Lost in Transition: Legal and Ethical Approaches When Applying Patient- and Family-Centred Care to Adolescents with Disabilities

Abstract

Using a complex case scenario, we explore the challenge of providing treatment within a patient- and family-centred care model when a capable adolescent with a disability disagrees with her mother about a proposed service. The legal and ethical obligations of health practitioners, adolescent patients and the family are examined. We argue that the human rights of adolescents with disabilities are critically important and must be actively protected and advanced by health practitioners as well as family members, and should be an explicit part of the patient- and family-centred care model. We also propose that a broader understanding of disability that includes an awareness of the social model of disability be incorporated. This includes sensitivity to language preferences to demonstrate both an awareness of the larger issues children, adolescents and families face and, importantly, to more explicitly signify that they are valued as contributing members of society. Furthermore, a better understanding of the complexity of disability will help health practitioners critically determine when individual treatment options might be appropriate verses when the focus on technical intervention obscures the often overlooked role that social factors play in preventing the individual from achieving his or her goals.

Appendices

Appendix–—A Framework for Assessing Capacity for Treatment in Children and Adolescents (Adapted Aid to Capacity Evaluation)

A health practitioner in Ontario proposing a treatment uses professional judgment to determine whether a child or adolescent (hereinafter referred to as ‘child’ for simplicity) has the capacity to consent to a specific treatment or plan of treatment. There seem to be few tools to assist in the assessment of capacity, but the Adapted Aid to Capacity Evaluation, below, may be useful to health practitioners .

In Ontario, capacity (also referred to as competence) is set out in the Health Care Consent Act (1996) as the ability to understand the information provided, and the ability to appreciate the consequences of making or not making a decision.

More specifically, capacity can be described as:

The Ability to Understand—The child should be able to:

• Possess factual knowledge about his or her own health and functional status

• Know the available options

• Remember the information provided

The Ability to Appreciate—The child should be able to:

• Appraise the risks and benefits associated with the potential outcomes of the various options

• See how the facts apply to his or her own situation

• Have a reason for his or her decision

A person makes an informed decision (to consent or refuse) in accordance with one’s own beliefs and values.

A Continual Consent and Capacity Process

The goal is to respect the child, help the child develop decision-making abilities, and help the child make decisions about his or her treatment as he or she is able. Capacity of a child can change with time, with development and with changes in medical condition. Every interaction with a child can be an opportunity to assess capacity, encourage understanding of the treatment, and review willingness to continue with the treatment.

Important Considerations During the Process

• Communication: are there barriers to communication (language, understanding or expression) which should be addressed with the child? With either of the parents?

• Optimize Capacity: what can be done to optimize the capacity of the child?

• Relationship Building: begin discussion with relationship-building and introduction to treatment being proposed. Begin with language and ideas appropriate to the child’s cognitive level.

• Reassess Professional Impressions: is the child able to participate fully or partially? Are parents able to participate fully? (See fuller discussion below.)

• Informed Discussion: restart or continue the discussion regarding proposed treatment.

• Opinion on Capacity: by asking questions to probe the child’s decision-making capacity (see questions suggested by the Adapted Aid to Capacity Evaluation, below) and, using professional impression, formulate an opinion about whether the child is capable to make this treatment decision. Or seek help from another clinician to assess capacity, or consult with psychiatrist or psychologist/psychological associate.

• Review Often

Health Practitioner’s General Professional Impressions

During interactions the following may be helpful to guide impressions:

• Attention: Is the child able to sit still and listen to a discussion? Is the child running around the room and not paying attention to the discussion? Is the child able to make eye contact and listen?

• Engagement: How engaged is the child with his or her parent? With you as the clinician?

• Basic Facts about Self: Is the child able to tell you his or her name, age, brothers or sisters?

• Proposed Treatment: Is the child able to describe to you the basics about treatment? Can he or she tell you in simple terms about the treatment, risks, what you are going to do, etc.?

• Firm Decision: Is the person able to make a firm decision?¹⁸

• Reasons: The reason a child provides for explaining his or her preferences lends insight into decision-making capacity. If the child is able to articulate a plausible justification for his or her expressed decision, then that expression should be viewed as evidence of the child’s capacity .

• Realistic: Are the child’s expectations for outcome realistic?

Adapted Aid to Capacity Evaluation

If it is unclear whether a child has the capacity to consent , then the researcher could use a tool, such as the adapted Aid to Capacity Evaluation (adapted ACE). The ACE was developed by Etchells and Darzins (1999) and has been validated for use in adults. The “Adapted ACE” was developed at Holland Bloorview Rehabilitation Hospital for use with children, although its use in children has not been validated.

While explaining the treatment and answering any questions the child raises, these questions can be used to determine if the child is able to understand and able to appreciate the information. If the child cannot answer the question initially it should not automatically be assumed that the child is incapable. Rather the information should be re-explained and the question asked again. Determining capacity requires a judgment regarding the quality of the answers, i.e., does the child answer correctly, is the response a rote repetition of information or is he or she able to accurately discuss and consider the information in his or her own words?¹⁹

• A. The following are sample questions to begin to address whether the child is “able to understand” information relevant to making a decision about medical treatment:

• What health problems are you having right now?

• Why are you here?

• Probe: Do you have [said health problems]?

• Do you know what we could do to help you with [your problem]?

• What else can we do to help you?

• Are there any other things you think we (or others) could do to help you?

• What could happen to you if you do not have [proposed treatment]?

• Can you say no to [proposed treatment]?

• B. The following are sample questions that could be used to begin to address whether the child is “able to appreciate” the reasonably foreseeable consequences of a decision or lack of decision:

• What could happen to you if you have [proposed treatment]?

• Can [proposed treatment] cause more or other problems? [side effects]

• What could happen to you if you don’t have [proposed treatment]?

• Probe: Could you get sicker/worse if you don’t have [proposed treatment]?

• Can you help me understand why you do or do not want to have [proposed treatment]?