Customizing End of Life Care: Believing the Bereaved Antigone Kithas Rachel Jaggi Lisa Howell Anna Beck Presented at the 11th Annual HSR/ PCOR Conference: Partnering for Better Health: Bringing Utah's Patient Voices to Research 2016

1. Customizing End of
Life Care: Believing
the Bereaved
Antigone Kithas, Rachel Jaggi, Lisa Gren, Julie Howell, Anna Beck

2. Introduction
• Caregivers play a critical role in the
end of life experience
• Increased perception of end of life
care as good quality may reduce
caregiver distress
• Customizing the end of life process
may lead to greater satisfaction with
the medical system and decreased
emotional distress for the caregiver

3. Methods
• This study was designed using the Teno Toolkit After-Death Bereaved
Family Member Interview (1)
• Questions are grouped into domains based on 7 key aspects of care, and
responses are grouped into the domains and scored accordingly
• Participants were selected from a list of patients who passed away in the
last quarter of 2014 and had been hospitalized at the University of Utah or
Huntsman Cancer Hospital
• Responses to survey questions are grouped into the most relevant domain
and scored on a scale of 0-1 for “yes/no” answers and a scale of 0-3 for
“always/usually/sometimes/never” answers
• Higher scores correlate with negative responses; lower scores correlate with
positive responses

4. Domains
1. Physical comfort and emotional support
2. Attend to emotional and spiritual needs of the family
3. Support the self-efficacy of the family
4. Inform and promote shared decision making
5. Focus on individual
6. Provide coordination of care
7. Encourage advanced care planning

5. Results
• The domain with the strongest negative score was “Support the efficacy of
the family”, suggesting that this is an area of focus for process redesign
0
0.5
1
1.5
2
2.5
Physical
Comfort and
Emotional
Support
Attend to
Emotional and
Spiritual Needs
of Family
Support the Self-
Efficacy of the
Family
Inform and
Promote Shared
Decision-Making
Focus on
Individual
Provide
Coordination of
Care
Encourage
Advanced Care
Planning
Average Domain Score

6. Results
• Patients cared for at the
University of Utah scored
higher in the domain “Inform
and promote shared decision
making”, indicating that the
location of care was
significant to the perception
of shared decision making by
the caregiver (p = 0.003)
0
0.05
0.1
0.15
0.2
0.25
0.3
0.35
0.4
0.45
U of U Hospital Huntsman
Location of Care vs Domain:
Inform and Promote Shared
Decision Making

7. Results
• Individuals with more than a
high school education scored
higher in the domain “Focus
on the individual”, suggesting
that a higher education
correlates with more
dissatisfaction in
individualized care (p = 0.023)
0
0.05
0.1
0.15
0.2
0.25
0.3
More than
high school
education
High school
or less
Caregiver Education by Domain:
Focus on Individual

8. Results
• Patients with education at or
below a high school level scored
higher in the domain “Provide
coordination of care”,
indicating that with decreasing
levels of education, less
coordination of care is
perceived (p = 0.008)
0
0.2
0.4
0.6
0.8
1
More than
high school
education
High school
or less
Patient Education by Domain:
Provide Coordination of Care

9. Conclusions
• This study identified areas where attention to the end of life process may
improve patient’s and caregiver’s perceptions of the quality of care
• Rapid cycle quality improvement with evaluation will help to further explore
areas of further improvement
• Expanding this study to other populations will help determine if the results
can be replicated, or discover new areas for improvement

10. References
Validation of the Teno Toolkit: http://www.ncbi.nlm.nih.gov/pubmed/11532588