Statement to the House Health ad Government Operations and Judiciary Committees
Re: House Bill 370—“End of Life Options Act”
Thursday, February 16, 2017
Madam Chair, Delegates, and fellow citizens, I am here today to oppose House Bill 370, the “End of Life Options Act”.
My name is Sheryl Grossman. I have a very rare, genetic condition called Bloom’s Syndrome, so rare in fact that I am the 72nd case ever recorded worldwide, historywide.
Back in the olden days when I was diagnosed Dr’s didn’t know much and they advised my parents that I wouldn’t live past 2, maybe 4 (it got longer every yr—I’m 41 now and they just throw up their hands and shake their heads). My parents were told I wouldn’t walk, talk, or amount to much. They were told they should just put me away as they were young and could have other children. Clearly, Dr.’s don’t know everything.
This bill before you depends on Dr.’s stating that someone has 6 months, or less to live, a prognosis that pretty much everyone agrees is impossibly hard to accurately predict. As a disabled person, this bill scares me even more because I know the societal barriers (stigma and discrimination) that we face. Our lives are often seen as being worse quality of life and less worthy than others. Dr.’s whole profession sees us as broken and something to be fixed, but often we can’t be (and don’t want to) be fixed.
Why does this bill scare me given this statement, let me give you a personal example. Bloom’s Syndrome results in my being prone to multiple cancers. During my 7th cancer, a stage IV lymphoma that had metastasized to form a solid tumour in my liver, the head of Johns Hopkins Cancer Psychiatric Department entered my room during treatment, when I was barely conscious, barely able to speak. She said, “you know, you don’t have to do this anymore. You have been through so much. You can stop at any time you know, it is ok. We can simply turn off the machines, or we can increase your pain meds—you’re 37 lbs, it won’t take long”. I gave the last of my conscious energy to screaming NO and trying to get her out of my room. On her way out she said “I don’t understand why you want to live like this, in and out of hospitals for years.”
The answer is because I love my life. Sure, there have been plenty of times I have been bent over an emesis bowl when I didn’t feel that way, but this is my life and I am worthy of it! It has been 3 ½ years and 2 cancers and 1 chemotherapy regimen since then and here I am before you, a happy 41 year old.
Ladies and gentlemen, I fear that if this law were on the books then, I wouldn’t still be here today. It is far too easy to coerce someone into thinking themselves a burden to medical care staff, or family members. It is far too easy to make us think that our care is costing too much and draining those around us. This bill does not provide for a mental health evaluation before the prescription of lethal medications which takes away the only protection against this thinking.
When others in society say they want to harm themselves, crisis intervention services are provided. As a former certified crisis worker, I can tell you that many call back months and even years later to thank us for the intervention.
Why should people with disabilities and medical conditions with less than 6 months to live be treated any differently? I fear that even with a psychiatric evaluation, if one gets a psychiatrist like I did, who doesn’t believe in the quality of our lives, people will still be encouraged to choose an early exit. We should be providing long term care services to help these individuals and their support networks, not methods to die. Please, vote no on House Bill 370.
This concludes my oral testimony. I am providing a longer written testimony with additional points. I am available for any questions you may have. Thank you for this opportunity.