February 5, 2018

We advocates for those with disabilities frequently are heard to say that the disabled are the last group it is OK to discriminate against. The kinds of civil rights we usually have in mind have to do with things like employment, respect in medical settings, or residential settings that are safe and environments for thriving.

But the civil right Delaware has chosen for our vulnerable loved ones with intellectual disabilities is the right to choose to die. Not only is this not exactly my first choice of a civil right to have guaranteed to them, but the manner in which it is being done is quite disturbing.

The sponsor of Delaware’s assisted suicide legalization bill has amended the proposal to include the terminally ill “intellectually disabled.” From Amendment 2 to House Bill 160 (my emphasis):

“Intellectual disability” means a disability, that originated before the age of 18, characterized by significant limitations in both intellectual functioning and in adaptive behavior, which covers many everyday social and practical skills.”

The Bill says that for any person to choose assisted suicide, that person must be terminal, and in the attending physician’s opinion that person is able to make and communicate medical decisions, including communicating through a person familiar with that person’s manner of communicating.

The Bill nowhere mentions the effect of a guardianship on the ability of an Intellectually Disabled person to choose assisted suicide. From the four corners of the Bill, it appears that an attending physician could disregard a guardianship.

However, even presuming that other portions of Delaware statutes would preclude circumventing the guardian, we nonetheless still have situations where very intellectually disabled adults are not under guardianship. Many of our clients know of these situations – for example, where such a person has been living with parents until a crisis occurs because the parents die or become too frail to care for their child. And note the recent trend and enthusiasm, particularly among elder law attorneys more than special needs attorneys, of “Supported Decision Making” as an alternative to guardianship, where all legal decision-making authority remains with the impaired person.

So, what safeguards does the Bill put in place for such a person, where a mere doctor’s opinion, possibly relying on someone else’s say-so (“a person familiar with that person’s manner of communicating”) who might not have the disabled person’s best interests at heart, is all we have to go on? Or, as it appears on the face of the Bill, if the guardian does not factor in at all? Does the decision for suicide at least appear before a judge to make a determination?

No. Instead, the “safeguard” is merely referral to a social worker.

   (b) If the patient has a documented intellectual disability, the attending physical shall refer the patient to a licensed clinical social worker who shall ensure that the patient fully understands the information provided pursuant to § 2504B(3).

No medication to end a patient’s life in a humane and dignified manner may be prescribed unless the licensed clinical social worker has confirmed in writing to the attending physician that the patient understands the information provided pursuant to § 2504B(3).”

Our plea for civil rights for our Intellectually Disabled loved ones is for life with dignity. The focus of the Delaware legislature on death instead conveys the message all too often implied by society: your life is not worth living.

In our opinion, we would not like to see legislation of this nature in Massachusetts. When my daughter Elizabeth’s mitochondrial disease had reached devastating effects on her entire little body, I was faced with the toughest decision a caregiver, parent or loved one could ever face: is it time to stop medical interventions? It was heart breaking and gut wrenching and 4 years later I relive that decision much more often then I like to admit. But the pneumonias were going to keep coming and I decided not to treat this last one, and let her go.

Elizabeth could not really communicate to me what she would want, nor did she have the intellectual capacity to weigh all the factors. Because she was 17, consultation with her doctors and not a probate court judge was all that was required. But if the doctors disagreed with me, they would have gone to court to seek review of the decision. If it had happened at age 18 and I were her guardian, it would have required me to go to court to get a judge’s approval to withdraw care and not treat the infection/pneumonia.

These protections comfort me. In our work, we see and hear of all manner of cases. In many instances, money and property left to the disabled person in trust often have remainder beneficiaries who are their siblings or other close family members. These same siblings or close family members are also the guardians in most situations. While most individuals have good intentions and loving giving hearts, not all do. I agree with a court review to determine if it is appropriate to withdraw care. If a bill such as this were introduced in our state, I would insist that a court would need to review any action that would initiate death.

  • Mark Worthington and Annette Hines (Elizabeth’s Mom)