This blog is part of "Monitoring Matters", a special series of guest blogs by VPS Advisors.
By Barbara Collier, Anne Abbott and Hazel Self
The government's minimal regulatory proposal for monitoring Medical Assistance in Dying (MAiD) recognizes the importance of having practitioners report upon patient consent procedures and related assessments. Yet without spelling out specific practices to ensure reliable and authentic communication, and without requiring practitioners to report on specific measures that they have taken to support effective communication, we can have little confidence that MAiD-related decisions are being appropriately grounded in effective communication especially for patients who have disabilities that affect their communication. Regardless of one’s personal and moral views of MAiD, we propose that, in order to safeguard patients, family members, and practitioners, it is essential to identify, provide, monitor and report what communication accommodations and supports are required and used, who provides these supports, and how these communication supports are provided in order to ensure authenticity, accuracy and equity when communicating in MAiD situations.
Effective Communication within MAiD
Effective communication is the foundation for all healthcare interactions. Effective communication has been defined as “the joint establishment of meaning”. In high-risk contexts, such as MAiD communications, “effective communication” does not simply mean a patient “talks” and a healthcare practitioner “listens”, or conversely, a practitioner “talks” and a patient “listens”. Rather, a negotiated exchange must occur…an exchange that can be documented so it is clear what a patient knows, thinks, and wants, AND what a practitioner has said about what is possible and available (or not) for that particular patient. This is especially the case when a patient has a communication disability.
People may face communication challenges as a result of being Deaf, Deafened, Hard of Hearing, Deafblind, or they may have a disability that impacts on their ability to speak, understand what is said, read or write. There are many disabilities that can impact on a person’s speech, language and communication abilities such as acquired brain injury, cerebral palsy, intellectual disability, autism spectrum disorders, learning disorders, fetal alcohol syndrome, apraxia, aphasia, hearing loss, amyotrophic lateral sclerosis, Down syndrome, dementia, Parkinson’s Disease, Multiple Scerlosis and other developmental, acquired, degenerative and age-related disorders. There are over half a million Canadians who have disabilities that affect their communication and these disabilities range from mild to severe and increase with age. Having a communication disability can significantly impact on all aspects of a person’s life.
Patients who have disabilities that do not affect their communication, frequently report serious challenges interacting with healthcare practitioners because of prejudice, perceptions of reduced quality of life experiences, ableism, discrimination, lack of knowledge and familiarity about their disability, as well as language and cultural differences. In addition to these barriers, patients who have disabilities that impact on their communication report that practitioners often do not consult them about healthcare decisions that affect them. They report that practitioners may not understand how they communicate and restrict their communication to answering “yes” and “no” type questions. There are numerous examples of practitioners either underestimating or overestimating the capacity of patients with communication disabilities to give consent. In addition, the majority of practitioners have little or no training about the provision of communication accommodations and supports and often defer decision-making to family members or in some cases caregiving staff who do not have power of attorney to make these decisions and in some cases, have conflicting interests.
For whatever reason, when an individual with communication challenges requires information about end-of-life directives and specifically about MAiD, that person must have access to appropriate communication supports and accommodations, to ensure that their questions, opinions and desires are reliably understood, authentic and validated. Without appropriate communication accommodations and supports, people who have disabilities that affect their communication cannot exercise informed consent.
We are also aware that individuals with degenerative disabilities often cite as their “benchmark” for MAiD, a time when they lose their natural speech. Such individuals, however, may not have sufficient information about potential communication assistive technologies or services that can address these issues. Or they may not have access to these services and devices.
We believe there is a critical need to document a range of communication issues, in a way that protects a person’s privacy, in order to ensure that patients who have compromised communication have all the information, accommodations and supports they require to make and communicate a decision about MAiD.
Communication Access and Informed Consent
Informed consent is a communication process whereby the person must understand information provided to them, retain that information, consider the consequences of that information and reliably communicate their decision.
Having a speech, language and communication disability does not always preclude one’s ability to effectively communicate and give informed consent. For that to happen, people need appropriate communication accommodations and supports that meet their individual needs. If a patient does not have an effective way to communicate, a Speech-Language Pathologist must be engaged to conduct a communication assessment in order to determine the most appropriate communication methods, accommodations and supports to meet their needs.
Communication accommodations and aids include an array of tools that can facilitate a person’s ability to understand and communicate effectively, such as hearing aids, glasses, picture/photo/text cards, symbol and letter boards, and communication devices. Some communication accommodations are personalized; others are generic to a particular situation such as an intensive care setting. The authors are not aware of any generic communication vocabulary or pictures to facilitate communication about MAiD.
Communication support refers to human assistance that a patient may require to understand and / or to reliably communicate their intent to a practitioner. Communication support is often provided informally by a person who is familiar with the patient and how they communicate, such as a family member, friend, or a caregiver. In other situations, where there is no familiar person to assist with communication or where there is a question about conflict of interest or the reliability of the communication support provided, then a Speech-Language Pathologist must be engaged to either validate the familiar person’s communication assistance or to directly provide independent communication support. The authors are not aware of any guidelines that have been developed to define the role of a practitioner working with an informal communication assistant or a Speech-Language Pathologist in MAiD.
What communication monitoring practices are required in MAiD?
Catherine Frazee’s Blog How to Listen: Monitoring 101, February 22, 2018, proposes four criteria for responsible listening in the context of MAiD: (1) Ask the Right People (2) Ask the Right Questions, (3) Take the Time it Takes, and (4) Be Prepared to Step Up. We support these recommendations and would like to propose additional requirements to ensure that people with communication disabilities are better supported and protected.
Specifically we want to see procedures and monitoring in place related to a person’s communication abilities and assurances that appropriate communication accommodations and supports are provided when required.
For example, we would want to see the following documented:
Does the person have a communication disability that impacts on their ability to give informed consent, including understanding spoken language, retaining and considering consequences, and communicating a decision? If so:
Does the person have established and reliable ways to communicate about MAiD (speech, writing, pictures, spelling or a communication device)? If not, has a Speech-Language Pathologist been engaged to conduct an assessment to identify and provide appropriate communication methods and accommodations?
What communication methods and accommodations did the patient use to understand information, retain and communicate questions, opinions and decisions about MAiD?
What communication assistance did the person require and use? Did the patient authorize the person who supported them with communication? Was there any reason to suspect a conflict of interest for the person supporting communication?
Did the practitioner interact directly with the patient and was the communication assistance provided at all times and observed by the practitioner?
Can the practitioner validate that the communication assistance was provided in a way that was directed and confirmed by the patient; that messages were not coerced in any way; that leading questions were not used; that assumptions were not inferred; and that the assistant did not control or influence the patient’s communication?
In situations where the practitioner questioned the reliability of the person’s communication and / or their communication assistance, was an independent speech language pathologist engaged to provide support?
For patients who have degenerative conditions that will potentially impact on communication in the near future, and who may be considering MAiD for a time when they can no longer speak, we want to know that they have been informed of the assistive communication technologies and options that they could potentially use to maintain their relationships and control in their lives.
We propose the following protocol in order to ensure that people who have disabilities that affect their communication are protected within any MAiD discussion:
If there is any question about the communication process in MAiD, as identified by the physician or the patient, then a neutral, independent professional Speech-Language Pathologist, must be engaged in order to assess the need for any required communication accommodations, to validate communication assistance from a person
familiar with the patient’s communication methods 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-up the consequences of options as part of the decision-making process and accurately and authentically communicating their decision.
“Every day, health care workers face difficult dilemmas in dealing with communication-vulnerable patients. Most days, they come up with ways to navigate the many varieties of communication barriers they face and then develop sensible solutions to the problem at hand. But when they do not, bad things can and do happen.” (The Joint Commission, 2013).
We believe that MAiD presents the greatest challenge with the most profound consequences for patients who have communication disabilities. A recent case in an intensive care unit clearly illustrates the issues. An elderly gentleman sustained a severe cervical spinal injury which left him with quadriplegia and ventilator dependent. His two daughters were having a heated argument about whether their father would want to be kept on life support. The nurse noticed that the patient was following the argument and appeared distressed. As a consequence, a Speech-Language Pathologist was consulted and the patient was given the ability to demonstrate that he understood his condition and was competent to participate in medical decision-making. He indicated that he did not want to be maintained on life support but that he wanted to be able to communicate with his family for a couple of days to settle his affairs and say his goodbyes. He not only got to express his autonomy in medical decisions but to also spare his daughters the recriminations that would have resulted if they had continued to quarrel about their father’s life support decision.
We propose that the government address these critical communication issues through robust and detailed communication access policies, guidelines and monitoring procedures.
Barbara Collier is a Speech-Language Pathologist, a Fellow of the International Society for Augmentative and Alternative Communication and Executive Director of Communication Disabilities Access Canada (CDAC). Anne Abbott is an artist, a disability advocate and uses a letter board to communicate. She is a board member of CDAC. Hazel Self is Chair of the Board of Directors of CDAC. She has quadriplegia and uses attendant services.
Communication Disabilities Access Canada (CDAC) is a national non-profit, disability organization that focuses on social justice and accessibility for people with a wide range of disabilities that can affect a person’s ability to understand spoken language and / or express what they want to communicate. CDAC is one of many leading Canadian organizations that support the Vulnerable Persons Standard