McMaster University

McMaster University

Transfusion and Hematology Session Facilitator Prompts

Facilitator prompts: (the facilitator may be an invited external or internal expert in the topic; the department’s identified and trained facilitator; a staff member or resident with a special interest in the topic matter.)

Outline of issues to be discussed:

  1. Is informed consent necessary?
  2. What is autonomy?
  3. What is informed consent and how does it support individual autonomy?
  4. What are the limitations and critiques of autonomy and informed consent?
  5. What is relational autonomy?
  6. Can Tracy or her parents be described as an autonomous actor? What would facilitate or limit their autonomy?
  7. How is age relevant to consent?
  8. What relevant legislation exists regarding consent to health care in Canada?
  9. What is the role of a proxy or substitute decision-maker?
  10. How should ethical decisions be made regarding resource allocation?

(The numbers are merely for aid in clarification and need not indicate the order in which the issues are discussed).

Is informed consent necessary?

  • Yes. Informed consent is the best way to show respect for patient autonomy and dignity. In the context of health care it resolves a power imbalance that favours clinicians who are gatekeepers or the resources of care and less vulnerable to the complexities of the health care system.

What is autonomy?

  • The ability to be self-determining and self-governing, and to make competent decisions about oneself on the basis of reason (and emotion.)
  • Permits patients to engage in decision-making about important aspects of their lives, namely health, life and death.
  • Requires respect for the person, and non-interference.

What is informed consent and how does it support individual autonomy?

  • "A voluntary uncoerced decision, made by a sufficiently competent or autonomous person, on the basis of adequate information and deliberation, to accept rather than reject some proposed course of action that will affect him or her." (Gillon, 1986, pg. 113)
  • Consent is relevant to all health care decisions including those regarding treatment, diagnosis, management and research. Implicit in the idea of consent is the possibility of refusal on the part of the patient. Informed consent separates a consultation from an assault.

Key concepts associated with consent are:

  • Information: Patients must be given sufficient material relevant to their case to make an informed decision.
  • Comprehension: It is the responsibility of the carer to ensure that the patient has understood the information. How can this be accomplished?
  • Competence: The ability to make reasonable decisions on the basis of adequate information. The ability to comprehend information. Can all patients give consent? Who can? Who cannot?
  • Voluntariness: Ensures that patients are not treated against their will. Implies the possibility of patient refusal of treatment.
  • Autonomy: Permits self-determination, self-government and control over personal identity.
  • Permission: Consent allows the care provider to perform a procedure, even if it has harmful effects to the patient. But how far does this permission extend?
  • Implied Consent: Can consent be assumed for practical purposes? How far can this extend?
  • Valid consent requires (Downie and Calman p.248):
Information Consent
Disclosure Voluntariness
(How much, when) (Is this ever full)
Comprehension Competence
(Is this ever full) (Borderline cases)

 

Consent may be viewed as:

  • A legally restrictive device to protect the patient.
  • Legal protection for the professional if things go wrong.
  • An extension of the trust between doctor and patient.

What are the limitations and critiques of autonomy and informed consent?

  • Critics of informed consent and personal autonomy rarely reject the ideals altogether. Rather, most are acutely aware of the challenges faced in attempts to apply these ideals given the complexities of real life.
  • Critics usually point to two major failings of traditional conceptions of autonomy.
  • First they criticize it for assuming patients are in a genuinely secure and appropriate condition to enact their autonomy via informed consent:

“Yet protection of autonomy is often at particular risk in health care settings because illness, by its very nature, tends to make patients dependent on the care and goodwill of others; in so doing, it reduces patients’ power to exercise autonomy and it also makes them vulnerable even to outright coercion by those who provide them with needed health services.” (Sherwin pg 69.)

  • The second criticism of traditional conceptions of autonomy asserts it ignores the realities of the complex social structures within which individuals act.

“A striking feature of most bioethical discussion about patient autonomy is their exclusive focus on individual patients; this pattern mirrors medicine’s consistent tendency to approach illness as primarily a problem of particular patients. Similar problems are associated with each discipline. Within the medical tradition, suffering is located and addressed in the individuals who experience it rather than in the social arrangements that may be responsible for causing the problem. Instead of exploring the cultural context that tolerates and even supports practices such as war, pollution, sexual violence, and systemic unemployment – practices that contribute to much of the illness that occupies modern medicine – physicians generally respond to the symptoms troubling particular patients in isolation from the context that produces these conditions.” (Sherwin pg. 75)

What is relational autonomy?

  • Relational autonomy is an alternative to the traditional concept of autonomy that hinges on a new consideration of the self. Instead of conceived of as generic, rational, isolated self who makes self-regarding choices, the self is considered part of a complex web of relationships and social structures.
  • This incorporates the “details of personal experience” lost in the traditional generic conception of the self.
  • “…some feminists have proposed turning to a relational conception of personhood that recognizes the importance of social forces in shaping each person’s identity, development and aspirations.” (Sherwin pg 78).
  • “Selfhood is an ongoing process rather than static or fixed. Relational selves are inherently social beings that are significantly shaped and modified within a web of interconnected (and sometimes conflicting) relationships.” (Sherwin pg 78).
  • “A relational view helps us to understand how the specific social location of patients can affect their autonomy status. It explains why requiring health care providers to disclose relevant information and seek the permission of patients is a necessary, but not a sufficient, criterion for protecting patient autonomy.” (Sherwin pg 82).
  • Relational autonomy takes account of the context in which individuals make choices; the kinds of options truly afforded them and the factors that impact on their choices.

Can Tracy and her parents be described as autonomous actors? What would facilitate or limit his autonomy?

  • Because Tracy is 11years old the status of her capacity to give consent can be questioned.
  • Under most social circumstances Tracy would be considered a legal minor (eg voting, drinking age etc). However in the Canadian health care setting there is no legal age limit for giving consent. Rather we prefer to think about mature minors, who might be able to consent in a limited way.
  • Tracy has not had this health problem for many years so she is unlikely to have a substantial knowledge of the effects of treatment and rejecting treatment. If she had a long standing health condition she may be better informed and his would give her an appearance of being capable of consent.
  • Consider seeking Tracy’s assent and consent from her parents.

Rights of the Parent

  • Parents owe a duty of care to their child. This includes the duty to protect and provide for the child's welfare and best interests.
  • It follows that the parent has rights which support the duty. This includes the right to consent to treatment that is in the child's interest.
  • "Parental rights to determine medical treatment for their children derive from the parental duty to obtain adequate medical care for them." (Brazier, M. Medicine, Patients and the Law, new edition; Penguin Books, London, 1992; pg 346)

Can a parent refuse treatment?

  • Parental rights derive from the duty of care therefore are not "unfettered" but must be within the child's best interests.
  • "Only if the suffering produced by the proposed treatment and consequent prolongation of life outweighs any benefit the child might gain from continued life may his parents lawfully refuse life-saving treatment." (Brazier 345)
  • Any consent or refusal of treatment must be made in the best interests of the child.
  • The child can give consent for treatment without parental involvement if the doctor is satisfied that the child is competent to do so.
  • Parents can veto the decisions made by underage children, but the doctor can still decide to pursue the patient's choice if the child is believed to have the capacity to choose.

How is age relevant to consent?

  • Age may be relevant at both ends of the life spectrum.
  • It is permissible to treat an incapacitated adult if the treatment is in the best interest of the patient. The treatment should be undertaken after seeking the permission of a designated Guardian or nearest family member.
  • Where there is disagreement between medical and familial opinion, an independent consultant can be called in to give a second opinion or mediate the difference.
  • In Canada, there is no legislation that makes it permissible to include an incapacitated adult as a participant in research even with permission from an informed relative or Guardian. However, the Tri-Council Policy Statement that guides ethics in human research in Canada might permit this only if
    • the research is in the best interest of the patient;
    • will help treat the condition which is the cause of the incapacity and not some other condition;
    • or if others with a similar condition may benefit.
    • Moreover the net harms of participating in research must be minimal.
  • Problems with this include the difficulty of defining who qualifies as an incapacitated adult. This is not a problem where unconscious patients are concerned but is more difficult with regard to mental illness.
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