1. TNEEL-NE Stuart J. Farber, MD

2. Slide 2 Connections: Patient Centered Decision Making TNEEL-NE Facilitating patient-centered decision making requires nurses to promote: –Reaching Consensus: Having the patient, family, and health professionals come to a common understanding of what the medical diagnosis and prognosis means. –Plan: Negotiating a common point of view on the initial management path while maintaining flexibility. Patient-Centered Decision Making

3. Slide 3 Connections: Patient Centered Decision Making TNEEL-NE Reaching Consensus Three significant issues to consider when negotiating this common understanding are: Uncertainty Internal barriers to understanding and accepting a serious medical diagnosis and prognosis Acceptance of the diagnosis and prognosis

4. Slide 4 Connections: Patient Centered Decision Making TNEEL-NE Dealing with Uncertainty It is impossible to tell your patient when he/she will die, or how he/she will die. Probability and statistical describe groups - they are misapplied to individual patients. Be honest with the patient and family. Understand the patient’s personal values and goals.

5. Slide 5 Connections: Patient Centered Decision Making TNEEL-NE Dealing with Internal Barriers Exploring each party’s understanding of the illness and its meaning by asking open-ended questions and listening to the answers. Identifying the individual barriers each participant (patient, family, health professional) possesses.

6. Slide 6 Connections: Patient Centered Decision Making TNEEL-NE Dealing with Acceptance A “moving target” – an ongoing, dynamic process Needs to be “addressed” repeatedly over time moving target

7. Slide 7 Connections: Patient Centered Decision Making TNEEL-NE Bad News Definition: –The verbal delivery of a diagnosis of cancer, or helping a patient and family understand that a chronic ongoing disease, such as COPD or heart disease, is just not going to get better. Communicating to patients and families the "Bad News" of incurable illness requires considerable skill.

8. Slide 8 Connections: Patient Centered Decision Making TNEEL-NE Giving Bad News I Effective methods of giving bad news: –Setting –Use the communication skills –Learn the patient’s story –Nontechnical, understandable language –Develop a short term plan –Schedule a follow up appointment soon (Buckman, 1992)

9. Slide 9 Connections: Patient Centered Decision Making TNEEL-NE Giving Bad News II Setting: –Private, quiet, comfortable –Sit facing the patient –Including family and caregivers –Including medical team members –Having the patient tape record the visit

10. Slide 10 Connections: Patient Centered Decision Making TNEEL-NE Giving Bad News III Communication Skills –Open-ended questions –Listen to the answers Communication elements –Empathic statements and actions

11. Slide 11 Connections: Patient Centered Decision Making TNEEL-NE Giving Bad News IV Learn the patient’s story –What is the patient / family understanding of the illness? –What is important to the patient/family? –What meaning does the patient/family ascribe to these events? –What are their past experiences with serious illness, death and loss? –What are their social supports?

12. Slide 12 Connections: Patient Centered Decision Making TNEEL-NE Giving Bad News V Nontechnical, understandable language –Check to be sure of the patient’s and family’s understanding of the situation –State clearly and concisely your understanding of the medical situation Example Statements: 1. “Do you have any questions about what I just said?” 2. “Do you understand what I just said?”

13. Slide 13 Connections: Patient Centered Decision Making TNEEL-NE Giving Bad News VI Develop a short term plan –Patient/family concerns –Your concerns –Involve other appropriate team members and consider all options, especially palliative care and hospice.

14. Slide 14 Connections: Patient Centered Decision Making TNEEL-NE Giving Bad News VII Schedule a follow up appointment soon –Within a few days –A phone call within 24 hours.

15. Slide 15 Connections: Patient Centered Decision Making TNEEL-NE Negotiating a common point of view on an initial management path Initiating care by providing context A medical context for the future Symptom management Plan

16. Slide 16 Connections: Patient Centered Decision Making TNEEL-NE Initial Management Path Building common understanding Reaching consensus about initial management path Consider values, attitudes and goals of patient & family

17. Slide 17 Connections: Patient Centered Decision Making TNEEL-NE Initiating Care by Providing Context Expect dysequilibrium Restoring balance Construction of a new future

18. Slide 18 Connections: Patient Centered Decision Making TNEEL-NE A Medical Context for the Future Allow exploration of a possible future, and be mindfully “present” to the patient and family by asking open-ended questions. Example Questions used by expert: “What do you think will happen in the coming weeks?” “What role does spirituality play in your life?” “What is important to you in your life?” The actual future is often experienced through an extremely unpredictable and circuitous path.

19. Slide 19 Connections: Patient Centered Decision Making TNEEL-NE Symptom Management The heart of providing comfort to the dying patient and their family The most common form of narcotic abuse in caring for dying patients is under treatment of pain. Many common patient symptoms are experienced by the dying

20. Slide 20 Connections: Patient Centered Decision Making TNEEL-NE Issues Related to a Dying Child I Adults find it exceedingly difficult to accept the death of a child. It is important for healthcare providers to support the decisions of parents /family about caring for a dying child at home. All children should be allowed to participate meaningfully in decisions based upon their developmental level and using conceptualization and vocabulary consistent with their stage of development.

21. Slide 21 Connections: Patient Centered Decision Making TNEEL-NE Issues Related to a Dying Child II Hospice Care: –Early discussions of hospice care between clinicians and parent were associated with a greater likelihood that parents would describe their child as calm and peaceful during the last month of life. Active involvement by caregivers who are committed to palliation may reduce the suffering of dying children.