Joanne Taylor is the Executive Director and Registrar of the Nidus Personal Planning Resource Centre and Registry. She has been involved in the reform of adult guardianship legislation for over 20 years. She had assistance with this response from Laura Gregg, a third year law student at University of BC, Ontario resident, who volunteers with Nidus through the ProBono Students Canada Program.
1. How did Nidus Personal Planning Resource Centre came about and what do you do?
Nidus is a non-profit, charitable organization in British Columbia established by citizens and community groups in 1995. Nidus was set up to provide education and assistance to British Columbians with making and using Representation Agreements for supported decision making. A Representation Agreement is a legal document and is governed by the Representation Agreement Act of B.C.
The citizens and community groups who established Nidus as a resource centrehad helped create the Representation Agreement Act through a partnership with the B.C. government. They knew that if the public could only get information and help with this new law from lawyers or government agencies, Representation Agreements would not be accessible enough. A legal professional is not required in the making of a Representation Agreement. The expertise about supported decision making came from the community, and Nidus was set up to protect and further this knowledge.
Nidus provides information through webinars, fact sheets, videos and stories. We provide the forms for making a legal Representation Agreement. You must be an adult in order to make a Representation Agreement; 19 years old is the age of adulthood in B.C.
We also operate a Registry where people can store a copy of their completed Representation Agreement. This means that in an emergency where the patient is not capable, the hospital can check the Registry to see who is appointed as the representative.
Nidus is a Latin term for nest: a symbol of support, safety and self-development.
2. What is the difference between substitute decision making and supported decision making when it comes to making health decisions?
Substitute decision making is about ‘doing for’ or ‘doing to’ a person. Supported decision making is about ‘doing with.’
Substitute decision making in health care is when the doctor decides a patient is not capable of making a health care decisions and someone else makes the decision on the patient’s behalf – according to what they think is best for the patient. Parents take this approach when making decisions for their minor children. Guardians and caregivers take this approach when making decisions for adults who are not considered capable of making health care decisions on their own.
Supported decision making is about helping someone to make their own health care decisions. With supported decision making, the individual’s preferences and wishes are at the centre of the decision making process. An important aspect of supported decision making is recognizing that the way a person communicates does not mean they are incapable of making decisions that affect their lives.
For example, the doctor might recommend that Shauna needs surgery. One of the effects of the surgery is that Shauna may lose some feeling in her left hand. Shauna has a developmental disability. The surgeon does not understand her communication.
Shauna has personal supporters who know that playing the piano is very important to her. The supporters will help Shauna ask about other treatments that will not affect her left hand. This might mean getting a second opinion.
Sometimes a doctor might not suggest another option because they know Shauna has a disability and they think she cannot manage a more complex procedure or one that carries more risk. But Shauna’s personal supporters know that Shauna has lots of determination for things that are important to her and she has people in her life who support her in dealing with challenges. Shauna has a right to choose, and her supporters advocate for that right.
Perhaps there is no better alternative to the surgery; the supporters then help Shauna ask about physiotherapy and other treatments to avoid long term problems.
With supported decision making, personal supporters make sure the doctor talks to the patient. They might help the doctor to explain a treatment using pictures and examples. The supporters help the doctor learn more about the person and their likes and dislikes so this knowledge can be factored into the doctor’s recommendations for treatment.
With supported decision making, someone is there to help you make a decision. It’s their role to talk to you about what matters to you and what you want. They can act as an advocate or a go-between for you with doctors or other professionals, or help you understand the possible consequences of your choices. They will help you decide what is best for you personally, and protect your right to exercise control over decisions that affect your life.
3. With a supported decision making approach to making health decisions, who are the personal supporters and what do they do?
A personal supporter is someone you trust and who respects your wishes. The Representation Agreement Act outlines three roles for personal supporters: representative, alternate representative and monitor. Everyone works as a team to support you and to help others listen to what is important to you.
A representative is the person you can call on for personal support. Their role is to help you make the decision that is right for you, and act as an advocate for you and your choices. A representative can go over relevant information with you, listen to your worries and hopes, and help you communicate with doctors and other people in the health system. A representative is supposed to be someone who knows you well, and has a good understanding of what is important to you, so that if they do have to make a decision in your place it can be based on your values and beliefs. They cannot be a paid caregiver or staff person in a facility where you live.
An alternate representative is a back-up representative. They will step in, temporarily or permanently, if the representative is unavailable for any reason.
A monitor acts as a safeguard and support for you. They try to make sure the representative is following their duties to support you. They try to solve problems if there is a conflict with the health care team or your paid support and your personal supporters. The Representation Agreement Act says that no one can prevent the monitor from having contact with you (the adult). This is an important safeguard.
4. In your view, what are the benefits of supported decision making when it comes to health decisions?
Supported decision making is very important for health care decisions because it helps the health care system to move away from the ‘we know best’ (paternalistic) approach toward an approach that honours people’s wishes. Often questions about mental capacity are used as an excuse for maintaining the old way.
There is a shift in health care decision making. Patients want more control. Medicine is not black and white. Health care decisions are influenced by one’s values and beliefs, not simply treatment options. It is about weighing the probabilities of success for specific treatments against perceptions of quality-of-life. The challenge is having sufficient information to make decisions.
Supported decision making helps patients better understand the decisions that affect their lives. The health system can be confusing and difficult to navigate, especially when you are sick or injured. Having a team of people you trust ready to assist you make a choice that is right for you can be very valuable.
5. What are some of the common criticisms of supported decision making and how do you respond to them?
Health care providers might argue that supported decision making takes too much time. They worry that they do not have time to communicate with a patient who does not understand, even with the interpretive help of a representative. They worry about people disagreeing or challenging their recommendations for care.
However, supported decision making is based on the natural way that people make important decisions in their life. People talk with friends about how a medication has worked for them, they ask family members to help them research a procedure or ask a trusted loved one to help them go over the pros and cons of a treatment they are nervous about. Supported decision making formalizes these processes and makes it more visible and obvious when dealing with the health system.
Everyone deserves to be listened to and respected, especially concerning their health care. Supported decision making is about protecting people’s ability to direct their own lives, and it’s worth some extra time and effort.