1. End-of-Life Decision-Making and the Role of the Nephrology Nurse Module 1 Techniques to facilitate discussion for Advanced Care Planning (ACP)

2. The objectives of Module I are to… Identify ESRD patients at risk to die in the next 6-12 months. List 4 core skills for initiating advance care planning discussions. Provide 5 examples of how to implement advanced care planning skills.

3. Introduction 80% of Americans have a chronic illness Most will spend years managing illness In the final months of life, there will be disability, poor QOL & hospitalizations Most will die suddenly, unprepared 50% will be unable to make their own decisions Most are willing to discuss and plan

4. Identify patients at risk to die in next 6-12 months ESRD End-of-Life Demographics Significantly shortened life span Rising median age of ESRD population Over 65,000 ESRD patients die per year ~20% die after decision to withdraw High percentage with co morbidities High in-hospital death Unknown but low % die with hospice

5. Expected Remaining Years of Life For Dialysis Populations AgeBlack Male Black Female White Male White Female 20-2416.914.714.213.1 30-3412.611.29.89.2 40-449.48.67.26.9 50-546.96.45.35.1 60-644.8 3.8 70-743.4 2.7 85+1.9 1.6 USRDS Annual Report 2002

6. Sentinel Events & Conditions that predict prognosis of dialysis patients Serum Albumin < 3.5 gm/dl 1 year survival= 50% 2 year survival= 17% (Goldwater, 1993)

7. Cumulative Survival following first amputation after renal failure: 1996-2001 Level N 30 day 60 day 90 day 180 day 365 day 730 day Total 49,708 88.579.773.862.449.033.7 Toe 15,776 95.289.684.974.761.444.6 Below Knee 23,952 89.380.574.763.349.533.7 Above Knee 9,980 76.462.254.240.628.216.4 Eggers, NIH 2004

8. All Cause Mortality (%) After AMI by Etiology of ESRD: 1996-2001* Etiology N1 yr2 yr3 yr4 yr5 yr Total 31,785 52.166.976.983.387.6 DM 15,460 53.068.879.48690.5 HTN 9,11253.968.878.684.588.7 Other 7,21347.860.969.576.380.5 * Dialysis Patients only Eggers, NIH, 2004

9. ESRD Cardiac Arrest: CPR survival Died 92% 8% Lived to discharge

10. Late Referral to Nephrologist More Hispanics, Blacks Lower Serum Albumin Lower HCT Greater number malnourished S CR GFR More catheters Stack AJKD 2/03

11. Relative Risk of Death Late Referral patients At 6 months 1.65 (65% higher risk) At 12 months 1.57 (57% higher risk) At 2 years 1.22 (22% higher risk) (CI 95%) Stack AJKD 2/03

12. Ask the Nephrologist “Would you be surprised if this patient dies in the next 6-12 months ?”

13. Emotional Symptoms of Readiness AngerHopelessnessSpiritual distress AnxietyFearDependency Financial distress DepressionWhy me?

14. Signs That a Patient May be “Ready” Giving belongings away Increased hospital stays, medical decline Withdrawing from personal attachments Decreased interest in eating Increased sleep/fatigue They tell you You just sense it by their overall look

15. Examples of Verbal Cues “I don’t want to be a burden” “I don’t know if all of this is worth it to me anymore” “I’ve had enough” “What happens if you stop dialysis?”

16. Core Skills The nephrology nurse has multiple opportunities to initiate discussion and provide guidance with decision-making over time Collaborative team incorporates ACP into the overall care plan

17. Advanced Care Planning Advanced Care Planning ACP and Advance Directives are NOT the same thing AD

18. Advanced Care Planning is NOT a “one-size fits all” concept Advanced Care planning IS a process for: Understanding, Reflecting, Discussing & Formulating a plan with the patient

19. Guiding Principles Seek first to understand; let patient tell his/her story Be there; offer opportunities many times Focus on talking and learning; not making decisions Encourage patient to reflect Listen, explore, and listen more

20. Core ACP Skills Initiate routine and urgent discussions Explore understanding of renal disease progression Search out values of living well Clarify statements Discover meaning of experiences

21. Core of ACP Skills, continued Assist in understanding ACP Explore barriers to planning Assist in selection and preparation of proxy Advocate for & communicate patient wishes Make referrals

22. Initiate Routine Discussion It’s never too early to plant a seed Begin discussion prior to dialysis, and at regular intervals e.g. care conferences Provide basic information first, then add more discussion over time Incorporate as a component of good patient care (“We’re trying to begin these talks with all of our patients”)

23. Initiate Urgent discussions Person you would not be surprised died in the next 12 months, e.g. sentinel event, low serum albumin Frequent hospitalizations Declining functional status Verbal cues e.g. “I’m not sure all of this is worth it to me anymore”

24. Where to begin? Walk the path with patients

25. Explore understanding of illness progression “Describe for me what you think your kidney disease is doing to you.” “Do you have ideas of what complications could happen to you?” “Are you interested in knowing more about your illness and what might happen?”

26. Explore values/goals on living well “What future or present experiences are important for you to live well?” “What fears or worries do you have about your illness?” “What helps you get through when you face serious challenges in your life?” RESPECTING CHOICES® Advance Care Planning

27. Clarify statements e.g …. The nurse says “What do you mean when you say…” “I don’t want to be a burden” “I don’t know if all of this is worth it to me anymore” “I’ve had enough” “What happens if you stop dialysis?”

28. Explore experiences … with last hospitalization/complication “The last time you were hospitalized (or some incident) what was it like for you?” “Did it change any of your goals or values for the way you are living your life?”

29. Explore understanding of ACP “Have you ever written down any of your thoughts about future medical care?” “Tell me what you’ve done?” “Why or why not?” “Are you willing to begin to learn a little more about what this involves?”

30. Explore patient barriers to discussion “Why is this a difficult topic for you to talk about?” “What are your fears or concerns if you talk about it?” “Are there any religious, cultural or personal reasons why talking about this may be difficult?”

31. Explore experiences …in making health care decisions for others “Have you had any experiences making health care decisions for a loved one, perhaps even end-of-life decisions?” “What did you learn through those experiences that might help you make your own decisions or help those you love make them for you”?

32. Assist in understanding importance of ACP “You have an illness that’s difficult to predict if and when a complication may occur”. “If this happens, it may leave you unable to make your own decisions” “As health professionals, we would need to turn to a loved one to make decisions for you”

33. “Often, loved ones have little idea of what kinds of decisions you would want” “Sometimes people avoid talking too much about these things” “A proxy who has to make decisions is often very stressed” “While we ‘hope for the best’ we also want to help you ‘plan for the worst’” Understanding, continued

34. Assist in selection and preparation of proxy Help patient choose a person who: Is willing, trustworthy Understands values/goals Is able to make decisions under stress Is willing to understand the role they need to play and the importance of this ongoing relationship

35. Selection & preparation, continued Offer to arrange meeting with chosen decision maker to facilitate patient expression of values and goals Provide information on what the role of the decision maker might include, or what decisions may need to be made Encourage decision maker to ask questions; stay involved in patient’s care

36. Advocate for patient wishes Discuss concerns with patient’s interdisciplinary care team Identify need or desires for outside support- spiritual leaders, mental health professionals, palliative care & hospice Facilitate patient family care conferences to assist patient in expressing values and goals To complete a written advance directive

37. Look For Other Modules To Follow! Produced by the ANNA Ethics Committee 2004 With a grant from ANNA In consultation with Linda Briggs, RN, MS, MA Asst. Director Respecting Choices, Gunderson Lutheran Med. Foundation, La Crosse, WI. labriggs@gundluth.org

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