To Die With Dignity : To Die With Dignity by Michelle Kaptein Nonfiction Writing Contest contest entry |
“Can you tell me why you’re here?” The physician asked my mother. “For an assisted suicide,” she answered in a clear voice. “Are you here of your own volition or have you been coerced in any way?” “No, I haven’t been coerced.” “Do you understand that you will have to drink a glass of sodium pentobarbital which will cause your heart to stop, bringing about death?” She nodded. “Yes.” “And are you sure you want the procedure?” “Yes.” __________________________________________________________________________ This factual account of how I procured a physician assisted suicide (PAS) for my ailing mother, which took place over the ten months from March 2022 through January 2023, will forever change the way you view life, death, and the bridge between them. __________________________________________________________________________ I grabbed my cell on the second ring. “Hi, Mom. How are you today?” “Terrible. I tried to kill myself.” “What?” I gripped the phone. “What happened?” She gave a heavy sigh. “Nothing. I woke up this morning at the usual time when the aid came to do my eye drops.” I sunk down on the couch. “I mean what happened to make you…do that?” My ninety-year-old mother had been suffering, mentally and physically, since her frontal lobe stroke two years before. And her second one about a year later. The medical term is cerebral vascular accident (CVA), an interruption in blood flow to the brain. It’s often caused by a blood clot and can result in trouble speaking and understanding, confusion, paralysis or numbness, memory and vision loss. Her main symptoms were loss of mobility, vision, and hearing. She also had anxiety and trouble sleeping. She sighed again and answered my question. “My life is intolerable. I can’t see and I can’t hear, so I can’t even read or watch TV.” “But you dialed the phone and you’re talking to me now, right?” I said, my tone gentle. My relief that she was exaggerating her ailments only lasted a moment until I realized she believed what she was saying. To the point where she’d tried to take her own life. “It’s no use,” she said in a heavy voice. “I told you the aids keep the medication cabinet locked because they don’t trust me. For the last couple weeks, I pretended to take my sleeping pills and hid them in the pocket of my robe. It wasn’t easy—they watch me like hawks. Last night I took the pills all at once.” She sniffed. “But I guess I didn’t have enough.” “They have to lock the medications up and watch people take them. It’s assisted living. It’s the law,” I kept my voice even, as if we weren’t talking about her attempted suicide. “Look, don’t tell them. If they find out what I did, they’ll probably throw me in a nursing home.” My mother had been a university Mathematics professor. Logic, rather than emotion, had always driven her, to a degree suggestive of mild autism. I attempted to appeal to her with reason. “That doesn’t make sense, Mom. This is a private facility, and they can’t just commit you to a nursing home without your permission.” “The aids hate me. They don’t know how to put in my new hearing aids. They make me use a walker even though I keep telling them I don’t need it.” “Mom—" “What should I do?“ she asked, her tone plaintive, demanding and tinged with hopelessness. “I’ll call the manager again about the hearing aids. We’ll get it figured out. Do you need anything? Would you like me to send you a different magnifier light? Meanwhile, why don’t you go to an activity.” “How? I can’t see or hear. It’s no use. You can’t help me. Goodbye.” Her words stung. There must be something more I could do. I put down the phone and stared at it, thinking about how much my mother had lost in such a short time. She’d always looked and felt younger than her years, gardening for hours, going on long walks and hosting her volunteer groups in her townhome nestled against lush woods. But when I’d last seen her, I’d hidden my shock at her hunched frame, shaking hands, and eyes that seemed to focus inward as if unable to see past her personal problems. Before her strokes, she’d lived in the New Jersey town where I grew up. My daughter, Kirsten, and I lived in Upstate New York, and we saw her every couple of months. But recently, I’d accepted work in California. When she could no longer live alone, I put her house on the market, sold or donated most of her belongings, and relocated her to an independent living facility she had selected before reporting to my new job. I’d helped her move into a small apartment with a nice view and a second bedroom where Kirsten and I could stay when we visited, but the distance was hard on all of us. She’d never lived in an apartment and most regretted losing her yard and garden. Although independent living allowed personal vehicles, she could no longer drive. She became reliant on the facility’s shuttle buses, which only traveled short distances and seemed to have minds of their own regarding a schedule. It was too difficult to continue her volunteer work or to visit people outside the facility. Or so she said. In truth she stopped returning phone calls from concerned friends. When I pressed her, she admitted she didn’t want them to witness her condition. The facility also had a separate assisted living (AL) building and a nursing home on the grounds. Only nine months later, she was forced to give up her cozy apartment and move to AL. The damage from the strokes, coupled with confusing and isolating COVID restrictions, had made it impossible for her to navigate the new independent living situation. I used my vacation days and traveled back east, cleaned out the apartment and donated everything that wouldn’t fit into the single bedroom and bathroom. On the flight back to California, I’d contemplated how this vibrant woman’s home and possessions shrinking from a house to an apartment to a single room was an apt metaphor for the shrinking of her life. From a well-liked professor and contributor to the community, to the steep physical decline and isolation that caused her to lose her independence, and with it, her dignity. My mind returned to the present and I phoned Kirsten. She’d turned twenty-six that year and had moved out of my house to her own apartment. “Hey Mom, what’s up?” “Grandma tried to kill herself.” “Oh God, what? Should I go visit her?” I breathed a sigh of relief. “That would be great.” Kirsten and her grandmother were close, and I hoped the visit would lift my mother’s spirits. And my daughter could assess the extent of her grandmother’s decline. The following month, Kirsten returned from a week in New Jersey. We sat at my kitchen table drinking tea. She took a sip and put down her cup. “Grandma’s really unhappy. I took her clothes shopping and got her book CDs, but she cried a lot.” “Really?” I’d never seen my mother cry. Not even when she was devastated by my father’s death many years before. The mental image of her sitting on the room’s single chair, hunched with despair and staring at nothing, made my stomach clench and my eyes burn. “Did she talk about wanting to end things?” “Yeah. The whole time. I asked if she was sure, and she kept saying that’s all she wanted—for it to be over. The worst part is she feels helpless.” Kirsten cast her gaze to the table. “It’s only gonna get worse.” “I know, but what can we do?” I put my teacup down and clasped my hands. “Maybe I could send her enough pills…I mean if we’re positive it’s what she wants. But no guarantee it would work. Or I could bring her here…” Kirsten shook her head. “Don’t do that. You could get arrested.” “She’s miserable. If I do nothing, she’ll end up in a nursing home confined to a bed with zero quality of life.” I wasn’t always the best daughter; rebellious as a teenager and overwhelmed as an adult in a bad marriage. If I could help my mom escape her anguish, shouldn’t I try? Kirsten drained her teacup and looked up. “What about assisted suicide? Remember that romantic movie I love, ‘Me Before You’? The one where the British guy is paralyzed from a motorbike accident, and he goes to Switzerland? There’s a scene where the guy’s father tries to convince his wife that their son should be allowed to end his life on his own terms. They’ve got a letter with the organization name, Dignitas.” I raised my eyebrows. “How many times have you seen that movie?” She shrugged. “Too many.” ______________________________________________________________________________ I put my browser in incognito mode and searched for physician assisted suicide, PAS. Many countries offer that option, including the United States—in the more liberal states, such as New Jersey. But only if you have a terminal diagnosis with less than ninety days to live. As if that was an exact science. Although my mother’s body was failing, age-related misery didn’t qualify as a terminal illness. Of the countries that did not require a terminal diagnosis, eligibility only applied to their citizens. Except for Switzerland. The two main nonprofit organizations who act as intermediaries with the Swiss government were Exit and Dignitas. Supported by independent Swiss physicians, they provided accompaniment for PAS to members with terminal or severe physical illnesses. They also performed advisory work on palliative care, health care advance directives, suicide attempt prevention, and legislation for right-to-die laws around the world. Members with sound judgment who wished to commit suicide submitted a formal request including a letter explaining their wish to die, and medical reports showing diagnosis and attempted treatment. PAS law mandated that assisted suicide be done without coercion or self-interest on the part of anyone assisting with the process. Patients certified that they were making the decision to die of their own free will. Suicide would then be accomplished humanely through voluntary ingestion of a powerful overdose of Sodium Pentobarbital (NaP), a fast-acting painless barbiturate, which first numbs pain, then induces a coma, and finally results in respiratory arrest and death. Although it’s not necessary to use an intermediary organization, I doubted my ability to deal directly with the Swiss government and chose the one from the movie, Dignitas. Founded near Zurich, Switzerland in 1998, its maxim is: "To live with dignity—to die with dignity." They believe that only an individual, not physicians or attorneys, can judge whether one’s life situation is intolerable. I also learned that about one-third of those approved for PAS do not follow through. For some, it’s enough to know they have the medication—the control—to end their lives when they want. After work the next day, I phoned my mother. “How are you doing?” “Terrible.” “What’s wrong?” “Oh, come on. You know. Everything. The aids want to get rid of me. They’re trying to make my life miserable so I’ll leave.” I pictured her stuck in her room, heart wrenchingly bored and lonely. “Why would they do that? It’s their job to take care of the residents. That’s how the facility makes money. And besides, aids don’t have any authority.” “Well, that’s what’s happening.” “How are you feeling otherwise? You’re not in any pain, are you?” “No, but I’m miserable. I can’t take it any longer. My vision is getting worse every day. I can’t hear at all. I can’t get around. I wish I could just kill myself.” I wanted to mention that she could obviously hear since she was speaking to me, but I felt awful for her; it wasn’t the time for logic. I took a deep breath. “Do you really want to end your life?” “Definitely. But I failed, and now I’ll never get another chance.” The sadness and frustration in her voice tore at my heart. “Mom, do you want my help?” “Yes, but you can’t help me. Nobody can.” I took a deep inhale. “How would you feel about going to Switzerland for an assisted suicide?” “How is that possible? I can’t travel.” “Kirsten and I would take you. If that’s what you truly want,” I said in a hesitant voice. “They’d never accept me. I think you have to be terminal.” “Not always. We could at least look into it, see if it’s an option. Do you want me to try? Because if it’s not what you want, I’ll drop it.” “Yes, it’s what I want,” she said, her voice sounding stronger than it had in a while. The next day, March 2, 2022, I registered my mother as a Dignitas member. I sent a fee of 200 Swiss francs (CHF) and annual membership fee of 80 CHF, about $315 total. I longed to turn to friends for emotional support and advice but resisted. You may think you know someone until a potentially polarizing issue comes up; better to keep it to myself. An agonizing few weeks later, Dignitas emailed their informational brochure, and a Patient Instructions / Advance Directive form. A case worker, Diana, was assigned. Since Switzerland is nine hours ahead of California, email would be the preferred communication method for the months ahead. Dignitas’ brochure listed a step-by-step procedure for obtaining a “provisional green light”, the indication that Dignitas was ready to send completed documentation to the Swiss government. Following the initial membership payment, we would submit documents for evaluation. If approved to continue, Dignitas would make a submission to the Swiss government on our behalf. The organization boasted a perfect record of documentation acceptance by the government once a provisional green light was given. Upon acceptance, we would travel to Switzerland to meet with an assigned physician who would grant final authorization, “definitive green light”, and prescribe the NaP medication. Our stay needed to be at least one week in order to meet with the physician twice, with two days in between, and accompaniment by a Dignitas representative the following day. The entire process should take three to four months, and the expected cost was listed at $7,000 to $16,000, the range due in part to method of funeral and/or cremation choice. For some, the cost may seem high but would likely be far less than end of life care. For example, my father-in-law’s nursing home had kept him alive in the advanced stages of Alzheimer’s. Prolonging his existence, even after he was no longer conscious, had resulted in a huge emotional and financial toll on his family. The prerequisites for a Dignitas accompanied PAS were that the patient be: a member, of sound judgement, and able to self-administer the lethal medication. Additionally, the patient must have: a terminal illness, and/or an unendurable incapacitating disability, and/or unbearable and uncontrollable pain. Before beginning the submittal process, I contacted Dignitas to confirm that my mother would be a candidate. Her situation, a ninety-year-old suffering from multiple physical failings resulting in isolation and inability to care for herself, was only getting worse and would certainly result in either natural death or confinement to a nursing home bed. I believed she fell in the “unendurable incapacitating disability” category, and they agreed. But could I really take my mother to another country in order to end her life? ____________________________________________________________________________ To begin the evaluation process, Dignitas requested: 1) a letter requesting Dignitas to prepare an accompanied suicide, giving reasons why, and explaining her medical condition with a personal view on her sufferings. 2) A separate ‘life report’ describing her past and current situation and explaining if family members support her intention and would accompany her to Switzerland. 3) One recent and two to three older ‘medical certificates’, which contain the diagnosis(s), describe her state of health and its development, treatments tried, medication, etc. At least one of the certificates could not be older than three months. I was not aware of it at the time, but these documents represented only the initial evaluation. The brochure contained no hint of additional submittals, each capable of derailing the entire process. Despite my mother’s exaggeration of the extent of her eyesight and hearing loss, both were steadily declining. She wasn’t able to see well enough to prepare the letter and life report, and I verified with Dignitas that it was acceptable for me to assist if she unilaterally provided her signature. From two years of phone calls and visits I knew her anguish well. The personal letter detailed the many ways her life had become intolerable. I read the letters to her over the phone and made her minor adjustments. I mailed them to her, and she signed and sent them back, all the while expressing doubts that our efforts would be successful. I spent the next several months obtaining medical records from specialists, starting with her initial hospital stay following the first stroke. I dealt with the HIPAA process, long hold times, and unreturned phone calls. I printed and compiled a large binder of medical reports showing a record of her ailments and decline. The reports included an extensive list of her medications. One of the older reports noted a medication for anxiety and Sertraline, prescribed when my mother had once stated she felt depressed. Near the end of July, I had assembled all of the documents and forwarded them to Dignitas for review. During this time, I learned that my mother had discarded her passport, believing she would never travel again. A visit to the DMV was necessary, but she no longer drove nor felt competent to ride share. Neither Kirsten nor I could take off from work and travel across the country at that time, so I engaged a local friend to help obtain a new passport. This presented a problem.
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Michelle Kaptein
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