CARP’s gives expert panel recommendations on MAID

folded hands bw

The following is CARP’s Submission to the Council of Canadian Academies (CCA) Expert Panel on Medical Assistance in Dying in Canada.

______________

Question 1:

What are your organization’s main issues concerning requests for MAID by mature minors, advance requests, and/or where mental illness is the sole underlying medical condition?

CARP welcomes this opportunity to provide the CCA Expert Panel on Medical Assistance in Dying in Canada with our views on advance requests for medical assistance in dying.

About CARP
CARP is a national not-for-profit, non-partisan association with 300,000 members across Canada. Most of our members are retired and enjoy above average education and income.

CARP’s position
CARP believes the criteria under which patients can request and receive assistance in dying from a physician should be expanded. A 2016 poll of 6,109 CARP members indicates eight-out-of-ten members support advance consent for medical assistance in dying for an individual diagnosed with a grievous and irremediable medical condition, such as dementia.

Problems with Current Legislation
The current assisted dying legislation, while a huge improvement over the previous law, does not allow individuals to ensure their wishes will be followed should they lose the ability to make competent decisions. It fails to provide Canadians with acceptable options. When individuals are competent to make decisions, they are not near enough to death. When they are near enough to death, they may no longer be competent.

Need for Advance Requests
According to a 2010 study commissioned by the Alzheimer’s Society of Canada (The Rising Tide), “Canada is facing a dementia epidemic and needs to take action now. Approximately 500,000 Canadians have Alzheimer’s disease or related dementia today. It is the most significant cause of disability among Canadians (65+) …”

The study also forecasts that dementia worldwide will increase two-fold over the next twenty years. Where today 35 million people in the world have dementia, by 2050 that number is expected to increase to 115 million. In Canada, over a million people will likely suffer from dementia by 2050, so the concern among CARP members is very real.

Granting people the right to make an advance request for an assisted death is a critical part of allowing individuals to make their own healthcare decisions. It would provide peace of mind to those who fear a prolonged life with dementia more than death.

At the moment many older Canadians feel no security in this regard. Instances like the Margot Bentley case (as reported in the Vancouver Sun, “the former nurse signed a living will several years before she got Alzheimer’s disease, requesting euthanasia in the event she developed an incurable disease, but her wishes have never been honoured”) have made many CARP members aware of the limitations of our current laws.

Patients’ wishes outlined in advance care directives must be obeyed under the law. Individuals can stipulate a range of circumstances under which they refuse treatment. Refusing to accept an advance request for medical aid in dying (under specific circumstances) is inconsistent with the essence of patient-centred healthcare: that treatment is the patient’s decision. It only makes sense to allow Canadians to make advance requests for medical aid in dying as well, in circumstances where they will no longer be able to make their wishes known.

CARP members have consistently supported medical assistance in dying. The clarification sought by CCA’s expert panel is important to CARP members who, in making advance directives for their medical care, seek certainty that their personal health choices will be upheld later in their lives, should they no longer be able to make their own personal healthcare decisions, such as in cases of dementia.

We are pleased CCA is gathering information on this issue and hope that the findings will result in changes to the Canadian medical assistance in dying legislation to ensure Canadians’ right to make their own healthcare decisions. CARP would be pleased to answer any questions related to this submission, and to provide any further input that might be of use to the expert panel.

 

Question 2:

Please identify or provide relevant knowledge that your organization would like to have considered by the CCA Expert Panel on MAID as it relates to mature minors, advance requests, and/or where mental illness is the sole underlying medical condition.

Please click here to see the 2016 CARP MAID Survey Results, particularly the responses to Question 11, in which CARP members were asked whether they agree or disagree (on a spectrum) that an individual who has been diagnosed with a grievous and irremediable condition may make an advance request for medical assistance in dying.

In addition, please click here to see the 2010 study commissioned by the Alzheimer’s Society of Canada, entitled Rising Tide: The Impact of Dementia on Canadian Society, referenced in this submission which forecasts a significant increase in the number of people suffering from dementia in the future.