Appendix: Assessments from Coping with Cancer

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1 Appendix: Assessments from Coping with Cancer Primary Independent Variable of Interest (assessed at baseline with medical chart review and confirmed with clinician) 1. What treatments is the patient currently receiving from this hospital? Chemotherapy (specify): Pain management Radiation All of the above Chemotherapy and pain management (specify): Radiation and pain management Other (specify): Main Outcome Measures (assessed after patient death with medical chart review and caregiver interview performed within 1 month of death) 1. Was the patient on a ventilator in the week leading up to his/her death? 1a. If yes, how long prior to death? Days (specify): 2. Was the patient resuscitated in the week leading up to the death? 3. Where did the patient s death take place? Hospital (ICU Unit) Hospital (other) Patient s own home Nursing home or other long-term care facility Inpatient hospice Surrogates home Other home Other In transit to medical facility DK Secondary Outcome Measures (assessed after patient death with medical chart review and caregiver interview performed within 1 month of death) 1. Was inpatient hospice involved in the care of (PATIENT), so that (he/she) stayed in a hospice facility? 1a. If yes, for about how long did (PATIENT) get inpatient hospice care before (his/her) death? Less than one week 1 week to 4 weeks 5 weeks to 8 weeks 9 weeks to 12 weeks More than 12 weeks 1

2 2. Was outpatient hospice involved in the care of (PATIENT), so that a hospice worker cared for (him/her) in the home? 2a. If yes, for about how long did (PATIENT) get outpatient hospice care before (his/her) death? Less than one week 1 week to 4 weeks 5 weeks to 8 weeks 9 weeks to 12 weeks More than 12 weeks Less than one week 3. Do you think that (PLACE OF DEATH) was where (PATIENT) would have most wanted to die? 4. Date of patient s death / / Patient Covariates (assessed at baseline with patient interview) 1. When were you born? Date of Birth: / / 2. Gender Male Female 3. Are you married? Separated REF DK 4. Do you have health insurance coverage now? 5. What was the last grade you completed in school? formal education Elementary School High School College Graduate/Professional Years of Schooling (specify): Refused Don t know 6. What race or ethnicity do you consider yourself to be? White Black Asian- American, Pacific Islander, or Indian Hispanic Other (specify): 2

3 7. What is your religion? Refused Don t know Catholic Protestant Jewish Muslim Other (specify): ne Pentecostal Baptist Refused Don t know McGill Quality of Life Questionnaire Part A 1. Considering all parts of my life physical, emotional, social, spiritual, and financial over the past two (2) days, the quality of my life has been: Very bad Excellent Part B 2a. Which of the following PHYSICAL SYMPTOMS BOTHERED YOU OVER THE PAST TWO DAYS: 2a. Pain 2b. Tiredness 2c. Weakness 2d. Nausea 2e. Vomiting 2f. Lack of appetite 2g. Trouble sleeping 3

4 2h. Shortness of breath 2i. Constipation 2j. Diarrhea 2k. Sweating 2l. Other (specify): 3. Over the past two (2) days, PHYSICAL symptoms: Did not bother me at all Bothered me tremendously 4. Over the past two (2) days, I have felt: Physically terrible Physically well 5. Over the past two (2) days, I have been depressed: t at all Extremely 6. Over the past two (2) days, I have been nervous or worried: t at all Extremely 7. Over the past two (2) days, I felt sad: Never Always 8. Over the past two (2) days, when I thought of the future, I was: t afraid Terrified 9. Over the past two (2) days, my life has been: Utterly meaningless Very purposeful and without purpose and meaningful 10. Over the past two (2) days, when I thought about my whole life, I felt that in achieving life goals I have: Made no progress Progressed to complete whatsoever fulfillment 4

5 11. Over the past two (2) days, when I thought of my life, I felt that my life to this point has been: Completely worthless Very worthwhile 12. Over the past two (2) days, I have felt that I have: control over my life Complete control over my life 13. Over the past two (2) days, I felt good about myself as a person: Completely disagree Completely agree 14. To me, the past two (2) days were: A burden A gift 15. Over the past two (2) days, the world has been: An impersonal, Caring and responsive to unfeeling place my needs 16. Over the past two (2) days, I have felt supported: t at all Completely Treatment Preferences and Planning 1. If your doctor knew how long you had left to live, would you want him or her to tell you? 2. If you could choose, would you prefer 1) a course of treatment that focused on extending life as much as possible, even if it meant more pain and discomfort, or 2) on a plan of care that focused on relieving pain and discomfort as much as possible, even if that meant not living as long? Extend life as much as possible Relieve pain or discomfort as much as possible 3. Would you take chemotherapy and risk side effects such as nausea, eating problems, hair loss, weakness, fatigue, bowel problems, or have to spend more time in the hospital if it would keep you alive 2 Years 1 Year 6 Months 5

6 3 Months 1 Month 1 Week 4. Do you think it would be a bad thing for a person to die in the ICU versus elsewhere (e.g., home, hospital, and hospice)? 5. Do you have a signed, Living Will, or Health Care Proxy, Durable Power of Attorney for health care, all or none? Living Will, Health Care Proxy and/or Durable Power of Attorney, both Neither Don t Know Living Will 6. Have you completed a Do t Resuscitate (DNR) order? 7. How would you describe your current health status: Patient-Physician Communication 1. To what extent do you think your doctor sees you as a whole person? 2. Do you think your doctors here treat you with respect? 3. How much do you respect your doctor? 4. Do you trust your doctors here? Relatively healthy Relatively healthy and terminally ill Seriously ill but not terminally ill Seriously and terminally ill 6

7 5. How comfortable are you asking your doctor questions about your care? Very uncomfortable Fairly uncomfortable Neither comfortable or uncomfortable Fairly comfortable Very comfortable 6. Have you and your doctor discussed any particular wishes you have about the care you would want to receive if you were dying? Coping Style 1. I ve been concentrating my efforts on doing something about the situation I m in. t at all Somewhat Quite a bit A great deal 2. I ve been taking action to try to make the situation better. t at all Somewhat Quite a bit A great deal 3. I ve been getting emotional support from others. t at all Somewhat Quite a bit A great deal 4. I ve been getting comfort and understanding from someone. 5. I ve been giving up trying to deal with it. 6. I ve been giving up the attempt to cope. t at all Somewhat Quite a bit A great deal t at all Somewhat Quite a bit A great deal t at all Somewhat Quite a bit A great deal BRIEF RCOPE (assessed at baseline with patient interview) 1. I ve been looking for a stronger connection with God. t at all Somewhat Quite a bit A great deal 7

8 2. I ve been seeking God s love and care. t at all Somewhat Quite a bit A great deal 3. I ve been wondering whether God has abandoned me. t at all Somewhat Quite a bit A great deal 4. I ve been seeking help from God in letting go of my anger. t at all Somewhat Quite a bit A great deal 5. I ve been feeling that the cancer is God s way of punishing me for my sins and lack of devotion. t at all Somewhat Quite a bit A great deal 6. I ve been trying to see how God might be trying to strengthen me in this situation. t at all Somewhat Quite a bit A great deal 7. I ve been focusing on religion to stop worrying about my problems. 8. I ve been questioning God s love for me. t at all Somewhat Quite a bit A great deal t at all Somewhat Quite a bit A great deal 9. I ve been wondering what I did for God to punish me like this. t at all Somewhat Quite a bit A great deal 10. I ve been trying to put my plans into action together with God. t at all Somewhat Quite a bit A great deal 11. I ve been wondering whether my church has abandoned me. t at all Somewhat Quite a bit A great deal 8

9 12. I ve been thinking that the devil made this happen. 13. I ve been asking for forgiveness for my sins. 14. I ve been questioning the power of God. t at all Somewhat Quite a bit A great deal t at all Somewhat Quite a bit A great deal t at all Somewhat Quite a bit A great deal Cancer Type, Treatment, and Performance Status (assessed at baseline with medical chart review and confirmed with clinician) 1. What is the patient s primary cancer? Lung (small cell) Lung (non-small cell) Pancreatic Gall bladder Colon Brain Stomach Esophageal Other (specify): 2. Is patient on a drug trial? 2a. If yes, what phase drug trial (specify): 3. Karnofsky Performance Score The patient has no symptoms, carries out all normal activities The patient has minor signs/symptoms, but is able to carry out his or her normal activities - 90 The patient demonstrates some signs/symptoms and requires some effort to carry out normal activities - 80 The patient is able to care for self, but is unable to do his or her normal activities or active work The patient is able to care for self, but requires occasional assistance - 60 The patient requires medical care and much assistance with self care - 50 The patient is disabled and requires special care and assistance - 40 The patient is severely disabled and hospitalization is indicated; death is not imminent - 30 The patient is very ill with hospitalization and active life-support treatment necessary - 20 The patient is moribund with fatal process proceeding rapidly - 10 Dead - 0 9

10 4. ECOG Score 5. Charlson Index of Comorbidity Assigned weights for each condition rmal activity; asymptomatic - 0 Symptomatic; fully ambulatory - 1 Symptomatic; in bed <50% of time - 2 Symptomatic; in bed >50 of time; not bedridden % bedridden - 4 Dead - 5 Condition 1 Myocardial Infarction Congestive failure Peripheral vascular disease Cerebrovascular Dementia Chronic pulmonary disease Connective tissue disease Ulcer disease Mild liver disease Diabetes 2 Hemiplegia Moderate or severe renal disease Diabetes with end organ damage Any tumor Leukemia Lymphoma 3 Moderate or severe liver disease 6 Metastatic solid tumor AIDS 10

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