Measuring the Quality of Palliative Care in the Intensive Care Unit. Mitchell Levy MD, J. Randall Curtis MD, MPH, John Luce MD, Judith Nelson JD, MD
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1 ICU Palliative Care Quality Assessment Tool Attending/Housestaff Survey Measuring the Quality of Palliative Care in the Intensive Care Unit Mitchell Levy MD, J. Randall Curtis MD, MPH, John Luce MD, Judith Nelson JD, MD Ellen B. Clarke RN, MS, Ed.D. Project Director Institution Type of Unit Please check one of the following: Housestaff Attending Date / / Month Day Year Attending/Housestaff Survey 1
2 We are interested in understanding palliative care clinical practice, including end-of-life care (EOLC), in your ICU. This survey is organized under seven domains for quality EOLC in the ICU. Some questions ask how often, - for all patients in your ICU - do specific palliative care practices occur. Other questions ask how well do clinicians in your ICU provide aspects of palliative care. In addition, some questions ask specifically about physician or nursing palliative care practices. Circle the number that corresponds to the best answer choice. Communication Within the Team and with Patients and Families For questions 1-4, indicate How often in your ICU do Doctors meet with nurses to clarify goals of patient care? 2. Attending physicians meet at least once with the patient s family? 3., when meeting with families, meet with them in a private conference room? 4. Clinicians identify a family member who will serve as the contact person for the family? For questions 5-8, circle the number that best reflects How well do clinicians in your ICU Address conflicts about goals of care within the clinical team prior to meeting with the patient and/or family? 6. Communicate distressing news to the patient and/or family in a sensitive way? 7. Ensure that the patient and/or family understand the patient s condition? 8. Prepare the patient and/or family for the dying process? Attending/Housestaff Survey 2
3 Patient and Family Centered Decision-Making For questions 9-13, indicate How often do clinicians in your ICU Consider the family as well as the patient as the focus of care? 10. Determine whether the patient has an advance directive? 11. Place the patient s advance directive in the chart? 12. Assess the treatment preferences of the patient who has decision-making ability? 13. Identify the patient s health care proxy or other surrogate decision-maker? For questions 14-17, indicate How often do physicians in your ICU Assess the family s knowledge of the patient s wishes and treatment goals if the patient lacks decision-making ability? 15. Schedule follow-up meetings with the patient and/or family to discuss progress towards the goals of care? 16. Document discussions with the patient and/or family about the re-assessment of the patient s condition and the goals of care? 17. Document discussions with the patient and/or family about cardiopulmonary resuscitation (CPR) status? Attending/Housestaff Survey 3
4 For questions 18-20, circle the number that best reflects How well do physicians in your ICU Assess the family s knowledge of the patient s wishes and treatment goals if the patient lacks decision-making ability? 19. Establish realistic and appropriate goals of care in consultation with the patient and/or family? 20. Identify for the patient and/or family a time frame for the re-assessment of goals of care? For questions 21-24, circle the number that best reflects How well do clinicians in your ICU Help the patient and/or family assess the benefits and burdens of treatment? 22. Ensure that decision-making by the health care team incorporates the patient s and/or family s preferences? 23. Help to resolve conflicts within the family about patient-related issues? 24. Forgo life-sustaining treatments in a way that ensures the patient s and family s preferences are respected? Continuity of Care For questions 25-26, indicate How often do physicians in your ICU Prepare the patient and/or the family for a change of physicians? 26. Consider keeping the patient in the ICU, after the withdrawal of life support, if death is likely to occur in 24 hours? Attending/Housestaff Survey 4
5 For questions 27-28, circle the number that best reflects How well do physicians in your ICU Communicate with colleagues about the patient s and/or family s emotional needs? 28. Ensure that the goals of care are communicated to the next caregivers after transfer out of the ICU? Emotional and Practical Support for Patients and Families For question 29, indicate How often do attending physicians in your ICU 29. Continue to meet with the family of a dying patient throughout the ICU stay? For questions 30-33, indicate How often do clinicians in your ICU Solicit the family s wishes about being present when the patient is dying? 31. Offer the family an opportunity to meet with caregivers after the patient dies? 32. Send a message of condolence to the families of patients who have died? 33. Provide families of patients who have died with bereavement materials (e.g., listings of support groups and funeral homes etc.)? For questions 34-37, circle the number that best reflects How well do clinicians in your ICU Attend to the emotional needs of the families of dying patients? 35. Address the needs of the patient s young children and/or grandchildren? Attending/Housestaff Survey 5
6 36. Maximize privacy for the dying patient and family? 37. Accommodate the patient s and/or family s cultural traditions about end-of-life care? Symptom Management and Comfort Care For questions 38-43, circle the number that best reflects How well do clinicians in your ICU Control pain in dying patients? 39. Control agitation in dying patients? 40. Utilize expert consultants (palliative care, anesthesia, etc.) for the management of refractory symptoms? 41. Reassure families that patients will be comfortable when life-sustaining treatments are withdrawn? 42. Minimize unnecessary tests and procedures (lab work, weights, routine vital signs, etc.) after lifesupport is withdrawn? 43. Minimize noxious stimuli (monitor noises, strong lights, etc.) after life-support is withdrawn? Attending/Housestaff Survey 6
7 Spiritual Support for Patients and Families For question 44, indicate How often do clinicians in your ICU Offer a pastoral care representative to dying patients and their families? For question 45, circle the number that best reflects How well do clinicians in your ICU Assess the spiritual/religious needs of the patient and family? Emotional and Organizational Support for ICU Clinicians For questions 46-51, circle the number that best reflects How well do clinicians in your ICU Provide emotional support for clinicians caring for dying patients? 47. Provide education about palliative care? 48. Provide nursing leadership regarding palliative care? 49. Provide physician leadership regarding palliative care? 50. Incorporate discussion of palliative care in patient care rounds? 51. Incorporate palliative care competencies into routine clinical performance evaluations? Attending/Housestaff Survey 7
8 Overall Assessment of the Quality of Palliative Care Provided by and in Your ICU In this section (questions 52-61), we ask you to give separate responses about the overall quality of medical and nursing palliative care practices. We ask here, How well do physicians and How well do nurses in your ICU provide palliative care within each of the seven end-of-life care (EOLC) domains? Please choose a response for all questions. Communication Within the Team and with Patients and Families 52. Communication with members of the clinical team to clarify goals of care 53. Communication with patients and families about goals of care and treatment Patient and Family Centered Decision Making 54. Eliciting and respecting patient s and/or family s preferences regarding goals of care and treatment Attending/Housestaff Survey 8
9 Continuity of Care 55. Communication with colleagues about the patient s and/or family s emotional needs 56. Communication of the goals of care to the next caregivers Emotional and Practical Support for Patients and Families 57. Attention to the emotional and practical needs of dying patients and their families Symptom Management and Comfort Care 58. Management of symptoms and provision of comfort care Attending/Housestaff Survey 9
10 Spiritual Support for Patients and Families 59. Assessment of the spiritual/religious needs of the patient and family Emotional and Organizational Support for ICU Clinicians 60. Provision of emotional support for clinicians caring for dying patients 61. Provision of education about palliative care Attending/Housestaff Survey 10
11 Please add any additional comments in the space below which you think would be useful for us to consider about the content and/or the format of this survey. Thank you for taking the time to complete this survey. We know that your time is important and that there are many demands on you. Your input is essential to on-going efforts to improve palliative care in the ICU. Attending/Housestaff Survey 11
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