Palliative Care & Hospice Care –Attitude & Usage Trends Among African American and Hispanic Populations

Kristen Cox SantiagoJune 27, 2013

FINDINGS

Challenge in levels of awareness, education, and trust

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

* 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

When should you or your loved one receive palliative care?

Female HS

Male HS

Female AA

Male AA

Total

50%

51%

64%

49%

54%

36%

38%

21%

42%

34%

8%

8%

5%

2%

6%

6%

3%

11%

6%

6%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)

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)

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

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%

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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

* Suggests significant differences at 95 % confidence level

32% 28%

22% 27%

43% 44%

4% 2%At the time of diag-nosis

During serious illness

When illness is considered termi-nalDon'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?

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 sur-rounded by loved ones

Don't know/Not sureHispanic

(N=299)African-American

(N=301)

12

* Suggests significant differences at 95 % confidence level

49% 47%

14% 18%10%

14%

24%20%

3% 1%

Doctor

Nurse, physician as-sistant

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?

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

* Suggests significant differences at 95% confidence level

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

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%

Total AA HS(N=600) (N=301) (N=299)

(A) (B)

(A)

* Suggests significant differences at 90 % confidence level

Important Factors

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

Thank you

Kristen Cox Santiagokcoxsantiago@c-changetogether.org