Meeting purpose

This BC-PAN meeting was a 2-day Zoom conference on October 4 and 5, 2021. The purpose of the meeting was to seek input from public advisors to guide college partners on how colleges may enhance communication to the public about an informed consent process.

Key messages from public advisors

• Informed consent should be clear and understandable to the public; use language and a method of delivery that makes sense to the patient. Avoid jargon and acronyms.
• The informed consent process should not be rushed. Colleges can create resources directed at the public that practitioners can refer patients to so patients can do their own research, ask questions, and come to their own conclusions.
• It is helpful to ask the patient to relay back the information the practitioner gives to evaluate if they fully understand.
• Information provided in the informed consent discussion should include best- and worst-case scenarios of the treatment, alternatives, costs, evidence of outcomes, potential impacts on other aspects of life, and the complexity of the procedure.

Orientation about informed consent

The facilitator oriented the meeting to the day’s topic and gave a brief overview of informed consent.

• Informed consent has impacted a lot of people throughout history. Residential school experiments were done without any consent, women’s husbands provided consent for them until recently in 1980s mental institutions. This topic may be triggering for some.
• To make good health care decisions the public must understand what their treatment choices will mean for their future
• Communication plays an essential role in informed consent.

Advisor poll

Have you had an experience where a health care provider educated you about the risks, benefits, and alternatives of a procedure or intervention?

• Yes, many times – 30%
• Yes, one or a few times – 62%
• No – 8%

If you said yes, on average how satisfied were you with this process?

• Satisfied – 42%
• Neutral – 50%
• I do not recall/I have not had an informed consent experience – 8%

Background on enhancing communication and informed consent

Joelle Berry, CPTBC Manager of Inquiry and Discipline, gave a presentation and provided context about informed consent in health care.

• Capable adults (19+) have the right to give consent, refuse consent, and revoke/withdraw consent.
• You also have the right to choose what to consent to, expect respect about your consent, and participate in planning and decision making of your health care. Applicable to 19+, infant act is different.
• In order to qualify for being informed consent, the following elements must be present:
  • Capable
  • Given enough information
  • Relates to the care proposed
  • Voluntary
  • No fraud or misrepresentation
  • Opportunity to ask questions and get answers
• Consent can be written, spoken, or behavioural. 
• Exceptions where consent is not required for a health care provider to give you care is when the adult is incapable and a guardian gives consent, or when in an emergency.  
• Consent is ongoing. Your health care provider should be checking in with you periodically to make sure you are consenting to treatment. If there are changes in your treatment, it warrants consent again.

Advisor questions and comments

• Does going to an appointment on an ongoing basis imply informed consent since you are physically going to get that treatment?
  • To a certain extent yes, but this is overall contextual. If you have been adequately informed of your condition, treatment plan, alternatives, and given consent, then coming regularly to treatment implies continued consent. There still needs to be check-ins, and if there are changes the patient needs to be informed.
• Another barrier to informed consent is the patient’s reluctance to believe the practitioner’s information due to internet and social medical input.
• Who exactly takes my consent? Is it practitioner, nurse, or the desk? Where does the authority lie?
  • All regulated health care professionals are required to directly obtain your consent through a conversation and in person. It should then be documented in your clinical records.
• Does implied consent in the field carry on or does it have to be obtained in different positions during the treatment process? Ex. Paramedic gets consent because person is unconscious, but the patient gains consciousness later.
  • Consent is a dynamic process. Once there is a change in the patient’s state or treatment, consent needs to be gotten again.
• What happens if your wishes aren’t honoured?
  • Consequences are of many different levels and depends on the harm suffered. The individual can make complaint to colleges, employer, and/or file a civil lawsuit.

Thinking about informed consent

Advisors separated into break out rooms to discuss questions and provide input:

Think about a recent, or memorable, interaction with a health care provider. What happened, if anything, to help you feel well informed about your health care treatment or service? Did you wish anything went differently?

• A parent has a child who is not mentally capable of providing informed consent even though it appears that the child, who is a young adult, says they do not consent.
• An advisor was given a good explanation before a surgery. If they were to opt out of the surgery, the alternative would have been a more invasive process. They felt well informed and consented to proceed with whichever process was most appropriate.
• Providing informed consent for a family member who was able to consent but did not speak English and did not understand what they were signing.
• Some things that are expected on a consent form was missing. Other options were not listed, only the surgical option was provided.
  • Part of informed consent should include consequences of not going forward with the treatment.
• An advisor overheard a conversation of practitioners seeking consent form a patient who was requesting a translator. The practitioners were impatient and told the patient they may not get help if consent wasn’t given soon.
• At the dentist, a public advisor asked for a specific course of treatment based on cost, given their limited income. There was a miscommunication and misunderstanding about what was agreed to and they ended up being charged for the treatment.

What would a best-case scenario of informed consent look like?

1. What information do you want to hear or know about the health care proposed for you? 
   
   • Best- and worst-case scenarios, risks and benefits.
   • Evidence to back up suggestions because some patients may research online.
   • Additional plain language resources provided for those who want to do extra research.
   • Upfront information on the costs of the treatment.
   • Information about wait times and preparation before the treatment.
   • Potential impacts on other aspects of life such as travel, work, family, etc.
   • The complexity of the procedure; who will be involved in care, what information will be provided about the patient, etc.
     
2. What do you want the health care provider to do, or not do, as they share important information and risks regarding a patient’s health care decisions? Consider what’s needed before, during and after a treatment or service.
   
   • Do not rush the consent process, offer support if the patient is alone and offer time to make the decision.
   • Provide the opportunity to ask questions and engage with the patient.
   • Practitioners should explicitly express that treatments require consent, because not everyone is aware that consent is needed.
   • Do not make assumptions about the choices or preferences of the patient.
   • Offer pre-reading material if possible so the patient can be prepared for the appointment.
   • Address all stages of the procedure.
   • Be empathetic and considerate of the patient’s lived experience.
   • Be mindful of context. Non-invasive procedures require a different amount of care than surgery or cancer treatment or taking blood.
   • There are opportunities for discrimination when collecting consent. If practitioners assume that the patient cannot understand the description of the treatment, language used may not be clear, truthful, or complete.
   • Ask the patient to repeat back their understanding of the treatment to ensure that the information has been understood. Reaffirm consent.
   • Emailing the consent form before the interaction so people can go over it prior to visit. Having a chance to do the research if you desire so you can come in with questions. Multiple points to be informed.

How could the Colleges support the informed consent process? What kind of resources or support should be offered to the member of the public, if any, and why?

• Develop a practitioner-specific standardized consent form with important sections highlighted. So, if there is a section (ex. “risks”) that is not completed, the patient can flag it and ask questions.
• Educate the public on what informed consent is and what their rights are.
  • Can be done through signage in points of care and digestible public resources like FAQs. Include translated resources.
• Engage with practitioners and have them reflect on informed consent via a workshop or webinar.
  • Provide training that addresses biases practitioners may have regarding informed consent.
• Have information on websites for people to further understand what they have consented to. Having general information available about different types of procedures. Or showing someone having that procedure for people who learn better written.

When would you expect a more in-depth discussion about consent?

• Procedures that entail high bodily risk or adverse side effects.
• Various outcomes of the procedure or treatment.
• High impact on daily life.
• When there are many alternatives available.
• When pain management is required.
• Procedures that requires medication.

For a repeated health care service, like physical therapy, how often should a member of the public be asked for consent, and why?

• Patients should be verbally reminded of their rights to consent and withdraw consent every interaction.
• If there has been a change in treatment, condition, or another issue present.

Why is informed consent important to the public?

• We only have one body and one life. Our choices are ultimately personal decisions.
• Understanding the process helps to ensure the best possible outcome.
• Helps to build trust between the patient and practitioner.
• Everyone should receive the same level of respect and treatment.
• When providing consent, the we are putting our health and wellness in the hands of a practitioner. It is our right and responsibility to do so with the best possible information.

Group discussion on informed consent

Public advisors answered on a piece of paper:

If you were asked to observe an informed consent process, what 3 things would you be looking for to judge that it was effective, and why?

1. The consent process must be meaningful and empathetic. The personal circumstances of the patient are taken into consideration.
2. The process is equitable; there are efforts made to address power, knowledge, and capacity barriers.
3. Patient acknowledgement showing breadth of understanding.
4. The treatment, alternatives, risks, and effects are presented to demonstrate impact without pressure and is done with care. Clear information and transparency.
5. Enough time is provided, with an opportunity to ask questions and gain additional reputable information.
6. Physical or electronic documentation of consent.

What stands out?

• Clear and understandable; use language and method of delivery that makes sense to the patient. Avoid jargon and acronyms.
• When giving information, ask them to relay it back.
  • It may be useful to get the medical team to assist. Some practitioners struggle to convey information simply. Send someone else in the team to make sure that the person has an understanding.
• Responsive to each patient’s circumstance.