20 Questions to Ask Your Terminally Ill Loved One
As a Bereavement Coordinator for hospice, I was privileged to sit at the bedside of many terminally ill patients and asked them the following questions. Look over the list and use the questions as a guide for the conversation you will have with your loved one.
My hope is that this article has helped you with some of the issues you are facing. Open to Hope has many other articles on coping with loss. Take the time to read what you can and know that you are not alone.
Barbara Rubel, MA, BCETS, CBS
Barbara Rubel, BS, MA, BCETS, DAAETS, is a nationally recognized author and keynote speaker and trainer on increasing self-awareness of skills and strengths that improve the ability to handle job burnout, secondary traumatic stress, and vicarious trauma. Barbara’s programs motivate professionals to build personal resilience. Barbara is the author of the book, But I Didn’t Say Goodbye and the 30-hour continuing education course book for Nurses, Loss, Grief, and Bereavement: Helping individuals cope (4th ed.). She is a contributing writer in Thin Threads: Grief and renewal; Open to Hope’s Fresh Grief; Coaching for results: Expert advice from 25 Top international coaches; and Keys to a Good Life: Wisdom to unlock your power within. Barbara was featured in the Emmy award-winning documentary Fatal Mistakes: families shattered by suicide, narrated by Mariette Hartley. She also developed the Palette of Grief® Program: Understanding Reactions after a Traumatic Death Barbara’s background includes working as a hospice bereavement coordinator and serving as an adjunct professor at Brooklyn College, where she taught undergraduate and masters-level courses in Death, Life and Health; Children and Death; Health Crisis Intervention; and Health Counseling. She currently is a consultant with the Department of Justice, Office for Victims of Crime and co-wrote their training curriculum, Compassion Fatigue/Vicarious Trauma. Barbara received a BS in Psychology and MA in Community Health, with a concentration in thanatology, from Brooklyn College. She is a board-certified expert in traumatic stress and diplomat with the American Academy of Experts in Traumatic Stress.
Dragonflies Help Dad Feel Close to Deceased Son Previous PostI am so thrilled and I am moved that you have created this list of poignant questions for our loved ones that are dying. And, yet, the list is for all of us. Do each of us have an exit plan? Reading your list and reading it intently makes us think as a society of our lives as a whole and how we life this one beautiful life we have. I thank you for your generous and wise offering that will undoubtedly help us all through our lives and onto the next generation that will make thier decisions in life. Our decisions will affect theirs. Shine on Barbara.
Charlotte,
Thank you for reading the 20 questions and sharing them with others. My hope is that the questions lead to actual conversations. For more information on speaking with a terminally ill loved one, please visit the Hopsice Foundation of America website. As part of their Lunch n Learn series, on December 7, 2011 between 1PM – 2PM, they will be exploring “Talking with Dying Patients and their Families.” For information on cost, CEUs and registration visit their website at http://www.hospicefoundation.org/lunchnlearn
Although I understand the limited space you had for writing this piece, I believe that you left out some very important information. On the provision of hospice care you are fundamentally correct but you left out the fact that two physicians must certify, in writing, your terminal 6 month or less prognosis. An important detail to the provision of hospice care. On the Advanced Care Planning and Five Wishes, you’ve left out any discussion of how to ensure that your wishes are honored or enforced. If your wishes are not carried out the planning is a worthless exercise. My greatest concern is the 20 questions portion. What is the point of asking such questions if you (as hospice counselor) are not or cannot do anything about the answers? For many of these questions, how often is even the patient in any position to do anything about the answers? I have seen, in my own experience, my dying, quadriplegic wife asked (by a hospice social worker) if she felt she was a burden to me. My wife said she felt that she was a burden. The social worker merely made note of her answer and did nothing else. It was no different than if the social worker had answered, Yes, you are. I see these questions as beyond insensitive if you plan to do nothing about the answers or know that you can’t. If all you are saying is that these questions are simply good conversation starters, I can think of many others, or other ways of wording these, that would not be insensitive to the dying patient.
D Someya Reed says:Also, as HIPAA was in force when this was written, how many dying patients are not the first to know that they are dying? There is usually more concern as to whether or not to tell the rest of the family, friends, etc. And, question number 1 about feeling included in your health care decisions seems more protectionist for the hospice rather than of benefit to the patient (again, if nothing is going to be done about a negative response). Without any further comments, by you, about the course of these “conversations,” I see this “20 questions” as being more of a problem starter than comforting.