1. Establishing Treatment Goals Near End of Life Copyright 2005, The Medical College of Wisconsin, Inc. David Weissman, MD, Kathy Biernat, MS, Judi Rehm End of Life/Palliative Education Resource Center www.eperc.mcw.edu

2. Disclaimer This program provides educational information, this information is not medical advice. Health care providers should exercise their own independent clinical judgment. Some of the information cites the use of a product in dosage, for an indication, or in a manner other than that recommended in the product labeling. Accordingly, the official prescribing information should be consulted before any such product is used.

3. Pause and Reflect … What are the most common goals of care that patients describe as the end of life draws near? How often to you work to have patients describe their goals, prior to discussing treatment options?

4. Module Objectives A.Understand the value of end of life goal setting B.Describe what a physician needs to know about the medical condition, prior to the goal setting discussion C.List 9 steps in the Goal Setting discussion

5. Goal SettingKey Principles All end of life clinical decisions flow from an open discussion with the patient/surrogate about their illness, their prognosis and their future goals. Conversely, without such a discussion, appropriate decisions concerning end of life care cannot be made. The physician must be knowledgeable regarding the illness prior to the discussion: – Prognosis, Treatment options: Risks and Benefits Dont be afraid to use the D word--Dying

6. When Do Treatment Goals Need to be Established? A.Inpatients with new serious or life threatening disease B.Inpatients or outpatients with exacerbation of a chronic illness C.Others: Outpatients with stable chronic disease and healthy outpatients as part of routine Advance Directive discussion* * This module is not intended to address Advance Care discussions in relatively healthy outpatients

7. 1.Prepare for the Goal Setting Discussion A.Decide if the patient is dying – progressive loss of function and/or weight loss despite best medical therapy and/or – requiring increasing medical resources with no improvement in quality of life and/or – the patient has requested no further measures to reverse current or future medical problems (e.g. no antibiotics for the next pneumonia)

8. B. Decide what is medically appropriate – Based on the current medical facts, what current and future medical interventions (tests, procedures, drugs, etc.) do you believe will improve, and which will worsen or provide no benefit, to the patients current condition, in terms of function/quality/time. 1.Prepare for the Goal Setting Discussion (cont)

9. 2. Who Should Participate? A.Decisional Patient or surrogates (legal agent) B.Physician of record C.Others (family, friends, social workers, nurse, chaplain)

10. 3. What Does the Patient Know? Make no assumptions--Determine what the patient/family already knows – What do you understand about your condition? – What have the doctors told you about your (family members) condition? – How do you feel things are going? – Do you think you are dying?

11. 4. Medical Review Present medical information succinctly – Current condition; Expected Course. – Speak slowly, deliberately, clearly – No medical jargon Your cancer is growing, there is no further chemotherapy which can halt the spread of cancer, based on your declining function and weight loss, I believe you are dying This is your third hospitalization for CHF this year, each time we are able to make some improvement in your function, but my sense is that overall, your function is getting worse, you are not able to do as much

12. 5. Reactions, Questions A.Allow silence, give patient/family time to react and ask questions B.Invite questions C.Acknowledge and validate reactions prior to any further discussion

13. 6. Prognostication A.At this point, the most common question patients ask is, How long do I have – Confirm that information is desired: Is there something you would like me to address – If you have a good sense of the prognosis, provide honest information using ranges In general, patients with your condition live anywhere from a few weeks to 2-3 months Its very hard to say with your illness (CHF), but my best estimate is that you have less than one year, and death could come suddenly, with little warning – After you provide information address emotional reaction before continuing discussion

14. B.What if patients dont ask about their prognosis? – It is difficult to do Goal Setting if the issue of how much time, is not addressed. Patients can be prompted by asking them: Has anyone talked to you about time? If yesask what they were told; if their estimate is close to yours, confirm this; if not, tell them your estimate. If noask if they would like to discusssee prior slide. 6. Prognostication (cont )

15. 7. Set Goals A.Inquire about end of life goals: We have discussed that time is short. Knowing that, what is important to you… What do you need/want to do in the time you have left? Typical responses include: – Home – Family – Comfort – Upcoming life events (e.g. wedding anniversary)

16. B.Confirm Goals: So what you are saying is that you want to be home, be free of pain, and would like to live beyond your next wedding anniversary in six weeks, is that correct? 7. Set Goals (cont)

17. 8. Establish a Plan A.Mutually decide with the patient on the steps necessary to achieve the stated goals

18. 8. Establish a Plan (cont) B.Common issues that need discussion at this point include some or all of the following : – Future hospitalizations or ICU visits – Diagnostic tests – DNR status – Artificial hydration/nutrition – Antibiotics or blood products – Home support (Home Hospice) or placement

19. When trying to decide among the various treatment options, a good rule of thumb is that if the test or procedure will not help toward meeting the stated goals, then it should be discontinued or not started. 8. Establish a Plan (cont)

20. C.Confirm Plan To summarize, we have decided that after this course of antibiotics is finished, you will go home with home hospice services, with the plan that you will remain at home unless new problems develop that cannot be managed in the home. You do not want further blood tests or antibiotics. 8. Establish a Plan (cont)

21. 9. Conclusion A.Summarize areas of consensus and disagreement B.Caution against unexpected outcomesthe dying patient does not always die! C.Provide continuity D.Document in the medical record – Who was present, what was decided E.Discuss results w/ other allied health professionals not present

22. Learning Points List 3 new things you learned from this presentation 1. 2. 3.

23. References Approaching death: improving care at the end of life. Committee on care at the end of life, Division of Health Care Services, Institute of Medicine, National Academy of Sciences, 1997. Code of Medical Ethics; Council on Ethical and Judicial Affairs, American Medical Association, 1998-99. AMA council of scientific affairs. Good care of the dying patient. JAMA 1996; 225:476-478. This slide completes this module