Suggestions for what to say when having difficult discussions Miracles and Hope: “God creates many kinds of miracles. A physical healing is one. Returning to God is another. How will we know which miracle God is making for you?” “Miracles are called miracles because they don’t happen very often. Everyone on your medical team is expecting the same miracle. However, we need to explore what to do if God chooses a miracle other than physical healing.” “We all hope for a miracle, but in my mind, God is in charge of miracles, which is outside what I can do. For now, I would like to focus on what is within my control. What are you hoping for that I can address as a physician (nurse, health aide)?” “I know you hope the treatment will work and so do I, but in case it doesn’t, I think we should plan ahead. If time turns out to be short, what would be the most important for you to accomplish?” “I wish I could promise you a complete recovery, but I’m afraid that I can’t. Do you want to talk about your concerns if things don’t go as we hoped?” Denial: “I’m confused…(you refused life prolonging treatment but when you actually die you want to be kept alive)…can you help me understand?” “What is your goal for a full code?” “We always expect the best but at the same time need to prepare for everything that can happen, including the worst, so we can avoid it.” DNR: “When you told Dr Jones you wanted to be a full code, what were you hoping for?” “Describe for me how you see this fulfilling the goals you told me about yesterday?” “Did something change since we talked yesterday, or did you understand things differently when s/he spoke with you?” “The decision seems to be very hard for you. I want to give you the best care possible; can you tell me more about your decision?” “Sometimes when people die, or are near death, life support measures are used to try and “bring them back”. Alternatively we could focus solely on keeping you comfortable. How do you feel about this?” “you have told me that your goals are…..with that in mind I do not recommend the use of heroic or artificial measures to keep you alive. I can contact your doctor and ask him for an order that says when you die, no attempts to resuscitate you will be made. Is this acceptable? When the patient or family equate DNR with giving up: “code status addresses a specific procedure that is used when you are so sick that you can only be kept alive by being placed on life support. Based on the goals you described to me, CPR would not help achieve those goals and I recommend against it. However, up to that point we will continue to aggressively work to give you the best quality of life and help you meet the goals you’ve described.” “What do you expect will happen? What do you think will be done differently after the resuscitation, that wasn’t being done before?” Statements to avoid when having a DNR discussion “Do you want us to do everything?” “What should we do if your heart stops?” “If we do CPR we will break your ribs and you’ll need to be on a breathing machine, do you want us to do that?” Questions to ask patients and families to elicit end-of-life goals What concerns you most about your illness? How is treatment going for you? What has been the most difficult for you about this illness? What are your hopes for the future? What matters the most to you? What are your fears about the future? How do you want your family members to remember you? What gives you strength? What do you think is most important toy your family? What are your needs at this time? What are your concerns? At this time? In the future? What do you want to accomplish or do? What do you wish you could still do? What are the things that bring you joy/comfort? What is important for you to maintain control over? What do you feel you have control over? How do you feel about your treatments (medication, radiation, chemo, DNR)? If you have pain, what would be an acceptable level for you on a 0-10 scale? What activities such as music, art, reading, massage, touch provide peace or comfort to you? What are the most important relationships in your life? Is there anyone you would like to see/talk to or visit with? What are you proud of? What are your greatest achievements? How and where do you want to live for the rest of your life? Where are you most comfortable? What are you hopeful about? What spiritual or religious practices bring you comfort? Recommendations for Conducting a Family Meeting Prepare for the Meeting Review medical issues and history. Coordinate health care team. Discuss goals of meeting with team. Identify a meeting leader among the health care team. Discuss which family members will be present. Arrange a private, quiet location with seating for all. Try to minimize distractions: set aside adequate time and seating, turn off pager if possible. Open the Meeting Introduce all in attendance. Review the medical situation. Establish the overall goal of the meeting, by saying something like: “Today I’d like to make sure everyone understands how [the patient] is doing and answer all the questions that you have,” or “We wanted to meet today to discuss how [the patient] will be cared for at home.” Be prepared for the goals of the meeting to change based on family’s desires. Elicit Family Understanding Ask family members questions, such as “What have you been told about [the patient’s] condition?” After hearing from the family, a helpful follow-up question is “Is there anything that isn’t clear that we can help to explain?” Elicit Patient and Family Values and Goals Elicit goals of all these present, especially if multiple perspectives are held. Begin with an open-ended question, such as, “Given what’s gone on, what are your hopes for [the patient]?” This may be followed by more specific suggestions for the family: “sometimes getting home is an important goal for someone. Sometimes seeing a certain family member or friend is an important goal: are there things like this that you imagine are important for [the patient]?” Understand ethnic and cultural influences on communication styles, family relationships, medical treatments, and end-of-life care by asking: “Can you please help me to understand what I need to know about [the patient’s] beliefs and practices to take the best care of [the patient]?” Maintain focus on the patient’s perspectives. Often this can help to relieve guilt that family members may feel over making decisions. Such questions could include: “What do you imagine [the patient] would have done or wanted in this situation?” or “Our goal is not so much to think about what you would want or not want but to use your knowledge of [the patient] to understand what he or she would want in this situation.” Deal With Decisions That Need to Be Made Achieve a common understanding of the issues. Find out if the patient had made his or her wishes about the decision known by asking, “Had [the patient] ever discussed what he would want or not want in this kind of a situation?” Reassure family members that they are making a decision about what is in the best interests of the patient, not necessarily what is in their own best interests. Begin with open-ended assessments and then turn to specific interventions if necessary. Offer clear recommendations based on patient and family goals, by suggesting, for example, “Given our understanding of the medical situation and what you’ve told us about [the patient’s] goals, I would recommend not pursuing dialysis.” Seek consensus whenever possible, agreeing on the decision or on the need for more information. Use summary statements, such as, “It sounds like we are coming to an understanding that [the patient] would not want to continue on the ventilator. Is that how everyone understands his or her wishes?” Consider the possibilities of seeing the decision as a “therapeutic trial” or as a health care team recommendation that requires only family assent. Check for understanding of the decisions made, by saying something like, “I want to make sure everyone understands that we’ve decided to…” Close the Meeting Offer a brief summary of what was discussed. Ask for any final questions. Offer a statement of appreciation and respect for the family: “I appreciate how difficult this must be, but I respect everyone for trying so hard to do right by [the patient],” or “I want to thank everyone for being here and for helping to make the difficult decisions.” Make a clear follow-up plan, including plans for the next family meeting and how to contact the health care team. Follow up on the Meeting Document the meeting in the chart. Follow up with any information or reassessment agreed upon during the meeting by saying, “When we last met, you were going to talk with your brother about our meeting. How did that go?” Conducting a family conference I. Pre-conference planning A. Why - clarify conference goals: make treatment for non-decisional patients; review medical condition and establish treatment goals; identify surrogate decision-maker; answer family questions; resolve patient, family, and staff disagreements or conflicts B. Where a room that ensures comfort and privacy C. Who: 1. The legal decision-maker/health-care power of attorney and other family members 2. Key family supports, e.g., friend, minister, relative 3. Other key health-care professionals (primary nurse; consultants) 4. Social worker, care coordinator, or discharge planner may coordinate meeting II. Opening A. Introduce yourself and others B. State goals of the meeting C. Establish ground rules 1. Each person will have a chance to ask and express views 2. No interruptions 3. Identify legal decision-maker and value of supportive decision-making 4. Does anyone have any comments or questions about goals or process? III. Reviewing current medical status, including recent information A. Review current medical status, including recent information B. Ask each family member in turn if there are any questions about status, plan, or prognosis C. Defer any discussion of decision until the next step IV. Moderating family discussion A. With a decisional patient 1. Ask patient what decision(s) is being considered 2. Then ask each family member if there are questions or concerns about this plan B. With a non-decisional patient 1. Ask each family member (and knowledgeable others) in turn what they believe the patient would choose if he/she could speak for himself/herself 2. Ask each family member what his or her own wishes are 3. Step out of room to allow family to discuss 4. If there is consensus, go to V; if no consensus, go to C C. When there is no consensus 1. Use time as ally: schedule a follow-up conference the next day 2. Try further discussion a. Ask each family member about the values on which the decision is based b. Ask each family member how the decision will affect him or her and other family members 3. Restate goal: to help speak on the patient’s behalf…what would the patient say? 4. Identify legal decision-maker 5. Identify other resources: minister or priest; other physician; hospital ethics committee V. Closing and follow-up A. Summarize: review decisions from meeting B. Caution against unexpected outcomes (e.g., what if a dying patient recovers?) C. Identify a family spokesperson: identify one family member as a contact person D. Document results of meeting in patient’s chart, including who was present and major decisions E. Do not turf discontinuation of treatment to nursing F. Continuity: maintain contact with family and medical team; schedule PRN follow-up meetings VI. Family dynamics and decisions A. Be sensitive to family structure: respect the family hierarchy whenever possible B. Expect established patterns of interaction in the family to continue 1. Unresolved conflicts between family members may be evident 2. Problems with authority figures (e.g., physicians, hospitals) will affect the process C. Family grieving and decision-making: common patterns 1. Denial may lead to false hopes 2. Guilt may lead to fear of letting go 3. Depression may lead to passive inability to decide, or to anger and irritability. Suggestions for breaking bad news SPIKES protocol S SETTING Set the scene by ensuring the privacy of your conversation. Select a quiet and private place in which to break the bad news. Greet your patients warmly, with a smile and make eye contact. Ensure there are no physical barriers between you and your patients. P PERCEPTION Assess patients' perceptions of their illnesses by asking open-ended questions. Remember the vocabulary that the patient uses and repeat their choice of words when you break the news. I INVITATION Invitation to impart medical information should come from your patients. The vast majority of your patients will want to know the details of their illness, but to respect those who don't, be sure to ask their preference. K KNOWLEDGE Knowledge should be shared with your patients by replicating their vocabulary. Give your patients small chunks of information, making sure that they understand the content after each chunk. E EMPATHY Empathic and exploratory responses should be used when responding to your patients' emotions on hearing the bad news. Validate their feelings. S STRATEGY AND SUMMARY Strategizing and summarizing will give you a chance to reiterate what has just been discussed, and provides the opportunity to raise important issues that should be covered immediately. Create a strategy so the patient knows what will happen next. What not to say when giving bad news “I know exactly how you feel.” “You have failed your …..(antibiotics, chemotheray etc)” “There is nothing else we can do.” Refs: What should I say when…words that work in palliative care consults. 2010 AAHPM & HPNA Annual Assembly H Starks, S Farber, G VanderKieft ELNEC-SuperCore Curriculum COH & AACN, 2007 www.eperc.mcw.edu www.wellsphere.com http://endoflife.stanford.edu Useful Websites: Palliative medicine hotline (staffed 24/7 by a physician & pharmacist) 1-877-725-6334 http://www.aahpm.org/ The American Academy of Hospice and Palliative Medicine (AAHPM) is an organization of physicians and other medical professionals dedicated to excellence in and advancement of palliative medicine through prevention and relief of patient and family suffering by providing education and clinical practice standards, fostering research, facilitating personal and professional development, and by public policy advocacy. http://www.eatright.org It is the position of the American Dietetic Association that individuals have the right to request or refuse nutrition and hydration as medical treatment. http://www.capc.org/ The Center to Advance Palliative Care (CAPC) provides health care professionals with the tools, training, and technical assistance necessary to start and sustain successful palliative care programs in hospitals and other health care settings. http://www.doyourproxy.org/ Website for general public to help with the process of discussing and creating Advanced Directives. The most difficult part about considering potential end-of-life decisions is thinking them through when you are relatively healthy, and then communicating them to your loved ones. http://dyingwell.org/ Dr. Ira Byock, long time palliative care physician and advocate for improved end-of-life care, and a past president of the American Academy of Hospice and Palliative Medicine, provides written resources and referrals to organizations, web sites and books to empower persons with life threatening illness and their families to live fully. http://www.epec.net/EPEC/webpages/index.cfm Our mission is to educate all healthcare professionals on the essential clinical competencies in palliative care http://www.aacn.nche.edu/elnec/ The End-of-Life Nursing Education Consortium (ELNEC) project is a national education initiative to improve end-of-life care in the United States. The project provides undergraduate and graduate nursing faculty, CE providers, staff development educators, pediatric and oncology-specialty nurses, and other nurses with training in end-of-life care so they can teach this essential information to nursing students and practicing nurses. http://www.eperc.mcw.edu/ The purpose of EPERC is to share educational resource material among the community of health professional educators involved in palliative care education http://www.getpalliativecare.org/ A resource primarily for patients and their families. http://www.hpna.org/ The purpose of the Hospice and Palliative Nurses Association (HPNA) is to exchange information, experiences, and ideas; to promote understanding of the specialties of hospice and palliative nursing; and to study and promote hospice and palliative nursing research.
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