Background: Decision 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.
Objective: The 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.
Design: Female 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.
Setting: The 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.
Results: Findings 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.
Conclusion: Those 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.
