Patient Version ACP Questionnaire Worksheets

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1 Audit Period #1 (2011) Audit Period #2 (2012) Audit Period #3 (2013) Advance Care Planning Evaluation in Hospitalized Elderly Patients: A multicenter, prospective study The ACCEPT Patient Version ACP Questionnaire Worksheets D D M M M Y Y Date of Patient Interview Please note the inclusion criteria used to qualify the patient for the study: 55 years or older with one or more of the following diagnoses: OR 80 years or older admitted to the hospital from the community for: Chronic obstructive lung disease Congestive heart failure Cirrhosis Cancer Endstage dementia Acute medical condition Acute surgical condition ACP Questionnaire Patient Worksheets 1/ Version: 24Aug2011

2 Section 1: Patient Demographics Age: yrs Sex: Male Female Current Martial Status: ( one) Married or living as married Widowed Never married Divorced or separated; not remarried Last location of living in last month: ( one) (if in hospital, then month prior to hospitalization) Home (or other private dwelling) alone Home (or other private dwelling) with spouse or significant other Home (or other private dwelling) with children or other family Retirement Residence Long Term Care or Nursing Home Rehabilitation Facility Other Location of last residence noted above: ( Rural Urban Postal Code: one) Health Insurance: ( all that apply) National, Provincial or other government health insurance plan Extended health coverage (e.g. Blue cross, Sun life, etc) Private Health Insurance Other (specify) ne Health Literacy (REALM Score): ( correct) (Interviewer give CARD 1 to the respondent.) Allergic Jaundice Anemia Directed Colitis Constipation Fatigue Osteoporosis Total # correct: / 8 Education highest level achieved: ( one) Elementary school or less Some high school High school graduate Some college (including CEGEP)/ trade school College diploma (including DEC)/ trade school Some university University degree Post graduate How important is spirituality or religion in your life?: ( one) Extremely important Very important Somewhat important t very important t at all important Don t know Do you identify with a formal religious group or practice?: ( one) Protestant (includes Anglican, Baptist, United, Methodist) Catholic Jewish Muslim Sikh Other (specify) ne Ethnicity (interviewer assessment): Is the respondent Caucasian? Language Besides English (or French if live in Quebec) do you speak another language on a daily basis?, specify: Home Health Care Does a health care professional come to your home or residential setting to provide health care? ACP Questionnaire Patient Worksheets 2/ Version: 24Aug2011

3 Section 1: Frailty Index Please consider the overall condition of the patient 2 weeks prior to this admission to hospital. How fit or frail was the patient at that time point? Check one response only. If you have trouble deciding between two options, choose the higher functioning level. Description Very Fit (category 1) People who are robust, active, energetic and motivated. These people commonly exercise regularly. They are among the fittest for their age. Well (category 2) No active disease symptoms but less fit than people in category 1. Often, they exercise or are very active occasionally, e.g. seasonally. Well older adults share most attributes of the very fit, except for regular, vigorous exercise. Like them, some may complain of memory symptoms, but without objective deficits. Managing Well (category 3) Medical problems are well controlled, but people in this category are not regularly active beyond routine walking. Those with treated medical problems who exercise are classed in categories 1 or 2. Vulnerable (category 4) Not dependent on others for daily help, but often symptoms limit activities. A common complaint is being slowed up and/ or being tired during the day. Many people in this category rate their health as no better than fair. Memory problems, if present, can begin to affect function (e.g. having to look up familiar recipes, misplacing documents) but usually do not meet dementia criteria. Families often note some withdrawal e.g. needing encouragement to go to social activities. Mildly Frail (category 5) More evident slowing and individuals help needed in high activities of daily living (finances, transportation, heavy housework, medications). Mildly frail people might have difficulty with shopping or walking outside alone, meal preparation, and housework. Often, they will have several illnesses and take multiple medications. This category includes people with mild dementia. Their common symptoms include forgetting the details of a recent event, even though they remember the event itself, asking the same question, or telling the same story several times a day and social withdrawal. Moderately Frail (category 6) Individuals need help with all outside activities and with keeping house. Inside, they often have problems with stairs and need help with bathing and might need minimal assistance (cuing, standby) with dressing. If a memory problem causes the dependency, often recent memory will be very impaired, even though they seemingly can remember their past life events well. Severely Frail (category 7) Completely dependent on others for all or most personal activities of daily living, such as dressing and feeding. Very Severely Frail (category 8) Completely dependent, approaching the end of life. Typically, people in this category could not recover from even a minor illness. ACP Questionnaire Patient Worksheets 3/ Version: 24Aug2011

4 Section 2: Determinants of Decision Making 1. Have you or a family member ever been admitted to an intensive care unit before? 2. In general, how would you rate your health? Excellent Very good Good Fair Poor 3. In general, how would you rate your overall quality of life? Excellent Very good Good Fair Poor 4. Has a doctor ever talked to you about a poor prognosis or indicated in some way that you had a limited time left to live? If yes, what were you told? More that 1 year About 1 year About 6 months Less than 6 months Less than a month Other (specify) If yes, how long ago did this conversation occur? More that 1 year ago Within the last year Within the last 6 months Within the last month Within the last week Within this hospitalization 5. To what extent does your religion (spiritual beliefs) influence your decisions regarding end of life treatments and care? t at all important t very important Somewhat important Very important Extremely important ACP Questionnaire Patient Worksheets 4/ Version: 24Aug2011

5 For the following question, please hand this page to the respondent and ask them to mark the line to indicate their views. 6. The line below represents a person s total lifetime from birth on the far left to death on the far right. Please make a mark on the line where you see yourself at this point in your life. Birth Death Interviewer, measure this line in centimeters (cm) after the interview. Round to the nearest millimeter. cm. 7. As it relates to your overall plan of care, if the situation were to arise in which there was a deterioration of your health, which option, at this point in time, would you prefer? (Interviewer, give the respondent CARD 2 which explains the life sustaining treatments and options.) ( one) Aggressive use of heroic measures and artificial life sustaining treatments including CPR to keep me alive at all costs Full medical care but in the event my heart stops, or my breathing stops, no CPR Doctors will be focused on my comfort and alleviate suffering and not on being kept alive by artificial means or heroic measures such as trying to prolong my life with CPR and other lifesustaining technologies A mix of the above options (e.g. try to fix problems but if not getting better switch to focusing only on my comfort even if it hastens death) Unsure ACP Questionnaire Patient Worksheets 5/ Version: 24Aug2011

6 Section 3: Decisions About Your Health Care Prior to Hospitalization Advance Care Planning refers to the process by which a person thinks about future health care decisions and identifies what his or her wishes are for end of life care. Some people have completed written documents that describe their wishes regarding who will speak on their behalf; the type of treatment they would want ( or not want) to be considered; their wishes for their end of life experience; and the things that are important to them in making significant decisions. Sometimes patients have forms completed by doctors which have instructions regarding care at end of life (such as a DNR or NO CPR form). 1. Have you formally designated someone you trust (eg. Power of Attorney for Health) to represent your wishes concerning medical treatment decisions in the event you are not able to do so? 2. Do you have an advance directive or living will or some other written document describing the medical treatments you would want (or not want) in the event you are unable to communicate for yourself as a result of a life threatening health problem? Unsure If Yes, what type of tool did you use? Select all that apply Goals of Care designation or MOST My Voice documents Respecting Choice Let Me Decide booklet Generic Living will or Advance Directive DNR or DNAR or NO CPR form Other, Please specify: If No, why not? (Interviewer please write first response. If the respondent says I don t know, show them CARD 3 so they can select all that apply from the taxonomy below. ) Taxonomy Select all that apply It is not relevant to me at this time I have not thought about it I have not made the time for it I am not ready to discuss these matters at this time I do not know where to access such documents I don t know which document to use I am not comfortable thinking about or talking about dying I do not think they are important or useful I am confused about their legal status I trust my doctor to make the right decision when the time comes I trust my family to make the right decision when the time comes Other? Please specify ACP Questionnaire Patient Worksheets 6/ Version: 24Aug2011

7 3a) Have you ever considered or thought about what kinds of lifesustaining treatments you would want or not want in the event your physical health deteriorated? By life sustaining treatments, we are referring to the use of cardiopulmonary resuscitation (CPR), breathing machines, dialysis, Intensive Care Unit (ICU) admission, etc. (Interviewer, give the respondent CARD 2 which explains the life sustaining treatments and options.) If No, what are your reasons? (Interviewer please write first response. If the respondent says I don t know, show them CARD 4 so they can select all that apply from the taxonomy below. ) Taxonomy Select all that apply It is not relevant to me at this time I am not ready to think about this I have not made the time for it I am not comfortable thinking about dying I trust my doctor to make the right decision when the time comes I trust my family to make the right decision when the time comes I did not think I had the ability to influence these decisions Other? Please specify If yes, did you discuss these wishes with anyone? If yes, please complete the chart on the next page. ACP Questionnaire Patient Worksheets 7/ Version: 24Aug2011

8 Have you had a discussion? If Yes, How often? If Yes, When was the last time you discussed these preferences with your Do you remember what was the trigger or what precipitated the conversation? (circle all that apply) Location of conversation 1 Once 2 A few time 3 Regularly 1 More than a year ago 2 Within the last year 3 Within the last 6 months 4 Within the last month 5 Within the last week 6 Within this hospitalization 1 Previous personal health crisis or deterioration in health 2 Previous experience with eol treatment involving someone they cared about 3 Doctor brought it up 4 Other, Specify 1 Home 2 Hospital 3 Doctor office or clinic 4 Lawyer office 5 Other i. Family doctor Y N N/A ii. Specialist doctor Y N N/A iii. Other doctor Y N N/A iv. Nurse Y N N/A e. v. Social worker Y N N/A vi. Spiritual care vii. Family member(s) viii. Surrogate Decision Maker Y N N/A Y N N/A Y N N/A ix. Lawyer Y N N/A x. Other specify Y N N/A Interviewer Notes:

9 3b) If they said they did not have a discussion with doctor (question iiii) prior to hospitalization : I note that prior to hospital admission, you have not discussed your wishes concerning the use of CPR and other life sustaining treatments in the event your physical health deteriorated, or you developed a sudden lifethreatening condition with a doctor. What are the reasons for that? (Interviewer please write first response. If the respondent says I don t know, show them CARD 5 so they can select all that apply from the taxonomy below. ) Taxonomy Select all that apply I am not ready to discuss these matters at this time with my doctor I have not made the time for it I am not comfortable talking about dying I trust my doctor to make the right decision when the time comes I trust my partner, family or surrogate decision maker to make the right decision when the time comes The doctor did not seem interested or have the time for it The doctor didn t ask me I have delegated that decision to someone else I did not think I had the ability to influence these decisions Other? (Please specify): 3c) If they said they did not have a discussion with family member or surrogate (question viiviii): I note that prior to hospital admission, you have not discussed your wishes concerning the use of CPR and other life sustaining treatments in the event your physical health deteriorated or you developed a sudden lifethreatening condition with your partner, family or surrogate decision maker. What are your reasons? (Interviewer please write first response. If the respondent says I don t know, show them CARD 6 so they can select all that apply from the taxonomy below. ) Taxonomy Select all that apply I am not ready to discuss these matters at this time with my partner and family I have not made the time for it I am not comfortable talking about dying with my partner and family I trust my doctor to make the right decision when the time comes I trust my partner, family or surrogate decision maker to make the right decision I am afraid of upsetting my partner and family I don t want to be a burden on my partner and family Other? (Please specify): ACP Questionnaire Patient Worksheets 9/ Version: 24Aug2011

10 4. In general, what kind of things make it difficult for you to talk with your doctors and health care professionals prior to hospital admission about your plan of care including discussion about your prognosis and the use of lifesustaining treatments in the event your condition deteriorated? (Interviewer please write first response. If the respondent says I don t know, show them CARD 7 so they can select all that apply from the taxonomy below. ) Taxonomy Select all that apply doctor (GP) I don t know my doctor Doctors are too busy and are unavailable to talk to I don t trust my doctor I don t feel comfortable talking to the Doctor about this topic The Doctor does not seem comfortable talking to me about this topic My diagnosis and prognosis are uncertain I am too sick and tired to talk about this I am worried I won t be able to change my mind on a decision Doctors don t ask me about my wishes related to this matter Doctor doesn t care about me, not compassionate Hearing, and or speech, and or language problems make it difficult to communicate with MDs Can t understand what the doctor is saying This issue is not relevant to me at this time Difficult to find information and forms related to ACP Doctors focus on other problems during a clinic or office visit like ordering tests and meds 5. What kinds of things make it easier for you to talk with your doctors and health care professionals about these same concerns? (Interviewer please write first response. If the respondent says I don t know, show them CARD 8 so they can select all that apply from the taxonomy below. ) Taxonomy Select all that apply Doctor initiates conversation, for example, as part of annual checkup Doctor has good communication skills: listening, convey personal interest, compassion Doctor needs to be honest about prognosis More information available about CPR, palliative care, and other end of life treatment options before patient is too ill Easier access to information about this, for example, online information Family of patients included in conversations related to ACP Encourage patients who wish to discuss this tell doctors their wishes Other team members such as nurses would be easier to talk to about this than physicians ACP Questionnaire Patient Worksheets 10/ Version: 24Aug2011

11 Section 4: Goals of Your Health Care During the Current Hospitalization The following questions concern the treatments you would or would not want the doctors to perform should your condition deteriorate to the point of being life threatening during this hospitalization. For example, some patients may have lifesustaining treatments used in the course of illness whereas others may not. Medical treatments to reduce suffering and provide comfort will be provided to all patients but the use of life sustaining technologies may not be wanted nor appropriate for all patients. Please note that some of these questions may not be applicable to your particular situation as we are interviewing many people who may have more serious health problems than yours. Interviewer please give importance and satisfaction response options card to respondent. Since your admission Yes or No? How important is this care issue to you? 1 Not at all Important 2 Not Very Important 3 Somewhat Important 4 Very Important 5 Extremely Important 6 Not Applicable How satisfied were you with the way this was done? 1 Not at all Satisfied 2 Not Very Satisfied 3 Somewhat Satisfied 4 Very satisfied 5 Completely Satisfied 6 Not Applicable 1. Were you asked if you had prior discussions or written documents about the use of lifesustaining treatments? Y N Has a doctor talked to you about a prognosis or indicated in some way that you had a limited time left to live? By doctor, we include staff physician, consultant and/or any doctor in training that may have been involved in your care. Y N Has a doctor or other member of the health care team provided information about comfort measures to control symptoms such as pain, shortness of breath, anxiety, or depression? 4. Has a doctor or other member of the health care team provided information about supportive care services such as palliative and spiritual care that may be helpful in the event of a lifethreatening illness? 5. Has a doctor asked what is important to you as you consider health care decisions at this stage of your life? 6. Has a doctor talked to you about the benefits and burdens (or risks) of lifesustaining medical treatments? 7. Was a decision made about whether to use or not to use lifesustaining treatments in the event of a lifethreatening illness during this hospital stay? Y N Y N Y N Y N Y N If Yes to question #7, please proceed to answer questions 811. ACP Questionnaire Patient Worksheets 11/ Version: 24Aug2011

12 If Yes to question #7 on the previous page, please proceed to answer questions Who was present during the discussion with the doctor about the use of life sustaining medical treatments? Check all applicable Spouse Surrogate Other family Other 9. What is your understanding of the decision? Respondent may say same as previous question 7 in Section 2 Aggressive use of heroic measures and artificial life sustaining treatments including CPR to keep me alive at all. Full medical care but in the event my heart stops, or my breathing stops, No CPR Doctors will be focused on my comfort and alleviate suffering and not on being kept alive by artificial means or heroic measures A mix of the above options (e.g. try to fix problems but if not getting better switch to focusing only on my comfort even if it hastens death) Unsure 10. Considering the option you prefer, please answer the following questions: a) Do you know enough about your health situation? b) Do you know enough about your expected recovery? c) Do you know which treatment options are available? d) Do you know the benefits and side effects of each option? e) Are you choosing without pressure from others (including doctors)? f) Do you have enough support and advice from others to make a choice? g) Do you feel sure you have made the best treatment decision? 11. Was there anything we could have done differently to improve the process of making a decision about medical treatments to sustain life the event your condition deteriorated? ACP Questionnaire Patient Worksheets 12/ Version: 24Aug2011

13 12. Please rate the importance of each one in your thinking about the use of life sustaining medical treatments as a part of your care. Please circle one answer for each question on a scale of 1 to 10, where 1 in not at all important and 10 is very important. a) How important is that I be comfortable and suffer as little as possible? b) How important is it that I have more time with my family? Not at all important Very important Unsure or Undecided Unsure or Undecided c) How important is it that I live as long as possible? d) How important is it that I avoid being attached to machines and tubes? Unsure or Undecided Unsure or Undecided e) How important is it that I avoid prolonging death? f) How important is a belief that nature should be allowed to take its course? g). How important is belief that life should be preserved? h) How important is it that I respect the wishes of other family members regarding my care? Unsure or Undecided Unsure or Undecided Unsure or Undecided Unsure or Undecided 13. In general, what kind of things make it difficult for you to talk with your doctors and health care professionals in hospital about your plan of care including discussion about your prognosis and the use of lifesustaining treatments in the event your condition deteriorated? (Interviewer please write first response. If the respondent says I don t know, show them CARD 9 so they can select all that apply from the taxonomy below. ) Taxonomy Select all that apply I don t know my doctor Doctors are too busy and are unavailable to talk to I don t trust my doctor I don t feel comfortable talking to the Doctor about this topic The Doctor does not seem comfortable talking to me about this topic My diagnosis and prognosis are uncertain I am too sick and tired to talk about this I am worried I won t be able to change my mind on a decision Emergency room is too busy, and stressful to talk about this Doctors don t ask me about my wishes related to this matter Doctor doesn t care about me, not compassionate Hearing, and/or speech, and/or language problems make it difficult to communicate with doctors I can t understand what the doctor is saying This issue is not relevant to me at this time opportunity to discuss this with family present Difficult to find information and forms related to ACP Doctors focus on other problems during a clinic or office visit like ordering tests and medications ACP Questionnaire Patient Worksheets 13/ Version: 24Aug2011

14 14. What kinds of things make it easier for you to talk with your doctors and health care professionals in hospital about these same concerns? (Interviewer please write first response. If the respondent says I don t know, show them CARD 10 so they can select all that apply from the taxonomy below. ) Taxonomy Select all that apply Doctor initiates conversation Doctor has good communication skills: listening, convey personal interest, compassion Doctor to be honest about prognosis More information available about CPR, palliative care, and other end of life treatment options before a patient is too ill Easier access to information about this (For example, online information) Include family of patients in these conversations Encourage patients who wish to discuss this and convey their wishes Other team members such as nurses would be easier to talk to about this than physicians Schedule family meeting to discuss this issue Have this conversation when patients are stabilized and not in crisis ACP Questionnaire Patient Worksheets 14/ Version: 24Aug2011

15 Section 5: CANHELP The following questions include key aspects of communication that are essential that people with serious, life threatening illnesses need to make informed decisions regarding medical treatments that they want or do not want in the course of their care. Please choose a number between 1 and 5 to indicate how satisfied you are with the following elements of communication and decision making concerning your illness. the higher the number, the more satisfied you are. If you choose option #1 Not at all Satisfied, for example, you will be indicating that this aspect of the care you received did not meet any of your expectations of high quality care. At the other end of the scale, your choice of option #5 Completely Satisfied will indicate that this aspect of the care you received met or exceeded your expectations of quality care. Please note that some questions may not be relevant to your situation, as we are interviewing people who may have more serious health issues than yours. (Interviewer please give the respondent the response option card, CARD 11.) Relationship with Doctors 1. How satisfied are you that you knew the doctor(s) in charge of your care during the past month? t at all t very Somewhat Very Completely 2. How satisfied are you that your doctor(s) took a personal interest in you during the past month? t at all t very Somewhat Very Completely 3. How satisfied are you that your doctor(s) were available when you needed them (by phone or in person) during the past month? t at all t very Somewhat Very Completely 4. How satisfied are you with the level of trust and confidence you had in the doctor(s) who looked after you during the past month? t at all t very Somewhat Very Completely Communication 5. How satisfied are you that the doctor(s) explained things relating to your illness in a straightforward, honest manner during the past month? t at all t very Somewhat Very Completely 6. How satisfied are you that the doctor(s) explained things relating to your illness in a way you could understand during the past month? t at all t very Somewhat Very Completely 7. How satisfied are you that you received consistent information about your condition from all doctors and nurses looking after you during the past month? t at all t very Somewhat Very Completely 8. How satisfied are you that the doctor(s) listened to what you had to say during the past month? t at all t very Somewhat Very Completely 9. How satisfied are you that you received updates about your condition, treatments, test results, etc. in a timely manner during the past month? t at all t very Somewhat Very Completely ACP Questionnaire Patient Worksheets 15/ Version: 24Aug2011

16 Decision Making 10. How satisfied are you with discussions during the past month with your doctor(s) about where you would be cared for (in hospital, at home, or elsewhere) if you were to get worse? t at all t very Somewhat Very Completely 11. How satisfied are you with discussions during the past month with your doctor(s) about the use of life sustaining technologies (for example: CPR or cardiopulmonary resuscitation, breathing machines, dialysis)? t at all t very Somewhat Very Completely NA 12. How satisfied are you that, during the past month, you have come to understand what to expect in the end stage of your illness (for example: in terms of symptoms and comfort measures)? t at all t very Somewhat Very Completely NA 13. How satisfied are you with your role during the past month in decision making regarding your medical care? t at all t very Somewhat Very Completely Role of the Family 14. How satisfied are you with the level of confidence you felt during the past month in the ability of a family member or friend to help you manage your illness? t at all t very Somewhat Very Completely 15. How satisfied are you with discussions during the past month, involving a family member or someone who would make decisions for you, about your wishes for future care in the event you yourself are unable to make those decisions? t at all t very Somewhat Very Completely 16. How satisfied are you that you were able during the past month to talk comfortably about your illness, dying, and death with people you care about? t at all t very Somewhat Very Completely 17. How satisfied are you that your relationships with family members and others you care about were strengthened during the past month? t at all t very Somewhat Very Completely 18. How satisfied are you that during the past month you were not a burden on your family or others you care about? t at all t very Somewhat Very Completely 19. How satisfied are you that you had family or friends to support you when you felt lonely or isolated during the past month? t at all t very Somewhat Very Completely Interviewer Notes: ACP Questionnaire Patient Worksheets 16/ Version: 24Aug2011

17 Section 6: Documentation of Advance Care Plans/Advance Directives in the Hospital Chart at the end of the interview 1a) Does the hospital use a green or blue sleeve or any other strategy to easily localize ACP/AD tools in the medical record? b) If Yes, was a green or blue sleeve (or other tool) on the chart on the day of enrollment? c) If Yes, what was in the green or blue sleeve or other tool? i) Goals of care designation or MOST form ii) DNR order/options for care order iii) ACP tracking record If yes, is there documentation of a discussion recorded on the tracking record? iv) Representation agreement or personal directive v) Advance directive or living will vi) Levels of intervention form vii) My voice work book viii) Other, please specify ACP Questionnaire Patient Worksheets 17/ Version: 24Aug2011

18 2a) Is there any other advance directive, living will, goals of care designation or other end of life care planning tools present on the chart or electronic record? b) If Yes, what was present on the chart or electronic record? i) Goals of care designation or MOST form ii) DNR order/options for care order iii) ACP tracking record If yes, is there documentation of a discussion recorded on the tracking record? iv) Representation agreement or personal directive v) Advance directive or living will vi) Levels of intervention form vii) My voice work book viii) Other, please specify 3. Is there evidence in the chart that some member of the health care team attempted to reach a community care worker about this patients prior expressed wishes? Other Notes:: ACP Questionnaire Patient Worksheets 18/ Version: 24Aug2011

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