An autistic 27-year-old Calgary woman, awaiting a court ruling on whether she can proceed with medical assistance in dying (MAiD) — a decision challenged by her father — said she wants to die.But that’s not her issue now. The situation with this woman identified only as MV due to a publication ban, is contradictory and confusing. That’s based on how she explained it.The medical system “abandoned” her, isn’t addressing her needs swiftly enough and offers “inappropriate” care, she said during a phone conversation from hospital where she has been since March 28.She said she simply wants palliative care and to be made comfortable yet blasted the medical system for not being at her beck and call. When she sees doctors, she declines help. They don’t meet her controlling criteria or timeframes.And there’s no “positive prognosis,” according to diagnoses she’s somewhat vague about. Yet she’s impatiently waiting for test results from specialists.“The list (of diagnoses) is so long that I can’t remember. There are people working on either ruling in or ruling out a number of things right now. I just haven’t heard back from all the specialists.”MV admitted to the Western Standard her health issues remain a mystery.“None of the testing that we have done and the issues we have found have been very like, clear cut health issues.”Yet, according to MV, there’s no hope.“We ruled out anything that has a positive prognosis. It’s not like we found a really specific disease where there is a really clear set of treatment guidelines where they can say ‘take this medication’ and this will manage your symptoms …”“There are lot of diagnoses that have been made for me where the only option is just supportive care and trying to keep me comfortable. There’s not really a cure or a way to improve me.”Again, cure her from what is unclear.She took issue with a cardiologist who challenged her claim two weeks ago that she’s done everything possible to “handle this arrythmia issue.” She claimed she was diagnosed with inappropriate sinus tachycardia (IST.)Her father claimed she’s generally healthy apart from autism and ADHD and physical symptoms she may have to justify MAiD stems from undiagnosed psychological conditions. MV didn’t file medical documentation with the court.She was displeased that a neurologist showed up Wednesday night. Why? He was “on call” and it took too long for anyone to get back to her with early April test results.She’s upset that she hasn’t seen a gastroenterologist since March, but said she is on three medications for nausea and suffers pain when she eats or drinks.She’s eating food brought from home. Apparently, dieticians can’t “navigate the hospital food system” to address her allergies to “eggs and dairy and corn.”It’s quickly evident that MV wants to control the narrative.“I think you might not be the right person to talk to about this,” she said, but wouldn’t say why.Her mother, at her side in the hospital, later clarified this.“I think where our thoughts got crossed where you were thinking about the MAiD and M is thinking about how she stuck in the medical system and can't even get basic symptom care.”MV was scheduled for MAiD on February 1. Her father intervened.“I don’t have access to the MAiD procedure because there is a stay in place until the Appeals Court can hear the appeal in October,” said MV.Mom said MV decided she wanted MAiD last summer “because nobody can find an answer to alleviate the symptoms that she has.”“There’s a variety of small things. She’s sitting next to me and glaring at me. I think she’d prefer that you don’t go into the specifics about those details,” said mom.“Mentally she is cognizant she’s able to act on her own like everybody else. She has the capacity to make her own decisions. She’s had that confirmed.”Dad argued in court his daughter doesn’t have the mental capacity to decide to end her life.MV told mom to get the list of ailments from her chart, but it wasn’t produced. Nor did mom respond when asked how many doctors her daughter has seen. What’s evident is that were many over the years.“I have really severe headaches and migraines that I’ve tried to manage for years. I lost count of the number of neurologists I’ve seen, the number of medications I’ve taken. I went through the chronic pain headache program,” said MV.“I have been sick for a very long time. Multiple body systems, all different kinds of symptoms, things that really interfere,” said MV.She said her illness “that hadn’t been addressed by my doctors at that point” impeded her ability to study in junior high and high school, get a job or go to university.“As the years went on, I lost the ability to participate in music in the community. I was in two choirs, and I volunteered for one of the choirs.”Her second passion was studying diseases and medicine.“I was really interested in medicine since the age of 12. I would watch medical TV shows, but I’d also look up these diseases. That’s what I did when I would come home from school. I would work on my homework and watch these shows and go onto a website. I would read about these diseases and learn the terminology just ‘cause I thought it was interesting.”“When I had to start looking at my own symptoms and was talking to doctors about what the issues could potentially be with me and what the solutions could be, I feel like we ruled out everything that is very manageable.”She saw a neurologist after Easter. Tests were done. She was told she’d be seen in early April but still hasn’t heard from that doctor.On Wednesday, MV “withdrew” from further consults and assessment.Another neurologist visited her that evening. She found this problematic.She demanded a nurse be present to “chaperone” while the male doctor spoke with her. She didn’t like him saying she needed to do a full assessment and more testing because “there are still so many other things that haven't been done.”“I don't want anybody coming in here telling me like, ‘Oh no, wait, like you cancelled your assessment and now we're going to take you seriously,” she said.MV was galled that the doctor was on call sent from a different hospital because “they forgot about me, and they are upset that I withdrew the referral and would just like palliative care.”She has resisted efforts by cardiologists.“I started the testing last summer and got the results. I was told that the next time I could have an appointment was in November. I read the results and decided that I didn’t need to have a meeting with that doctor.”She met with him two weeks ago.“I said ‘I’m sorry that this appointment was booked. I don’t think it’ll be very helpful because to my understanding I have tried everything to handle this arrythmia issue.’’She claimed meds and “lifestyle things” she tried were futile.The cardiologist and neurologist are only two doctors she mentioned. Certainly, there are others. These doctors are busy, with patients on waiting lists anxious to see them —without giving them attitude.MV insisted the crux of the problem is patients requiring medical care having to apply for MAiD to be seen by a doctor.“If you want to see a doctor is that how you have to do it? A MAiD application? I was approved for MAiD, and I still didn’t get to see anyone.”She volunteered that she’d never resort to the kind of “petty and inappropriate” behaviour she has “seen that over the years” where people lied about wanting to die and sought “media attention.”“I'm frustrated. I have gone through a very difficult and emotional decision to accept that care is not coming and that I have been abandoned by system.”That’s debatable. Her interpretation.What isn’t debatable is she is suffering from something, and her parents are fiercely fighting for her.Mom is devoted. Dad fights to stop authorities — including Alberta Health Service — from ending her life after a Calgary judge overturned an injunction granted the day before she was scheduled to die.MV, totally absorbed in her suffering, seems oblivious to the hell her parents, fearing they’ll lose her to medical suicide, are going through.
An autistic 27-year-old Calgary woman, awaiting a court ruling on whether she can proceed with medical assistance in dying (MAiD) — a decision challenged by her father — said she wants to die.But that’s not her issue now. The situation with this woman identified only as MV due to a publication ban, is contradictory and confusing. That’s based on how she explained it.The medical system “abandoned” her, isn’t addressing her needs swiftly enough and offers “inappropriate” care, she said during a phone conversation from hospital where she has been since March 28.She said she simply wants palliative care and to be made comfortable yet blasted the medical system for not being at her beck and call. When she sees doctors, she declines help. They don’t meet her controlling criteria or timeframes.And there’s no “positive prognosis,” according to diagnoses she’s somewhat vague about. Yet she’s impatiently waiting for test results from specialists.“The list (of diagnoses) is so long that I can’t remember. There are people working on either ruling in or ruling out a number of things right now. I just haven’t heard back from all the specialists.”MV admitted to the Western Standard her health issues remain a mystery.“None of the testing that we have done and the issues we have found have been very like, clear cut health issues.”Yet, according to MV, there’s no hope.“We ruled out anything that has a positive prognosis. It’s not like we found a really specific disease where there is a really clear set of treatment guidelines where they can say ‘take this medication’ and this will manage your symptoms …”“There are lot of diagnoses that have been made for me where the only option is just supportive care and trying to keep me comfortable. There’s not really a cure or a way to improve me.”Again, cure her from what is unclear.She took issue with a cardiologist who challenged her claim two weeks ago that she’s done everything possible to “handle this arrythmia issue.” She claimed she was diagnosed with inappropriate sinus tachycardia (IST.)Her father claimed she’s generally healthy apart from autism and ADHD and physical symptoms she may have to justify MAiD stems from undiagnosed psychological conditions. MV didn’t file medical documentation with the court.She was displeased that a neurologist showed up Wednesday night. Why? He was “on call” and it took too long for anyone to get back to her with early April test results.She’s upset that she hasn’t seen a gastroenterologist since March, but said she is on three medications for nausea and suffers pain when she eats or drinks.She’s eating food brought from home. Apparently, dieticians can’t “navigate the hospital food system” to address her allergies to “eggs and dairy and corn.”It’s quickly evident that MV wants to control the narrative.“I think you might not be the right person to talk to about this,” she said, but wouldn’t say why.Her mother, at her side in the hospital, later clarified this.“I think where our thoughts got crossed where you were thinking about the MAiD and M is thinking about how she stuck in the medical system and can't even get basic symptom care.”MV was scheduled for MAiD on February 1. Her father intervened.“I don’t have access to the MAiD procedure because there is a stay in place until the Appeals Court can hear the appeal in October,” said MV.Mom said MV decided she wanted MAiD last summer “because nobody can find an answer to alleviate the symptoms that she has.”“There’s a variety of small things. She’s sitting next to me and glaring at me. I think she’d prefer that you don’t go into the specifics about those details,” said mom.“Mentally she is cognizant she’s able to act on her own like everybody else. She has the capacity to make her own decisions. She’s had that confirmed.”Dad argued in court his daughter doesn’t have the mental capacity to decide to end her life.MV told mom to get the list of ailments from her chart, but it wasn’t produced. Nor did mom respond when asked how many doctors her daughter has seen. What’s evident is that were many over the years.“I have really severe headaches and migraines that I’ve tried to manage for years. I lost count of the number of neurologists I’ve seen, the number of medications I’ve taken. I went through the chronic pain headache program,” said MV.“I have been sick for a very long time. Multiple body systems, all different kinds of symptoms, things that really interfere,” said MV.She said her illness “that hadn’t been addressed by my doctors at that point” impeded her ability to study in junior high and high school, get a job or go to university.“As the years went on, I lost the ability to participate in music in the community. I was in two choirs, and I volunteered for one of the choirs.”Her second passion was studying diseases and medicine.“I was really interested in medicine since the age of 12. I would watch medical TV shows, but I’d also look up these diseases. That’s what I did when I would come home from school. I would work on my homework and watch these shows and go onto a website. I would read about these diseases and learn the terminology just ‘cause I thought it was interesting.”“When I had to start looking at my own symptoms and was talking to doctors about what the issues could potentially be with me and what the solutions could be, I feel like we ruled out everything that is very manageable.”She saw a neurologist after Easter. Tests were done. She was told she’d be seen in early April but still hasn’t heard from that doctor.On Wednesday, MV “withdrew” from further consults and assessment.Another neurologist visited her that evening. She found this problematic.She demanded a nurse be present to “chaperone” while the male doctor spoke with her. She didn’t like him saying she needed to do a full assessment and more testing because “there are still so many other things that haven't been done.”“I don't want anybody coming in here telling me like, ‘Oh no, wait, like you cancelled your assessment and now we're going to take you seriously,” she said.MV was galled that the doctor was on call sent from a different hospital because “they forgot about me, and they are upset that I withdrew the referral and would just like palliative care.”She has resisted efforts by cardiologists.“I started the testing last summer and got the results. I was told that the next time I could have an appointment was in November. I read the results and decided that I didn’t need to have a meeting with that doctor.”She met with him two weeks ago.“I said ‘I’m sorry that this appointment was booked. I don’t think it’ll be very helpful because to my understanding I have tried everything to handle this arrythmia issue.’’She claimed meds and “lifestyle things” she tried were futile.The cardiologist and neurologist are only two doctors she mentioned. Certainly, there are others. These doctors are busy, with patients on waiting lists anxious to see them —without giving them attitude.MV insisted the crux of the problem is patients requiring medical care having to apply for MAiD to be seen by a doctor.“If you want to see a doctor is that how you have to do it? A MAiD application? I was approved for MAiD, and I still didn’t get to see anyone.”She volunteered that she’d never resort to the kind of “petty and inappropriate” behaviour she has “seen that over the years” where people lied about wanting to die and sought “media attention.”“I'm frustrated. I have gone through a very difficult and emotional decision to accept that care is not coming and that I have been abandoned by system.”That’s debatable. Her interpretation.What isn’t debatable is she is suffering from something, and her parents are fiercely fighting for her.Mom is devoted. Dad fights to stop authorities — including Alberta Health Service — from ending her life after a Calgary judge overturned an injunction granted the day before she was scheduled to die.MV, totally absorbed in her suffering, seems oblivious to the hell her parents, fearing they’ll lose her to medical suicide, are going through.
