A US film about assisted dying and the treatment of people with disabilities is set to premiere at this year’s Sundance Film Festival.  Titled “Life After”, the feature documentary by Reid Davenport (who also has cerebral palsy) explores the story of Elizabeth Bouvia, a 26-year-old woman with cerebral palsy and arthritis, who in 1983 attempted to starve herself to death in a California hospital, citing that life wasn’t worth living. The legal battle that followed turned her into a public figure. A court ruled she did not have the right to die.

However, in 1986, a judge reversed the decision, but Bouvia chose to continue living, though she still preferred to die under different circumstances. She later lived with a live-in nurse in her own apartment until her death in 2014.

The filmmaker also heads to Canada to explore one of the world’s most aggressive assisted dying programs known as MAID (medical assistance in dying). Canada’s Medical Assistance in Dying (MAID) program, which allows euthanasia for chronic illnesses or disabilities, has increased, and MAID is now the 5^th leading cause of Canadian deaths. Davenport digs into the unprecedented rise in disabled people dying prematurely due to  MAID and speaks to advocates, patients and doctors who believe euthanasia saves healthcare costs. Davenport views this as a troubling factor in the rise of euthanasia. Davenport acknowledges that assisted dying, in theory, could be safe for terminally ill adults but believes it’s unsafe and risky in a neoliberal society where patients face significant social and economic pressures. Davenport worries that society encourages people with disabilities or chronic medical conditions to view life as not worth living.

The film director is cautious about his documentary being seen as cynical or alarmist by pro-euthanasia advocates and progressives. Davenport believes the issue of assisted dying is complex and that disability activists, not just conservatives, have valid concerns about the potential for abuse and the “slippery slope” argument. He notes that even if the slippery slope argument is seen as fear-mongering, there are instances where it is valid.

The film in varying confronts two powerful systems—the healthcare and bureaucratic systems—challenging their responsibility for overlooking how their shortcomings and policies may not be as effective as they seem. More importantly, Life After is a crucial exploration of the value of life itself.

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New government data reveals that medically-assisted dying (MAID), also known as voluntary euthanasia, accounted for 4.7% of all deaths in Canada in 2023, marking a significant increase in the number of assisted deaths since euthanasia was legalized in 2016. The report, the fifth annual release since legalization, shows that approximately 15,300 people chose medically-assisted death last year, up nearly 16% from 2022.

The majority of those who opted for assisted dying were elderly, with a median age of over 77. Around 96% of cases involved individuals whose death was deemed “reasonably foreseeable,” usually due to terminal conditions like cancer. A smaller group, however, sought euthanasia despite not being terminally ill, citing long-term, debilitating illnesses that severely affected their quality of life.

Canada remains among a few countries to have introduced assisted dying laws in recent years, alongside nations such as Australia, New Zealand, Spain, and Austria. Under Canadian law, consenting adults with a serious and irremediable medical condition can request assistance in dying, provided two independent healthcare providers confirm their eligibility.

In 2023, over 320,000 people died in Canada, with 15,300 opting for assisted death, about one in every 20 deaths. Despite the increase, the growth rate of assisted deaths slowed considerably in 2023 compared to previous years, with a 16% rise instead of the usual 31%. The reasons for this slowdown remain unclear.

For the first time, the report also provided data on the ethnic and racial makeup of those who chose assisted death. It found that approximately 96% of those who died by euthanasia identified as white, despite white people making up only about 70% of Canada’s population. The second-largest group were East Asians, who represented 1.8% of assisted deaths, compared to their 5.7% share of the total population.

Quebec continued to lead the country in the use of medically-assisted death, accounting for nearly 37% of all euthanasia deaths, even though the province represents only 22% of Canada’s population. Quebec has launched a study to explore why its euthanasia rate is disproportionately high.

While the number of assisted deaths grows in Canada, the country still lags behind the Netherlands, where euthanasia accounted for 5% of total deaths last year. In the UK, MPs recently voted to approve a bill allowing terminally ill adults in England and Wales the right to seek assisted death, though it faces months of further scrutiny before becoming law.

Some critics of Canada’s euthanasia system, such as the Christian think tank Cardus, have raised concerns about the rapid growth of assisted dying, calling it alarming. The report comes as Canadian provinces have expressed reservations about expanding the program to include those with mental illnesses, a move initially scheduled for earlier this year but delayed after concerns about system capacity.

In Ontario, a controversial report highlighted cases where individuals were granted assisted dying despite not being terminally ill. One case involved a woman in her 50s with depression and a chemical sensitivity who requested euthanasia after struggling to find housing that met her medical needs. In another instance, a Nova Scotia cancer patient revealed that she was repeatedly asked if she considered assisted dying during her mastectomy surgeries, which she described as “inappropriate.”

Concerns have also emerged over the potential for people with disabilities to consider euthanasia due to inadequate housing or disability benefits. As the number of medically-assisted deaths continues to rise, the slippery slope of euthanasia is seen in the debate over the ethics and the seemingly increasing erosion of safeguards around assisted dying.

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A recommendation from the Ministry of Health’s latest review of the End of Life Choice Act is calling for the gag clause, i.e. the protective measure that restricts doctors from raising assisted dying with patients to be changed. This is one of 23 recommendations made by MOH to strengthen the current law. The ministry recommended that the law be amended so health practitioners could raise assisted dying — but only as part of discussions about a person’s treatment and end-of-life care options. Euthanasia advocates in favour of this law change argue that doctors managing a patient’s palliative care should be able to discuss assisted dying with patients as it aligns with giving patients information and is different to a doctor making recommendations. International evidence would say otherwise regarding coercion and decision at such a vulnerable time in a patient’s life.

On the contrary, groups and individuals such as the Disability Rights Commissioner and the Australia and NZ Society of Palliative Medicine want this law to remain unchanged as it addresses the power imbalance between a doctor and patient and reduces any perception of coercion.

The ministry’s statutory review, presented to Parliament last week, made 23 recommendations, citing the law was generally working well and that there had been no wrongful deaths among the 978 people who had gone ahead with the procedure. Ironically, the Herald reported last month that two former members of the committee felt the oversight process was so inadequate they would not have known if someone had died wrongly.

The MOH report also recommended more powers for the End of Life Review Committee, which is tasked with ensuring each assisted death complied with the law. It said the committee should be able to access a broader range of information and be able to raise any concerning cases with relevant authorities.

Act MP Todd Stephenson has drafted a member’s bill which focuses on one aspect of the law — a requirement that a patient have six months to live to get access to assisted dying. Stephenson said he would consider re-drafting his bill to include some of the ministry’s recommendations, including the removal of the “gag clause” – i.e. a protective measure that safeguards both doctors and patients.

Original article

New research highlights significant gaps in paediatric palliative care services in New Zealand, with children facing inequitable and inadequate support. Currently, Starship Children’s Hospital in Auckland is the only provider of a publicly funded specialist paediatric palliative care service, and the service is small and vulnerable due to workforce pressures and a lack of additional funding.

Each year, about 350 children (aged 19 and under) die of serious illness in New Zealand, and a much larger group could benefit from specialist palliative care. International research suggests that with advanced medical technology, the number of children living with life-limiting conditions is expected to triple in the next decade. However, the workforce of trained paediatric palliative care professionals is insufficient to meet the growing need. As a result, many children and families are missing out on essential care, which has serious consequences for their well-being.

A report commissioned by the Ministry of Health in 2012 recommended the establishment of a nationwide service supported by Starship, with funded clinicans in each district. A group in Wellington has started a donation-funded paediatric palliative care service, but the researchers emphasize that a nationwide, publicly funded service is needed to ensure all children, including Māori, receive quality, compassionate care. They call for more investment in training and resources to build a workforce capable of meeting the demand.

Full story found here https://www.rnz.co.nz/news/national/533164/poor-care-for-dying-children-in-most-regions-report-shows