Ethics 12.3

Class Outline and Overview

  • Introduction to the session

    • Discussion of ice conditions and personal anecdotes

    • Importance of being present and engaged in class and breakout sessions

  • Course specifics

    • Focus on vulnerable patient populations:

    • Pediatrics (major focus)

    • Other groups: individuals with diminished capacity, prisoners, and geriatric patients

    • Upcoming assignment details

    • Announcement of last assignment to be completed in class

    • Assignment specifics: minute paper with three prompts, opening at 9:45 and closing at 9:55

    • Assurance of no final exam in the course

  • Ethical principles guiding research

    • Discussion of the importance of research in medical ethics

    • Shift in class focus from research to vulnerable patient populations

Vulnerable Patient Populations

  • Definition of vulnerable populations in a healthcare context

    • Includes children, geriatric patients, pregnant individuals, those with mental disabilities, socioeconomically disadvantaged groups, and minorities (e.g., LGBTQ community, refugees, immigrants)

  • Importance of understanding these groups and making ethical considerations

Ethical Principles in Research

  • Overview of informed consent

    • Definition: The process by which a patient agrees to treatment after understanding its risks and benefits

    • Institutional Review Boards (IRBs) involved in the process of approving research proposals involving human subjects

    • Role of pharmacists in IRBs

  • Challenges associated with obtaining consent from vulnerable populations

    • Distinctions made between consent and assent (particularly for pediatrics)

    • Assent: Agreement from a minor or someone lacking full legal capacity, which is not legally required but is encouraged ethically

Understanding Human Rights

  • Exploration of the origins of human rights

    • Mention of the Founding Fathers and the historical context that shaped human rights in the U.S.

  • Comparison to the UK's Human Rights Act of 1998 and its principles:

    • Right to life, privacy, freedom from torture, freedom from slavery, fair trial, and freedom from discrimination.

  • Patients' Bill of Rights established with the Affordable Care Act of 2010

    • Ensures patients receive accurate information, the ability to choose providers, access to emergency care, involvement in treatment decisions, and protection of confidentiality (HIPAA)

The Ethics of Emergency Medical Treatment

  • Emergency Medical Treatment and Labor Act of 1986

    • Requirement that individuals receive life-saving medical treatment irrespective of their insurance status or citizenship

    • Legal prohibition against patient dumping—patients cannot be discharged without informed consent unless they're stable

    • Discussion of justice and the financial implications of providing care to uninsured individuals

Vulnerability in Specific Populations

Individuals with Intellectual Disabilities

  • UN Declarations of Rights for Mentally Retarded Persons (1971)

    • First acknowledgment of rights for individuals with cognitive impairments

  • Guardianship issues as adults and the challenges faced when guardians are unavailable

  • Importance of proper healthcare and treatment adaptations for individuals living with Down syndrome or similar conditions

Mental Health and Institutionalized Individuals

  • Historical abuses of patients within mental health institutions

    • Description of mistreatment and misunderstanding in asylums historically

  • Evolution of mental health care in the UK through the Mental Health Act of 1983

    • Definitions of detainment rights, best interests, and mental capacity included in the Mental Capacity Act of 2005

  • Discussion of recent WHO guidelines on mental health human rights

Pediatric Considerations in Consent and Assent

  • Guidelines from the American Academy of Pediatrics (AAP) regarding informed consent in pediatric care

    • Parental/surrogate consent coupled with child assent when appropriate

  • Importance of language and approach in pediatric patient interactions

  • Exceptions for consent based on age, maturity, and legal circumstances such as marriage, military service, and emancipation

Additional Vulnerable Populations

Migrant Workers

  • Health access issues for migrant populations due to fear of deportation or lack of insurance

  • Barriers in transportation and care access affecting health outcomes

  • Recognition of the urgent need for adjustments in healthcare provision to meet the unique needs of migrant families

Prisoner Population

  • Overrepresentation of mental health and substance use disorders in prisoners

  • Healthcare inequities and treatment quality concerns in correctional facilities due to budget constraints

    • Impact of for-profit prisons on the quality of care

  • Ethical dilemmas surrounding rights and healthcare access for incarcerated individuals

Geriatric Population

  • Distinctions between patients with surrogates for decision-making and those without

    • Issues that arise when surrogates are uncontactable

  • Ethical frameworks for making decisions on behalf of those who lack capacity

  • Emerging practices in long-term care facilities for addressing the needs of geriatric patients

Conclusion

  • Brief summary of key points discussed in the class

  • Reminder of the upcoming assignment and continuing commitment to understanding and advocating for vulnerable populations in healthcare

  • Closing remarks on facilitating patient autonomy and rights within healthcare settings

Regarding minors, the concepts of capacity and consent are nuanced. While legal consent for pediatric care typically requires parental or surrogate consent, the American Academy of Pediatrics (AAP) guidelines also emphasize the importance of child assent when appropriate. Assent refers to an agreement from a minor or someone lacking full legal capacity; it is not legally required but is ethically encouraged. Factors like the child's age and maturity, as well as legal circumstances such as marriage, military service, or emancipation, can create exceptions to the standard parental consent requirements.

The mature minor doctrine could apply in circumstances where exceptions for consent based on a minor's age, maturity, and specific legal circumstances are recognized. These legal circumstances include instances such as marriage, military service, and emancipation, which grant minors the capacity to make their own healthcare decisions. The American Academy of Pediatrics (AAP) guidelines, while emphasizing parental consent, also highlight the importance of child assent when appropriate, especially when a minor demonstrates the ability to understand and participate in their treatment decisions.

In Sarah's case, the concepts of capacity and consent are central, particularly regarding pediatric care. Legally, the capacity to provide informed consent for an 11-year-old like Sarah typically rests with her parents, Jeff and Lindy Johnson. They have the legal authority to make healthcare decisions on her behalf, especially since Dr. Rodriguez believes the new medication is crucial for her well-being.

However, the American Academy of Pediatrics (AAP) guidelines emphasize the importance of seeking a child's assent when appropriate. Assent refers to an agreement from a minor or someone lacking full legal capacity; it is not legally required but is ethically encouraged. Sarah's adamant refusal of the injections highlights the need for the healthcare team to engage with her, understand her fears, explain the benefits of the medication in an age-appropriate manner, and try to gain her agreement. While her fear and refusal are significant, they do not legally override her parents' informed consent for a treatment deemed medically necessary.

Regarding the mature minor doctrine, it is generally unlikely to apply to Sarah's scenario. The mature minor doctrine allows minors who demonstrate sufficient understanding and maturity to make their own healthcare decisions, often without parental consent. However, this doctrine typically considers factors like age, maturity, and specific legal circumstances such as marriage, military service, or emancipation. At 11 years old, Sarah is usually considered too young to meet the criteria for the mature minor doctrine to fully grant her autonomous decision-making power, especially when her parents and the medical team recommend a treatment crucial for a chronic illness. While her input and emotional state are vital and should be addressed empathetically by the healthcare team, her fears alone at this age would likely not engage the mature minor doctrine to prevent parental consent for an essential treatment.