Goals of Care

1. Goals of Care Purpose: Identify types of goals in LTC; goals that reflect the resident’s change of condition, and goals that result from “purposeful conversations.”

2. Objectives • Understand the diversity of residents in LTC and need to individualize; • Appreciate the need for, and know how to develop and change the POC based on the resident’s wishes; • Apply regulatory guidance for EOL in LTC.

3. Individualized Care • LTC facilities have a wide variety of residents, such as: • Physical impairment - Cultural Diversity • Cognitive impairment - Lifestyle Diversity • Behavioral symptoms - Residents in the last • Mental illness in last stages of life • Mental retardation • Young residents • Very old residents

4. Individual Care Plans • Based on individual resident’s strengths, needs, and problems; • Utilizing an interdisciplinary team of experts; • Form the basis of the Resident Assessment Instrument (RAI) required in every Medicare/Medicaid certified facility; and • Revised frequently.

5. The “art and science” of nursing is portrayed at its best in palliative caregiving.

6. Purposeful Observations and Conversations • Staff must recognize subtle changes. • Subtle changes can be difficult and requires purposeful observation of each resident, and • Purposeful conversations with the resident, or responsible party. • Goals of treatment and symptom management change in response to purposeful observations and conversation.

7. Advance Care Planning The more knowledge the interdisciplinary care planning team has about the resident’s value system, the more likely it is to establish a care plan that meets the resident’s needs and allows for appropriate interventions as symptoms change.

8. Defining Quality of Life The Interdisciplinary Team (IDT) should engage in purposeful conversations with residents to ensure that their values and preferences are understood.

9. Ask questions, such as: • As you look into your future, what do you want? • Have you thought about what you would like the last phase of your life to be like? • What will be most important for you during that time?

10. End of life discussions may include: • Cardiopulmonary resuscitation (CPR), • Artificial nutrition and hydration, • Hospital transfer, • Withholding diagnostic tests, • Treatment of existing diagnosis, such as congestive heart failure or osteoporosis.

11. Residents without decision-making ability may require: • Court appointment of legal guardian if no living will, advance directive, or designation of a surrogate; or • If current documents do not provide guidance in a particular situation. • Facility may need to consult an attorney for advise.

12. Ethical Issues Ethical issues related to surrogate decision making are addressed in: Considerations regarding life-prolonging Treatment for residents of Long-Term Care Facilities by Midwest Bioethics Center

13. Shaping Care and Setting Goals The purpose of advance care planning is to allow the resident to help shape the care he or she receives during the last stages of life.

14. The IDT will make better decisions if it has relevant information about: • The resident’s clinical condition and prognosis, and • Personal beliefs and social views.

15. Ethics Case Consultation When situations of conflict arise within the IDT, may be between family members or between professional staff and family members: • Ethics case consultation for mediation; • Facilities can develop ethics committees; • “Long-Term Care Ethics Case Consultation” by Midwest Bioethics Center in conjunction with the Missouri Ombudsman Program.

16. Regulatory Compliance for Advance Directives F156 Related to maintaining written policies and procedures regarding advance directives. Includes provisions to inform and provide written information to all adult residents concerning the right to accept or refuse medical or surgical treatment and form an advance directive.

17. Regulatory Compliance for Advance Directives, cont. F156, cont. This includes a written description of the facility’s policies to implement advance directives and applicable State law.

18. 42 CFR 489.102Hospice Regulation • Provide written information concerning right to formulate advance directive; • Document if a resident has an advance directive in the medical record; • Not to discriminate based on whether or not a patient has an advance directive; • Ensure compliance with State law regarding advance directives;

19. 42 CFR 489.102Hospice Regulation, cont. • Provide for education of staff regarding facility’s policies and procedures on advance directives; • Provide for community education regarding the right under State law to formulate an advance directive and facilities written policies and procedures regarding the implementation of these rights, including any limitations on the basis of conscience.

20. FYI !!!!!!! • The facility is not required to provide care that conflicts with an advance directive. • The facility is not required to implement an advance directive if, as a matter of conscience, the provider CANNOT implement an advance directive and state law allows the provider to conscientiously object.

21. 19 CSR 30-88.010 (9)State Regulation “Prior to or upon admission and at least annually after that, each resident or guardian shall be informed of facility policies regarding provision of emergency and life-sustaining care, of an individual’s right to make treatment decisions and of state laws related to advance directives for health-care decision making.”

22. State Regulation, cont. “If a resident has a written advance health-care directive, a copy shall be placed in the resident’s medical record and reviewed annually with the resident, unless, in the interval, the resident is determined to be incapacitated.”

23. State Regulation, cont. “Resident’s guardian or health care attorneys-in-fact shall be contacted annually to assure their accessibility and understanding of the facilities policies regarding emergency and life-sustaining care.”

24. Goal Setting Categories • Rehabilitation • Maintenance • Prevention • Palliative The IDT should determine the overall goal of care with the resident/legal surrogate.

25. Palliative Care Goals Palliative care becomes an overall goal for the resident during the end stages of life, but specific interventions will be needed to attain an appropriate level of functioning, to maintain the residents highest quality of life, and prevent suffering.

26. Recognize the Need to Revise Goals • Residents who spend years in facilities must have ongoing assessment to determine change of condition and the need to revise goals of care. • The IDT must recognize and discuss the slow decline in the resident with a chronic disease. • The IDT can have purposefulconversations with the resident/responsible party and set realistic goals for resident care.

27. The MDS and Goal Setting Several MDS items help staff recognize the need for decisions about goals, however, the most significant is: Section J5c “end-stage disease, 6 months to live” A doctor’s certification that the resident has six months or less to live must be present in the record before coding the resident as terminal.

28. Other Noteworthy MDS Items: • Section A10 Advance Directives • Section B6. Change in Cognitive Status • Section C7. Change in Communication • Section E3/ E5. Change in Mood/Behavior • Section G9. Change in ADL Status • Section H4. Change in Urinary Continence • Section Q2. Overall Change in Needs

29. Other Noteworthy MDS Items, cont. • Section J1,2,& 5. Problem Conditions, Pain Symptoms, and Stability of Condition • Section K3. Weight Change • Section M1. Pressure Ulcers • Section P1, 5, and 6. Special Treatments and Procedures, Hospital Stay(s), and ER Visits

30. Significant Change in Status Assessment (SCSA) RAI Manual, Version 2002, clarification: “The key in determining if an SCSA is required for individuals with a terminal condition is whether or not the change in condition is an expected well-defined part of the disease course and is consequently being addressed as part of the overall plan of care for the individual.”

31. Complete a SCSA For a newly diagnosed resident with end-stage disease when: - a change is reflected in more than one area of decline; and -the resident’s status will not normally resolve itself, and -resident requires IDT review and/or revision of the plan of care.

32. Complete Subsequent SCSA’s Complete subsequent SCSA’s based on the degree of decline and the impact upon the care plan. Consider the following: -completion of the last MDS; -clinical relevancy and accuracy of the MDS to the resident’s current status; and -the need to change the care plan to reflect current status.

33. Regulatory Compliance forGoals of Care • 19 CSR 30-88.010 (11) – “Each resident shall be afforded the opportunity to participate in the planning of his/her total care and medical treatment, to refuse treatment….” • Federal Regulation – “For the resident to receive the necessary care and services to attain or maintain the highest practicable physical, mental, and psychosocial well-being in accordance with the comprehensive assessment and care plan.”

34. Factors That May Lead toAbuse and Neglect Centers for Medicare and Medicaid Services (CMS) identifies “isolation” as a consistent predictor of abuse and neglect. The resident may become isolated not only because of cognitive and physical dependency, but also because staff may feel inadequate in dealing with the dying resident.

35. Avoidable vs UnavoidableOutcomes • State Operation Manual (SOM) consistently directs the surveyor to determine if negative outcomes are avoidable or unavoidable. • Residents at EOL often have negative outcomes, but they may be avoidable. • Ongoing assessment, care planning, implementation and revision are elements that determine avoidable or unavoidable.

36. Documentation • Purposeful observations and conversations • Information about values and beliefs • Ongoing purposeful observations and conversations and documentation revised to reflect ongoing information. • IDT should amend instruction to caregivers. • Symptoms should be assessed, interventions initiated, and evaluated in documentation.

37. Case Study Mrs. Smith Subsection 2.7 Mrs. Smith “Guidelines for End-of-Life Care in Long-Term Care Facilities”