Advanced Care Planning - It’s Not Just for End of Life

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

4. Historical Background • 1970-90 Legal Cases raising issue about surrogate decision making and advance directives • Quinlan, Cruzan • 1991 – Legal Act for Health Decision Making andSelf Determination Act • 1993 - Outpatient code status began in Oregon as POLST • Approximately 33 states have various forms of Out of Hospital Orders for Life Sustaing Treatment/ Code Status/Comfort Care forms or order sets –

5. 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

6. 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.

7. 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).

8. 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

9. 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

10. 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 • Doesn’t matter as long as receive life prolonging treatments

11. 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

12. 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.

13. 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.”

14. Clinician Difficulty to InitiateACPDiscussions • Sensitive topic • Hard to ask the questions and raise issue • Difficult to figure out “best” time • Concern that patient will misinterpret intention of the discussion • New diagnosis • Prognosis • Finding appropriate language • Fear of frightening patients • Time to do a thorough discussion

15. Guidelines for Encouraging Conversation Assess what the patient and family understand about illness, and response to treatment Provide information about disease status if needed Discuss goals of care, expectations for future Inquiry if patient has discussed their values, preferences, and beliefs with anyone ?

16. 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? Have you thought about when your disease becomes more advanced and cannot be cured?

17. 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?

18. Achieving Common Understanding with Families • Focus on the values, preferences, and beliefs of the patient to find out if the patient had made his or her wishes known. • What do you imagine [the patient] would have done or wanted in this situation? • 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? • 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.

19. 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… • Check for understanding of the decisions made. • Seek consensus on the decision or on the need for more information. ELNEC

20. Summary Advance Care Planning is not just for end of life. Ideally, it should start upstream when someone is well. It should focus on quality of life and not code status. 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

21. 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

22. 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

23. 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

24. 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?

25. 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?

26. 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/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.aspx American Nurses Association (ANA). (2010) Nursing Scope and Standards of Practice.2nd 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