parties, the Court directed any and all health care providers including but not limited to medical providers, hospitals and psychological providers to release to MHLS the medical and psychological records pertaining to ES.

By order to show cause dated February 6, 2006, the guardians commenced this proceeding seeking an order from the Court affirming their instruction to Dr. James Listman to withhold any and all dialysis treatment from their daughter ES. According to the affidavit of CS, on January 24, 2006, Dr. Listman indicated that dialysis was medically indicated for ES. Attached to the petition is a letter dated January 24, 2006 addressed to Dr. Listman from CS providing her consent to withhold dialysis treatments from ES (see SCPA § 1750-b [4] [b], [c]). Also attached to the petition is a letter dated January 26, 2006 to Dr. James Listman from MHLS stating that dialysis may not be withheld from ES until completion of the steps set forth in SCPA § 1750-b.

The Court agrees with the guardians and finds that the letter of January 26, 2006 as well as the actions and proceedings recently brought in this Court to compel the provision of dialysis to ES, constitutes a defacto objection on behalf of MHLS with respect to the withholding of life-sustaining treatment (see SCPA 1750-b). The guardians now seek an order from this Court affirming their decision to withhold dialysis and an order striking down any objection from MHLS.

Prior to the return date of the guardians' motion, and having delayed almost two weeks before doing so, MHLS presented the Court with an order to show cause seeking an order dispensing with the notice requirements of CPLR 3124 and directing the guardians produce ES for a physical examination by consulting physicians retained by MHLS. In opposition to the motion, the guardians informed the Court that, on February 10, 2006, they procured a second opinion from Donald McGoldrick, MD, a nephrologist at Albany Medical College Division of Nephrology. The Court reviewed McGoldrick's report which states, in relevant part, that: "On examination blood pressure was 150/90, weight was 89.5 pounds, and pulse was 68 per minute. What was most dominant was ES's reaction to my attempt at examination, which is why she became extremely upset, appeared terrified with the least physical examination. She has kyohoscoliosis. No gross CHF. Abdomen: Some surgical scars, no tenderness. However, it required 2 attendants [*4]to hold ES down to simply do a mild abdominal examination. There was evidence on her toes of self-mutilation from biting. Judging from her blood numbers, it would appear that ES will be heading towards endstage renal disease over the next year and will be confronted with the modalities of treatment, if appropriate for ESRD. First looking at transplantation, this would not be undertaken in view of neurogenic bladder requiring 6 catheterizations per day with a high incidence of recurrent urinary tract infections, which could be disastrous for a renal transplant. Compliance issues would be extreme in her situation and self-mutilation could also compound attempting to do a renal transplant; that then would leave her with dialysis. Looking at the peritoneal dialysis, this would be potentially fraught with problems in view of the single largest complication and commonest complication associated with CAPD is peritonitis. If she developed peritonitis with a VP shunt, she could have a disastrous neurologic complications and clearly death would be a distinct possibility. Left with hemodialysis, judging from her small extremities and tiny vessels, unlikely that an AV fistula would be successful and doubt that an AV graft would be successful; that then would leave her with the possibility of a PermCath if typically in subclavian of IJ position, but in view of her constant digging with her hands and nails and self mutilation, this would be fraught with complications of possibly pulling these catheters with life threatening bleeding. Finally, she possibly could have and IVC approach; this too could lead to many complications. Another question that would need to be answered, can she remain still enough to perform hemodialysis even marginally safely? If my exam is any reflection, the answer is absolutely no. Putting all of the above together, I believe that the appropriate approach is to simply have a supportive conservative care with medications and not to pursue dialysis in this patient" (emphasis added).

The Court denied MHLS request for an independent medical examination for two reasons: 1) Dr. McGoldrick's report provides additional unbiased medical information to MHLS and clearly demonstrates that ES is not your typical patient and that a simple medical examination is a huge burden on her and, 2) the language contained in SCPA § 1750-b itself.

Specifically, SCPA § 1750-b does not provide MHLS with an absolute right to an independent medical examination. Had the Legislature so intended, it readily could have provided for same in the detailed procedures set forth in the statute. The Court noted that the statute grants MHLS the authority to object to the guardians' decision but places the burden on the guardians to prove that their decision is being made in the ward's best interest. The Court further noted that MHLS has full access to ES's medical records. The Court's decision was reduced to a written order and judgment dated and filed February 21, 2006.

A hearing on the guardian's petition commenced on March 2, 2006 at Springbrook located in Oneonta, New York. The guardians called Dr. James A. Listman, Lisa Marie Hoffman, a registered nurse at Springbrook, and Traci Lanner, a master's level psychologist at Springbrook, as witnesses. In addition, the Court along with counsel visited ES at school. Day two of the hearing took place on March 6, 2006 at the Albany County Courthouse. The [*5]guardians called CS as a witness and MHLS called William Twasutyn, the residential director at Springbrook. The final day of the hearing, March 9, 2006, began at Albany Medical Center with the testimony of Dr. Donald McGoldrick. The hearing concluded that afternoon at the Albany County Courthouse with the testimony of Dr. Deborah Kriss, a State licensed physician, and Dr. Howard Lifland.

Legal Analysis

When SCPA Article 17-A was enacted, it was silent as to a guardian's authority to make health care decisions for a ward. Effective March 17, 2003, the Legislature amended SCPA Article 17-A to provide standards for healthcare decision making authority for mentally retarded persons with 17-A guardians (see Matter of Storar, 52 NY2d 353 [1981]). The statute empowers the Surrogate to authorize the guardians of a mentally retarded person (not MHLS) itself to "make any and all health care decisions" for a ward that a person with capacity might make, including decisions to withhold or withdraw life-sustaining treatment (see SCPA 1750-b [1]).[FN3]

Decisions relating to life-sustaining treatment are addressed under SCPA 1750-b (4). The guardian is affirmatively obligated to "advocate for the full and efficacious provision of health care, including life-sustaining treatment." In addition, the guardian is not empowered to act with reference to life-sustaining treatment until the attending physician confirms to a reasonable degree of medical certainty that the mentally retarded person lacks capacity to make health care decisions, a determination that must be made in consultation with another physician or licensed psychologist (see SCPA 1750-b [4] [a]). Either the attending physician, or the consulting psychologist or physician, must have specified mental health training or certification.

In order for the guardian to be empowered to direct the withdrawal or withholding of life-sustaining treatment, the attending physician, with the concurrence of another physician, must determine, and note on the patient's chart, that: 1) The mentally retarded person has a terminal condition, is permanently unconscious, or has a medical condition, other than mental retardation, which requires life-sustaining treatment and is irreversible and will continue indefinitely; and 2) the life-sustaining treatment would impose "an extraordinary burden" in light of the person's [*6]medical condition, other than mental retardation, and the expected outcome of the life-sustaining treatment, notwithstanding the person's mental retardation (see SCPA § 1750-b [4] [b]).

With respect to withholding treatments, the statute requires the guardian directing the withholding of life-sustaining treatment to do so either in writing, or orally, in front of two witnesses. Then at the earliest time prior to the implementation of a decision to withhold life-sustaining treatment, the attending physician must notify certain individuals of the decision, including MHLS, to allow for objections (see SCPA § 1750-b [4] [e]).

In the event of an objection, SCPA § 1750-b (6) authorizes certain individuals to commence a special proceeding in a court of competent jurisdiction. The guardians here commenced such special proceeding and the Court heard the following testimony, at the conclusion of which a motion was made and granted to conform all pleadings to the proof.

Day One - Dr. James Listman

Dr. James Listman is ES's treating nephrologist. He is an Assistant Professor of Pediatrics at Upstate Medical University in Syracuse, New York, and has extensive experience with developmentally disabled and mentally retarded individuals. He had been treating ES since 1998. According to his testimony, ES is a 23 year old woman with spina bifida complicated by Arnold-Chiari malformation and shunted hydrocephalus, profound mental retardation and, due to chronic renal insufficiency, has reached the point where dialysis is medically indicated. Listman explained that renal insufficiency is unlike other terminal conditions in that treatment is required indefinitely to prevent death from renal failure. He further explained that starting ES on dialysis presents unique problems.

Dr. Listman discussed the methods of dialysis beginning with peritoneal dialysis which is done by surgically placing a catheter into the abdominal cavity. Peritoneal dialysis allows the patient to instill fluid into the abdomen which allows waste products and extra salt and water to move into the abdomen, that's drained in repeated cycles. According to Dr. Listman, ES's spina bifida malformation complicates this method of dialysis because she has a tube that drains the spinal fluid from her brain down into the abdomen which requires that the two spaces be connected, greatly increasing the risk for serious life threatening infection. Dr. Listman does not recommend peritoneal dialysis for ES given her unique situation.

Dr. Listman next described hemodialysis which is the process where the blood stream is accessed and the blood is pumped through a dialysis filter through an external device, filtered and put back into the body. Hemodialysis requires three times per week visits to a dialysis center and, in most facilities, treatments are approximately four hours. There are two general ways of hemodialysis: 1) a native fistula which is a connection between the artery and the arm, and 2) a central venous catheter which is a big catheter placed in a central vein.

According to Dr. Listman, a native fistula is difficult to accomplish in small patients because small patients have small vessels. A fistula requires needle sticks with very large needles that inflict pain and fear and require a very cooperative patient. In addition, most patients on dialysis require surgical intervention and hospitalization to maintain vascular access or treat other complications.

A central venous catheter requires surgical placement to access the blood stream. According to Dr. Listman, the catheters do not work indefinitely as clots form that block blood flow and may become infected. Dr. Listman stated that due to ES's condition, access is [*7]complicated because of her overall debilitated state and kyphoscoliosis. In addition, to all of the medical problems associated with dialysis, ES would have to modify her diet and take numerous medications. Also, she would have to be transferred from Springbrook to a facility that could provide transportation to a local dialysis facility. According to Dr. Listman, the burden of dialysis would be too great on ES because she does not adapt to change easily and self-mutilates when stressed.

Listman explained that, at certain times, he was unable to perform routine physical examinations of ES because of her uncooperativeness. He further stated that ES's behaviors place her at great risk of pulling at her dialysis lines. In response to whether ES would be able to understand the benefit of dialysis, Dr. Listman stated that "[ES] does not have the mental capacity to appreciate the benefit of dialysis. Her enjoyment from life is not derived from expectations for the future but from day-to-day interactions with her parents and her care givers at Springbrook." Dr. Listman further opined that initiating dialysis will create great physical pain and emotional stress to ES. Specifically, on cross-examination by the guardian ad litem, he offered the following insight:

Question. And in your January 30th, 2006, medical record that's in evidence, you indicated that you concurred with the decision of the parents not to partake in dialysis, is that correct?

Answer. Correct.

Question. Is that sill your position?

Answer. Yes.

Question. Mr. Dorfman asked you a question and maybe it's just semantics here but is there a difference between whether something is medically indicated or whether a procedure would be something you'd undertake in your medical judgment? Is there a difference to those two things from your perspective?

Answer. Something is indicated?

Question. I can specifically speak to what I'm talking about. If dialysis is medically indicated, does it necessarily mean it would be your medical judgment to initiate dialysis?

Answer. Not necessarily. Probably most of the time, yes, but not all of the time.

Question. In this case as it relates to [ES], is there a difference from your perspective as a physician or treating physician as to something being medically indicated and whether in your medical judgment dialysis should be put in place?

Answer. Yes. Correct.

Question. And they differ in this circumstance?

Answer. Yes.

Question. And dialysis is medically indicated?

Answer. It's, yeah, for treatment of chronic renal failure, yes.

Question. Where in your medical judgment it would not be able to partake in dialysis for ES?

Answer. Yes, correct.

Question. You indicated that dialysis was not a pain-free circumstance, is the correct?

Answer. Yes. [*8]

Question. And would you say that there would be pain caused to [ES] with respect to these procedures?

Answer. Yes.

Question. If she undertook dialysis?

Answer. Yes. I should clarify it, not necessarily every interaction for dialysis is going to be painful but there will definitely be periods that will involve pain.

Question. Now you indicated one risk with respect to infection for catheterization is that the person would pull out the catheter, and if I'm not mistaken - let me take that back. That if the catheter was infected, it would have to be put in?

Answer. That can be a reason to take it out. Most of the time if the catheter is infected, you can get it treated with antibiotics and save it because there are occasions where you need to take it out because of infection.

Question. And then you relocate it?

Answer. You can, well, if it's, if it's, it depends. You might have to relocate it.

Question. Which would require another procedure to do that?

Answer. Yes. Even if you replace where it was, it's another procedure. Doesn't really matter where you put it.

Question. Is that a surgical procedure, persons under anesthesia or no?

Answer. For [ES] it would definitely have to be done sedated because she wouldn't tolerate that.

Question. You know [ES's] parents from your dealing with [ES]?

Answer. Uh huh.

Question. Have they been involved in her care?

Answer. Yeah. I think so.

Question. Since your interaction with [ES] becoming your patient, have her parents communicated with your office regularly?

Answer. Yes.

Question. To your knowledge?

Answer. Probably more so with Sue, Sue takes some.

Question. But she's in your office, right?

Answer. Yes.

Question. Are they interested in the issues that concern their daughter from your perspective as a physician?

Answer. Yes.

Question. Do you think they take steps to educate themselves with respect to decisions regarding their daughter?

Answer. Yes.

Question. They listen to you when you talk to them?

Answer. I think so.

Question. Do they seem to process what you're talking to them about?

Answer. Most of the time. I think as well as most people can. A lot of time there's nuance and detail that gets lost and it requires, you know, going over it again, but I think they're compassionate people and interested in doing the right thing. [*9]

. . .

Question. Have they form your perspective as her physician taken your advice generally speaking with respect to their daughter?

Answer. Yes.

. . .

Question. You brought [ES's] specific situation before an ethics committee, that governs the behavior of physicians, is that correct?

Answer. Yes.

Question. And that bringing it before that ethics committee, your opinion still has not changed with respect to your determinations as to what's appropriate for [ES]?

Answer. Correct.

According to Dr. Listman, any maneuver that removes ES from the loving environment she now enjoys would be detrimental to her well being and void of any expectation for improvement in the future. In conclusion, Dr. Listman stated that although dialysis is medically indicated for ES he agrees with the guardians' decision to withhold dialysis treatment because he found the treatment to be an extraordinary burden upon ES.

ES

The Court next interviewed ES in her school setting. Counsel for all parties

were invited to come along and observe, and all counsel consented to the absence of the Court reporter so as to minimize ES's discomfort. After ES became noticeably upset with the presence of strangers, counsel withdrew a short distance. All counsel had previous interviews with ES. ES is a small, frail young woman, who physically appears more like an eight year old than her twenty-three years. She is wheelchair bound, and has no sensitivity in her lower extremities. During the Court's interview, ES continually asked for "Momma" and stroked my hand. She was agitated by the break in routine and became very nervous. Her teacher's aide and the teacher advised the Court that ES did not easily adapt to even the slightest change in routine and displayed ES's raw toe, which she had severely bitten the day before upon becoming agitated. ES displayed little, if any, insight into her surrounding circumstances, had an extremely short attention span, and demonstrated virtually no self-control. These observations were confirmed by her classroom care givers to be the norm, rather than the exception to her behavior.

Lisa Marie Hoffman, RN

Lisa Marie Hoffman, a RN at Springbrook, has been working with ES for approximately seven years. She provides emergent care for ES, takes ES to nephrology appointments, does medical note reviews and, at times, performs medical procedures such as catheterizations. Hoffman accompanies ES on her medical appointments outside of Springbrook. According to Hoffman, ES requires two staff members to accompany her to medical appointments due to behavioral issues. Hoffman stated that ES does not like going to doctors' appointments and, at times, she will scream and/or bite herself. For example, ES recognizes the laboratory clinic where she gets blood work done and will stop her wheelchair from moving. In addition, ES suffers from a high degree of anxiety when she attends her medical appointments. She becomes very impatient, will start screaming and, at certain times, will self-mutilate by biting her toe.

According to Hoffman, ES needs two staff members to hold her down to do simple procedures such as drawing blood. The other nurses at Springbrook often ask Hoffman to do [*10]ES's blood pressures and pulse because ES will not cooperate with them. At several medical appointments, ES had to be restrained from pulling out her IV.

With respect to ES's present medications, Hoffman explained that concerns have been raised over ES's ability to accept her medications because Springbrook hired a new group of people and ES refuses to take medication from someone she is not comfortable with. Further, she has been known to refuse medication even from those whom she knows and trusts. Hoffman also stated that ES will only eat certain foods which generally include pastas and breads.

In response to questions about ES's guardians, Hoffman stated that CS and DS are, and have always been, greatly involved in ES's care. Hoffman further stated that based on her experience with ES, three to fours hours is a very long time for ES to endure a medical treatment. She would require a one-to-one staff to be with her and would have difficulty tolerating dialysis. If ES is in a pleasant mood, Hoffman states that ES may be able to tolerate the procedure for one hour, at most.

Traci Lanner, Psychologist

Traci Lanner, a Master level psychologist/behavioral specialist at Springbrook, oversees the development and implementation of behavior support plans for individuals who exhibit challenging behavioral issues at Springbrook. Lanner has been working with ES for more than six years. According to Lanner, ES suffers from behavioral issues which include self-biting. In addition, when ES is uncomfortable or agitated she will scream. Lanner stated that medication has been unsuccessful in eliminating ES's behavioral problems.

With respect to ES's ability to benefit from dialysis, Lanner does not believe that ES would allow a foreign object to protrude from her body and that she will try to remove it. Additionally, Lanner confirmed that ES has difficultly with transition and stated that nothing in her behavioral plan addresses the issue.

On cross examination, the guardian ad litem asked Lanner, in terms of behavioral training, "[I]f the Court were to determine that dialysis would be an appropriate procedure, would one of the ways to try to create an atmosphere wherein ES could successfully complete dialysis would be to make many visits to a local dialysis center before the initial attempt to do dialysis?" Lanner responded that it might help but "[t]here's no actual behavioral science in something like that" and stated that there is no guarantee that it will work for ES.

Day Two - CS

CS and DS presently reside in Albany County. As residents of Staten Island for generations, they gave up their family home and the pleasure of the daily company of their remaining friends and family, including their young grandchildren, to be near ES. They have three children: Jason, Mark, and ES, and several grandchildren, none of whom they can now readily see. When placing ES in a residential facility, the guardains refused placements closer to their home and sacrificed their own interests to ensure the maximum beneficial placement of ES.

It is clear to the Court that CS takes her appointment as ES's guardian very seriously. She is unquestionably a loving, caring compassionate mother, who is involved in every aspect of ES's life. Since becoming ES's guardian in 2001, she fought to keep ES in Springbrook, despite OMRDD's attempt to move her to an adult facility when she reached the age of 21. According to CS, she felt that it was inappropriate to place ES in an adult facility and, further that ES would not be happy if she was moved a different facility. Thereafter, CS spoke with the residential [*11]director at Springbrook, who supported her decision, and contacted OMRDD who needed to approve the special funding aspect of ES's continued placement.

Prior to entering residential placement, ES lived at home with her parents for 16 years. CS was ES's primary care giver because DS worked full-time. According to CS, ES required daily care which included, but was not limited to, feeding, washing, grooming, and regular catheterizations. Aside from a short period of time when a home care nurse came to their home for a couple hours a day, three days a week, the guardians cared for ES around the clock. Under the loving care of her parents, ES was afforded every educational, therapeutic and medical service available.

According to CS, she first became aware of ES's cognitive impairment when she was about six months old. She became aware of ES's difficulty with her kidneys almost immediately thereafter. CS testified that it's almost a given with spina bifida that there is going to be some neurological problems, and a test at six months revealed kidney damage. ES was diagnosed with reflux when she was a year old.

At 18 months old, ES had bilateral urethral reimplantation surgery in an attempt to prevent the reflux. CS, who is extremely well versed on ES's medical condition, stated that years later, another urologist told her that the surgery probably did more damage than it had helped. To this day she regrets not getting a second opinion before subjecting ES to a worthless surgery.

William Twasutyn

William Twasutyn, the residential director at Springbrook, testified on behalf of MHLS. The Court does not give much weight to his testimony. Mr. Twasutyn has not spent any significant amount of individual time with ES and has never taken her for a medical appointment or procedure. Mr Twasutyn's role at Springbrook appears to be administrative, as opposed to individual care and treatment.

Day Three - Dr. Donald McGoldrick

Donald McGoldrick M.D., a nephrologist practicing for forty years at Albany Medical College Division of Nephrology, where he was Chairman for twenty-five years, testified that the guardians asked him to provide them with a second opinion with respect ES. At the hearing, Dr. McGoldrick presented as a quiet-spoken, gentle mannered person with a calming, non-threatening demeanor. McGoldrick reviewed ES's medical record, took a history from her mother, and thereafter conducted a physical examination. With respect to the physical examination, McGoldrick stated that "[ES] got extraordinarily distraught, fought him tooth and nail to simply put [his] hand on her tummy." McGoldrick needed two assistants to hold ES down so that he could conduct his examination. McGoldrick described ES as "a terrified mentally retarded human who did everything to resist."

Dr. McGoldrick testified that during his one and a half hour examination, ES presented a young lady who was clearly mentally retarded with a history of extreme brain issues from birth requiring a shunt from her brain down to her perineum. Additionally, ES has a history of bladder problems which has caused major damage in her kidneys.

With respect to typical treatment, Dr. McGoldrick testified that transplantation would not be undertaken in view of ES's neurogenic bladder which requires numerous catheterizations per day with a high incidence of recurrent urinary tract infections. Also, she is immunosuppressed, and anything to do with infection would be life-threatening. Moreover, dietary and medication [*12]compliance issues would be extreme in her situation and self-mutilation could also compound attempting to do a renal transplant.

Turning to dialysis as a treatment option for ES, Dr. McGoldrick testified that peritoneal dialysis would be potentially fraught with problems in view of the single largest complication which is peritonitis. If she developed peritonitis with a VP shunt, she could have disastrous neurologic complications, and clearly death would be a distinct possibility. ES would increase the possibility of this complication if she began pulling at the shunt.

With respect to hemodialysis, Dr. McGoldrick stated that judging from ES's small extremities and tiny vessels, it was unlikely that an AV fistula would be successful. He further stated that he doubted that an AV graft would be successful. Turning to what is referred to as a permcath, Dr. McGoldrick stated that a permcath it is a catheter that is placed into a central venous system that sticks out of you. Dr. McGoldrick explained that this would be difficult in light of ES's constant digging with her hands and nails and self mutilation. Dr. McGoldrick stated that the permcath would be fraught with complications of possibly pulling at the catheters with life threatening bleeding and an IVC approach could lead to numerous complications. According to Dr. McGoldrick, an overriding factor is that ES would probably not be able to remain still long enough to perform hemodialysis safely.

Dr. McGoldrick stated that in his opinion the appropriate approach is to simply have a supportive conservative care for ES with medications and not to pursue dialysis. Dr. McGoldrick explained that due to her behavioral issues ES would not be able to deal with dialysis treatments. Dr. McGoldrick explained that if ES gets disconnected, she would exsanguinate and die. He described it as suffering from a gun shot wound and losing so much blood that you cannot replenish it. Dr. McGoldrick further stated that the typical dialysis center has one nurse technician or LPN for every four patients. Dr. McGoldrick also stated that without dialysis ES would be facing end stage renal disease and, there is a 50 percent chance she would die within six months.

On cross-examination by the guardian ad litem, Dr. McGoldrick was asked to describe how someone who is in kidney failure and does not opt for dialysis dies. Dr. McGoldrick responded that the patient slowly gets weaker and begins to lose appetite, and generally without pain, will succumb. He further stated that it is not a painful death and tends to be somewhat peaceful. Dr. McGoldrick was quite clear that dialysis, even if performed successfully (which is not likely, given ES's general condition and behaviors), will merely serve to prolong the inevitable death from renal failure. He opined that dialysis is not a cure, nor is it a long term substitute for kidney function, and that death during or following a course of dialysis treatments most likely will not be as peaceful as death from the untreated renal failure. He was unequivocal that with or without dialysis, ES will die of renal failure or related illnesses, and those related illnesses could be far more painful than the renal failure itself. Notably, his testimony paralleled that of ES's treating physician.

Dr. Deborah Kriss

MHLS called Deborah Kriss, a physician formerly employed at Springbrook, as a witness. Dr. Kriss previously worked with ES and was retained by MHLS in this matter. According to Dr. Kriss, it is her opinion that going to a dialysis center would not upset ES. Dr. Kriss bases her opinion on the fact that ES goes on field trips to the bowling alley and does not [*13]get upset.

On cross-examination, Dr. Kriss stated that she was unaware that ES's visits to the laboratory are difficult. She stated that ES is reasonably cooperative with staff unless someone is doing something that she doesn't like. Dr. Kriss further stated that she never witnessed blood being drawn from ES and admitted that ES was most likely comfortable with her because she had time to get to know her. She dealt with ES mostly as a behavioral specialist in a therapeutic psychological interaction as opposed to hands-on medical treatment.

Significantly, Dr. Kriss, a witness for MHLS, specifically testified that "[ES] doesn't have the legal capacity to make medical decisions and we try to make the best decisions for her." Dr. Kriss failed to provide the Court with any further relevant information.

Dr. Howard Lifland

Dr. Howard Lifland, a physician licensed to practice in Connecticut and Georgia, was hired by MHLS as a consulting physician in this matter. Dr. Lifland testified that after reviewing ES's medical records he is of the opinion that dialysis is medically indicated for her at this time. Dr. Lifland further testified that without having had the opportunity to physically examine ES he is unable to determine if he would recommend dialysis at this time or ever.

According to Dr. Lifland, certain methods and procedures can be implemented when treating patients with behavioral problems similar to ES such as providing a reassuring environment and getting the patient familiar with the environment. Dr. Lifland further stated that sedatives may be used but are unpredictable. Dr. Lifland thereafter described the methods of dialysis and the problems associated with each. His testimony in this regard was substantially similar and not in opposition to that of Dr. Listman and Dr. McGoldrick.

On cross-examination Dr. Lifland reiterated that medically indicated does not mean medically appropriate. Dr. Lifland stated that when determining whether dialysis is medically appropriate, you must consider ES's ability to cooperate with the procedure; her ability to sit still for the duration of the procedure; her ability to tolerate the procedures that would need to be done leading up to and including the dialysis procedure itself and; her ability to tolerate three hours to four hours three times a week without causing a disruption or disturbance to the rest of the dialysis unit. According to Dr. Lifland all of the foregoing factors must be taken into consideration in determining if dialysis is medically appropriate for ES.

CONCLUSION

As has been established in the original 17-A proceeding, the proceeding to confirm the guardians' health care decision making powers, and the within special proceeding, ES suffers from numerous medical conditions, including profound mental retardation. She is and always has been incapable of making health care decisions to a reasonable degree of medical certainty. These findings are un-controverted and, in fact, supported by the testimony of not only the treating physicians and guardians, but also witnesses for MHLS.

In light of the testimony, and the evidence presented, the Court finds that ES is a mentally retarded person with a medical condition other than the mental retardation which requires life-sustaining treatment, is irreversible and which will continue indefinitely, to wit, end stage renal failure (see SCPA § 1750-b [4]). The Court further finds that the life-sustaining treatment would impose an extraordinary burden on ES in light of her medical condition other than the mental retardation, and the expected outcome of the proposed life-sustaining treatment, dialysis (see [*14]SCPA § 1750-b [4] [b] [ii]).

In the case at bar, there is full agreement among: the treating physician Dr. James Listman, experienced in both pediatric and nephrological treatment of the mentally retarded; his medical associates/partners; the ethics committee of Upstate Medical University; the second opinion doctor, Dr. Donald McGoldrick, former long-time Chair of Nephrology of Albany Medical Center, also experienced in treating the mentally retarded; Chad Balzer, ES's guardian ad litem and the loving care-giving parents and guardians of ES. Dialysis would be nothing more than a cruel prolongation of the inevitable.

ES's mother referred to dialysis treatment as "selfish," and described with poignant clarity twenty-three years of ensuring state of the art medical care for ES, of living with her throughout eleven major and four minor surgeries and twenty-five hospitalizations, of caring for her twenty-four hours a day for sixteen years until ES became too unmanageable to handle without professional back-up, of giving up her family home to be with ES in the best residential facility available, of fighting to keep her in a home in which she became ineligible to continue. CS's love, care and concern is a model for all parents to follow, and her tearful plea to ensure the comfort, dignity and uniqueness of ES should not go unheard.

The Court can find no basis for the position of MHLS in this matter. MHLS has disregarded the opinion of the loving parents/guardians, treating physicians and other front line services providers in pursuit of what it has summarily determined to be ES's "best interests." MHLS is charged by statute to represent ES's interests. It is not the statutory function of MHLS to establish "public policy," which, based upon the record herein, appears to be the motive behind much of these proceedings. Counsel for MHLS made frequent reference to Matter of Storar (supra), which is no longer the law of the land. In fact, there is a long history of the Courts of New York State imploring the Legislature to enact a statutory mechanism to provide the mentally retarded and disabled with the same right as all of the other citizens of New York: the right to live and die with dignity. There has been no showing and the record is absolutely void of any evidence that the guardians of ES have failed to base all advocacy and health care decision making solely and exclusively on the best interests of their beloved mentally retarded daughter, ES.

Most significantly, the legislature has given the duly appointed 17-A guardians the power to make medical decisions including life sustaining treatment for the mentally retarded, not MHLS itself. Absent a deviation from the standards set forth in SCPA § 1750-b, MHLS has no authority to try and interject any "public policy" it may feel more appropriate than that devised by the Legislature. The function of MHLS in representing a 17-A ward in such proceedings as these is to ensure that the statutory safeguards have been met. It is NOT to substitute its medical judgment for that of the guardians. The statutory safeguards have been met in this case, and the guardians have proven not merely by a preponderance of evidence, not merely by clear and convincing evidence, but beyond a reasonable doubt, that their decision is appropriate. They have far surpassed their burden of proof.

The Court finds MHLS' constitutional challenges to SCPA § 1750-b to be without merit. Similarly, the Court finds MHLS' reliance on the powers of Elmo to be ridiculous.

The Court affirms the guardians' decision to withhold dialysis and strikes down any express or implied objection from MHLS. Here, the Court is confronted with two loving parents [*15]who have been regularly involved in ES's life. It is undisputed that ES is unable to appreciate the benefit of dialysis but will most certainly understand the pain. Even Dr. Lifland, testifying on behalf of MHLS stated that while medically indicated dialysis may not be appropriate but that doctor's could "experiment" with ES to see if it could be done. ES deserves better than to be an "experiment."

Accordingly, it is

ORDERED that the guardians' decision to withhold life-sustaining treatment is affirmed and; it is further

ORDERED that any and all objections to the guardians' decision is rejected.

This constitutes both the decision and order of the Court.

Dated: March 21, 2006

_______________________

Surrogate Footnotes

Footnote 1: Despite this Court's ongoing jurisdiction of this matter, in June 2005, MHLS prepared and submitted an order to show cause in Otsego County Supreme Court seeking a declaration that Springbrook provide MHLS with access to ES's records, and afford MHLS and its consulting physician the opportunity to "observe" ES. Otsego County Supreme Court properly returned the order to MHLS unsigned.

Footnote 2: The MHLS Article 47 authority to secure records directly from a facility only extends to facilities that are licensed by OMH and OMRDD. Therefore, MHLS needs the consent of the guardians or an order of this Court to access ES's treatment records from general hospitals and other medical providers.

Footnote 3: The official Revision Note to 1750-b provides the following: "Currently, under New York State law, persons must be mentally competent to order withdrawal or withholding of life-sustaining treatment in the event they become terminally ill and believe continued treatment would be excessively burdensome. If they are not mentally competent, having lapsed into a coma for example, they cannot have life-sustaining treatment withdrawn or withheld unless they previously (when they were mentally competent) left a living will or appointed a health care proxy to make such decision for them. However, many persons with mental retardation never have the mental competency to draft a living will or appoint a health care proxy. They can never, nor can anyone acting on their behalf, order withdrawal or withholding of life-sustaining treatment, except when declared brain dead. Consequently, they may linger, through unnecessary medical intervention, in a state of irrevocable anguish. Persons with mental retardation are, as a class, uniquely disqualified from health care rights essential to the humane and dignified treatment to which every other citizen is entitled. This legislation provides carefully controlled legal and medical process for withholding or withdrawing life sustaining treatment while safeguarding the rights, liberties and best interests of persons with mental retardation."