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- All Subjects: Medical Ethics
- Creators: Piemonte, Nicole
Description
Death with Dignity is a concept that initially began as a set of philosophical and ethical principles that sought to define what it meant to die a "good" death that was reasonable to the person experiencing the dying process. This dying process is terminal illness, or any condition that cannot be cured and who's ultimate prognosis is death. Today, Death with Dignity still embodies this, but it is also a set of legal and medical treatments and practices that can be used to aid terminal patients in accomplishing a "good" death. The Death with Dignity treatment options that are chiefly discussed in this study are patient withdrawal of care, patient control of pain medications, and physician-assisted suicide. Physician-assisted suicide is legal in six states in the US excluding Arizona. Considering that Oregon is the first state to pass a Death with Dignity Act and that it is the precedent for all other Acts, this study sought to understand the differences in perception of physician-assisted suicide between Arizona and Oregon in the pursuit of clarifying what barriers are still in place in Arizona to passing a Death with Dignity act. To ask the question of "Do physicians and ethics committee members in Arizona support Death with Dignity in the forms of patient control of pain medications, withdrawal of treatment, and physician-assisted suicide?", a literature review was conducted to determine important national and local perceptions of physician-assisted suicide and Death with Dignity, a 14-question, structured survey was created with the identified concerns, and it was distributed to Arizona health care workers by email and in person. This survey was approved by ASU's Institutional Review Board. This survey found that 100% of participants would vote for a Death with Dignity Act in Arizona if it were on a ballot measure. 76% of participants would aid a terminally-ill and eligible patient in physician-assisted suicide under some circumstances if it were legal in Arizona, and 24% of participants would never aid a patient in physician-assisted suicide. The concerns with physician-assisted suicide that were marked most important by Arizona healthcare workers were that hospice is a better option for the terminally ill and that physician-assisted suicide may be misused with disadvantaged persons. The most important factors of terminal illness that influence views of physician-assisted suicide marked by Arizona healthcare workers were the amount of pain the patient is expected to experience in the end of life, the amount of pain that can be relieved for the patient, the expected quality of life of the patient, and the patient's right to autonomy in healthcare. The significant differences between Oregon and Arizona in this study were the importance of expected mental decline of patient, patient's wishes that differ from family's, and hospice being a better option than suicide in influencing views of physician-assisted suicide. These differences could be deemed hurdles to Death with Dignity legislation in Arizona. This study recommended addressing those differences in public education and medical education and seeking Death with Dignity legislation via ballot measure.
ContributorsCohan, Hailey Elizabeth (Author) / Brian, Jennifer (Thesis director) / Piemonte, Nicole (Committee member) / Stevenson, Christine (Committee member) / School of Life Sciences (Contributor, Contributor) / W. P. Carey School of Business (Contributor) / Barrett, The Honors College (Contributor)
Created2017-05
Description
Advocacy groups work across many aspects of “death with dignity” practice and treatment, and provide insight across multiple aspects of “death with dignity”. This study argues that key advocacy groups in the American death with dignity movement influenced the broader conceptualization of death with dignity in a way that makes patients more able to achieve it. This influence has been a dynamic process across different periods of practice starting the discussion of “death with dignity” in 1985 through today, although this thesis extends only to 2011. The question in this study is how do the three main historical advocacy groups in the US: the Hemlock Society, Compassion in Dying, and Compassion and Choices, conceptualize death with dignity with regards to patient and doctor relationship, legal and policy factors, and medical technologies and protocols? This study found that the Hemlock Society (1980-2005) characterized death with dignity as a terminally ill patient being able to “self-deliver” from suffering via autoeuthanasia regardless of medical community approval or legality. Compassion in Dying (1993-2007) characterized death with dignity as involved advocacy work with terminal patients and their communities to pursue palliative care and hospice up to the point of assisted death. This organization was also involved in the passing of Oregon Death with Dignity Act. Compassion and Choices (2007-present) characterized death with dignity similarly to Compassion in Dying but also advocated for adequate management of pain and suffering symptoms in palliative care to prevent people from desiring death over the illness. Conceptualizing death with dignity is important for understanding why patients want death with dignity and better accommodating their end of life needs when they are suffering with terminal illness.
ContributorsCohan, Hailey Elizabeth (Author) / Ellison, Karin (Thesis advisor) / O'Neil, Erica (Committee member) / Piemonte, Nicole (Committee member) / Arizona State University (Publisher)
Created2019
Description
In 2014, the Centers for Medicare and Medicaid Services (CMS), which oversees the federal Clinical Laboratories Improvement Amendments (CLIA) program, issued guidance that the CLIA requirements apply when researchers seek to return individual-level research findings to study participants or their physician (Centers for Medicare & Medicaid Services, 2014). The present study explores the stance of U.S. Institutional Review Boards (IRBs) toward the applicability of and compliance with the CLIA regulations when studies plan to return individual research results (RIRR). I performed a document content analysis of 73 IRB policies and supporting documents from 30 United States (U.S.) institutions funded for biomedical research by the National Institutes of Health in 2017. Documents analyzed included policies, procedures, guidance, protocol and consent templates, and miscellaneous documents (such as IRB presentations) found to address the RIRR to study participants. I used qualitative content and document analysis to identify themes across institutions related to the CLIA regulations and the RIRR. Basic descriptive statistics were used to represent the data quantitatively. The study found that 96.67% (n=29) of institutions had documents that addressed the RIRR to participants. The majority of the institutions had at least one document that referenced the CLIA regulations when discussing the practice of disclosing participant-specific results [76.67% (n=23)]. The majority of institutions [56.67% (n=17)] indicated that they require compliance with the CLIA regulations for returning individual study findings to participants, while 13.33% (n=4) recommended compliance. The intent of two (6.67%) institutions was vague or unclear, while seven (26.67%) institutions were silent on the topic altogether. Of the 23 institutions that referenced “CLIA” in their documents, 52.17% only mentioned CLIA in a one or two-sentence blurb, providing very little guidance to investigators. The study results provide evidence that the majority of U.S. biomedical institutions require or recommend compliance with CLIA stipulations when investigators intend to return individual research results to study participants. However, the data indicates there is heterogeneity and variation in the quality of the guidance provided.
ContributorsBuchholtz, Stephanie (Author) / Robert, Jason S. (Thesis advisor) / Ellison, Karin D. (Committee member) / Carpten, John D. (Committee member) / Craig, David W. (Committee member) / Marchant, Gary E. (Committee member) / Arizona State University (Publisher)
Created2021