Advocating dignity: death with dignity in the US, 1985-2011

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.