VANCOUVER (NEWS 1130) — After 25 years of living with pain, fatigue and a complex disability, a Vancouver woman says she’s run her debt as far as it will go. She says she’s facing a painful deterioration or even an untimely death, so she’s seeking medically assisted dying.
Madeline — a pseudonym for the protection of her privacy — says she doesn’t want to die but her monthly income, even with temporary COVID-19-era increases, is not enough to keep her in a pain threshold that’s bearable.
When her credit runs out she will have to stop taking supplements, receiving physiotherapy and intravenous naturopathic treatments she says are finally helping her find balance.
“What’s coming is not a quality of life that’s endurable.The pain itself is likely just to give me a heart attack, and the concern is that it wouldn’t kill me, it would just debilitate me even further.”
She says she’s already isolated and alone because of her condition and isn’t willing to lose what little connection her current treatment plan allows her to have.
The most painful thing for Madeline is that her conditions, which involve chemical sensitivity, chronic fatigue, and constant pain, and have worsened over the last year, are treatable but with no options to pay for those treatments, they may as well not exist.
She says the health coverage offered by the Ministry of Social Development and Poverty Reduction (under which disability benefits are managed in conjunction with the Ministry of Health,) including physiotherapy, naturopaths, dental, medical equipment and non-deductible PharmaCare, is not close to enough.
“I know people think a lot of the (persons with disabilities) PWD supports are covered, they’re not,” she explains, saying recipients of the benefits are limited to 10 visits each year and those visits are split between multiple practitioners.
“They’re either not covered at all, or covered so minimally,” she says, adding coverage maxes out far below what many professional bodies suggest as a minimum charge for a single session.
The Ministry of Social Development and Poverty Reduction says in a statement “It is deeply upsetting to hear that this person is so distressed that they feel assisted dying is their only option,” and has offered to speak with Madeline directly.
“No one should feel like they have to make a choice to live or die based on their finances,” the ministry adds.
“While we are working hard to support people with disabilities, we know that so much more needs to be done to ensure that people’s basic needs are met and they are able to live with dignity and comfort.”
‘I don’t know how you’re coping with this amount of pain’
Madeline says she’s not alone in facing the decision, each month, to either accrue more debt or go into rapid deterioration and escalating pain.
“I’ve had a taste of it already,” she says, describing what happened when she pulled back on one treatment for just 48 hours, last fall, and couldn’t even urinate without spending an hour working up the courage to face the pain of standing up, pain that eventually landed her in the emergency room.
She says the doctor on duty had never encountered her condition as it isn’t usually one that requires emergency care.
“So he went off and researched it and he came back and he said the nicest thing any doctor’s ever said to me: He stood there and he said, ‘I don’t know how you’re managing. I don’t know how you’re coping with this amount of pain.’”
She experienced frightening heart irregularities and worries another spate of pain could trigger a heart attack or leave her further disabled.
“I won’t be a person rotting away in a care home, conscious and in brutal pain and fatigue and isolated. That’s what I’m looking at. And everyone goes on and on about the care homes and it’s like, I already knew that; when you’re poor, the care homes you end up in, they’re not well funded,” she says.
“My quality of life right now is terrible and the worst thing is it never had to be,” she says, describing a naturopathic treatment she pursued for a short time about 17 years ago and how a recently adjusted dose has been helping her find more energy and better pain management.
“I had to stop because the debt I was hemorrhaging into it was just too fast,” she says.
Over the last year, Madeline’s condition has worsened and COVID-19 stresses, costs and logistics have only made things worse.
She’s currently managing a mix of supplements and naturopathic treatments; all discounted out of compassion. However, she says she’s only doing about half of the recommended therapies in a bid to stretch her ability to maintain a quality of life as long as possible.
The province says it is looking at all options moving forward, including rate increases, but with the application for Medical Assistance in Dying (MAiD) already underway, Madeline desperately hopes lifting people with disabilities above the poverty line will happen while she’s alive to benefit from it.
“I can’t live with the kind of pain and fatigue that’s coming when I have to stop all of the treatments that I found. That’s not that’s not a quality of life. That’s not anything,” she says.
She hopes people with disabilities who can’t work will be given a basic income that brings them above the poverty line and more meaningful coverage that allows them a holistic approach to managing chronic conditions.
COVID-19 assistance a ‘drop of water in a dry sponge’
COVID-19 has magnified and hastened Madeline’s decision to seek MAiD as increasing financial pressures rapidly shrink the window of debt she has been relying on to survive.
She says it’s been particularly heartbreaking to watch working Canadians supported with Canada Emergency Response Benefit and Canada Emergency Wage Subsidy payments that far exceed the maximum single person disability coverage of $1,183.42 in British Columbia, adding it sends the message that working Canadians are somehow worth more than those who physically can’t.
“If no one else can survive on less than $2,000 a month, why are PWD” she asks, pointing out even with emergency disability supplements, PWD get less than that.
As for COVID-19 increases, she says, “Please don’t think I’m not grateful. I’m grateful but it’s like adding a drop of water to a dry sponge and acting like, well, why isn’t it wet? Because it’s a dry sponge and it’s just a dropper.”
Both the federal and provincial governments have boosted disability income with temporary injections but they will do little to help the most poor and most disabled, say critics.
COVID-19 costs disproportionately impact people like Madeline, forced to bulk purchase important medical supplies in case of supply-chain disruptions and to avoid being exposed to the coronavirus.
“For us who have an immune deficiency, you have to have masks no matter how much they cost, you have to have eye protection no matter how much it costs. But then there’s other odd things,” she says.
Toilet paper was hard for everyone but for Madeline it was an impossibility for months. Complex chemical sensitivities mean she only knows of one brand of toilet paper that doesn’t cause her extreme discomfort: it disappeared from shelves early in the pandemic, reappearing at double the price when it came back into stock.
Madeline and others point out there’s a frustrating barrier to a proposed one-time payment of $600, recently introduced by the House of Commons to help PWD through the pandemic.
Madeline is trying to apply for the tax credit now but says she and many of the poorest, non-working PWD in Canada will not have and won’t currently qualify.
It’s not easy, she says, using energy she should be conserving to eat, bath and maintain some connection with the outside world, to apply for previously useless-to-her tax credits.
“It just costs you money because it requires a doctor’s note. So you’d have to spend $35, $40 to get a doctor’s note. And it doesn’t actually get you any money,” she says.
The province of B.C. is providing temporary, monthly $300 COVID-19 crisis supplements to everyone receiving income or disability assistance, and has exempted all federal employment insurance earnings, including CERB.
“These benefits have been extended to be included in the cheques issued in July and August,” says the Ministry of Social Development and Poverty Reduction statement given to NEWS 1130.
“It’s the equivalent of if you gave a starving person a slice of bread and you’re like, ‘You’re not going to starve today.’ But a slice of bread a day will cause your body to eat itself, to devour the muscles and the measure of pain and deterioration, it’s brutal. That’s the equivalent of what PWD are dealing with,” Madeline says.
She says she finds it hard to understand why the government, society and bureaucrats approach disability health care the way they do, because it always costs the system more to let people’s health decline.
Madeline believes people with disabilities should be fully administered and assisted through the Ministry of Health and their health supports and coverage shouldn’t be tied to the Ministry of Social Development and Poverty Reduction.
“I don’t understand why we’re under the Ministry of Poverty Reduction. I think that’s not helping matters at all. If we were under the Ministry of Health, they’d be looking at the long term costs.”
‘MAiD is a foregone conclusion’ if Madeline doesn’t get financial help
Disability rights groups have fought long and hard to ensure people with disabilities aren’t lured, forced, coerced or otherwise driven into medically assisted dying in a discriminatory way.
The Council of Canadians with Disabilities says no one should be seeking MAiD because of financial stresses. However, it’s something the group has been warning is happening since at least 2018.
In January, 2020, the Canadian Disability Policy Alliance, along with three federal ministers – Carla Qualtrough (Employment, Workforce Development and Disability Inclusion), Patty Hajdu (Health), and David Lametti (Justice / Attorney General) formed a panel discussion and recognized the special status of PWD and MAiD.
“Impassioned testimony reinforced the need to balance the rights of disabled people to the same choices as other Canadians, while at the same time challenging assumptions about reasons for MAID in the absence of proximal death,” says a summary of their report.
Madeline says she isn’t depressed or distressed. She says she’s thought long and hard about what’s ahead and feels she should be given the opportunity to have control over her death, and that she meets the requirement for reasonably foreseeable, natural, death.
“MAiD is a foregone conclusion if my financial situation can’t change. I will have to do that. I know exactly what’s coming for me and I know exactly how to manage it but I need money for that,” she says.
So she’s hoping that changes, increases in coverage and income will come in time to give her a shot at making it to Christmas.
“When I reach the end of my debt window, which will be this fall, that’s it for me, because it’s going to come fast,” she says.
“There will just be a wall of brutal pain.”