Introduction

Webcast archive: Communication – a life and death matter

This week, we discuss the importance of being able to communicate and have others take your messages seriously.

Webcast archive: Communication – a life and death matter

In this episode of Euthanasia & Disability, Amy Hasbrouck, Christian Debray, and Taylor Hyatt discuss:

  • Communication: a life and death matter

Please note that this text is only a script and that our webcast contains additional commentary.

COMMUNICATION: A LIFE AND DEATH MATTER

  • This week, we’re discussing the link between communication disabilities, Augmentative and Alternative Communication ( AAC), and situations where a person’s life could be at risk for lack of communication access.
  • Communication has two components: receptive and expressive.  Receptive communication includes interpreting and understanding the information provided, in addition to perceiving it.  A Deaf person will not perceive spoken language, but can interpret and understand gestural language, whereas a person with aphasia may be able to hear that someone is speaking, but be unable to interpret or understand the meaning of the words.  Expressive communication includes the ability to form thoughts and feelings into language, and to generate the spoken, written or gestural symbols to convey those thoughts and feelings in a manner others will understand.
  • Hearing and vision impairments, autism, brain injuries and strokes, dementia, cognitive disabilities, cerebral palsy, amyotrophic lateral sclerosis, multiple sclerosis, damage to the speech organs, and the use of breathing devices can all interfere with effective communication, on a temporary or permanent basis.  But so does not knowing the local language, and that’s not considered a disability.
  • Myths and biases can also interfere with communication:
    • People who are unfamiliar with certain speech impairments often assume the speaker is drunk.
    • Having a speech impairment is also wrongly equated to having a cognitive disability.
    • In medical settings, an inability to speak may be confused with a lack of consciousness, understanding, opinion, or capacity.  Such assumptions can lead to mistaken diagnoses, imposing a substitute decision-maker, withdrawing life-sustaining care, and death.  A person may not respond because they don’t have the tools to signal their thoughts and feelings in a way others can understand.
    • Someone may refuse breathing assistance upon learning that it will affect their ability to speak. Newly-disabled people are more likely to be ignorant of AAC, or to view it as an unacceptable substitute for verbal communication.
    • Communication accommodations don’t have to be complicated or expensive. Many free apps are available for tablets and smartphones, and AAC can be as simple as a piece of paper with words or pictures on it.
  • An organization called Communication Disabilities Access Canada(CDAC) believes people with communication disabilities have the right to the supports they need in order to:
    • Understand what a person is saying;
    • Communicate their messages to others;
    • Use the communication methods that work best for them;
    • Connect with an organization using the telephone or alternative;
    • Communicate effectively at meetings and public events;
    • Read or understand the organization’s written materials;
    • Use websites and social media, and;
    • Complete an organization’s forms, take notes and sign documents.
  • In “critical” situations, such as matters involving the healthcare or legal systems, people have the right to:
    • Procedures, policies and communication supports to ensure they can give informed consent;
    • A communication intermediary to assist them in communicating; and,
    • Appoint a trusted person for support in decision-making and complex service negotiations.
  • As described by CDAC, it’s unclear exactly how far these “rights” extend, what obligations they impose, and where those obligations lie.
  • The Americans with Disabilities Act requires state and local government agencies, as well as businesses and nonprofits serving the public to ensure “effective communication.” What will be “effective” in a given situation depends on the “nature, length, complexity, and context of the communication as well as the person’s normal method(s) of communication.”  So while exchanging text messages might be appropriate for requesting a prescription renewal, it would not be “effective communication” for consulting a lawyer on drafting a will. Similarly, while a Braille menu might be useful for some blind people, many visually-impaired people never learned Braille and would need a different accommodation.
  • The new Accessible Canada Act requires organizations owned or run by the government (such as banks, the Canada Transportation Agency, the Canadian Forces, the RCMP, Crown corporations, and the Canadian Radio-television and Telecommunications Commission) to remove barriers to accessibility in a variety of domains. “Information and communications” (i.e. technology) and “communication” (sending and receiving information) are two of them. The preamble of the Act calls for a “proactive and systemic approach” to removing barriers, although (unlike the ADA) there are no requirements for how communication barriers should be dealt with.
  • In a letter to Minister Carla Qualtrough, Communication Disabilities Access Canada suggested improvements to the Accessible Canada Act last year.  Only the recommendation to add “communication” as a broader domain requiring accessibility measures was incorporated into the bill.
  • Provincial laws, which govern most services people use every day, are inconsistent. The Accessibility for Ontarians with Disabilities Act calls on organizations to provide necessary “communication supports” as part of its information and communications standard. This includes providing “captioning, alternative and augmentative communication supports, plain language, sign language and other supports that facilitate effective communications.  Since the Nova Scotian and Manitoban laws are relatively new, their standards are still being developed.
  • What happens when a person with a communication disability ends up in an institution due to a health crisis?
    • Staff in hospitals and nursing homes rarely take the time to explore communication options. They might (wrongly) believe that only specialized equipment can meet a person’s needs.
    • literature review by Stephanie Amundsen of the University of Florida found that hospitalized people who need but don’t receive communication supports are more likely to feel helpless, fearful, and anxious. Communication barriers also affect nurses’ interactions with people in their care; nurses are more likely to communicate “positively and effectively” with people who can themselves communicate easily. Nurses receive little training in non-verbal communication, which can lead to increased frustration for both parties.
    • According to a study by Jonathan Todd Sizemore at Eastern Kentucky University,, inadequate communication supports can also lead to “medical errors, unnecessary pain, confusion about medication regimes, unaddressed fears, unanswered questions, and human rights violations.”
    • Impartial interpreters and effective communication supports enable a person to make their needs and wishes known regarding their own care. Ms. Amundsen’s review demonstrated that increased communication leads to an improved quality of life; the person’s anxiety is reduced, and distressing situations can be dealt with quickly. In a hospital setting, tools to improve communication can be as simple as a button to call a nurse.
  • Writer Mel Baggs, who has multiple disabilities, described on their blogadapting their AAC device to set and enforce personal boundaries. (Mel uses gender-neutral pronouns).
    • After being harassed by a stranger outside their home, Mel reflected on the importance of communicating in ways that are not considered “polite,” including buttons for messages like “Stay away from me,” and “Leave me alone.” They also programmed some more forceful phrases, such as “Don’t patronize me,” and “Fuck off!” into the device.
    • Mel expressed their frustration at the expectation that people with disabilities should be “sweet,” compliant, and passive in the face of invasive conduct. “Being able to say ‘no,’ being able to cuss, being able to tell people to go away and leave us alone, these are some of the most important things people with communication impairments can learn to say. But often people don’t teach us that stuff, they don’t want us to know it.”
  • Access to AAC, and being able to communicate effectively, play a major role in end-of-life decisions:
    • People facing newly-acquired communication disabilities may feel panicked both about their inability to make their needs known, and about how their attempts to communicate are overlooked, ignored or misunderstood.  In that context, enabling the person to fully participate in discussions about end-of-life decisions takes on an even greater urgency.
    • The last “safeguard” listed in Bill C-14 (which is really an accessibility accommodation) requires the medical practitioner to “take all necessary measures to provide a reliable means by which the person may understand the information that is provided to them and communicate their decision.”  There are a couple of problems that need to be mentioned here.
      • Putting communication access in last place shows that  communication is given the lowest priority.
      • Providing communication access as a first step in the application and eligibility determination process would reflect the primary importance of clear communication in end-of-life decision-making.
      • The law does not require that the communication assistance provided be impartial and effective. For example, family members are often asked to “speak for” a disabled person, regardless of their potential conflict of interest, their views about the person’s quality of life, or assumptions about the person’s wishes and needs.
    • Ms. Amundsen’s literature review also showed that, in the absence of an effective communication system for a hospitalized person, “decisions are often made by family members and even health care professionals. This is disconcerting as patient and family wishes do not always coincide.” A study of 31 ventilator users cited in the review found that less than half “were directly involved in [their] health care decisions.”
  • Before her death, Carrie Ann Lucas wrote about the loss of privilege of communication; to argue for policy change, to represent clients as a lawyer, to advocate on behalf of her children, and to direct her attendants.  She had an excellent communication device and used it well; that wasn’t the problem. The privilege she lost was an essential aspect of communication that goes beyond the expressive and receptive processes; to be listened to and respected by one’s communication partner.  Because in the end, even the clearest message relayed by the most advanced communication device cannot open a closed mind.