Right to Die: expanding physician-assisted suicide

I don’t fear death as much as I fear losing my mind.

 

I chronicle my daily life through photos, videos, and journals. While some may think of it as a healthy way of processing my emotions and feelings, in the back of my mind I consider the possibility that there will be a time when I need these to remember who I was and who I am.  

 

I watched my grandfathers on either side suffer from Alzheimers and dementia. Now my maternal grandmother, Nonie, is beginning to show early signs of dementia. Before I studied abroad in Spain she asked if I needed yen for my study abroad in China. Last week she asked me if I needed help writing my college essays. While my family is now trained to laugh off comments like this, every time I feel a sinking in my stomach as I brace for when her confusions turn from funny to heartbreaking. 

 

These incurable disesases are horrible and lengthy. Your body survives as your mind fades. I can’t remember my paternal grandfather, Grandpa Gill, without Alzheimers. I only knew his expressive eyes that would react to the world around him. When I began to form memories of my own, he already lost his ability to speak and would sip his food through a straw.

 

I saw my maternal grandfather, Grandad, decline before my eyes. Once a college football star, at the end of his life he weighed so little I could’ve picked him up. The last time I saw him, I watched as he stared blankly at my mom, unable to place her. 

 

That day, my mom left the retirement home crying. She confided that she was wrought with guilt. She told me that before his diagnosis they had passed a retirement home and he said in his iconic southern drawl, “Let me just tell you. If you’re ever thinking of putting me in a place like that, just let me out of the car right now, because I’m gonna run in front of that sand truck.” 

 

He died in a nursing home after three years of living in one on March 30th, 2020. My mom said, “It was the absolute opposite of what he would’ve wanted if he was in control.”

 

My grandfathers weren’t able to die with dignity. They died in pain and confusion. They died only after years of expensive, intensive around the clock care. They died after their soul left their physical form.

 

They weren’t given the option to decide when their life would end. 

 

In the United States, physician-assisted suicide is legal in ten states and the District of Columbia. In all of those states, the laws completely exclude Alzheimers or dementia patients who would seek out this type of care. Here, a physician has to sign with certainty that a patient will die within the next six months. 

 

In cases of memory loss diseases, there is no distinct timeline of death. Grandpa Gill steadily declined for six years before passing away. When I was a senior in high school, my mom flew to Texas with my black dress in tow because she was convinced it was the end for Granddad. My cousin sang Amazing Grace and the grandkids all called in to say their final goodbyes. He lived for two more years. 

 

When I speak to my parents about the very real possibility that they’ve inherited a gene for Alzheimers or dementia, they are candid with me. My mom says, “I would hope that I would set something up. I can just tell you right now. If I am at the point where I don’t know where I am, and someone has to feed and bathe me, please give me some good medicine.”

 

But that’s not a possibility in the United States either. Those who seek physician-assisted suicide in the United States also have to be “capable,” which “is the ability to make and communicate health care decisions to health care providers.” For a patient who can’t remember their own spouse or children, this is an impossible task. 

 

Laws in the United States need to expand to include parameters that allow patients with memory impaired diseases to seek physician-assisted suicide. Patients should be able to state that they wish to receive a physician-assisted suicide when they recieve a diagnosis and are still “capable.” They will need a psychiatric evaluation that concludes that at the time of this statement they would not commit suicide if not for this diagnosis. A series of interviews should confirm their wishes for death with dignity. 

 

In this statement, a patient will indicate at what point they will receive end of life care. My mom outlined her criteria, but physicians should create a more substantial list of options increasing in severity. In this process, the patient will chose a trusted confidant who, in the case of the patient being completely incapable, has the right to make the final decision on whether to continue with the procedure. 

 

This is a horrible burden to place on another person, but the alternative of watching someone you love become something else entirely is worse. In the book, In Love: A Memoir of Loss and Love, Amy Bloom writes about the process of her husband, Brian Ameche, receiving a physician-assisted suicide in Switzerland through the company DIGNITAS. DIGNITAS is the only place where an American without a six month terminal prognosis can receive this kind of care. 

 

Still, there is an immense amount of preparation to be approved for the process. Bloom writes, "It seems to me that I'm doing the right thing in supporting Brian in his decision, but it would feel better and easier if he could make all the arrangements himself and I could just be a dutiful duckling, following in his wake. Of course, if he could make all the arrangements himself, he wouldn't have Alzheimer's."

 

Not everyone with Alzheimers or dementia can spend the estimated £6,500 to £15,000, not including travel fees, that DIGNITAS charges. The United States should not be outsourcing suicide to Switzerland. This shouldn’t be an option left to the extremely privileged. 

 

The American Medical Association outlines a code of ethics that they believe doctors should follow. One of the rules state, “A physician shall be dedicated to providing competent medical service with compassion and respect for human dignity.” Opponents to physician-assisted suicide believe that the practice is inconsistent to everything a physician is meant to stand for. But, also outlined in the code of ethics is that, “A physician shall respect the rights of patients.” It should be the right of a patient to decide when their life is no longer the way they wish to live it. 

 

Some may view physician-assisted suicide as a way to cheat death. A way to avoid the natural course of your life, but I believe it is an option to mercifully end the suffering of not just the patient, but of everyone they love. 

 

My dad often says that the love that one must feel for someone with Alzheimers or dementia is the most selfless form of love. When he describes the way his step-mother loved his father, he gets misty eyed and his throat closes up. He says simply, “You’re loving someone who cannot love you back.” Continuing, he said, “It’s an extraordinary form of love. And the sacrifice is amazing. A silent sacrifice.”

 

This silent sacrifice shouldn’t be the only option. Everyone should have the right to leave behind a life that they are proud of. I hope my parents will be offered this right. I hope I will never live to see a day where they forget me. I hope to never need to review the days I neurotically chronicle for anything other than looking back on the “good old days.”