A first-of-its-kind study led by the Andrew Young School of Policy Studies examined state- and nationwide policies on end-of-life decision making in U.S. prisons and found significant variability regarding which patients can complete advance care planning documents, how they are granted access to document their end-of-life wishes and who can serve as their surrogate decision-makers.
There is an urgent need for geriatric and end-of-life care in U.S. prisons. The prison population is aging rapidly, and older adults make up the fastest-growing age demographic among incarcerated individuals. The majority of deaths in prison are due to illness, and older adults account for largest percentage of prison deaths.
“During the 1980s and 1990s, ‘tough on crime’ laws produced an increase in very long prison sentences, and as a result we are seeing more people remain in prison into older adulthood,” said Victoria Helmly, a doctoral student in the Department of Criminal Justice and Criminology and the lead author of the study, which was published in the International Journal of Prisoner Health. “In addition, more people are entering prison at an older age.”
According to standards set by the National Commission on Correctional Health Care, incarcerated individuals have the right to make end-of-life care decisions. These advance directives commonly include healthcare power of attorney (in which another individual is empowered to make decisions about their medical care) and “do not resuscitate” (DNR) orders or other directives regarding medical interventions or advanced life support. However, as the study notes, there are multiple barriers to implementing advance care planning in prisons, such as finding a person to serve as a healthcare power of attorney.
The researchers pulled 36 state-level policies as well as policies from the Federal Bureau of Prisons. They found that 22 percent of policies state that advance directive documents are offered when a person first enters the prison facility, regardless of age or health status. (Others indicate that end-of-life documents are discussed during medical exams.) More than a third (38 percent) of policies make no mention of where advance directives are located or when incarcerated individuals should be given the opportunity to complete them.
According to the study, most policies do not state who is eligible to complete advance directives. However, the researchers found notable exceptions. For example, three states (Hawaii, Maine and Massachusetts) only allow those with terminal illness to complete an advance directive.
The policies also differed in their approach to who is empowered to act as a healthcare proxy (i.e. make healthcare decisions on behalf of patients). Eighty percent of policies do not allow other incarcerated persons to serve as healthcare proxies, and 60 percent bar prison staff from serving as proxies. Notably, Georgia is the only state whose policy explicitly allows other incarcerated people to serve as proxies. Many policies also prohibit other incarcerated people (45 percent) or correctional staff or healthcare providers (41 percent) from serving as witnesses to advance directive documentation.
The researchers note that these restrictions warrant further exploration, as they can make it difficult for incarcerated persons to have their end-of-life wishes honored.
“If neither other incarcerated individuals nor prison staff can serve as healthcare proxies, this may leave an incarcerated person without many other options,” said Helmly.
Nearly all (95 percent) policies state that advance care planning documents are kept in the person’s medical record, and nearly half (49 percent) indicate that the documents will be transferred with the individual to a hospital or different correctional facility.
The researchers also found very little discussion of compliance. Just one state policy (Idaho) mentions a review of compliance. No policies defined quality metrics or compliance goals. In fact, some policies specifically stated that portions of advance directives do not have to be implemented.
“I was surprised to learn that some policies state that correctional staff can decline to follow DNR orders if they feel doing so would constitute a ‘security’ threat,” said Helmly. “In addition, the Federal Bureau of Prisons policy states that DNRs should not be followed if the individual is part of a prison’s general population.”
In sum, the findings suggest an important opportunity to develop national guidelines for prisons to standardize their policies in accordance with community standards.
“This would help to ensure that incarcerated people across jurisdictions have the same opportunity to document their end-of-life wishes and increase trust that those wishes will be honored,” said Helmly.
The research was supported by the Aging Research in Criminal Justice Health (ARCH) Network. Co-authors of the study include Marisol Garica at Trinity College, Brie Williams at the University of California–San Francisco and Benjamin A. Howell at Yale University.