1. © PCC Institute, 2015 Palliative Care Communication A Resource of the Palliative Care Communication Institute www.pccinstitute.com

2. © PCC Institute, 2015 Changing Healthcare Landscape Patient populations are changing – 1/3 of all Veterans involved in combat and exposed to experiences related to death and dying during duty – 1/3 of adult population are family caregivers – By 2050, 1 in 13 adults age 65 and older will be nonheterosexual, and 42% of older Americans will belong to a racial or ethnic group Healthcare delivery structure is changing – ODTAA - One Damn Thing After Another (Gawande, 2014) – Patients will have longer medical histories, more complex care management, increased care interventions, and multiple providers

3. © PCC Institute, 2015 Key Communication Tasks Palliative care communication involves patient-family-provider conversations about: – Goals of care – Transitions in care – Life-altering news – Providing social, psychological, & spiritual support The COMFORT TM SM Communication Curriculum provides a variety of tools to accomplish these communication tasks

4. © PCC Institute, 2015 COMFORT TM SM COMFORT TM SM is an acronym that stands for the seven basic skills of palliative care communication – Communication (clinical narrative practice) – Orientation & Options – Mindful Communication – Family Caregivers – Openings – Relating – Team

5. © PCC Institute, 2015 Module C: Communication (Clinical Narrative Practice) Be aware of the patient/family life experience and incorporate that experience into your communication with them – Reflect on the patient’s life before illness (ask them about their life) – Remember the patient as an individual (listen to their story and consider what is missing) – Re-author the story (restate their story in sharing new information)

6. © PCC Institute, 2015 Module: Communication Re-author the story – Explicitly recognize the patient’s life “Fifty years of marriage is a special life accomplishment and providing care to your husband is a special commitment” – Elaborate on the illness in the context of the patient’s life “You can be treated with chemotherapy, but it will be hard on you, making it difficult to care for him, and it will not get rid of your cancer” – Acknowledge the loss/change in life “After caring for him for so long, your inability to care for him will be a major loss and you will need help”

7. © PCC Institute, 2015 Module O/O: Orientation & Options When explaining treatment options, it is necessary to help the family understand the disease trajectory – Orientation Describing the big picture of a diagnosis Summarizing the disease path – Options Sharing options for treatment and care

8. © PCC Institute, 2015 Conversations about options of care need to match the health literacy of the patient and family – Health Literacy includes the language you use when communicating with patients/family, the context of the interaction, culture, communication skills level, and technology Module O/O: Orientation & Options

9. © PCC Institute, 2015 For patient/family, the words used in everyday life make sense of health and illness; Use plain language to explain pain medication and symptoms. Plain Language Planner for Palliative Care TM SM (PLP-PC) is available at www.pccinstitute.com Module O/O: Orientation & Options

10. © PCC Institute, 2015 Module M: Mindful Communication Sometimes information doesn’t have to be shared, and just “being with” patients can convey support and caring Mindful communication involves being aware of how others reaction, avoiding judgment, and adapting your own nonverbal communication to convey support and empathy

11. © PCC Institute, 2015 Be aware of your nonverbal communication – Use of touch – Use of space and distance – Physical appearance – All aspects of the voice – Use of and perception of time – The presence of physical and environmental objects Module M: Mindful Communication

12. © PCC Institute, 2015 Module M: Mindful Communication Notice signs of stress for yourself or colleagues, which compromises communication – Ignoring or delaying patient/family requests – Withdrawing from patients/colleagues – Quick emotional reactions to others – Overreactions to colleagues – Calling in sick to avoid feelings

13. © PCC Institute, 2015 Module F: Family Caregivers Family caregivers are often involved in care planning discussions There are 4 specific caregiver communication styles: Manager Carrier Partner Lone Wittenberg-Lyles, E., Goldsmith, J., Ferrell, B., & Ragan, S. (2012). Communication in Palliative Nursing. New York, NY: Oxford University Press. Wittenberg-Lyles, E., Washington, K., Demiris, G., Parker Oliver, D., & Shaunfield S. (2013). Understanding social support burden among family caregivers. Health Commun. [Epub ahead of print]. Doi: 10.1080/10410236.2013.815111

14. © PCC Institute, 2015 Module F: Family Caregivers Manager Caregiver Heavily prepared and brings research material Directives about treatment plans Example communication about pain from this caregiver: “His dosage of Dilaudid every four hours for break through pain. This isn’t sufficient.”

15. © PCC Institute, 2015 Manager Caregiver Provider Communication – Use medical terminology to compliment high literacy of caregiver – One-on-one meetings for other family members

16. © PCC Institute, 2015 Module F: Family Caregivers Carrier Caregiver Heavy and trusting reliance and dependence High frequency of questions with little challenge to answers Example communication about pain from this caregiver: “My mom wants to know if she can have more pain medication.”

17. © PCC Institute, 2015 Carrier Caregiver Provider Communication – Prioritize support resources – Address caregiver burden in team meeting and with caregiver

18. © PCC Institute, 2015 Module F: Family Caregivers Partner Caregiver Various family members present at different times Offers to help the team of providers Example communication about pain from this caregiver: “We all have different ideas about how to manage her pain.”

19. © PCC Institute, 2015 Partner Caregiver Provider Communication – Facilitate large family meetings, focus on education, use medical words

20. © PCC Institute, 2015 Module F: Family Caregivers Lone Caregiver Leary and potential for defensiveness Talk that fixates on immediate physical needs of patient Example communication about pain from this caregiver: “How much stuff are you giving him? He can’t even stay awake. I have to sit with him 24 hours a day and I’m exhausted.”

21. © PCC Institute, 2015 Lone Caregiver Provider Communication – Use simple words and pictures to address low health literacy – Do not use large team meeting format

22. © PCC Institute, 2015 Module: Openings To help patient/family begin a transition in care, take advantage of openings that can begin those conversations. Openings are created when patient/family: – shares their feelings – confides in you – tell you who and what you can and cannot tell – asks you to convince patient to do something or to hide diagnosis/prognosis

23. © PCC Institute, 2015 Module: Openings Address the Topic – Listen for opening and talk about it! Comment on the Topic – Identify and state similarities Connect Topic to Quality of Life – What is the safest quality of life domain (physical, psychological, social, or spiritual) to discuss? – Choose the quality of life domain that naturally connects to the safe domain to transition topics

24. © PCC Institute, 2015 Module R: Relating Provide support for decision-making by talking about uncertainty and identifying multiple goals in communication Uncertainty can create multiple goals and dilemmas for patients/family Multiple goals exist because task and relational communication impact how our words are received and interpreted – Task communication is the content of the message and relational communication includes nonverbal communication

25. © PCC Institute, 2015 Module R: Relating Patient MAP (Modes to Access Preferences) – Talk about Uncertainty – Review goals and uncertainty – Track goal progress

26. © PCC Institute, 2015 Module R: Relating Talk about uncertainty – Consider the source A health event or occurrence resulting in loss of function Lengthy or short trajectory of illness Healthcare staff or family Emphasis on immediate outcome (e.g., treatment choice, place of care) or end-of-life outcome (e.g., death and dying)

27. © PCC Institute, 2015 Module R: Relating Review goals and uncertainty – Varying levels of uncertainty exist “What do you want to accomplish the most right now?” – Uncertainty can come from relationships “Down the road, which goal will have mattered most to you? To your family?” – Need to reduce uncertainty (not always!) “What could you do to make yourself feel better about your current situation?” Track goal progress – Always address uncertainty and progress in each subsequent visit

28. © PCC Institute, 2015 Module T: Team Team communication is necessary to deliver holistic, patient-centered care Teamwork involves the strengths of all team members Groupthink: When collaboration is missing – Groupthink is a negative communication pattern that describes teams that lack problem-solving ability, rarely engage in brainstorming, and have few discussions about decision-making

29. © PCC Institute, 2015 Module T: Team Groupthink caused by: – Power dynamics or hierarchy due to differences in age, education, experience, or position – Self-censorship among team members due to terminology or procedures – Organizational constraints (high caseloads, lack of administrative support, no place for meetings)

30. © PCC Institute, 2015 Module T: Team What challenges does your team face? What processes facilitate excellent team work?

31. © PCC Institute, 2015 Module T: Team Positive Team Communication Team members readily assist each other in tasks Team members engage in conflict resolution as a team Each team member feels comfortable voicing concerns Team members have equal contribution in care planning Team members self-reflect on team processes and make adjustments Team members advocate for the team with other colleagues Mutual respect among all team members

32. © PCC Institute, 2015 Module T: Team Team-based communication practices – Identify strengths of other team members – Watch for signs of fatigue among colleagues – Identify 2-3 key terms for patient/family education and translate them as a team – Address patient safety concerns/issues – Designate team time for sharing frustrations about plans of care (e.g., difficult patient/family, stress)

33. © PCC Institute, 2015 Module T: Team Check your team’s interprofessional pulse* – Who presents cases during team meetings? What dimension of care is presented first? – How are disagreements processed and resolved? – Are each discipline’s assessments, interventions, and other recommendations taken into account in care planning? – How are decisions made in team meetings? – Is there a blend of expertise, a shared base of knowledge that is carried within and used by all members, or does each discipline act independently and simply report back to the team? *Based on research by Soltura & Piotrowsk, 2011

34. © PCC Institute, 2015 Module T: Team Review each discipline’s standardized measures so that each team member understands the language and meaning of the measure Leadership should be rotated among core disciplines monthly (agenda, leading case review) Develop team assessment and evaluation

35. © PCC Institute, 2015 Additional Resources Visit the Palliative Care Communication Institute www.pccinstitute.com – Plain Language Planner for Palliative Care TM SM – Textbook of Palliative Care Communication – Health Communication iOS App – COMFORT TM SM Communication Videos

36. © PCC Institute, 2015 Thank you “We think our job is to ensure health and survival. But really it is larger than that. It is to enable well-being and well-being is about the reasons one wishes to be alive.” Atul Gawande, Being Mortal, 2014