1. Palliative Care & Hospice Care –
Attitude & Usage Trends Among
African American and Hispanic
Populations
Kristen Cox Santiago
June 27, 2013

2. FINDINGS
Challenge in levels of awareness, education, and trust

3. Overview of Palliative Care and
Hospice Care Knowledge and
Wants
Palliative Care Hospice Care
AA HS AA HS
Knowledge 22% 40% 50% 56%
Want 71% 81% 57% 68%

4. 4
* Suggests significant differences at 95% confidence level
Q1. Knowledge of
palliative care
(before hearing a
definition)
Q2. how
likely would
you be to
want
palliative
care?
Q5. It is
important that
patients and their
families be
educated about
palliative care
Q6.
Discussions
with my
doctor/
healthcare
provider
Q7. How
comfortable are
you discussing
or
recommending
palliative care
to a loved one?
Q8. How
comfortable are
you asking your
doctor or
healthcare
provider for
palliative care?
Top 2 (very knowledge/very likely/strongly agree/very comfortable)
African-
American
(N=301)
22% 71% 80% 81% 69% 77%
Hispanic
(N=299)
40% 81% 85% 85% 79% 80%
Total
(N=600)
31% 76% 83% 83% 74% 79%
Overview of Palliative Care
Knowledge/Attitudes

5. When should you or your loved
one receive palliative care?
50%
51%
64%
49%
54%
36%
38%
21%
42%
34%
8%
8%
5%
2%
6%
6%
3%
11%
6%
6%
Female
HS
Male HS
Female
AA
Male AA
Total
Starting at the
beginning of
treatment
When really sick
At the end of life
Don't know/not
sure
(N=132)
(N=169)
(N=156)
(N=143)

6. When should you or your loved
one receive palliative care?
Loved one HS
Self HS
Loved one AA
Self AA
Total
51%
50%
60%
42%
54%
38%
35%
29%
38%
34%
7%
13%
2%
11%
6%
5%
2%
9%
9%
6%
Starting at the beginning of treatment When really sick
At the end of life Don't know/not sure
(N=45)
(N=256)
(N=54)
(N=245)
(N=600)

7. Palliative Care
• Low level of knowledge
• Opportunity to educate about the timing of PC
• Doctor/ caregiver as most trusted source of
information
• People want to receive PC

8. Overview of Palliative Care and
Hospice Care Knowledge and
Wants
Palliative Care Hospice Care
AA HS AA HS
Knowledge 22% 40% 50% 56%
Want 71% 81% 57% 68%

9. Cayenne Global, LLC 2009©
Overview of Hospice Care Knowledge/Attitudes
9
What do you think about hospice care?
* Suggests significant differences at 95% confidence level
Q10. Knowledge of
hospice care
(before hearing a
definition)
Q11. How
likely would
you be to
consider
hospice care?
Q12. Increase
quality of life
Q13. Decrease
length of life
Q15. Patients
receiving
hospice care
should also
have the option
to receive
treatment
Q16. It is
important that
patients and
their families be
educated about
hospice care
Top 2 (very knowledge/very likely/strongly agree/very comfortable)
African-
American
(N=301)
50% 72% 55% 21% 83% 86%
Hispanic
(N=299)
56% 75% 70% 21% 87% 90%
Total
(N=600)
53% 74% 63% 21% 85% 88%

10. 10
* Suggests significant differences at 95 % confidence level
32% 28%
22% 27%
43% 44%
4% 2% At the time of
diagnosis
During serious illness
When illness is
considered terminal
Don't know/not sure
Hispanic
(N=299)
African-American
(N=301)
(C) (D)
* Suggests significant differences at 90 % confidence level
When should discussions about hospice
care take place with seriously ill
patients?

11. Where do people prefer to die?
9% 8%
40% 40%
8% 8%
33% 41%
10% 3%
Hospital
Home
Outside of home in
a hospice setting
In any setting as
long as you're
surrounded by
loved ones
Don't know/Not
sure
Hispanic
(N=299)
African-American
(N=301)

12. 12
* Suggests significant differences at 95 % confidence level
49% 47%
14% 18%
10%
14%
24%
20%
3% 1%
Doctor
Nurse, physician
assistant
Caregiver
Close friend or relative
Don't know/not sure
Hispanic
(N=299)
African-American
(N=301)
* Suggests significant differences at 90 % confidence level
Who would you trust more to
discuss hospice care options
with?

13. 87%
76%
82%
89%
Self cancer Loved one cancer
AA
(N=301)
(N=45) (N=256) (N=54) (N=245)
HS
(N=299)
81%
91%
86%
82%
Below College College & Above
(N=197) (N=103) (N=156) (N=142)
AA
(N=300)
HS
(N=298)
13
87% 87%
80%
86%
Male Female
AA
(N=301)
(N=132) (N=169) (N=156) (N=143)
HS
(N=299)
(A) (B) (C) (D) (E) (F) (G) (H) (I) (J) (K) (L)
Desire for concurrent care

14. 14
* Suggests significant differences at 95% confidence level
58%
70%
75%
75%
78%
79%
79%
84%
86%
89%
88%
88%
59%
63%
73%
78%
77%
84%
84%
84%
87%
87%
89%
90%
58%
66%
74%
76%
78%
82%
82%
84%
87%
88%
88%
89%
Dying at home
Saving an inheritance for my family
Staying active (work, school, hobbies)
Mobility
Trying every therapy possible
Ability to eat
Spiritual peace
Minimizing burden on my family
Minimizing suffering
Emotional well-being
Minimizing pain
Quality time with loved ones
Total AA HS
(N=600) (N=301) (N=299)
(A) (B)
(A)
* Suggests significant differences at 90 % confidence level
Important Factors

15. Hospice Care
• Not discussed early in the process
• Preference to die outside of a hospital
• Misinformation
• 21% of AA and HS believe that Hospice Care will
decrease the length of life
• More AA men than AA women believe HC will
decrease length of life
• Role of doctor/caregiver as key source of
information
• 2/3 of AA trust medical professionals (doctors,
nurses, PAs) the most to discuss hospice options
with

16. Thank you
Kristen Cox Santiago
kcoxsantiago@c-changetogether.org