Person focused directives for end of life care in long term care (PFD-LTC)

Abstract

Dementias are age-related, neurodegenerative diseases, the cases of which are expected to rise exponentially as the population ages. To date there is no known cure or intervention that appreciably slows the progression of disease. One in ten Ontarians aged 65 and older is currently living with a dementia, and many of them will move into long term care (LTC) as the disease progresses. Advance care planning (ACP) can extend a person’s wishes concerning health care decisions in the event they lose capacity. ACP is especially relevant for LTC residents with dementia because of the resulting cognitive decline, poor health outcomes, and eventual loss of the ability to communicate. To meet its intended goals, ACP needs to be informed and documented using unambiguous language. ACP documentation too often does not meet this standard, and can vary considerably between facilities. LTC residents dying with dementia may be particularly vulnerable to not having their wishes known or honoured. Little is known about how variability in ACP documentation can affect patient care at the end of life (EOL), or whether the presence or absence of dementia presents an added risk for having insufficient ACP. Study One investigated variability in ACP documentation between facilities and compared existing local documents to best practice principles for documenting ACP. Study Two gathered information on the experiences and perceptions of care providers who work with older adults regarding ACP documents, and their opinions on introducing a common language to ACP documentation across facilities. Study Three utilised generalised linear mixed modeling (GLMM) to investigate whether ACP documentation would equate to differences in the EOL care received by residents of LTC across the province of Ontario, and whether the presence or absence of dementia would play a role in end of life decision making (i.e., place of death). Province-wide data from LTC residents who entered and died in LTC over one census year with a thirteen month follow-up was analysed for relationships between place of death and documentation related to ACP.