1. The Hardest Thing We Have to Do… The importance of communication at the end of life.

2. Objectives Explore techniques for having end-of-life discussions with patients and families Explore techniques for having end-of-life discussions with patients and families Discuss practical methods of assisting patients and families at the end-of-life Discuss practical methods of assisting patients and families at the end-of-life Identify the elements of effective communication within the context of family-centered care. Identify the elements of effective communication within the context of family-centered care. Seminar time=1hr

3. Handouts Personal Death Awareness Evaluation Personal Death Awareness Evaluation Areas of Questioning with Families-IPPC Areas of Questioning with Families-IPPC Professional Caregiver Reflection 2-IPPC Professional Caregiver Reflection 2-IPPC Browning, D. To show our humanness-Relational and communicative competence in pediatric palliative care. Bioethics Forum, 18(3/4). Browning, D. To show our humanness-Relational and communicative competence in pediatric palliative care. Bioethics Forum, 18(3/4). Recommended Reading: Buckman, R. (1992). How to break bad news: A guide Buckman, R. (1992). How to break bad news: A guide for health care professionals. Baltimore: The Johns Hopkins University Press. for health care professionals. Baltimore: The Johns Hopkins University Press.

4. Why is end-of-life communication important? Poor or insensitive communication around end-of-life issues can cause lasting emotional trauma to the patient’s family. Poor or insensitive communication around end-of-life issues can cause lasting emotional trauma to the patient’s family. Contro et al. 2002 By assuming a caregiver role, the physician accepts an ethical obligation and the duty to provide comprehensive end-of- life care to the patient and family. By assuming a caregiver role, the physician accepts an ethical obligation and the duty to provide comprehensive end-of- life care to the patient and family.

5. Why is it so hard to communicate “bad news”? Fear of being blamed Fear of being blamed Fear of the unknown and untaught Fear of the unknown and untaught Fear of unleashing a reaction Fear of unleashing a reaction Fear of expressing emotion Fear of expressing emotion Fear of not knowing all the answers Fear of not knowing all the answers Fear of illness and death Fear of illness and death Buckman, 1984 Buckman, 1984

6. Family-Centered Care The patient is the family not just the person in the hospital bed. The patient is the family not just the person in the hospital bed. Involve family in decisions and defer to them whenever possible. Involve family in decisions and defer to them whenever possible. What do the parents want the patient to know or how do they want to handle the situation? What do the parents want the patient to know or how do they want to handle the situation?

7. Buckman’s 6 steps for breaking bad news 1. Start off well 2. What does the patient already know? 3. How much do they want to know? 4. Sharing the info: aligning and educating 5. Respond to feelings 6. Planning and Follow-through Buckman, 1992

8. Starters First Impressions are Everything: Create an environment conducive to the discussion: privacy, tissues, chairs, water, essential staff, etc. First Impressions are Everything: Create an environment conducive to the discussion: privacy, tissues, chairs, water, essential staff, etc. Be aware of your body language. Match your body language and tone of voice to your news. Be aware of your body language. Match your body language and tone of voice to your news. Who else do the parents want present: extended family members, friends, clergy, etc.? Who else do the parents want present: extended family members, friends, clergy, etc.? Where would the family like to meet? Some are uncomfortable discussing end-of-life issues at the bedside. Where would the family like to meet? Some are uncomfortable discussing end-of-life issues at the bedside. Keep in mind that mail and pizza are delivered, end-of- life conversations need to be a mutual exchange of info. Keep in mind that mail and pizza are delivered, end-of- life conversations need to be a mutual exchange of info.

9. To communicate well: Ask what the family knows and understands. This provides an opportunity to clear up any misconceptions. What they were told and what they heard are often two different things. Ask what the family knows and understands. This provides an opportunity to clear up any misconceptions. What they were told and what they heard are often two different things. Ask what is important now to the family. Don’t assume you know what the family’s primary concerns will be. Ask what is important now to the family. Don’t assume you know what the family’s primary concerns will be. Speak frankly and avoid jargon Speak frankly and avoid jargon Slow your rate of speaking Slow your rate of speaking Allow silence and tears, and avoid the urge to talk to overcome your own discomfort Allow silence and tears, and avoid the urge to talk to overcome your own discomfort Rabow and McPhee, 1999; Fallowfield, 1993; Vandekieft, 2001; Buckman, 1992

10. Use the “D” word Most people struggle with using the words: death, died, dying and dead Most people struggle with using the words: death, died, dying and dead Euphemisms seem more gentle but are potentially confusing (e.g., terms like “terminal,” “critical,” “poor prognosis,” “not doing well,” “unresponsive to treatment”) Euphemisms seem more gentle but are potentially confusing (e.g., terms like “terminal,” “critical,” “poor prognosis,” “not doing well,” “unresponsive to treatment”)

11. Open-ended Questions “Can you explain what you are feeling right now?” “Can you explain what you are feeling right now?” “What most worries you?” “What most worries you?” It is not enough to ask if they have any questions.

12. Be an Empathetic Presence Use touch to show care and concern. Use touch to show care and concern. Use the patient’s name in discussions and at bedside. Use the patient’s name in discussions and at bedside. Embrace silence. Embrace silence. Acknowledge and legitimatize the family’s concerns. Acknowledge and legitimatize the family’s concerns. Do not abandon or avoid them after sharing bad news. If you must leave, provide contact info or let them know who will be taking over and when you will return. Do not abandon or avoid them after sharing bad news. If you must leave, provide contact info or let them know who will be taking over and when you will return. Cultural humility: Recognize that their way of coping may be very different from yours. Honor their values and beliefs without judgment. Cultural humility: Recognize that their way of coping may be very different from yours. Honor their values and beliefs without judgment. Give permission to ask questions or ask for information in different ways. Give permission to ask questions or ask for information in different ways.

13. Become Comfortable With Silence The beginning of wisdom is silence. The second step is listening. -Unknown The beginning of wisdom is silence. The second step is listening. -Unknown Most people know how to keep silent but few of us know when. -Unknown Most people know how to keep silent but few of us know when. -Unknown Well-timed silence hath more eloquence than speech. -Martin Fraquhar Tupper Well-timed silence hath more eloquence than speech. -Martin Fraquhar Tupper Be slow to speak and swift to hear! Be slow to speak and swift to hear! -Alan D. Wolfelt, Ph.D.

14. Acknowledging Parental Anguish Acknowledge with statements such as: “This must be very difficult for you.” “This must be very difficult for you.” “This must be a parent’s worst nightmare.” “This must be a parent’s worst nightmare.” “I can see that your hearts are broken.” “I can see that your hearts are broken.” Avoid statements such as: “I know how you feel.” “I know how you feel.”

15. What if they cry? Stop talking Stop talking Resist the urge to move away Resist the urge to move away Offer a Kleenex Offer a Kleenex Touch the patient or family member Touch the patient or family member Don’t leave them alone until they are ready for some privacy. Don’t leave them alone until they are ready for some privacy.

16. The Power of a Kleenex Your most basic tool for delivering bad news is a tissue box Your most basic tool for delivering bad news is a tissue box Simply offering a tissue gives the patient or family member permission to cry Simply offering a tissue gives the patient or family member permission to cry Provides them with something to help compose themselves Provides them with something to help compose themselves It gives you something to do when you are feeling helpless. It gives you something to do when you are feeling helpless. It physically brings you closer to the patient It physically brings you closer to the patient Buckman, 1992

17. What if I cry? Most families appreciate a small show of emotion Most families appreciate a small show of emotion Don’t create a situation where they are comforting you Don’t create a situation where they are comforting you Take care of you Take care of you

18. Excerpts from research with families (continued) “Do not fall into that detached type of working. Parents need to feel that people really care, not that it’s just a job. The people at the hospital who allowed themselves to have genuine feelings helped me the most.” Parent Interviewed in Meyer et al., 2002

19. What can we do when we can’t fix it? Be genuine and compassionate Be genuine and compassionate Listen carefully Listen carefully Be nonjudgmental Be nonjudgmental Say you are sorry about what is happening Say you are sorry about what is happening Prepare them for the dying process Prepare them for the dying process Empower the family in caring for their loved one Empower the family in caring for their loved one Give permission to ask/repeat questions Give permission to ask/repeat questions Embrace silence Embrace silence Be available Be available

20. WHAT NOT TO DO Preach/talk about your religious beliefs Preach/talk about your religious beliefs Judge their coping styles/ family dynamic Judge their coping styles/ family dynamic Use medical jargon Use medical jargon Say you know how they feel Say you know how they feel Avoid them Avoid them Let your own sense of helplessness keep you from helping the patient and family Let your own sense of helplessness keep you from helping the patient and family

21. Tricks of the Trade When I know I am going to be stepping into a tough situation, I find it helpful, actually, to remind myself that it’s not about me. When I know I am going to be stepping into a tough situation, I find it helpful, actually, to remind myself that it’s not about me. When I don’t have a trusting relationship with the family, I look to someone else on the team to join me, to try to improve the trust. When I don’t have a trusting relationship with the family, I look to someone else on the team to join me, to try to improve the trust. If I’m not sincere, that’s what families will remember the longest. It’s not really what I say, but more how I am. If I’m not sincere, that’s what families will remember the longest. It’s not really what I say, but more how I am.