Thank you very much.
Good afternoon, ladies and gentlemen. I want to present a rationale and propose two amendments to Bill C-14 to ensure that people with speech and language disabilities are given appropriate communication accommodations and supports in order to provide informed consent in the context of medical assistance in dying.
I am chair of the board of Communication Disabilities Access Canada, which is a national non-profit organization that promotes accessibility and human rights for over 450,000 people in Canada who have speech and language disabilities due to disabilities such as cerebral palsy, autism spectrum disorder, fetal alcohol syndrome, cognitive delay, Down's syndrome, traumatic brain injury, aphasia after a stroke, dementia, ALS, Parkinson's disease, Huntington's disease, and multiple sclerosis.
Bear in mind that with any condition I've just mentioned, the individual could be also suffering from terminal cancer. They may have cerebral palsy but also have cancer.
A person with a communication disability may have speech that is slurred or difficult to understand, or they may have little or no speech and communicate by pointing to letters, symbols, or pictures, or by using a communication device. Some communication disabilities, such as aphasia after a stroke, impact on a person's ability to understand and process what others are saying, but do not affect their cognitive ability to make decisions.
The incidence of speech and language disabilities increases with age and includes people with pre-existing and age-related disabilities, as well as communication challenges related to typical aging, such as hearing and vision loss, reduced comprehension of complex sentences, and word-finding difficulties.
Effective communication is essential for all patients facing end-of-life decisions. Successful communication is a two-way process in which messages are correctly and unambiguously understood by both the patient and the medical practitioner. This includes getting and understanding information about one's diagnosis, prognosis, treatment, and palliative options, weighing up information to reach a decision, and communicating that decision and the reasons for the decision.
These are complex communication issues for anyone and are further compounded for people who have compromised speech and language abilities due to disabilities that affect their ability to understand spoken and written language, retain options and appreciate consequences to options, and to ask questions, give opinions, and communicate a decision. However, with appropriate communication accommodations and supports, many people with speech and language disabilities can make and communicate informed decisions.
There is ample evidence to demonstrate that many people with speech and language disabilities experience significant barriers when interacting with medical practitioners about their health care, and specifically within informed consent situations. Unlike people who are deaf and who may require sign language interpreters, or people who require oral translators, there are currently no protocols or directives in place to ensure that people with speech and language disabilities are provided with appropriate communication accommodations and supports.
People with speech and language disabilities report that health care professionals often overlook and misunderstand their wishes. They are very anxious about the lack of safeguards in Bill C-14. They report that medical practitioners often do not know how to make spoken or written information accessible to them; do not understand what they are communicating when they use ways other than speech to convey their messages; assume their speech and language disability is a cognitive disability; underestimate their capacity to make their own decisions and end-of-life directives; defer to family members and personal support staff to communicate on their behalf; and rely on untrained people to assist with their communication where an arm's-length, mutual, qualified professional communication assistant is required. They also undervalue, typically, the quality of their life and their need for health care interventions.
CDAC is asking for stronger safeguards for people with communication disabilities. These safeguards must include a directive to medical practitioners to engage a communication professional to assess the patient and to provide any required accommodations and supports.
We are proposing the following amendments to C-14 to ensure that people can effectively communicate about medically assisted death. If there is any question about the communication process as identified by the medical practitioner or the patient, then a neutral independent professional with expertise in the patient's communication needs must be engaged in order to assess the required communication accommodations and/or to provide direct communication support. Communication accommodations and supports are required if the patient has challenges understanding information provided to them, retaining and weighing out the consequences of options as part of the decision-making process, and accurately and authentically communicating their decisions. Communication accommodations include picture or letter boards, speech output devices or communication support from a sign language interpreter, deaf-blind intervenor, speech language pathologist, language translator, or cultural interpreter.
Our second directive has to do with the subclause titled “Unable to sign”, regarding proposed subsection 241.2(4),
If the person requesting medical assistance in dying is unable to sign and date the request, another person—who is at least 18 years of age and who understands the nature of the request for medical assistance in dying—may do so in the person’s presence
to which we would like to add “under their direction on their behalf”.
Thank you.