Form CMS-10475 Hospice Experience Survey - Home Version

Attachment A

Hospice Experience Survey – Home Version (72 items)
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.

According to the Paperwork Reduction Act of 1995, no persons are required to respond to a collection of information unless it displays a
valid OMB control number. The valid OMB control number for this information collection is XXX-XXXX. The time required to
complete this information collection is estimated to average 16 minutes per response, including the time to review instructions, search
existing data resources, gather the data needed, and complete and review the information collection. If you have comments concerning
the accuracy of the time estimate(s) or suggestions for improving this form, please write to: CMS, 7500 Security Boulevard, Attn: PRA
Reports Clearance Officer, Mail Stop C4-26-05, Baltimore, Maryland 21244-1850.

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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.
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

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 letter. Did your family member receive care from the hospice listed on the
survey cover letter?
Yes
No

If No, please stop and return the survey in the envelope provided.

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3. What was the last location in which your family member received care from this
hospice?
Home
Assisted living facility
Nursing home
Hospital
Hospice facility / hospice house
Other

YOUR ROLE
4. 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 stop and return the survey in the envelope provided.

Sometimes
Usually
Always
5. Was your family member’s hospice care your first experience with hospice services for
a close friend or family member?
Yes
No

STARTING HOSPICE CARE
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. Please do not include
hospice volunteers.
6. Did the hospice team explain the kinds of care and services they could give you and
your family member?
Yes, definitely
Yes, somewhat
No

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7. Did your family member begin getting hospice care too early, at the right time, or too
late?
Too early
At the right time
Too late

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 this hospice in the last location in which he or she received
hospice care.
8. 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 your family
member’s care?
Yes
No

If No, please go to Question 10.

9. How often did you get the help you needed from the hospice team during evenings,
weekends, or holidays?
Never
Sometimes
Usually
Always
10. While your family member was in hospice care, how often did the hospice team keep
you informed about when they would arrive to care for your family member?
Never
Sometimes
Usually
Always

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11. 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
12. While your family member was in hospice care, did the hospice team give you and your
family member enough privacy?
Yes, definitely
Yes, somewhat
No
13. While your family member was in hospice care, how often did you have a hard time
speaking with or understanding members of the hospice team because you spoke
different languages?
Never
Sometimes
Usually
Always
14. While your family member was in hospice care, did the hospice team seem informed
and up-to-date about your family member’s condition and care?
Yes, definitely
Yes, somewhat
No

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15. 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
16. 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
17. 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
18. While your family member was in hospice care, how often did the hospice team respect
your needs and preferences?
Never
Sometimes
Usually
Always
19. While your family member was in hospice care, how often did the hospice team spend
enough time with your family member?
Never
Sometimes
Usually
Always
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20. 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
21. 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
22. 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 25.

23. 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
24. How often were problems with your family member’s hospice care resolved as soon as
you needed?
Never
Sometimes
Usually
Always

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25. While your family member was in hospice care, did he or she have any pain?
Yes
No

If No, please go to Question 27.

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

If No, please go to Question 32.

28. Did you get the information you needed from the hospice team about your family
member’s pain medicine?
Yes, definitely
Yes, somewhat
No
29. 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
30. 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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31. 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
32. 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 36.

33. How often did your family member get the help he or she needed for trouble breathing?
Never
Sometimes
Usually
Always
34. How often did you get the information you needed from the hospice team about your
family member’s trouble breathing?
Never
Sometimes
Usually
Always
35. 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
36. 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 38.

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

If No, please go to Question 41.

40. 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
41. 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 43.

42. 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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43. 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
44. While your family member was in hospice care, did any member of the hospice team
discuss your family member’s religious or spiritual beliefs?
Yes
No

If No, please go to Question 46.

45. How often did the hospice team treat your family member’s religious or spiritual beliefs
with respect?
Never
Sometimes
Usually
Always
46. 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

If No, please go to Question 48.

47. Was the information provided in a way that was easy to understand?
Yes, definitely
Yes, somewhat
No

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48. When your family member died, was the hospice team with you, or available as soon as
you needed?
Yes, definitely
Yes, somewhat
No
Did not need the hospice team

SPECIAL MEDICAL EQUIPMENT
49. Special medical equipment includes things like hospital beds, wheelchairs, or oxygen.
While your family member was in hospice care, did your family member need special
medical equipment?
Yes
No

If No, please go to Question 52.

50. Did your family member get the equipment as soon as he or she needed it?
Yes
No
51. Was the equipment picked up in a timely manner when your family member no longer
needed it?
Yes
No

YOUR OWN EXPERIENCE WITH HOSPICE
52. While your family member was in hospice care, how often did the hospice team listen
carefully to you?
Never
Sometimes
Usually
Always

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53. While your family member was in hospice care, how often did the hospice team spend
enough time with you?
Never
Sometimes
Usually
Always
54. While your family member was in hospice care, were your religious or spiritual beliefs
discussed with any member of the hospice team?
Yes
No

If No, please go to Question 57.

55. How often did the hospice team treat your religious or spiritual beliefs with respect?
Never
Sometimes
Usually
Always
56. 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
57. 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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58. 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
Please answer the following questions about your family member’s care from the hospice
named on the cover letter. Do not include care from other hospices in your answers.
59. 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
60. Would you recommend this hospice to your friends and family?
Definitely no
Probably no
Probably yes
Definitely yes

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61. In thinking about your experiences with hospice, was there anything that went
especially well or that you wish had gone differently for you and your family member?
Please tell us about those experiences.
____________________________________
____________________________________
____________________________________
____________________________________
____________________________________
____________________________________
____________________________________
____________________________________

ABOUT YOUR FAMILY MEMBER
62. 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
63. Was your family member of Hispanic, Latino/a or Spanish origin or descent?
Yes
No

If No, please go to Question 65.

64. Which group best describes your family member?
Mexican, Mexican American, Chicano/a
Puerto Rican
Cuban
Another Hispanic, Latino/and, or Spanish Origin

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65. 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

ABOUT YOU
66. 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

67. Are you male or female?
Male
Female

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68. 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
69. Are you of Hispanic, Latino/a, or Spanish origin or descent?
Yes
No

If No, please go to Question 71.

70. Which group best describes you?
Mexican, Mexican American, Chicano
Puerto Rican
Cuban
Another Hispanic, Latino/a, or Spanish Origin

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71. What is your 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
72. 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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