Medical Assistance in Dying (MAiD): A Last Resort for Rare Disease Patients Facing Unbearable Suffering

 Living with a rare disease often means facing daily battles that many can’t imagine. While advances in medical technology and healthcare offer hope to some, for many rare disease patients, the Canadian healthcare system fails to provide the care, support, and treatments they desperately need. Increasingly, Medical Assistance in Dying (MAiD) is becoming a tragic solution for those whose suffering is too much to bear.

Rare Diseases: A Life of Pain and Uncertainty

Rare diseases are often misunderstood, misdiagnosed, or completely ignored by healthcare professionals. Patients face significant barriers to accessing proper treatment, timely diagnosis, and informed care. In Canada, where access to rare disease clinics and specialists is scarce, many patients spend years — or even decades — waiting for answers. The isolation, constant pain, and worsening symptoms lead to a diminished quality of life, and in many cases, despair.

Compounding these issues is the "financial burden" that accompanies rare disease care. Many patients are unable to work due to their debilitating conditions, and disability benefits are often insufficient to cover their basic living costs, let alone the specialized treatments they require. With inadequate support from provincial healthcare systems and long wait times for care, many rare disease patients are left feeling hopeless, facing a future where their health continues to decline with no relief in sight.

The Expansion of MAiD and Its Role in the Rare Disease Community

Originally introduced as a compassionate option for terminally ill patients experiencing unbearable suffering, **MAiD** has been expanded in Canada to include individuals with **grievous and irremediable medical conditions**, even if they are not terminal. This expansion has had a profound impact on the rare disease community, where many patients are grappling with chronic and painful conditions for which there are few — if any — treatment options.

For some rare disease patients, MAiD has become the only escape from a life of unrelenting pain and suffering. Faced with a healthcare system that can’t or won’t provide the care they need, and unable to afford treatments or find relief through other means, patients are turning to MAiD as a way out. 

When Quality of Life Becomes Unbearable

One of the most disturbing aspects of MAiD’s role in the rare disease community is that many patients opting for assisted death might have chosen to live had they been given proper care and support. However, without access to rare disease specialists, effective treatments, or even basic healthcare services, these individuals feel abandoned by the system. The emotional and physical toll of living with a rare disease, compounded by a lack of resources, has left many patients feeling that death is the only option to end their suffering.

MAiD, in this context, is not simply a compassionate choice for those facing the end of life due to terminal illness. Instead, it has become a last resort for patients who have been let down by a broken healthcare system. Rather than addressing the root causes of their suffering — lack of access to care, inadequate support, and financial hardship — patients are being given the option to die rather than to live with dignity.

The Need for Advocacy and Change

It is essential that we, as a society, recognize the dire situation facing rare disease patients in Canada. The expansion of MAiD as an option for those with chronic conditions reflects a failure to provide the necessary care and support that could improve the lives of these individuals. Instead of offering MAiD as the only solution, we must push for:

• Increased funding for rare disease research: More investment is needed to understand these conditions and develop effective treatments.
• Improved access to specialists and care centers: Patients need to be able to access rare disease clinics and informed healthcare providers who understand their conditions.
• Better financial support for disability and healthcare needs: No one should be forced into MAiD due to poverty or the inability to afford life-saving treatments.
• A stronger support network for patients and caregivers: Mental health and social support services must be expanded to help those struggling with the emotional toll of living with a rare disease.

Compassion Requires Action

MAiD should never be the default option for patients who could live fulfilling lives if only they had access to proper care and treatment. The Canadian healthcare system needs to address the gaps that leave rare disease patients suffering and consider the broader implications of offering MAiD to those whose lives could be improved with the right interventions.

As a society, we must demand more from our healthcare system, our government, and our support structures. Rare disease patients deserve to live with dignity, and it is time we focus on providing them with the care they need — not just offering them a way out.

Canada's Disability Inclusion Action Plan - and its promised effect on the lives of Canadians with Disabilities.

"In the fall of 2020, the Government of Canada announced it would create a Disability Inclusion Action Plan. In Budget 2021, the Government committed $11.9 million over 3 years to undertake consultations to reform eligibility processes for disability programs and services."

We're nearing the end of 2023, and we're still waiting for this outcome to be realized.

In July 2023, Federal MP Carla Dawn Qualtrough was appointed Minister of Disability Inclusion, and as a person born with disabilities, one would assume she'd have a good understanding of the challenges we face, but as a successful lawyer and passionate advocate of sport, does she really understand the challenges faced by persons with disabilities who live in poverty. If she had, many think she would have pushed harder for the Canada Disability Benefit (CDB), which is supposed to be part of the Disability Inclusion Action Plan. However, at this point, we still don't even know if this income, once approved, would be clawed back by the Provinces as income for those who receive disability income support from their Provincial Disability Income Programs. 

As Canada faces a growing housing crisis with no solid solutions, those with disabilities are often first in line to be left homeless. 

In Ontario, where 38% of its population is homeless, a high majority of those counted are people who live and rely on Provincial disability support income. If these funds are clawed back, this will leave many without enough money to afford both a home and food at the same time, let alone the other services and supports they require to live a life as productive or involved members of society.

With the average one bedroom, Ontario apartment rental going for approx. $2200 per month this leaves Ontario Disability Income Support (ODSP) recipients with few housing options because their average monthly income is only $1300. 

In addition to basic living costs, many of the programs and services we rely on, such as the Assistive Devices Program (ADP), offer mobility devices that come with either an extra cost or fewer of the specific needs we require in our mobility and daily living aids. Many of the products we need need to be covered, aren't covered, leaving us to carry these costs as well. 

Other programs and healthcare services, such as physiotherapy, dental care, vision care, and even prescription drugs, also come with additional costs. Since most Provincial programs only cover a small percentage of these products and services, while many of the most proven and successful health recovery modalities and even medications aren't covered at all, leaving most people with disabilities without the devices, treatments, care and support that would make it possible for them to live healthy, stable, and productive lives. 

Stress and worry are a normal part of living for everyone today, but for people with disabilities in Canada, what we carry significantly impacts our quality of life and our longevity. 

The Federal Medically Assistance in Dying (MAiD) program was built to provide Dying with Dignity for those with terminal illnesses, it's been expanded to cover "grievous and irremediable medical conditions" giving people with disabilities the option to use this program if their quality of life becomes less than they can handle. This means that people with disabilities across Canada who've been forced onto the streets because of the homelessness issue are making use of this program in increasing numbers, while some are using this program to prevent suffering that could have been prevented if the CDB, were initiated now, instead of later.

Most of society is not aware of the service gaps and lack of support offered to persons with disabilities across this Country, and even more are unaware that many within the disability community would love nothing more than to return to work or school if only they had access to housing stability, the food, the services, the products and the healthcare they required to function on a stable, and reliable basis.

In addition to long-term and permanently disabled Canadians who suffer, we must consider those injured at work or through other trauma such as car accidents, slips and falls, and other life-altering events. 

These persons, who now become part of the more comprehensive, ability-challenged group of Canadians, also face a long and arduous battle to access the support they need to recover or adjust to their new realities. This leaves many permanently disabled when access to proper care or devices would have allowed them to heal and return to work. Many within this group include highly educated individuals, including those we rely on the most, such as nurses and other frontline medical staff. This group of Canadians, include all professions, which adds to our staffing shortages across the Country.

The issues persons with disabilities face across Canada are doing nothing but adding to the problems all Canadians face on a daily basis. 

Perhaps, instead of blaming the disabled for their burden on society, it's time to learn more about our realities, hoping that we can all come together and urge our government to change how this group of Canadians is treated.

As society looks for someone to blame for their struggles, it's time to place our energies where they belong, and have always belonged, and that's with the government of Canada and each Province who have legislated this nightmare into existence.