• Sheila R Enders, Debora A Paterniti, and Frederick J Meyers.
• Department of Internal Medicine, Division of Hematology-Oncology, University of California, Davis Medical Center, Sacramento, CA 95817, USA. srenders@ucdavis.edu
• J Palliat Med. 2005 Apr 1; 8 (2): 432-9.

BackgroundDecision making about medical treatment, advance care planning and end-of-life care often is limited or influenced by a patient's capacity to read or comprehend crucial information. Ineffective communication between patient and physician, and the complex nature of serious illness and dying also affect these decisions. America's incarcerated have virtually no autonomy in decision making, especially with regard to medical care and treatment. For the nearly 100,000 incarcerated women in the United States, medical issues differ significantly from those of male prisoners. Many women enter prison with chronic illnesses or are diagnosed with such illnesses while in prison. In addition, America's prison population reflects our country's unsolved literacy problems with almost two thirds of aging inmates lacking basic literacy skills. Maintaining a balance between the Eighth Amendment rights of prisoners and their status as wards of the state is a concern for inmates and for those responsible for their care.ObjectiveThe purpose of this study was to identify informational barriers to people making medical care and treatment decisions, particularly those with low literacy. Findings were used to in the development of a tool to assist patients to initiate discussion and become active participants in their own care.DesignFemale inmates of diverse ethnicity and literacy levels were recruited through self-selection from the Central California Women's Facility near Sacramento to participate in focus group discussions. The focus groups were guided by a set of research questions and were facilitated by the first author to identify informational barriers to medical care needs.SettingThe female prison setting was identified as an appropriate setting for the development of a new approach to stimulate effective decision making by introducing basic information on medical care and treatment, advance care planning, and end-of-life care. A total of 113 inmates participated in 16 focus group, each 2 hours in length.ResultsFindings were used to develop a handbook to assist low literacy populations in general, and female inmates in particular, to obtain appropriate medical care and treatment and to make advance care decisions regarding the end of life.ConclusionThose who face chronic, potentially life-limiting illness cannot make meaningful decisions regarding medical care and treatment without having a basic foundation of health information. Acquiring knowledge and improving communication skills reduce stress and vulnerability, assuring individuals of some control over decision making.

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