Findings
Ethics Theme Findings
1. Defining the term "vulnerability."
- This term is used differently by consumers than it is predominantly in the literature and by service providers. Consumers view this as a disempowering term - people are vulnerable because they exist with extreme social disadvantages
- Health care settings can increase vulnerability if people with disabilities can’t self-advocate or don’t have another advocate present.
- People are vulnerable when their capacity is underestimated - persons with disabilities are declared by others as unable to make decisions but in fact may be able to do so.
- What principles should guide the treatment of people experiencing vulnerability when they are recipients/consumers of healthcare?
- Vulnerable = higher risk for abuse, including the offering of untenable options
- Visibility is an anti-dote to vulnerability (a tool for shifting ethical environments)
2. Defining the term "end-of-life"
- Traditional definition
- Circular logic driven definition
- Self-declared
- Culturally contextualized
3. Ethics and the educating of physicians
- The "hidden curriculum" that promotes the medicalization of end-of-life by confining the decision to a medical, rather than an ethical or social, problem.
- Lack of training re: social model of disability and precepts of independent living.
- Lack of comprehensive ethics training concerning the interests of marginalized social groups.
4. Problems with Advance Directives
- Challenges with AD as instruments because of risk of being inappropriately interpreted by the writer, the proxy &/or the physician at time of medical decision-making.
- People are not informed about the limitations and what they’re agreeing to when they sign an AD
- Ethicists argue for proxy relationships or decision-making tools that provide a means for people’s narratives rather than ADs – this gives us impetus to develop such a tool after careful consultation with focus groups, etc.
5. Ethics and end-of-life decision-making
- What ethics govern substitute decision-makers who are making decisions for people who have never been deemed as capable?
- Ethical onus to provide persons with verbal difficulties the opportunities to fully express their wishes.
- Gloomy medical trajectories impede balanced end-of-life decisions. This increases when values are informed by certain understandings of sickness, wellness, and end-of-life.
- End-of-life decision-making is very difficult for persons estranged from their families of origin who re-enter a patient’s life in the final stages. This can require intense advocacy to support patient.
6. Ethics and the roles of informal care providers
- Lack of clarity regarding family/support circle member roles in the withholding/withdrawing of treatment.
- Lack of clarity as to their level of comfort in terms of their own conscience.
- Lack of clarity or capacity when acting in the role of advocate.
7. Ethics and the effects legislation, protocols, practices, court rulings, and policies have on persons with disabilities
- Gröningen Protocol
- Euthanasia cases (Latimer, Schiavo)
- Research experimentation on patients without their consent
- Decision-making tools (advanced directives, values checklists)
- Right-to-die cases (Bouvier, Rodriguez, Kevorkian)
- Assisted Suicide as a constitutional right
- Statutes that expand powers of guardians to make decisions to withhold/withdraw treatment
- Incidences/cases of unwanted placement in nursing homes
- Consumer actions demanding equal protection under the law
- Polarized lines maintained from 1970’s abortion debate
8. Ethics and public confusion
- Media as information sources
- Able-ist perspectives as information source
- No informed public policy debate
- Persons with disabilities seen as "collateral damage" in end-of-life discussions
Ethics Theme Products
One of the most frightening things to consider is a situation where you may be hurt or ill and you are unable to communicate. There are ways to plan for this ahead of time, and part of the work done by the Vulnerable Persons New Emerging Team (VP-NET) Ethics research was to find effective ways people can make their wishes known if they become unable to speak for themselves. Our findings overwhelmingly support the practice of naming legal healthcare proxies to represent people who cannot participate in making their own healthcare decisions. This document is extracted from a larger chapter in the Decision-Making Guidebook (formerly Will to Live Workbook) that is in the process of revision as part of the Ethics Theme’s research.
Download The Role of the Health Care Proxy
Policy Theme Findings
The Policy Theme of the VP-Net Research Project has published some of their preliminary findings in five easy-to-read fact sheets that you can download here.
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