Form CMS-10537 Hospice Experience of Care Survey

Appendix A
Hospice Experience of Care Survey

Please answer the questions in this survey about the care this patient received from this hospice:

[NAME OF HOSPICE LABEL GOES HERE]

All of the questions in the survey will ask about experience with this hospice.

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SURVEY INSTRUCTIONS
•

Please give this survey to the person in your household who knows the most about the
hospice care received by the person listed on the survey cover letter.

•

Answer all the questions by checking the box to the left of your answer.

•

Some questions include an answer to choose if the question does not apply to you.

•

You are sometimes told to skip over some questions in this survey. When this happens
you will see an arrow with a note that tells you what question to answer next, like this:
Yes

If Yes, go to Question 1.

No

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THE HOSPICE PATIENT
1. How are you related to the person listed on the survey cover letter?
My spouse or partner
My parent
My mother-in-law or father-in-law
My grandparent
My aunt or uncle
My sister or brother
My child
My friend
Other (please print): ________________________
2. For this survey, the phrase “family member” refers to the person listed on the survey
cover. In what locations did your family member received care from this hospice?
Mark one or more
Home
Assisted living facility
Nursing home
Hospital
Hospice facility / hospice house
Other (please print): ________________________

YOUR ROLE
3. While your family member was in hospice care, how often did you take part in or
oversee care for him or her?
Never

If Never, please go to Question 41.

Sometimes
Usually
Always

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YOUR FAMILY MEMBER’S HOSPICE CARE
As you answer the rest of the questions in this survey, please think only about your family
member’s experience with the hospice listed on the survey cover. If your family member
received care from this hospice more than one time, please think only about the last episode
for which they received care.
4. For this survey, the hospice team includes all the nurses, doctors, social workers,
chaplains and other people who provided hospice care to your family member. While
your family member was in hospice care, did you need to contact the hospice team
during evenings, weekends, or holidays for questions or help with his or her care?
Yes
No

If No, please go to Question 6.

5. How often did you get the help you needed from the hospice team during evenings,
weekends, or holidays?
Never
Sometimes
Usually
Always
6. Did your family member receive care from this hospice while he or she was in a
nursing home?
Yes
No

If No, please go to Question 9.

7. While your family member was in hospice care, how often did the nursing home staff
and hospice team work well together to care for your family member?
Never
Sometimes
Usually
Always

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8. While your family member was in hospice care, how often was the information you
were given about your family member by the nursing home staff different from the
information you were given by the hospice team?
Never
Sometimes
Usually
Always
9. While your family member was in hospice care, how often did the hospice team tell
you when they would arrive to care for your family member?
Never
Sometimes
Usually
Always
10. While your family member was in hospice care, when you or your family member
asked for help from the hospice team, how often did you get help as soon as you needed
it?
Never
Sometimes
Usually
Always
11. While your family member was in hospice care, how often did the hospice team explain
things in a way that was easy to understand?
Never
Sometimes
Usually
Always

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12. While your family member was in hospice care, how often did the hospice team keep
you informed about your family member’s condition?
Never
Sometimes
Usually
Always
13. While your family member was in hospice care, how often did anyone from the hospice
team give you confusing or contradictory information about your family member’s
condition or care?
Never
Sometimes
Usually
Always
14. While your family member was in hospice care, how often did the hospice team treat
your family member with dignity and respect?
Never
Sometimes
Usually
Always
15. While your family member was in hospice care, how often did you feel that the hospice
team really cared about your family member?
Never
Sometimes
Usually
Always
16. While your family member was in hospice care, did you talk with the hospice team
about any problems with your family member’s hospice care?
Yes
No

If No, please go to Question 18.

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17. How often did the hospice team listen carefully to you when you talked with them
about problems with your family member’s hospice care?
Never
Sometimes
Usually
Always
18. While your family member was in hospice care, did he or she have any pain?
Yes
No

If No, please go to Question 20.

19. Did your family member get as much help with pain as he or she needed?
Yes, definitely
Yes, somewhat
No
20. While your family member was in hospice care, did he or she receive any pain
medicine?
Yes
No

If No, please go to Question 24.

21. Side effects of pain medicine include things like sleepiness. Did any member of the
hospice team discuss side effects of pain medicine with you or your family member?
Yes, definitely
Yes, somewhat
No
22. Did the hospice team give you enough training about what side effects to watch for
from pain medicine?
Yes, definitely
Yes, somewhat
No

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23. Did the hospice team give you enough training about if and when to give more pain
medicine to your family member?
Yes, definitely
Yes, somewhat
No
I did not need to give pain medicine to my family member
24. While your family member was in hospice care, did your family member ever have
trouble breathing or receive treatment for trouble breathing?
Yes
No

If No, please go to Question 27.

25. How often did your family member get the help he or she needed for trouble breathing?
Never
Sometimes
Usually
Always
26. Did the hospice team give you enough training about how to help your family member
if he or she had trouble breathing?
Yes, definitely
Yes, somewhat
No
I did not need to help my family member with trouble breathing
27. While your family member was in hospice care, did your family member ever have
trouble with constipation?
Yes
No

If No, please go to Question 29.

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28. How often did your family member get the help he or she needed for trouble with
constipation?
Never
Sometimes
Usually
Always
29. While your family member was in hospice care, did he or she need help with feelings
of anxiety or sadness?
Yes
No

If No, please go to Question 31.

30. How often did your family member receive the help he or she needed from the hospice
team for feelings of anxiety or sadness?
Never
Sometimes
Usually
Always
31. While your family member was in hospice care, did he or she ever become restless or
agitated?
Yes
No

If No, please go to Question 33.

32. Did the hospice team give you enough training about what to do if your family member
became restless or agitated?
Yes, definitely
Yes, somewhat
No

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33. Moving your family member includes things like helping him or her turn over in bed,
or get in and out of bed or a wheelchair. Did the hospice team give you enough training
about how to safely move your family member?
Yes, definitely
Yes, somewhat
No
I did not need to move my family member
34. Did the hospice team give you as much information as you wanted about what to expect
while your family member was dying?
Yes, definitely
Yes, somewhat
No

YOUR OWN EXPERIENCE WITH HOSPICE
35. While your family member was in hospice care, how often did the hospice team listen
carefully to you?
Never
Sometimes
Usually
Always
36. Support for religious or spiritual beliefs includes talking, praying, quiet time, or other
ways of meeting your religious or spiritual needs. While your family member was in
hospice care, how much support for your religious and spiritual beliefs did you get from
the hospice team?
Too little
Right amount
Too much
37. While your family member was in hospice care, how much emotional support did you
get from the hospice team?
Too little
Right amount
Too much

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38. In the weeks after your family member died, how much emotional support did you get
from the hospice team?
Too little
Right amount
Too much

OVERALL RATING OF HOSPICE CARE
39. Please answer the following questions about your family member’s care from the
hospice named on the survey cover. Do not include care from other hospices in your
answers.
Using any number from 0 to 10, where 0 is the worst hospice care possible and 10 is the
best hospice care possible, what number would you use to rate your family member’s
hospice care?
0 Worst hospice care possible
1
2
3
4
5
6
7
8
9
10 Best hospice care possible
40. Would you recommend this hospice to your friends and family?
Definitely no
Probably no
Probably yes
Definitely yes

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ABOUT YOUR FAMILY MEMBER
41. What is the highest grade or level of school that your family member completed?
8th grade or less
Some high school but did not graduate
High school graduate or GED
Some college or 2-year degree
4-year college graduate
More than 4-year college degree
Don’t know
42. Was your family member of Spanish, Hispanic or Latino origin or descent?
No, not Spanish/Hispanic/Latino
Yes, Puerto Rican
Yes, Mexican, Mexican American, Chicano
Yes, Cuban
Yes, other Spanish/Hispanic/Latino
43. What was your family member’s race? Please mark one or more.
White
Black or African American
American Indian or Alaska Native
Asian Indian
Chinese
Filipino
Japanese
Korean
Vietnamese
Other Asian
Native Hawaiian
Guamanian or Chamorro
Samoan
Other Pacific Islander

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ABOUT YOU
44. What is your age?
18 to 24
25 to 34
35 to 44
45 to 54
55 to 64
65 to 74
75 to 84
85 or older

45. Are you male or female?
Male
Female
46. What is the highest grade or level of school that you have completed?
8th grade or less
Some high school but did not graduate
High school graduate or GED
Some college or 2-year degree
4-year college graduate
More than 4-year college degree
Don’t know
47. What language do you mainly speak at home?
English
Spanish
Chinese
Some other language:
Please print: ________________________
Thank you.
Please return the completed survey in the postage-paid envelope.

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