There is significant variability in state- and nationwide policies on end-of-life decision making in United States prisons, a review finds.
The findings show significant variability regarding which incarcerated 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 US 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 the 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,” says Victoria Helmly, a doctoral student in the Georgia State University criminal justice and criminology department. “In addition, more people are entering prison at an older age.”
End-of-life in prison
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 health care 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 health care power of attorney.
The researchers pulled 36 state-level policies as well as policies from the Federal Bureau of Prisons. They found that 22% 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%) 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.
Health care proxies
The policies also differed in their approach to who is empowered to act as a health care proxy (i.e. make health care decisions on behalf of patients). Of the policies, 80% do not allow other incarcerated persons to serve as health care proxies, and 60% 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%) or correctional staff or health care providers (41%) 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 health care proxies, this may leave an incarcerated person without many other options,” says Helmly, lead author of the study in the International Journal of Prisoner Health.
Nearly all (95%) policies state that advance care planning documents are kept in the person’s medical record, and nearly half (49%) indicate that the documents will be transferred with the individual to a hospital or different correctional facility.
But what about compliance?
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,” says 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,” says Helmly.
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