VULNERABLE POPULATIONS

Running Head: VULNERABLE POPULATIONS

Vulnerable Populations: Issues Concerning Informed Consent Pasquale Veleno University of Calgary

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Ethics is the analysis and determination of how people ought to act toward each other when judged against a set of values (Truscott and Crook, p. xix). Ethics are concerned with the motivations and behaviours of human beings toward each other. So, while ethical standards exist as a means of protecting the individual rights and freedoms of each person within society, ethical standards are therefore also concerned with greater social justice and responsibility. They are aspirational in nature, and as such, seek to attain the higher good for the both the individual and society, respectively. As such, psychologists have an ethical responsibility to society as a whole, and particularly to the individual members within society, regardless of culture, race, religion, socioeconomic status, and/or other interpersonal characteristics. Of course, all members within society are not equal, and therefore, are considered vulnerable by way of barriers associated with physical, developmental, mental health or other challenges. Social justice is about ensuring that all people have access to resources and are treated fairly regardless of their status within society (p. 123, Truscott and Crook). Based on a deontological approach, psychologists have special responsibilities to vulnerable persons, since by the very definition of the word "vulnerable" they are predisposed to greater potential for abuse, hardship, and/or inequality. In order to provide equal opportunities therefore, psychologists must seek to assist vulnerable people to overcome and/or compensate for their vulnerabilities, which help ensure that everyone has similar opportunities for success, quality of life, etc., and does not discriminate on the basis of physical/developmental/other limitations. According to the CPA Code of Ethics, psychologists recognize that as individual, family, group, or community vulnerabilities increase, or as the power of persons to control their environment or their lives decreases, psychologists have an increasing responsibility to seek ethical advice and to establish safeguards to protect the rights of the persons involved (p.45). All should be treated fairly, however this doesn't necessarily mean that people

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should be treated equally. Truscott and Crook argue that the ethical requirement of social justice means that "equals must be treated as equals, and unequals must be treated as unequals (p.126)". It could therefore be argued that all people should have equal opportunities to have their needs met, though in order to do so, vulnerable populations in particular, would require increased access to extra resources, increased levels of support, adaptations and modifications, etc. to more closely approach a level of fairness and/or equality. By doing so, society is inherently respecting the rights of vulnerable people, and preserving their dignity. The Canadian Code of Ethics for Psychologists was developed to act as a resource to professionals within the field of psychology for the purposes of guiding individual conduct, meeting responsibilities to clients and society, and to further establish moral principles for practicing psychologists so that the rights and freedoms of all individuals are protected. The CPA Code of Ethics is based on four weighted principles that are meant to help guide decision-making during ethical conflict. It acts as a social contract between the psychologist and society. The four guiding principles of the CPA Code of Ethics include: Principle I: Respect for the Dignity of Persons, Principle II: Responsible Caring, Principle III: Integrity in Relationships, and Principle IV: Responsibility to Society. By adhering to these principles, the psychologist engages in a higher duty of care to society and to the individual members of society. In particular, the psychologist has a higher duty of care for vulnerable populations. This endeavour plays a role in social justice and responsibility. Specifically, the prospect of obtaining informed consent in vulnerable populations can present various challenges and obstacles that render the process burdensome, however, in the interests of social justice and responsibility, psychologists must overcome these inherent challenges in order to best serve those populations in greatest need.

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The Ethical Dilemma: You are a psychologist working with Charles. Charles is a thirty-four year old, moderately developmentally delayed male diagnosed with autism. He has limited expressive language, but can communicate in short, i.e., one or two word, sentences. Charles has had a longstanding history of challenging behaviours, and as a result, his parents accepted an offer for residential placement in a nearby group home, where he has been living for the last twenty years. Since his group home placement, Charles has had numerous clinical professionals provide treatment for various issues related to his areas of need, including behavioural consultation and intervention. His parents have always been consulted when clinical treatment has been offered, and have always provided informed consent on their sons behalf whenever they deemed treatment appropriate. No efforts to seek Charles formal consent prior to treatment were ever pursued in the past. After recently participating in a monthly Rights group provided by the agency that runs the group home where he lives, Charles indicated a desire to discontinue participation in current behavioural programming, despite his parents insistence to the contrary. When informed by support staff that Charles expressed a clear desire to terminate behavioural services, his parents became enraged with the support staff and indicated that their sons diminished mental capacity and limited ability to truly understand the consequences of terminating treatment rendered his decision invalid. They claim that Charles quality of life would suffer if behavioural services were terminated and expressed concern that he would present a danger to himself and others living within the group home. The aforementioned ethical dilemma was analyzed using the CPA ethical decision-making process:

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Step 1. Identification of the Individuals and Groups Potentially Affected by the Decision The primary individuals I see being affected by any decision made include Charles and his parents. Furthermore, the agency staff, the agency, and all other clients and their respective families within the agency could also be affected by the decision made. Lastly, I am indirectly affected by the decision and the discipline of psychology itself is a concern by way of the public trust. Step 2. Identification of Ethically Relevant Issues and Practices, Including the Interests, Rights, and Any Relevant Characteristics of the Individuals and Groups Involved and of the System or Circumstances in Which the Ethical Problem Arose Using the chart that outlines the Code (The Four Ethical Principles with their Respective Values and Standards), I can identify several ethical values that I think are relevant to the aforementioned dilemma: Principle/Value PRINCIPLE I: RESPECT FOR THE DIGNITY OF PERSONS Value: General Respect I.1 Demonstrate appropriate respect for the knowledge, insight, experience, and areas of expertise of others. My Thoughts: Whatever I decide to do, I need to convey respect for Charles, his parents and agency staff in my interactions with them around this issue.

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I.3 Strive to use language that conveys respect for the dignity of persons as much as possible in all written or oral communication. My Thoughts: I must be careful to use language that is respectful of all persons involved in this process, while being straightforward and easy to understand. I must avoid the use of jargon to convey my thoughts. I dont want to confuse the parties involved.

Value: General Rights I.5 Avoid or refuse to participate in practices disrespectful of the legal, civil, or moral rights of others. My Thoughts: I need to do what I can do ensure that Charles rights to consent or refuse treatment are respected. Whatever resolution we come to must include him in the process. I.8 Respect the right of research participants, clients, employees, supervisees, students, trainees, an others to safeguard their own dignity. My Thoughts: I must be sensitive to the notion that Charles dignity may be threatened by this process and eventual outcomes. I have to allow him opportunities to express his wishes and be a part of the resolution process so that he feels empowered and respected. I must also be careful not to judge the parents harshly or fault them for looking after their sons best interests. They probably have no intent to diminish his rights are looking to protect him.

Value: Non-discrimination I.9 Not practice, condone, facilitate, or collaborate with any form of unjust discrimination.

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My Thoughts: I cannot simply continue providing treatment if this individual is clearly indicating his desire to discontinue services. I must take steps to have his competency evaluated and/or include him in the process of brainstorming other ways in which to best meet his needs and that of the agency. Charles must provide ongoing consent to treatment and must be a willing participant in achieving therapeutic goals for intervention to be successful and for his dignity and autonomy to be respected. I.10 Act to correct practices that are unjustly discriminatory. My Thoughts: If I discover that the agency has not made formal attempts with Charles and other clients to ascertain competency in favour of doing what is most convenient, such as simply seeking consent from legal guardians, then I must take steps to correct this error in practice so that the agency no longer discriminates against their own developmentally delayed or otherwise vulnerable clients.

Value: Fair treatment/due process I.12 Work and act in a spirit of fair treatment to others. My Thoughts: I need to be concerned about fair practices as it pertains to Charles and all other clients within this agency. Are their rights to consent to treatment being respected? Are they being taken advantage of because of their vulnerabilities? Many of the clients within this agency do not have the expressive language skills to communicate their thoughts, however many clients do have the capacity to understand their individual rights and freedoms.

Value: Informed consent

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I.16 Seek as full and active participation as possible from others in decisions that affect them, respecting and integrating as much as possible their opinions and wishes. My Thoughts: It is Best Practice to involve clients in the decision-making process while integrating their opinions and goals when developing program plans. Im not sure how much this has been done in the past within this organization, so this is the crux of the ethical dilemma with Charles and his supporting agency. I.17 Recognize that informed consent is the result of a process of reaching an agreement to work collaboratively, rather than of simply having a consent form signed. My Thoughts: While Charles may or may not eventually consent to treatment, I cannot take this consent for granted and assume that it is ongoing. I have to ensure that Charles understands his right to discontinue services at any time, and I must take measures to keep him informed of program goals, progress, and available options. I.19 Obtain informed consent from all independent and partially dependent persons for any psychological services provided to them except in circumstances of urgent need (e.g., disaster or other crisis). My Thoughts: While I must respect the rights and wishes of the decision-maker as it relates to ongoing treatment, I must convey the message that behavioural interventions may be necessary in specific situations, regardless whether consent is obtained. If Charles safety or the safety of staff or peers is compromised due to a crisis situation involving outburst behaviour, staff must take appropriate action to ensure client safety first and foremost. I.23 Provide, in obtaining informed consent, as much information as reasonable or prudent persons would want to know before making a decision or consenting to the activity. The psychologist would relay this information in language that the persons understand (including providing

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translation into another language, if necessary) and would take whatever reasonable steps are needed to ensure that the information was, in fact, understood. My Thoughts: Considering Charless intellectual delay and processing deficits, I may need to use a multimodal method of conveying information to him so that we can facilitate his understanding of information. This may include the use of visual symbols and other types of prompts. I.24 Ensure, in the process of obtaining informed consent, that at least the following points are understood: purpose and nature of the activity; mutual responsibilities; confidentiality protections and limitations; likely benefits and risks; alternatives; the likely consequences of non-action; the option to refuse or withdraw at any time, without prejudice; over what period of time the consent applies; and, how to rescind consent if desired. My Thoughts: It is important that I convey the role of the psychologist, the agency, support staff, parents, and client in the treatment process. Furthermore, I must be sure to convey the potential risks and benefits of accepting or refusing treatment; how to terminate services, if desired, and any answer any other questions that Charles or the family may have in order to ensure consent is fully informed, while remaining neutral throughout this process so as to avoid placing any undue pressure on the decision maker.

Value: Freedom of consent I.27 Take all reasonable steps to ensure that consent is not given under conditions of coercion, under pressure, or undue reward. My Thoughts: While my belief is that it is in Charles best interests to continue with services, I must be careful to present information in a neutral fashion, thereby limiting my influence in the decision-making process. Furthermore, I need to be careful to ensure that the decision-making

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process is free from any outside pressures. The decision-maker must feel no pressure or coercion to make a particular decision. I.30 Respect the right of persons to discontinue participation or service at any time, and be responsive to non-verbal indications of a desire to discontinue if a person has difficulty with verbally communicating such a desire (e.g., young children, verbally disabled persons) or, due to culture, is unlikely to communicate such a desire orally. My Thoughts: It is important for me to be aware of Charles limited expressive language skills. I must look for other ways in which Charles communicates with me and seek to clarify my interpretation of his messages to me. I may have to incorporate functional communication training as a clinical goal.

Value: Protections for vulnerable persons I.33 Seek to use methods that maximize the understanding and ability to consent of persons of diminished capacity to give informed consent, and that reduce the need for a substitute decision maker. My Thoughts: I have to consider Charles receptive language skills and processing strengths in order to present information to him in a way that he understands. This may take some time and effort on my part, however it is my duty to do my best to ensure that he understands his options related to treatment, goals, procedures, rights and expectations. I.34 Carry out informed consent processes with those persons who are legally responsible or appointed to give informed consent on behalf of persons not competent to consent on their own behalf, seeking to ensure respect for any previously expressed preferences of persons not competent to consent.

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My Thoughts: At this point, we are unsure who the legal decision maker is, so it would be prudent to include his parents in the decision-making process until this issue is resolved. I.35 Seek willing and adequately informed participation from any person of diminished capacity to give informed consent, and proceed without this assent only if the service or research activity is considered to be of direct benefit to that person. My Thoughts: This standard presents an interesting dilemma to me. His parents believe that it is in Charles best interests to continue receiving behavioural treatment, and I agree with this notion. Therefore, should I proceed with treatment even if Charles is deemed competent to make this decision and refuses further intervention? I know that behavioural intervention will likely improve his quality of life and increase the chances that he can remain at his current group home. This is definitely of direct benefit to him.

Value: Extended responsibility I.46 Encourage others, in a manner consistent with this Code, to respect the dignity of persons and to expect respect for their own dignity.

PRINCIPLE II: RESPONSIBLE CARING Value: General caring II.1 Protect and promote the welfare of clients, research participants, employees, supervisees, students, trainees, colleagues, and others. My Thoughts: I need to be concerned about protecting the welfare of my client, Charles, his parents, and the agency. The problem I am facing is that their interests seem to be in conflict. Can I care responsibly for all parties involved?

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Step 3. Consideration of How Personal Biases, Stresses, or Self-interest Might Influence the Development of or Choice Between Courses of Action My initial reaction was disappointment, concern, anger and guilt. I felt disappointment with the agency for not making greater efforts in the past to include Charles in the process of informed consent despite being of the age of majority and being in their care for over twenty years. I also felt concern for the rights of Charles and all other clients receiving services under the auspices of the agency in question. Specifically, my concerns relate to the lack of consideration for the rights and wishes of the clients receiving care and treatment; and, the apparent staff apathy concerning client empowerment. Additionally, I felt anger toward the parents and staff involved because of the apparent self-serving manner in which each group participated in the consent process without considering including Charles dignity and inherent worth. However, I also realize that I am sometimes unsympathetic to the stresses of direct care providers, and hold unusually high standards of care as it pertains to the clinical populations I support. I recognize my perfectionist qualities and tend to expect others to have similar views and standards of professionalism and work quality, and as such, I have often been disappointed in others in the past. I value competence and intelligence, and can be self-righteous about the failings of others in this regard. I need to have a better understanding of all the facts and variables affecting this situation so that I can make a rational, intellectual judgement rather than an emotional one. Lastly, I felt guilt about considering that my workload might potentially decrease if I no longer need to provide behavioural services to this individual, who presents several challenges and requires a significant portion of my time to properly support. My current workload is burdensome, and this would provide a modicum of relief in this respect, though I realize that this is probably not in the best interest of the client, and is a somewhat selfish motivation.

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Step 4. Development of Alternative Courses of Action There are several courses of action available. I have outlined the two most salient options. Alternative 1. The first action would involve gathering all parties involved, including Charles, his parents, group home staff, and the psychologist (myself) in a meeting to discuss the benefits and drawbacks associated with the option of continuing or discontinuing behavioural intervention with Charles. This message would be carefully conveyed to Charles in a manner in which all involved could be reasonably assured that Charles fully understood the implications of his informed decision. Charles would then be encouraged to participate in a gentle problem-solving session aimed at meeting his interests, if possible, for the purposes of encouraging his participation in future behavioural intervention, in the absence of any pressure or coercion. This would give Charles a sense of control over his own outcomes, thereby increasing the likelihood of collaboration. From a clinical point of view, it is advantageous to have a motivated client who participates willingly in treatment, since this bodes well for overall treatment gains. His parents would have an opportunity to provide input regarding their wishes, express concerns and ask questions in a non-threatening way, non-coercive environment. Furthermore, steps would be initiated to begin a competency assessment for Charles so that future disagreements concerning treatment decisions could be adequately addressed while respecting Charles rights and freedoms. Finally, the question of the need for policy changes within the agency would be explored. It would be prudent to initiate a review of agency policies and procedures as it pertains to issues of

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consent to treatment. The agency would be encouraged to revise policies to ensure clients rights are respected in this process, and to facilitate greater client empowerment in decisions affecting them directly.

Alternative 2. Arrangements would be made to initiate a competency assessment for Charles. Depending upon the results of assessment, Charles would either be given full authority to be able to make decisions pertaining to his care, or his parents would retain legal guardian status, thereby allowing them the right to make decisions on his behalf. Regardless, the decision-maker would decide the next course of action pertaining to the provision of services to Charles, and this decision would have to be respected. Step 5. Analysis of Likely Short-term, Ongoing and Long-term Risks and Benefits of each Course of Action on the Individual(s)/group(s) Involved or Likely to Be Affected (e.g., Client, Clients Family or Employees, Employing Institution, Students, Research Participants, Colleagues, the Discipline, Society, Self) Alternative 1. Possible Positive Consequences This option involves all stakeholders in the process, while respecting the individual rights of the client (Charles). It also empowers Charles to make a decision regarding his treatment outcomes while involving the family in the process. It preserves the dignity of all involved.

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This option may force the agency to re-evaluate the manner in which consent is obtained, and could lead to clients in care receiving greater individual freedoms and the right of selfdetermination. Charles may independently decide to continue with behavioural intervention, in accordance with the recommendations of his parents, and support staff, and may therefore feel a greater sense of respect from this process and have increased motivation to make positive changes in his life. Possible Negative Consequences If Charles decides to discontinue behavioural treatment, it may lead to a reduced quality of life for him and peers who share the group home with him. He may end up hurting himself or others, which may also increase pressure to have him removed or transferred from the group home or the agency. Charles parents may disagree with his ultimate decision, and may feel slighted that this power was taken away from them. They probably have his best interests at heart, and may question the agencys motivation to thrust powers onto an individual with reduced intellectual capacity. Staff assigned to directly support Charles may require increased training and/or may experience higher levels of stress as a result of having to deal with a greater frequency of challenging behaviours in the absence of a formalized behavioural plan, and this may lead to staff burnout and high turnover rates.

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Alternative 2. Possible Positive Consequences In this specific case, seeking and obtaining a competency assessment would ultimately determine who should retain decision-maker rights, thereby eliminating the likelihood of future conflicts in this regard. Determining competency would likely lead to a quick and long-term resolution to this issue. Possible Negative Consequences By formally recognizing the decision-maker via competency assessment, emotions are likely to run high, and individuals involved may feel threatened by the process. This may cause hard feelings between Charles and his parents, parents and the agency, and Charles and the agency. If Charles is deemed competent, he may make treatment decisions that are shortsighted and not in his best interests, leading to negative consequences in the future. If Charles is not deemed competent, his parents may choose to continue behavioural treatment, against Charles will, leading toward resentment toward his parents and a deterioration in his relationships with staff, including the behaviour therapist. Step 6. Choice of Course of Action after Conscientious Application of Existing Principles, Values, and Standards

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I believe the actions and consequences of the first alternative are most aptly support the values included in Principle I (Respect for the Dignity of Persons) and Principle II (Responsible Caring). Step 7. Action with a Commitment to Assume Responsibility for the Consequences of the Action There are few ethically appropriate resolutions to this problem unless the clients wishes are considered on an ongoing basis, and he becomes a willing participant in treatment. This means that it is integral that Charles feels respected and empowered to be part of the decision-making process in the very least. His wishes must be considered, and despite initial resistance to behavioural intervention, efforts must be made to problem solve this issue so that he can fully understand the benefits and possible consequences of his decision and so that he can be motivated to be part of a successful and appropriate solution. Since I am the psychologist, I must seek to include all players involved while paying particular attention to Charles concerns. I may need to act as mediator in this case to facilitate a successful solution. Step 8. Evaluation of the Results of the Course of Action Despite my intentions and inherent biases, which include the notion that behavioural intervention is likely a necessary component for Charles to thrive in this setting, ultimately success can be evaluated on the basis that Charles rights and freedoms are being respected, regardless of his decision. By including him in the decision-making process, and in ongoing evaluation, Charles is fully participating in informed consent. Even if he is not deemed mentally competent, the idea of including him in all aspects of his care is a worthy endeavour, which preserves his dignity.

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Step 9. Assumption of Responsibility for the Consequences of Action, Including Correction of Negative Consequences, If Any, or Re-engaging in the Decision-making Process If Ethical Issue Is Not Resolved In spite of my best efforts to anticipate and plan ways to maximize positive and minimize negative outcomes, it is not always possible to foresee possible future events. For example, it is possible that Charles parents may become so disenchanted with agency staff and myself over their sudden loss of power and influence in their sons life that they may choose to discharge him from the group home or transfer him to a different agency. Although this is unlikely, under these circumstances it would not be ethical and appropriate to simply allow this to happen without follow-up. The ethical decision-making process might be useful in trying to determine what next steps should be taken in the best interests of Charles and all others involved. Step 10. Appropriate Action, as Warranted and Feasible, to Prevent Future Occurrences of the Dilemma (e.g., Communication and Problem Solving with Colleagues, Changes in Procedures and Practices) In the future, it would be appropriate for me to take more of an active role in ensuring that all individuals I work with be actively involved in all aspects of their programming. Regardless of their intellectual functioning, I should make greater efforts to communicate my role and programming goals with clients and seek out their input as it pertains to their wishes and/or concerns. Also, I need to be aware of the policies and procedures of the agencies that I consult to as it pertains to ascertaining competency and providing informed consent. Some agencies have not undergone formal procedures to declare competency status to their clients, and I need to be sensitive to how decision-makers may react under the circumstances.

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By virtue of the social contract that the field of psychology has with society, psychologists have a moral duty to provide care for all members of society. In particular, psychologists greatest responsibility is to protect the welfare of the most vulnerable. By doing so, psychologists are honouring the very principles upon which the Canadian Code of Ethics is based. While encouraging and facilitating fully informed consent by vulnerable individuals does not adequately encompass all aspects of the psychologists duties to respect the dignity of the individual, provide responsible care, maintain integrity in relationships, and uphold responsibility to society, it certainly begins the process of accomplishing these admirable goals. In so doing, the notion of autonomy, self-determination, and individual dignity is preserved.

References Sinclair, C., & Pettifor, J. (Eds.). (2001) Companion manual to the Canadian code of ethics for psychologists, third edition. Ottawa: Canadian Psychological Association. Truscott, D., & Crook, K.H. (2004). Ethics for the practice of psychology in Canada. Edmonton: The University of Alberta Press.

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Vulnerable populations: How are legal and moral rights respected?

Grading Criteria APA Style - See APA Style Grading Criteria State why the topic is important. Demonstrate knowledge of relevant ethical principles and standards in addressing the topic. Present two actual examples of dilemmas (they will usually involve conflict between principles or between interests of different parties).

Weight (30 marks) 3 marks 3 marks 8 marks 3 marks

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Demonstrate how you would resolved these dilemmas, e.g., how you apply your knowledge and ethical decision-making skills. Describe how your personal values interface with the professional values and whether this presents any dissonance or personal conflict for you. What changes in the dilemmas described could have made it easier, or more difficult, for your personally?

8 marks

5 marks