This review will scope literature relating to advanced directives in the care of incarcerated adults. End of life and death in prison is a common reality for those who are incarcerated. Over 10.2 million people are incarcerated in correctional institutions worldwide.1 The United States has the largest number of incarcerated individuals in the world.1 The number of adults aged 65 and older that are incarcerated in correctional institutions has grown rapidly over the last 10 years.2 Inmates over 50 years of age are considered elderly due to their illness trajectory being more advanced than those in free society.3 Many inmates suffer from one or more chronic conditions.3 These individuals tend to receive substantially less medical care than when not incarcerated and therefore present with additional burden of chronic illness.3 These conditions can be attributed to 89% of deaths in prison.2 As a result, there is a significant need for high-quality palliative and end-of-life care. Advance directives are a critical component in both of these efforts, both for the inmate receiving the care and healthcare professionals providing it.
Advance directives are developed to allow individuals to exercise autonomy as it pertains to end-of-life decision-making.4 In the United States, the Patient Self Determination Act (PSDA) of 1990 mandated that all patients receive information concerning end-of-life decisions and regarding their right to draft advance directives.5,6 There is no differentiation made within the act between patients who live in free society and those who are incarcerated. From an European context, individuals who are incarcerated legally maintain all of their human rights with exception to liberty.7 This includes the right to self-determination concerning what type of health care will be accepted or refused.7 Australian law contains similar language at both the state and the national level.8 This is based on common law and allows individuals to make treatment decisions in advance that will remain binding should they lose their mental capacity.8 In neither case does a legal differentiation exist between patients who are free and those who are incarcerated. In spite of the lack of differentiation, challenges exist in the implementation of advanced directives due to resource constraints, security concerns, litigation concerns and individual interpretation of correctional administrators.
Advance directives are an important part of healthcare planning and delivery in that they provide a pivotal opportunity for inmates to exercise autonomy in deciding what care they will receive and when they no longer desire to pursue curative treatment. This is significant in that trust between inmates and correctional staff and care providers is often lacking.9 This mistrust is fueled by care interventions being chosen and implemented as a result of pressure and coercion from correctional staff rather than the inmate's exercise of autonomy in self-determination.10
Inmates are legally entitled to medical care. However, this is not without cost limitations. The resources available to citizens in the free environment may not be accessible to those who are incarcerated.11 Particular jurisdictions may impose cap limits on expenditures. Inadequate financial resources may serve to threaten the adequacy of basic care delivery and the availability of interventions that are consistent with those specified in the inmate's advance directive.12 This is an important consideration when examining healthcare providers’ experiences of implementing advance directives during the provision of end-of-life care for incarcerated adults.
A preliminary search for existing scoping reviews on the topic was conducted using PubMed, JBI Database of Systematic Reviews and Implementation Reports and Cochrane Database of Systematic Reviews. No existing scoping reviews were revealed in the search.
Interchangeable terms are often used to refer to advance directives which have overlapping meanings, advance directives and living will.
Advance directive is defined as “documents written in advance of serious illness that state your choices for health care, or name, someone to make those choices, if you become unable to make decisions”.13 (p.3)
A living will is defined as a document, which “is one type of advance directive and is a document in which you can stipulate the kind of life-prolonging medical care you want if you become terminally ill, permanently unconscious or in a vegetative state and unable to make your own decisions”.13 (p.4)
Types of participants
This scoping review will consider all studies and expert opinion pieces that focus on advance directives in the care of incarcerated adults. For the purpose of this review, incarcerated adult refers to individuals who are over the age of 18 or sentenced as an adult and legally imprisoned in a correctional facility. Inmates less than 18 years of age or sentenced as juveniles will be excluded, as will those investigating civil psychiatric detention.
This scoping review will consider all research studies and expert opinion pieces that address advance directives in the provision of care of incarcerated adults. These will specifically address:.
- Practices or interventions used with incarcerated adults concerning advanced directives.
- Prisoners’ experiences with advanced directives when receiving care
- Barriers to establishing and implementing advanced directives
- Healthcare providers’ experiences with implementing advanced directives while providing care.
This review will consider studies and expert opinion pieces wherever care is provided for incarcerated adults. These may be in any setting used for the purpose of legal incarceration.
Types of studies
This review will consider quantitative studies, qualitative studies, expert opinion pieces and government policy documents.
Quantitative study designs that will be considered for inclusion are randomized controlled trials, non-randomized controlled trials, quasi-experimental, prospective and retrospective cohort studies, case-control studies and descriptive studies.
Studies yielding qualitative data including, but not limited to, designs such as phenomenology, grounded theory, ethnography, case study and historical research will also be considered for inclusion, as will relevant published opinion of experts and key government policy documents.
The search strategy aims to find both published and unpublished studies over the last 25 years from 1990 to 2015. This timeframe has been selected on the basis of the 1990 United States Congressional implementation of the PSDA. The PSDA requires healthcare facilities to inquire if patients have advanced directives, provide written information on the rights to make treatment decisions, and to make advanced directive forms to patients who do not have one.14 A three-step search strategy will be utilized in this review.
In stage 1, an initial limited search of MEDLINE and CINAHL will be undertaken, followed by an analysis of the text words contained in the title and abstract and of the index terms used to describe the articles. The preliminary keywords to be used in the search for literature are advanced directives, resuscitation orders, inmate, offender, detainee, incarcerate, imprison, incarcerated adults, end-of-life care, correctional facility, correctional settings, jail, jails, prison, prisoner palliative care, terminal care, healthcare professionals, experience, and hospice. In stage 2, the text words contained in the title and abstract of relevant articles, along with the controlled language and the index terms used to describe papers, will then be analyzed to develop keywords for stage 2. A second extensive search will be undertaken of all keywords and index terms identified as relevant to the review across all included databases. In stage 3, references from retrieved articles will then be searched for additional studies for the final stage of the process. The search will seek all published and unpublished studies. Only English language papers will be included in this review due to lack of available translation resources.
The databases to be searched for published material include:
- Cochrane Library
- Criminal Justice Abstracts Full Text
- ProQuest Health and Medical Complete.
The sources to be searched for relevant unpublished material include:
- Google Scholar
- Open Grey
- ProQuest Dissertations and Theses
- Contacting authors, experts and organizations active within the phenomenon of interest to attempt to identify unpublished and ongoing studies.
Referencing software will be used to manage the list of all the articles retrieved and remove duplicate studies. Articles will then be assessed for relevance to the review based on the information provided in the title, abstract and descriptor/MESH terms by two independent reviewers. The full article will be retrieved for all studies that meet the inclusion criteria. Two primary reviewers will examine independently whether the studies conform to the inclusion criteria. If the two reviewers do not agree, a third reviewer will be consulted.
Methods of the review
Assessment of methodological quality
The review to be performed is a scoping review to locate and describe existing evidence in relation to the advance directive in the provision of care for incarcerated adults. Scoping reviews typically do not include a quality assessment of studies.15 No attempt will be made to formally assess the quality of the individual included papers.
A scoping review data extraction instrument was previously developed (Appendix I). However, this may likely be further refined for use at the review stage to include additional relevant information. Some key information that may be charted is described below.
The results will be discussed in narrative form. Findings from descriptive studies, where possible, will be synthesized and presented in a summary table. Narratives and figures will be used where appropriate. The method described by Arksey and O’Malley will be used.16 An overview of the included material will be summarized in tables and figures which map the literature. Literature will be tabulated using the following headings related to research design, geographical location, year of publication, characteristics of the study population and the research outcomes. The results will be collated and summarized in a manner which logically presents the aims or purposes of the reviewed sources, methods applied and results that address the review questions.
The researchers would like to express their thanks for the support provided by University of Southern Indiana College of Nursing and Health Professions and University of South Carolina College of Nursing.
Appendix I: Data extraction instruments
Scoping review instrument
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