1. Communication in Serious Illness Constance Dahlin, ANP-BC, ACHPN, FPCN, FAAN Palliative Care Specialist Boston, MA

2. Disclosure Statement of Financial Interest I, Constance Dahlin, Have reported no relevant conflict of interest for the purpose of the MiPCT Summit Care Manager Session on Palliative Care

3. Objective Describe the importance of communication with patients with serious illness.

4. Communication is the cornerstone of palliative care. The delivery of quality palliative care is dependent on skillful communication.

5. Communication is a powerful therapeutic tool. When used well, communication can empower patients and families with a sense of control. It may also reduce uncertainty and provide a basis for action.

6. Death Time Health Status 10-15% (trauma, accident, MI, fatal stroke) Illness/Dying Trajectories Sudden Death, Unexpected Cause Field & Cassel, 1997 6

7. Death Time Health Status Field & Cassel, 1997 Illness/Dying Trajectories Steady Decline, Short Terminal Phase Cancer Cancer 7

8. Illness/Dying Trajectories Slow Decline, Periodic Crises, Death Health Status Time Crises Death DeclineHCHF, COPD Field & Cassel, 1997 8

9. Palliative Care World Health Organization, 2002 Curative Focus: Disease-Specific Treatments Palliative Focus: Comfort / Supportive Treatments Bereavement Support

10. What constitutes Palliative Care? Appropriate care when curative treatment and life sustaining treatment are no longer appropriate nor desired. Appropriate care when patients have advanced illness and want aggressive symptom management with curative treatment Aggressive, well-planned symptom control Anticipation and planning for future symptoms to prevent suffering Maximization of patient’s dignity and control Minimization of suffering Psychosocial support for patient and family Protection from burdensome interventions

11. ANA Standards of Practice, Standard 11 2010 Communication Assessing communication format preferences of patients, families and colleagues Assessing his or her own communication skills Conveying information to patients, families and the interdisciplinary team Maintaining communication to promote safe and effective transfers of care Providing professional perspective in health care discussions

12. ANA Code of Ethics for Nurses Provision 1.3 (2001) Nursing care is directed toward meeting the comprehensive needs of patients and their families across the continuum of care. This is particularly vital in the care of patients and families at the end of life to prevent and relieve the cascade of symptoms and suffering that are commonly associated with dying. Nurses are leaders and vigilant advocates for the delivery of dignified and humane care. Nurses actively participate in assessing and assuring the responsible and appropriate use of interventions in order to minimize unwarranted or unwanted treatment and patient suffering (p.7)

13. ANA Position Statement, Registered Nurses’ Roles and Responsibilities in Providing Expert Care and Counseling at the End of Life 2010 “ The counseling a nurse provides regarding end-of-life choices and preferences for individuals facing life-limiting illness, as well as throughout the patient’s life span, honors patient autonomy, and helps to prepare individuals and families for difficult decisions that may lie ahead.”

14. ANA Position Statement, Registered Nurses’ Roles and Responsibilities in Providing Expert Care and Counseling at the End of Life 2010 End-of-life choices are a quality of life issue. Nurses, individually and collectively, have an obligation to provide comprehensive and compassionate end-of-life care, including the promotion of comfort, relief of pain, and support for patients, families, and their surrogates when a decision has been made to forgo life-sustaining treatments.

15. Nurse’s Responsibilities in the Care of Dying Patients 1 ) Educate patients and their families about the use of biotechnologies at the end of life, termination of treatment decisions and advance directives; 2) Encourage patients to think about end-of-life preferences in illness or a health crisis; 3) Support patients, their families, and their surrogates to have end-of-life discussions with their physicians;

16. Nurse’s Responsibilities in the Care of Dying Patients 4) Ensure advance directives are implemented; 5) Communicate known information that is relevant to end-of- life decisions to appropriate health care personnel; 6) Advocate for a patient's end-of-life preferences regardless of surrogate decision maker’s or physician’s desire to not honor them if indeed the preferences reflect beneficent care.

17. Nursing Care and Do Not Resuscitate (DNR) and Allow Natural Death (AND) Decisions Nurses must advocate for and play an active role in initiating discussions about DNR with patients, families, and members of the health care team. ANA

18. DNR Discussions All nurses ensure that whenever possible, the DNR decision is a subject of explicit discussion between the health care team, patient, and family (or designated surrogate), and that actions taken are in accordance with the patient's wishes. All nurses facilitate and participate in interdisciplinary mechanisms for the resolution of disputes between patients, families, and clinicians’ DNR orders (Cantor, et al., 2003).

19. The American Nurses Association Recommendations 1) Clinical nurses actively participate in timely and frequent discussions on changing goals of care and initiate DNR/AND discussions with patients and their families and significant others. 2) Clinical nurses ensure that DNR orders are clearly documented, reviewed, and updated periodically to reflect changes in the patient's condition (Joint Commission, 2010).

20. The Nurse as Translator Nurses often act as translators between the various health disciplines and providers and the patient/family. Tell me about your condition? How much information do you want to know? How do you make decisions? Is there anyone else you want to know or whom we should talk to about your condition, treatment or process? Are there any cultural/religious considerations to your health care that I should know?

21. Nurse Patient Relationship There are four basic elements to communication: imparting information, listening, information gathering, presence and sensitivity.

22. Why communication at EOL difficult Emotional – Makes patient and family sad, makes them feel helpless and out of control – Makes clinician sad, invokes guilt and sense of failure Time Sensitive with Rapid Change of Status – stress of situation – disease progression – window of opportunity

23. Barriers to Communication Social – personality and communication style Cultural Professional – health care role Organizational Regulatory

24. Communication Essential There is time along the disease trajectory to help guide the family with good communication Skilled communication helps patients and families at times critical decision making and transitions Promotes psychological healing Allows for dying as well as possible

25. Differences in Communication Style Lack of literature for non-physicians Sometimes nurses and other providers more tentative than physicians Concerns about nursing role in discussions and scope of practice issues

26. Differences in Information Gathering Nurses and other providers gather at bedside Information through procedures Not a formal interview

27. Patient Family Communication Encourage communication by Nodding one’s head; Comments like “I see,” or “Tell me more”; Repeating 2-3 words from their last sentence, “…you were shocked by the diagnosis”; Reflecting, “So you mean that….” Or, “If I understand what you are saying, you are feeling…..”. (Dahlin, 2010)

28. Family system challenges Lack of continuity among caregivers Consistent lack of health care team communication where mixed messages are given Death in the family may be a new experience and existing coping skills may not be helpful-new coping skills may be required. Perceived or real lack of support among family members Inability to care for family member, either physically or emotionally, may lead to distress in family caregivers. This may lead to the patient having feelings of abandonment and isolation. Illness/dying/death/grief may still be a taboo topic for many families. Adolescents want to be informed with full honest disclosure. Some family members play active roles when communicating with the medical team-others take a less active role (i.e. “The doctor said this is what we have to do.”). Boyd et al., 2011; Rabow et al., 2004

29. Communication Major strategy 1. Open end questions are essential 2. Lack of agenda can help open discussion 3. Keeping discussion open by owning thoughts to make it less threatening – I am curious – I am worried – I wonder

30. Guidelines for Encouraging Conversation Find out if patient/family want to talk Setting the right atmosphere Assessment of patient and family understanding Discuss quality of life and goals of care

31. Communication Questions Ask how much the patient/family want to knowAsk how much the patient/family want to know If pt doesn’t want to know, who do they want to knowIf pt doesn’t want to know, who do they want to know Who will make decisionsWho will make decisions Has patient discussed their values, preferences, and beliefsHas patient discussed their values, preferences, and beliefs

32. Opening Questions How are things going for you/your family?How are things going for you/your family? How do you think you/your loved one is doing?How do you think you/your loved one is doing? What do you understand about your condition?What do you understand about your condition? What has the doctor told you/your family?What has the doctor told you/your family? What are you hoping from this treatment/admission?What are you hoping from this treatment/admission? How can we support/help you?How can we support/help you? Help me understand..Help me understand.. I am worried… I am worried…

33. Advice….. Take your time in giving advice. Take your time in giving advice. Try not to give advice if at all possible unless asked Try not to give advice if at all possible unless asked If you do give advice, do it unassumingly If you do give advice, do it unassumingly “Have you thought about….” “Have you thought about….” “A friend of mine once tried…” “A friend of mine once tried…” “When I went through this with my friend, mother, etc. I found this to be helpful…” “When I went through this with my friend, mother, etc. I found this to be helpful…”

34. Assisting families to make decisions Consider the overall situation (support systems, economics, technical aspects, locality and other issues). – Respond to their questions within a reasonable time and encourage them to ask questions, as well. – Ask—“What would you like me to do? What are your expectations? What do you need?” – When you do not know what to do, seek assistance. – Ask yourself, “What would I do if this was my family member?” – Take the time to listen (Coyne et al., 2009; Dahlin, 2010; Ting-Toomey, 2010). – Remind families that they are not making the decision, but giving you information that guides the decision consistent with the patient’s wishes

35. Resources

36. Types of communication Giving Bad News Transitioning to Palliative Care Goals of Care/Advanced Care Planning Prognosis Discussions Existential questions -Why Discipline specific questions

37. Routine Planned Meetings (1)the discussion of prognosis, particularly if life expectancy is thought to be between 6 and 12 months; (2)the discussion of treatment options with low probability of success (3)the discussion of hopes and fears. (4)End-of-life communication in more "routine" circumstances, when stability or recovery is predicted, normalizes the discussion of advanced care planning.

38. "Urgent" Situations (1)the patient is facing imminent death; (2)the patient is talking about wanting to die; 51 (3) the patient or family is inquiring about hospice; (4)the patient has recently been hospitalized for severe, progressive illness; (5) the patient is experiencing severe suffering and poor prognosis

39. FIFE Model EPERC Fast Fact # 17 F = Feelings related to fears and concerns of illness (Concerned, fears, feelings) I = Ideas and explanations of the cause (Ideas about what, think might be going on, what it means) F= Functioning on daily life (Affecting your life, change in routine) E= Expectations (Expect, hope, expectation)

40. Communication N – Naming It – It seems as if U – Understanding – I ‘m hearing you say R – Respecting – I impressed that S – Supporting – I am here and I will be here E – Exploring – Help me to understand

41. Reframing the Conversation Particularly If a Conflict Be curious about patient and colleague’s perspective by hearing the story Express views and feelings from the “I feel position” Take the time to talk and LISTEN Problem solve together with a common goal.

42. “ The very most we can do for patients is to make it better than it would have been if we were not there.” Being there… Rando, T. (1984). Grief, Dying and Death: Clinical Interventions for Caregivers. Champaign Il: Research Press