FAMILY EVALUATION OF HOSPICE CARE
Please answer these questions based on your experience and the patient’s experience while under the care of hospice.
SURVEY INSTRUCTIONS
Please answer each question by choosing the answer that best describes your experience and the patient’s experience while under the care of hospice.
Answer all the questions that apply to you by checking the box to the left of your answer or writing in the information in the space provided.
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 No If No, Go to Question A2 SECTION A B4) Did you want more information than you got about the medicines used to A1) In what month and year did the patient manage the patient’s pain? die? Yes month ______year ______ No
A2) For about how many days or months B5) While under the care of hospice, did the did the patient receive hospice patient have trouble breathing? services? Yes _____ days months No If No, Go to Question B9
A3) As far as you know, did any member of B6) How much help in dealing with his/her the hospice team speak to the patient breathing did the patient receive while or to a family member about the under the care of hospice? patient’s wishes for medical treatment Less than was wanted as he/she was dying? Just the right amount Yes More than patient wanted No B7) Did you or your family receive any A4) At any time while the patient was information from the hospice team about under the care of hospice, did the what was being done to manage the doctor or another hospice team patient’s trouble with breathing? member do anything with respect to Yes end-of-life care that was inconsistent No with the patient’s previously stated Don’t Know wishes? No treatments used for breathing Yes Go to Question B9 No B8) Did you want more information than you SECTION B got about what was being done for the patient’s trouble with breathing? B1) While under the care of hospice, did Yes the patient have pain or take medicine No for pain? Yes B9) While the patient was under the care of No If No, Go to Question B5 hospice, did he/she have any feelings of anxiety or sadness? B2) How much medicine did the patient Yes receive for his/her pain? No If No, Go to Question C1 Less than was wanted Just the right amount B10) How much help in dealing with these More than patient wanted feelings did the patient receive? Less than was wanted B3) Did you or your family receive any Right amount information from the hospice team More help or attention to these about the medicines that were used to feelings than patient wanted manage the patient’s pain? Yes No Don’t Know 1 PleasePlease continuecontinue toto thethe nextnext columncolumn.. PleasePlease continuecontinue toto thethe nextnext pagepage.. SECTION C D5) How often did the hospice team keep you or other family members informed C1) How often were the patient’s personal about the patient’s condition? care needs - such as bathing, Always dressing, and changing bedding - taken care of as well as they should Usually have been by the hospice team? Always Sometimes Usually Sometimes Never Never D6) Did you or your family receive any Hospice team was not needed or information from the hospice team about wanted for personal care what to expect while the patient was dying? C2) How often did the hospice team treat Yes the patient with respect? No Always Usually D7) Would you have wanted more Sometimes information about what to expect while Never the patient was dying? Yes SECTION D No D1) While the patient was under the care D8) How confident were you that you knew of hospice, did you participate in taking what to expect while the patient was care of him/her? dying? Yes Very confident No If No, Go to Question D5 Fairly confident Not confident D2) Did you have enough instruction to do what was needed? D9) How confident were you that you knew Yes what to do at the time of death? No Very confident
D3) How confident did you feel about doing Fairly confident what you needed to do in taking care of the patient? Not confident Very confident Fairly confident SECTION E Not confident E1) Did any member of the hospice team D4) How confident were you that you knew talk with you about your religious or as much as you needed to about the spiritual beliefs? medicines being used to manage the Yes patient’s pain, shortness of breath, or No other symptoms? Very confident E2) Did you have as much contact of that Fairly confident kind as you wanted? Not confident Yes No 2 PleasePlease continuecontinue toto thethe nextnext columncolumn.. Please continue to the next page. E3) How much emotional support did the SECTION G hospice team provide to you prior to the patient’s death? G1) Overall, how would you rate the care the Please Less continue than was to thewanted next page. patient received while under the care of Right amount hospice? More attention than was wanted Excellent Very good E4) How much emotional support did the Good hospice team provide to you after the Fair patient’s death? Poor Less than was wanted Right amount G2) How would you rate the way the More attention than was wanted hospice team responded to your needs in the evenings and weekends? E5) How much help did the patient and/or Excellent you receive from volunteers while Very good under the care of hospice? Good Less than wanted Fair Just the right amount Poor More than wanted Never contacted evening or Did not receive volunteer services weekend services
SECTION F G2a) Did the hospice team explain the plan of care to you in a way that you could F1) How often did someone from the understand? hospice team give confusing or Yes contradictory information about the No patient’s medical treatment? Hospice team did not explain plan of Always care to me Usually Sometimes G2b) How often did you agree with changes Never in the plan of care? Always F2) While under the care of hospice, was Usually there always one nurse who was Sometimes identified as being in charge of the Never patient’s overall care? No changes were made to plan of Yes care No G3) Based on the care the patient F3) Was there any problem with hospice received, would you recommend this doctors or nurses not knowing enough hospice to others? about the patient’s medical history to Definitely No provide the best possible care? Probably No Yes Probably Yes No Definitely Yes
3 Please continue to the next column. Please continue to the next page. Please continue to the next column. G4) In your opinion, was the patient H3) Please choose the one disease group Pleasereferred continue to hospice to the too next early, page . at the that best describes the primary illness Please continue to the next column. right time, or too late during the course that caused the patient to be referred to of his/her final illness? hospice. Please choose only one. Too early Go to Question G5 Cancers - all types At the right time Go to Question G5 Heart & circulatory diseases Too late Please explain Lung & breathing diseases Kidney diseases ______ Liver diseases ______ Stroke ______ Dementia or Alzheimer's disease ______ AIDS & other infectious diseases ______ Frailty and decline due to old age ______ Another disease (Please write in) ______H4) What is the highest grade or level of ______school that the patient completed? ______ 8th grade or less ______ Some high school but did not ______graduate ______ High school graduate or GED ______ 1-3 years of college ______ 4-year college graduate ______ More than a 4-year college degree ______H5) Was the patient of Hispanic or Spanish G5) While under the care of hospice, was family background? the patient in a nursing home? Yes Yes No No Go to Question H1 H6) Which of the following best describes G5a) After hospice became involved, would the patient’s race? you say the quality of end-of-life care American Indian or Alaskan Native the patient received: Asian or Pacific Islander Improved Black or African-American Stayed the same White Decreased Another race or multiracial (Please write in) ______ SECTION H
H1) How old was the patient when he/she died? ______years
H2) Was the patient male or female? Male Female
4 Please continue to the next column. Please continue to the next page. Please continue to the next page. SECTION I SECTION J
I1) What is your relationship to the J1) Is there anything else that you would patient? like to tell us about the care provided by Spouse the hospice team? Partner No Child Yes Please explain Parent ______ Sibling ______ Other Relative ______ Friend ______ Other (Please write in) ______I2) How old were you on your last ______birthday? ______years ______I3) Are you male or female? ______ Male Female ______I4) 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 ______ 1-3 years of college ______ 4-year college graduate ______ More than a 4-year college degree ______I5) Are you of Hispanic or Spanish family ______background? ______ Yes ______ No ______I6) Which of the following best describes ______your race? ______ American Indian or Alaskan Native ______ Asian or Pacific Islander ______ Black or African-American ______ White ______ Another race or multiracial (Please ______write in) ______
5 Please continue to the next column. Please continue to the next page. SECTION V
At the time of admission to hospice, we noted V3.a) How often did the patient’s combat that the patient was a Veteran. Please help related stress make him/her us improve the care we provide to Veterans uncomfortable? by answering the following questions. Always
V1) Did someone ask the patient about Usually his/her military service and experiences? (For example, which Sometimes branch of the military he/she served in or his/her dates of service?) Never Yes No Not sure Not sure V3.b) How much help did the patient receive V2) How often did the hospice staff take in dealing with his/her emotions the time to listen to the patient’s stories related to combat related stress? and/or concerns related to his/her Less than was wanted military experience? Just the right amount Always More than patient wanted Usually Not sure Sometimes V4) Would it have been helpful to have Never more information about VA benefits for surviving spouses and Not sure dependents? Patient did not talk to hospice staff surviving spouses and dependents? about his/her military experience Yes V3) Some veterans near the end of life re- No experience the stress and emotions that they had when they were in V5) Would it have been helpful to have combat. Did this happen to the more information about VA burial and patient? memorial benefits? Yes Yes
No Go To Question V4 No
Not sure Go To Question V4 V6) Did the patient receive health care from the VA? Patient did not experience combat Yes, he/she wanted to get care Go To Question V4 from the VA and was eligible No, he/she wanted to get care from the VA but was not eligible
6 No, he/she never tried to get care from the VA I’m not sure THANK YOU VERY MUCH FOR YOUR TIME! PLEASE PUT THIS SURVEY IN THE ENCLOSED ENVELOPE & MAIL IT BACK TO US TODAY.
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