End-of-Life Care Focus Groups Questioning Route I. II. III. Welcome A. Introductions: “Good afternoon, and welcome to our discussion of issues in end-of-life care. My name is ___________________, and I am (a Professor at MSU) who is helping Region 9 assess the needs and develop a plan to meet the needs in rural Minnesota for end-of-life care.” B. Overview of the topic: “For the purposes of this discussion, we will be using ‘end-of-life care’ to mean “care for people who are living with lifelimiting conditions or who are dying” (MN State Commission on End of Life Care). We have invited a wide range of people from around the Region who provide end-of-life care as part of their professional activity, as well as family members who have had personal experience with end-oflife care. Tonight we will be discussing your experiences and your opinions about end-of-life care. Please feel free to share your point of view, even if it differs from what others have said.” C. Ground Rules: “Before we begin, let me share some ground rules. You may choose not to answer any question; if it is too painful to share on any of these questions, please pass. But when you do answer, please speak up. We’re tape recording the session because we don’t want to miss any of your comments. Only one person should talk at a time—if several people talk at the same time, the tape will get garbled and we’ll miss your comments. We have also provided you with paper and pencil, to jot down your ideas as we go along. We would like to collect your notes at the end, so please do not put your name on the page. We will be on a first-name basis here tonight, and in our later reports no names will be attached to comments. You may be assured of complete confidentiality. Finally, keep in mind that we’re just as interested in negative comments as positive comments, and at times the negative comments are the most helpful.” Opening Question A. “Our session will last about an hour and a half. Let’s begin. We’ve placed name cards on the table in front of you to help us remember each other’s names. Let’s find out some more about each other by going around the circle one at a time. Please tell us your name, and in a minute or two please describe how your personal experience with end-of-life care (if any) has impacted your professional work.” Key Questions A. “How would you describe a good experience with end-of-life care? i. What are the issues in providing comfort (physical, emotional, spiritual, resources)? ii. What does the family and loved ones need? B. “When everything has gone well in end-of-life care with which you have had experience, describe what went well and what you would have changed.” IV. i. How did you find out about resources & services? Was it soon enough? ii. What was the result? iii. How were the needs of family and loved ones met? C. What frustrations or difficulties have you experienced in your efforts to provide end-of-life care? i. As a professional? ii. For the family and the individual? iii. In providing comfort as a professional (physical, emotional, spiritual, resources) D. What do people need to know for providing end-of-life care? i. Specifically about the situation & resources needed ii. In terms of skills, education, or training in learning a skill? E. In your experience in caring for people at the end of life, what do you think are the biggest causes of concern? Closing Questions A. What 3 areas would you identify for improvement in end-of-life care? Please write these down on the paper provided. (Have them swap papers, and read each other’s comments. Write their suggestions on the flip chart) B. Which one needs to be addressed first? Again, please write this down on the paper provided. (same procedure) C. Looking at what we have accomplished this afternoon, is there anything else that we didn’t cover?