1. Advanced Care Planning - It’s Not Just for End of Life Constance Dahlin, ANP-BC, ACHPN, FPCN, FAAN Palliative Care Specialist

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

4. Objectives the Identify the strategies for goals of care discussions ◦ Explain the three elements of Advance Care Planning. ◦ Describe the advantage of early Advance Care Planning.

5. Historical Background 1970-90 Legal Cases raising issue about surrogate decision making and advance directives ◦ Quinlan, Cruzan 1991 – Legal Act for Health Decision Making and Self Determination Act 1993 - Outpatient code status began in Oregon as POLST Various states with out of hospital code status sheets

6. The nurse's role in this has been delineated by The American Nurses Association (ANA). The ANA stated that nurses "have a responsibility to facilitate informed decision-making, including but not limited to advance directives

7. What is Advance Care Planning? 1) It is a process, not an event, with the acknowledgment that decisions may change over time. It is beyond code status discussions. It delineates the what, where, and when. 2) It includes discussions with patients to elicit their values, preferences, beliefs, goals of care, and resources that form decision making for end of life care.

8. What is Advance Care Planning? 3) Documentation is critical. Depending on the state or territory, includes the following documents:  Surrogate health decision makers - Patient Advocate for Health Care Advance Directives/Living wills  Orders for in hospital and out of hospital for Do Not Attempt Resuscitation (DNAR) or No Code  MIPOST/MOLST (Medical Orders for Life Sustaining Treatment), POLST (Physician/Provider Orders for Life Sustaining Treatment).

9. Why do ACP? Allows the patient to state their wishes Empowers patients with some control in disease management and end of life planning Promotes trust Normalizes the discussion of end of life planning and allows ACP to be seen as ordinary like any other treatment discussion Relieves the surrogate decision maker of the burden of making difficult decisions

10. When to Initiate Discussions Routinely ◦ When you first meet patient ◦ Discussion re diagnosis and treatment ◦ When a poor prognosis is being presented ◦ Non-urgent treatment decisions Urgent ◦ When there are difficult decisions to make ◦ When there is an unexpected change in clinical condition Upon request ◦ When the patient asks for it ◦ When team asking for code discussion

11. Preferences for Care Review of the following: ◦ Definition of Quality of life?  Comfort?  Function?  Extended life? Do you (or the patient) want life sustaining or life prolonging treatment? Where the individual wants care to spend their last days? ◦ Hospital / Intensive care ◦ Home ◦ Blend

12. Ethical Principles for ACP Respect for persons ◦ Autonomy and Self Determination Advocacy- even if decisions are not in agreement with nurses judgment of “right” Veracity - disclosure Decision Making ◦ Capacity – ability to understand consequences of the decision (medical determination) ◦ Substituted judgment- what the patient would want if able to communicate ◦ Best Interest

13. Professional Ethical Responsibility for ACP Code of Ethics ◦ Respect for person ◦ Advocacy for health, safety, rights of patient ◦ Collaboration with other health professionals Professional Organizations ◦ ANA, Position statement on Registered Nurses’ Roles and Responsibilities in Providing Expert Care and Counseling at End Of Life, 2010. ◦ HPNA, Position statement The Nurse’s Role in Advance Care Planning, 2011. ◦ ANA Position statement: Nursing Care and Do Not Resuscitate (DNR) and Allow Natural Death (AND) Decisions, 2012

14. Professional Ethical Responsibility for ACP American Nurses Association (ANA). (2012). Position statement 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. ◦ Involvement, documentation ◦ DNR does not mean Do Not Treat

15. Challenges for Patients Often patient wishes are unknown or not honored. May feel pressured to receive therapies they don’t want. Fear of abandonment Don’t know they can decline treatment in any setting Don’t know about options such as home services or have poor coverage for end of life care.

16. Challenges for Providers Little education and training in End of Life Care Concerns that ACP could lead to futile treatments or encourage use life sustaining therapies whether appropriate or not Fear of litigation Time to get to know patients and families Not knowledge about previous discussions of wishes, preferences, and goals of care Lack of documentation of important conversations Expectation of outcomes of the conversation ◦ “Get the DNR.”

17. Clinician Difficulty in ACP Discussions Sensitive topic ◦ Hard to ask the questions and raise issue Concern that patient will misinterpret intention of the discussion ◦ New diagnosis ◦ Prognosis Finding appropriate language Fear of frightening patients Time Timing

18. Guidelines for Encouraging Conversation Assess what the patient and family understand about illness, and response to treatment Provide information re disease status if needed Discuss goals of care, expectations for future ? Has patient discussed their values, preferences, and beliefs with that person? Or anyone else ?

19. Conversation Starters Have you ever thought about the extent of treatment you would want? Have you thought about someone who would make decisions for you in the case you could not make them? Have you thought about how you would guide them in the decisions? Have you considered what you would want if your disease became more advanced?

20. Essential areas to cover The role of culture in advance care planning. ◦ Are there any cultural concerns we should understand in how your family considers illness, death, dying, and/or treatment makes decisions? The role of spirituality and religion in advance care planning ◦ Are there any rituals or practices that influence your treatment decisions or view of death and dying?

21. Values What do you (or the person) hold dear in life? How do your (or the person) definition of quality of life What gives you (or the person) strength?

22. Beliefs What is your (or the person’s) Meaning of Life What is your (or the person’s) Religion? Is the your (or the person’s) Spiritual? What is your (or the person’s) thought on the Afterlife?

23. Achieving Common Understanding with Families Focus on the values, preferences, and beliefs of the patient t o find out if the patient had made his or her wishes known. Assist family members to make decisions based on substituted judgment and patient’s best interests Did your loved one ever discuss what he or she would want or not want in this kind of a situation? Given our understanding of the medical situation and what you’ve told us about your loved one’s goals, I would recommend not pursuing …….

24. Achieving Common Understanding with Families Did your loved one ever discuss what he or she would want or not want in this kind of a situation? ◦ To find out if the patient had made his or her wishes known. ◦ Assists family members to make decisions based on substituted judgment and patient’s best interests Given our understanding of the medical situation and what you’ve told us about your loved one’s goals, I would recommend not pursuing ……. ◦ Offer clear recommendations based on patient and family goals and medical condition.

25. Eliciting Goals from Family  What do you imagine [the patient] would have done or wanted in this situation?  Our goal is not so much to think about what you would want or not want but to use your knowledge of [the patient] to understand what he or she would want in this situation. ◦ Maintain focus on the patient’s perspectives. Often this can help to relieve guilt that family members may feel over making decisions. ELNEC

26. Achieving Common Understanding with Families  It sounds like we have an understanding that your loved one would not want to continue be in a respirator or be in a vegetative state. Is that how everyone understands his or her wishes?”  Use summary statements. Consider decisions for “therapeutic trial” or as needing only family assent.  I want to make sure everyone understands that we’ve decided to…  C heck for understanding of the decisions made.  Seek consensus on the decision or on the need for more information.  ELNEC

27. Summary Comprehensive assessment of symptoms and suffering includes ascertaining relevant information about the patient‘s background, values, family relationships, understanding of illness, goals of care and hopes for the future. All of these factors are essential to provide patient and family-centered information regarding disease status, explore options for care suitable to patient goals and condition, and foster shared decision-making. Dahlin 2010

28. Conclusion Advance Care Planning is not just for end of life. Ideally, it should start upstream when someone is well. Or it can start at the diagnosis of an illness.

29. Resources Respecting Choices “Making Choices respectingchoices.org Aging with Dignity “Five Wishes” agingwithdignity.org/five-wishes.php Grace Project “Advance Directive” projectgrace.org/Advance-Directives Directives by State www.caringinfo.org/stateaddownload

30. References American Nurses Association (ANA). (2012). Position statement: Nursing Care and Do Not Resuscitate (DNR) and Allow Natural Death (AND) Decisions Washington, DC: ANA. http://www.nursingworld.org/positionstatementshttp://www.nursingworld.org/positionstatements American Nurses Association (ANA). (2010). Position statement: Registered nurses’ roles and responsibilities in providing expert care and counseling at the end of life. Washington, DC: ANA. Retrieved September 16, 2011 from: http://www.nursingworld.org/MainMenuCategories/EthicsStandards/Ethics- Position-Statements.aspxhttp://www.nursingworld.org/MainMenuCategories/EthicsStandards/Ethics- Position-Statements.aspx American Nurses Association (ANA). (2010) Nursing Scope and Standards of Practice.2 nd ed. Silver Spring MD; ANA nursingbooks.org American Nurses Association (ANA). (2010) Social Policy Statement. Silver Spring MD; ANA nursingbooks.org American Nurses Association (ANA). (2010) Guide to the Code of Ethics for Nurses. Interpretation and Application. Silver Spring, MD: nursesbooks.org. End of Life Nursing Education Curriculum, 2013