1. Sarah E. Shannon, PhD, RN

2. Slide 2 Ethics: Forgoing Medical Therapy TNEEL-NE Introduction Nurses are perceived as having a crucial “in-between” role: –The communication line between the patient and physician. –The communication line between family and physician. We look the nurse’s role at end-of-life as a process rather than a single decision, a specific moment, or a single interaction.

3. Slide 3 Ethics: Forgoing Medical Therapy TNEEL-NE Traditional Role: Nurse as Patient Advocate For many years, the nurse’s role was “patient advocate” (supporting a patient’s interests). Patient advocacy is based principle of autonomy: –The individual’s rights to self-determination, in particular over what happens to one’s body. Autonomy vs. justice Autonomy vs. beneficence Merely supporting the patient’s right to autonomy does not resolve the ethical dilemma. Patient advocacy implies that an adversary exists.

4. Slide 4 Ethics: Forgoing Medical Therapy TNEEL-NE Issues that Impact the Nurse’s Role Reactions to ambivalent situations: Moral distress In-between role May Create DEEP Impact

5. Slide 5 Ethics: Forgoing Medical Therapy TNEEL-NE Reactions to Ambivalent Situations: Moral Distress Moral distress: –Presented as an unavoidable part of being involved in ethical issues. –Characterized by anger, powerlessness, frustration, cynicism, burnout or combinations of these feelings. Nurses may encounter three types of moral distress: –Moral sadness –Moral uncertainty –Moral outrage The cure for moral distress is moral dialogue.

6. Slide 6 Ethics: Forgoing Medical Therapy TNEEL-NE In-between Position Nurses may occupy an in-between role in healthcare interactions, or they may feel caught between: –MDs who are in authority in the healthcare setting. Example: Physicians from different specialties who disagree. –Patients who have authority. Is the in-between role a liability or an asset for nurses? One view is that it is an asset: –Nurses are uniquely positioned within the healthcare team by being in-between. –Nurses can facilitate communication via the access and information gained by virtue of “being in-the-know.”

7. Slide 7 Ethics: Forgoing Medical Therapy TNEEL-NE Goals of Ethical Decision Making Nurses may need to rethink and remake their role in ethical decision making. –Using in-between role as a means to begin a decision- making process rather than focusing on ethics as a single decision, a specific moment, or a single interaction. Ethics as a process: –Allows recognition that decision making takes time. –Lets one to accept that the right steps were taking place. –Helps one commit to keeping the lines of communication open with families, patients, and colleagues as the best preventative medicine in ethics.

8. Slide 8 Ethics: Forgoing Medical Therapy TNEEL-NE Ethics Resources for Nurses When nurse’s are overwhelmed, external resources should be utilized. Examples include: –Institutional ethics committees and ethics consultation services. –Clinical nurse specialists or others with expertise in a particular area. –The ethics literature on a particular topic (Kelso book). Kelso, L. A. (1994). Alcohol-related end-stage liver disease and transplantation: The debate continues. AACN Clinical Issues, 5(4), 501-506. KELSO Books – Still Work

9. Slide 9 Ethics: Forgoing Medical Therapy TNEEL-NE Strategies to Promote Ethical Decision Making Nurses can use strategies to promote ethical decision making regarding end-of-life choices and to encourage dialogue between people involved in the patient's case. These strategies fall into three general areas: Knowing Guiding Facilitating

10. Slide 10 Ethics: Forgoing Medical Therapy TNEEL-NE Knowing: Understanding all People Involved Understand the perspectives of all the people involved in the patient's case. These people fall roughly into three groups. Imagine perspectives of the following: Patient Other caregivers Family

11. Slide 11 Ethics: Forgoing Medical Therapy TNEEL-NE Facilitating: Communication Between People Bringing together: Arrange the logistics of bringing the involved people together to talk, –Example: Identify a private room for family discussions. Informing: Translate the specialized language of healthcare (complexities, equipment, etc.) Preparing: Prepare others for discussions by affirming the need for communication –Ask rhetorical questions: “What are we really doing here?” Supporting: Affirm the value of each person’s input, share other person’s sorrow when hard decisions must be made, and be present when physicians talk.

12. Slide 12 Ethics: Forgoing Medical Therapy TNEEL-NE Guiding: Acting as a Reference Group Orienting: Help the family and others function in their normal social or professional roles within the high ‑ tech environment of healthcare. Directing: Guide others about the scope of their social or professional roles given the clinical reality. Sharing: Offer your presence to others in difficult and unfamiliar experiences. –In particular, being present when death occurs if possible.

13. Slide 13 Ethics: Forgoing Medical Therapy TNEEL-NE Characteristics of the Organizational Environment Tolerating Ambiguity Transcending Roles Accepting the Personhood of the Professional

14. Slide 14 Ethics: Forgoing Medical Therapy TNEEL-NE Accepting the Personhood of the Professional The organizational culture accepts the personhood of the professional by recognizing: –Connections between patients, families and professionals extend beyond walls. Supporting healthcare professionals to maintain contact with patients and their families as they transfer between services or settings within an organizational structure. –Professionals also grieve and need support. Creating opportunities such as memorial services for long-term patients offers an opportunity for the participation of professionals as persons.

15. Slide 15 Ethics: Forgoing Medical Therapy TNEEL-NE Tolerating Ambiguity The organizational culture tolerates ambiguity by: –Accepting that clinicians need to be able to be unsure about ethical issues –Offering novice and experienced clinicians encountering new situations support as they become familiar with difficult clinical situations and treatment choices. –Encouraging dialogue while tolerating disagreements and conflicts. –Refusing to accept a dead end in communication about an ethical issue.

16. Slide 16 Ethics: Forgoing Medical Therapy TNEEL-NE Transcending Roles The organizational culture can help healthcare professionals transcend roles by: –Moving beyond negative stereotypes of other professionals or family members such as the uncaring physician or the problem family. –Creating opportunities for open discussion of treatment choices among the healthcare team (particularly where there is disagreement about the plan of care). –Ensuring that disagreement is not personalized to a single individual or to a professional group such as surgeons.