I stumbled across an excellent article in Bloomberg BusinessWeek written by Esmé E Deprez about a woman named Sandy Morris and her journey with ALS (also known as Lou Gehrig’s disease). The article explains how her illness inspired Morris to fight to change California’s End-of-Life Options Act, which has been in existence since 2016.

Like me, Morris is a former Hewlett-Packard Company employee, although I’m sure her tenure was longer than mine. The HP division I worked for was spun off as a separate company shortly after my arrival. But I felt a certain kinship to Morris, knowing we shared a common corporate culture, however briefly. And that we currently share a deep commitment to making medical aid in dying accessible to more people in the US.

While Norris remains mentally sharp, her illness has left her “inanimate below the chin.” A mechanical ventilator helps her breathe. She is assisted by a dedicated team of family members and paid caregivers who help her with every activity, from sitting up to eat to making zoom calls to legislators.

Morris plans to use medical aid in dying to end her life, but she struggles with figuring out the best time to do it. Like all medical-aid-in-dying laws in the US, the California law requires users to self-administer the lethal drugs. And therein lies the problem. Even if someone prepares the prescription beverage for her (which is allowed), how can she self-administer the drugs without the use of her hands? The self-administration requirement was intended to prevent vulnerable people from being coerced into ending their lives, but the unintended consequence is that people with neurodegenerative illness – like ALS and multiple system atrophy (which was my husband’s illness) – are forced to either end their lives early while they still are able to self-administer the lethal drugs, or wait until their disease progresses, when they are closer to dying naturally. But if they go this route, they risk losing the capability to self-administer the drugs. If they wait too long, ending their lives using a medical aid in dying prescription is no longer an option.

My husband chose the former route, taking the life-ending drugs while he was still confident in his physical ability to lift the mug to his mouth himself. Morris is already beyond that point.

In collaboration with her aid-in-dying physician, Lonny Shavelson, Morris has brought suit against the state of California, claiming that the way the aid-in-dying law is currently written, it violates the equal-access provisions of the Americans With Disabilities Act. As Deprez writes in her article:

“The prohibition on assistance is discriminatory, the suit contends, because it either excludes the severely disabled from participation or forces them to act earlier than they would if they had assistance, thereby creating an underclass of patients denied the same right provided to the more-able-bodied.”

If Shavelson and Morris are successful in winning their suit, we will be treading close to the long-held line that outlaws euthanasia, which is where someone other than the patient administers the life-ending drug. I wonder if efforts in the 40 US states that have not yet approved medical-aid-in-dying legislation will be shut down immediately if the prospect of approving medical aid in dying comes automatically with the necessity to include some form of euthanasia along with it to accomodate people with disabilities.

While my heart aches for Morris, I am not sure whether I should root for her suit to be successful. She understandably wants people with disabilities to be able to access MAID. I am concerned the majority of US residents will lose access to the benefits of MAID if she wins.

What do you think?