Graduation Year

2016

Document Type

Dissertation

Degree

Ph.D.

Degree Name

Doctor of Philosophy (Ph.D.)

Degree Granting Department

School of Aging Studies

Major Professor

Kathryn Hyer, PH.D., MPP

Committee Member

Debra Dobbs, Ph.D.

Committee Member

Alyssa Gamaldo, Ph.D.

Committee Member

Hongdao Meng, Ph.D., MPH

Committee Member

Kevin O’Neil, M.D.

Keywords

Advance care planning, stages of change, transtheoretical model, mixed methods

Abstract

Communication concerning the care one wishes to receive at the end of life (EOL) is central to ensuring that wishes are honored. Many studies have examined doctor-patient or doctor-family EOL communication. However, relatively few studies have focused on the occurrence of EOL care discussions among family members. This is an important topic, as research suggests that advance directives (ADs) are ineffective if patients have not involved surrogate decision-makers, most of whom are family members. This study examined EOL care discussions among family members. It used quantitative and qualitative data from a diverse sample of older adults from West Central Florida collected for the purpose of this examination. The quantitative and qualitative data were analyzed separately and together.

This study employed the Transtheoretical Model, which proposes that individuals are in varying behavioral “stages of change” and that bringing about a behavioral change requires understanding their particular stage and adapting interventions appropriately. Statistical analysis of the quantitative data (N=364) using multinomial logistic regression showed that participants were in distinct stages that were associated with several factors, including family involvement with health care decision-making and communications with doctors. Racial and ethnic differences were not found in controlled analysis, though Hispanics were less likely to be in more advanced EOL care discussion stages in unadjusted analyses.

Several themes were found in qualitative analysis of focus groups (n=36) drawn from the larger sample. Findings suggested that those who engaged in family EOL care discussions were more careful planners overall, more accepting of death, and able to manage complex family dynamics. They also had greater knowledge of EOL matters, largely related to knowledge of loved ones EOL wishes.

The quantitative-qualitative (mixed-methods) study reinforced the role of family relationships in general in whether EOL care discussions occurred. It also highlighted the role of being proactive and having EOL care knowledge. All three studies – the quantitative, qualitative, and mixed methods showed the potential for doctors and other health professionals to help families with EOL care discussions and ACP overall.

Available for download on Thursday, December 14, 2017

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