Advance Care Planning: Promises, Pitfalls and Practicalities - PowerPoint Presentation

1. Advance Care Planning: Promises, Pitfalls and PracticalitiesPatrick McCruden DBE, MTS, HEC-CKirsten Antonacci Dempsey, MA1

2. AgendaDefining Our TermsPromisesEthical FoundationsHistoryPitfalls and ChallengesResearchPublic Health Approach2

3. I. Defining Our Terms3

4. Participant PollHow many of you believe it is important to have an advance directive?How many of you already have an advance directive?4

5. How do you compare to other Americans?A study from the California State University Institute for Palliative Care found:90% think talking to their doctor about end of life wishes is important, but only 20% have talked to their doctor80% of adults think ACP is important, but only 25% have recorded their wishes89% of doctors think ACP conversations are important and 75% say it’s their responsibility, and 50% report they are uncomfortable having these conversationsCalifornia Health Care Foundation. Final Chapter: Californians’ Attitudes & Experiences with Death & Dying. Available online: http://www.chcf.org/publications/2012/02/final-chapter-death-dying .5

6. Defining Our TermsAdvanced Care Planning (ACP): a process of reflection, discussion, and communication of treatment preferences in the event of future loss of decision-making capacity (DCM). This usually precedes and may lead to an advance directive.Advance Directive (AD): an oral or written statement in which a person declares one’s treatment preferences in the event he/she loses decision-making capacity (DCM).Difference: ACP is a process whereas ADs are documented preferences.6

7. Defining Our TermsLiving Will: a statement of your preferences for medical care if you lose DCM. It becomes effective if you become terminally ill, permanently unconscious or minimally conscious due to brain damage, and will not regain the ability to make decisions.Health Care (HC) Proxy: a legal document that names someone as your proxy (or agent, surrogate) to express your wishes and make health care decisions for you if you lose DCM.Durable Power of Attorney (DPOA): a legal document that designates someone to make medical decisions for you if you lose DCM. It gives that person (called your agent or surrogate) instructions about the types of medical treatment you do and do not want. 7

8. Defining Our TermsPhysician Order for Life-Sustaining Treatment (POLST): a medical order that tells emergency health care professionals what treatments you want to have during a medical emergency. Also called:Medical Order for Life-Sustaining Treatment (MOLST)Physician Orders for Scope of Treatment (POST)Medical Orders for Scope of Treatment (MOST)Names vary by state8

9. Shortcomings of current legislation in many statesLack of clarity regarding verbal appointment of surrogate, legal force of verbal declarations in the absence of written documents or in the face of a contrary written document, and/or how to proceed in the absence of declaration.9

10. Differences between POLST and ADPOLST FormAdvance DirectiveType of DocumentMedical OrderLegal DocumentWho CompletesHealth Care ProfessionalIndividualWho Needs OneSeriously ill or frail (any age)All competent adultsAppoints a SurrogateNoYesWhat is CommunicatedSpecific medical orders for treatment wishes during a medical emergencyGeneral statements about treatment preferences. May help guide treatment plan after a medical emergency.Can EMS UseYesNoEase in LocatingVery easy to find. Patient has original. Copy is in medical record. Copy may be in a Registry (if your state has a Registry).Not very easy to find. Depends on where patient keeps it and if they have told someone where it is, given a copy to a surrogate or to health care professional to put in his/her medical record.Table derived from https://polst.org/polst-and-advance-directives/ under FAQs.10

11. Clarifying Misconceptions Common MisconceptionsTruth of the MatterA patient must have a DNR order to qualify for hospice care.A patient does not need a DNR or DNI order to qualify for hospice. Completing an advance directive one time is enough.Advance care planning is an ongoing process and as such, ADs should be revisited regularly as patient preferences and decision-makers may change.If a patient has a DNR order, it means a patient is not going to receive any care (like antibiotics for example).A DNR order only requests that no CPR efforts are taken if the patient undergoes a cardiac arrest. A patient should still receive antibiotics and other care desired by the patient and recommended to treat or palliate the patient’s condition.11

12. Defining Our TermsEthics is the application of values to behavior.Morals: Often used interchangeably but some people consider morals our internal principles while they view ethics as external.112

13. Questions?13

14. II. Promises14

15. Promises: Values supported by ACPAdvanced Care Planning (ACP): a process of reflection, discussion, and communication of treatment preferences in the event of future loss of decision-making capacity (DCM). This usually precedes and may lead to an advance directive.Autonomy – Health decisions in concert with patients’ values and preferencesSurrogate decision-makers in alignment with patient valuesBeneficence – Rejection of non-beneficial careHaving ACP and ADs for patients eases burden and stress on family and surrogate decision-maker15

16. Promises: Values supported by ACPNon-maleficence – Avoiding “harmful” treatmentJustice – May be a vehicle for greater fairness/justice in health care Stewardship – Responsible use of health care resourcesDecrease spending on unwanted care at end of life16

17. Questions?17

18. III. Ethical Foundations18

19. Ethical FoundationsIf Ethics is the application of values to behavior how do we behave when values conflict?LifeFreedomComfortPeaceSalvationLoveMeaning19

20. Traditional Ethical TheoriesConsequentialist theories – Actions are judged ethically right or wrong based on the consequences.Deontological theories – Actions are judged ethically right or wrong based on adherences to rules, principles, or rationale. Virtue theories – Actions are judged right or wrong based on the character of the actor.Emotivist – Actions are deemed right or wrong based on the feelings of the person who is evaluating.Principlism – Dominant Theory in Bioethics; balances four principles.Examples: Your friend is having an extramarital affair. Physician Assisted Suicide 20

21. Ethical Foundations: The “Big Three” of Morality (Schweder) Autonomy Community Divinity21

22. Religious Exemptions to flu vaccineMost health care organization require vaccinations or evidence of immunity (titers.)Seasonal flu vaccine is also a requirementThink in terms of the “big three”22

23. Participant PollExcluding demonstrable medical reason for being excused: Should health-care workers be allowed to refuse a seasonal flu vaccine?Yes, I think a health care worker should be able to refuse a vaccine for any reason? E.g. “I once got the vaccine and then I got the flu.”I think a health care worker should be able to refuse the vaccine only for a for a bona fide religious belief.I believe health care workers should not be able to refuse vaccines for non-medical reasons..I believe there is another alternative.23

24. Values or Principles in Medical EthicsAutonomyNon-MaleficenceBeneficenceJusticeVeracityPrivacy24

25. Ethical Foundations: Beneficence Vs. Veracity 1961 survey of Physicians treating patients with terminal cancer...78% would not disclose the diagnosis to the patient. 1979 similar survey98% would tell the patient the diagnosis.* JAMA 175 (1961) 1120-8, JAMA 241 (1979): 897-90025

26. Ethical Foundations: Then and NowTraditional Bioethics – upheld beneficence as most important Hippocratic OathCurrent Bioethics – upholds autonomy as most importantTreatment refusalsDNRWithdrawing of life sustaining measures“Wrongful Life” SuitsDemands for Futile TreatmentRejection of Brain Death Determination, e.g. Jahi McMath26

27. Questions?27

28. IV. History28

29. HistoryQuinlan: Right to refuse life sustaining treatment as substituted judgment (1976)Cruzan: Right to refuse life sustaining treatment as evidentiary standard with clear and convincing evidence (1990)Patient Self-Determination Act (PSDA): educate about right to refuse treatment and patient rights, ask upon admission for AD, and have AD policies and procedures available (1991)Schiavo: Reignites interest in ACP and ADs (2005)29

30. PSDA- Direct Result of the Cruzan DecisionCruzan v. Director, Missouri Department of HealthQ. Did the Due Process Clause of the Fourteenth Amendment permit Cruzan's parents to refuse life-sustaining treatment on their daughter's behalf?A. 5-to-4 decision, the Court held that while individuals enjoyed the right to refuse medical treatment under the Due Process Clause, incompetent persons were not able to exercise such rights. Absent "clear and convincing" evidence that Cruzan desired treatment to be withdrawn, the Court found the State of Missouri's actions designed to preserve human life to be constitutional. Because there was no guarantee family members would always act in the best interests of incompetent patients, and because erroneous decisions to withdraw treatment were irreversible, the Court upheld the state's heightened evidentiary requirements.30

31. History: Promises of the PSDAPSDA- December 1, 1991Required hospitals (and SNF, HH, Hospice, HMOs) as part of Medicare COP to:Inquire at admission about the existence of ADDocument the existence of AD in the medical recordMake info available about completing AD commensurate with applicable state lawProvide info about facilities’ willingness to comply with ADConduct staff and community education31

32. History: Pitfalls/Limitations of the PSDALaw does not specify who enquires, thus often delegated to admitting clerksSpecifies inpatient facilities (as well as HH, Hospice, HMO etc.), not physician officesRelies on a patchwork of state AD legislationLittle emphasis on proactive efforts to ACP32

33. Law And EthicsLaws and Regulations can be societal expressions of ethical concepts e.g. EMTALA, HIPAA, PSDA, Informed Consent.Not synonymous: something can be legal and unethical and vice versa. Many important end-of-life decisions serve as legal precedent: Quinlan, Cruzan, Schiavo, Quill.33

34. Law and Ethics: Decision-making for incapacitated patientsCompetent patients have a common-law and constitutional right to refuse treatment.Incompetent patients have the same rights as competent patients; however, the manner in which they are exercised are, of necessity, different.The decision-making process should generally occur in the clinical setting without recourse to the courts.With an incapacitated patient we follow:Conceptual and empirical issuesAdvanced DirectivesSubstitute Judgment StandardBest Interest Standard34

35. Questions?35

36. V. Pitfalls and Challenges36

37. Arkansas Department of Health Advance Directive Form37

38. Pitfalls: The Evidence against Substituted JudgmentPeoples’ preferences regarding life sustaining treatments change over time. Surrogates are not particularly good at predicting patient preferences. Patients want their family members to have input into their decisions regardless of previously stated wishes. J Gen Intern Med. 2008 Sep; 23(9): 1514–1517.38

39. Pitfalls: Case discussionA 67 year old patient, has the “worst headache of his life.”Asks daughter not to call the EMS, but they are called anyway.ICH with significant paralysis (quadriplegia) but intact consciousness.Patient with fluctuating capacity due to injury, sedation, ICU setting, etc.Patient has “Standard Living Will” document referring to terminal condition or permanent unconsciousness and appointing daughter as HC proxy.39

40. Pitfalls: Case discussion, cont.Family states had numerous conversations with patient over the years and he would not want to be kept alive on extended support. Request terminal extubation. Nsgy in agreement and requests palliative care consult.When palliative care physician visits with patient, patient declines terminal extubation and transition to comfort measures.Family is upset and angry; do not believe patient’s current preferences are expressing deeply held values but rather fear, anxiety etc.40

41. Let’s DiscussHow would you approach this case if you were a member of the Ethics Committee? Should the palliative care physician have proceeded? Once the patient becomes incapacitated, transitory or otherwise, then how do we proceed? 41

42. There are challenges but….42

43. VI. Research43

44. Support Study- 1995: A controlled trial to improve care for seriously ill hospitalized patients. The study aimed to understand prognoses and preferences for outcomes and risks of treatments (SUPPORT). Earlier writing of DNR ordersPhysicians’ knowledge of their patients' preferences for CPRNumber of days spent in an ICU before deathPatient reports of moderate or severe painUse of hospital resources44

45. Advance Directives and Outcomes of Surrogate Decision Making before Death, 2010 Between 2000 and 2006, many elderly Americans needed decision making near the end of life at a time when most lacked the capacity to make decisions. “Patients who had prepared advance directives received care that was strongly associated with their preferences. These findings support the continued use of advance directives.” N Engl J Med. 2010; 362:1211-1218.45

46. Associations Between End-of-Life Discussions, Patient Mental Health, Medical Care Near Death, and Caregiver Bereavement AdjustmentThere was no impact on each of these key outcome measures:Physicians’ knowledge of their patients’ preferences for CPREarlier writing of DNR ordersNumber of days spent in an ICU before deathPatient reports of moderate or severe painUse of hospital resourcesJAMA. 2008;300(14):1665-1673. doi:10.1001/jama.300.14.1665.46

47. Trends in Advance Care Planning in Patients with Cancer 2000-2012CONCLUSIONS AND RELEVANCE Use of DPOA increased significantly between 2000 and 2012 but was not associated with EOL care decisions. Importantly, there was no growth in key ACP domains such as discussions of care preferences. Efforts that bolster communication of EOL care preferences and also incorporate surrogate decision makers are critically needed to ensure receipt of goal-concordant care. JAMA Oncol. 2015 Aug;1(5):601-847

48. Questions?48

49. 4949

50. VII. Public Health Approach50

51. Public Health (PH) Approach to ACPWhat is it?A public health approach engages organizations (secular, religious, for-profit, non-for-profit, schools, community centers, etc.) in local communities to be involved in ACP education and conversation.ACP meets criteria that define a public health issueAffects a large number of peopleCan reduce unwanted, futile, and expensive treatmentCan meet public demand to change the way care has been addressed in the pastDeath literacy is a public health concernKnowledge or skills that help persons access, understand, and act upon end-of-life and death care options51

52. Support for a Public Health ApproachCenters for Disease Control and Prevention (CDC)Recognizes PH opportunity to educate Americans, especially older adults, about ACP to improve their quality of care at the end of lifeInstitute of Medicine (IOM) Called for public health view and engagement in IOM’s 2014 Fifth Report on end of life issues, “Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life”52

53. Public Health ApproachBenefitsMove the conversation about ACP upstream in the domain of a broader death education contextCan lead to improved quality of communication and care at the end of lifePrevent unwanted treatment and confirm wanted treatmentImprove comfort and decrease stress of family, friends, and agents of patients53

54. Public Health ApproachWhat types of organizations might be engaged in a public health approach? 54

55. Venues for Public Education & Discussion on ACPChurches, synagogues, temples, & other places of worship (and their leaders)Service clubs (Rotary International, Kiwanis, Lions)Local public library forumsGirl Scouts and Boy Scouts of America meetings (merit badges – e.g., public health, family life, communication)Book ClubsSenior CentersLocal fitness centersBarber shops / beauty salonsHigh school curricula (http://www.dyingmatters.org)Undergraduate courses Death cafes (http://www.deathcafe.com)Employer wellness programsProgressive dinners / Death Over Dinner (http://deathoverdinner.org)National Healthcare Decisions Day (http://www.nhdd.org)County/state fairsCoalition education efforts [Gateway End of Life Coalition, Coalition to Transform Advanced Care (C-TAC), Respecting Choices, The Conversation Project]55

56. Public Health ApproachChallengesMaintaining cultural sensitivity In educational materials, language used, attention to religious concerns, etc.Mistrust from some African American and minority groupsFunding and personnel resourcesCommunity supportTraining of educatorsDesigning educational materials5656

57. Public Health ApproachStudy on Differences in Quality of Physician-Patient Relationship Among Terminally Ill African American and White PatientsAfrican Americans reported significantly lower quality ratingsPatient trusts the physicianPhysician respects the patientPhysician tells bad news in a sensitive and caring mannerPhysician listens to what the patient has to say about illnessPatient participates in decisions about carePhysician helps the patient with the medical systemAfrican Americans were Less likely to have an ACPMore likely to prefer CPR and dialysis JGIM. 2007. 22(11): 1579-82. doi: 10.1007/s11606-007-0370-6.57

58. Public Health ApproachStudy on Understanding Mistrust about Research ParticipationInterviewed participants (N = 70) and examined feedback on reasons for mistrustBarriersMistrust of researchers and the health care systemFear related to research participationInadequate information about research and opportunitiesInconvenience and logistical concernsQuestionable reputation of researcher or research institutionNo benefit to African American communityRecent examples of racism or discriminationJHCPU. 2010. 21(3): 879-897. doi: https://doi.org/10.1353/hpu.0.0323 58

59. Public Health ApproachStudy on Understanding Mistrust about Research Participation (cont.)Possible Strategies to ImproveCreate community advisory boardsDeliver culturally designed education programsPartner with community-based organizations serving the African American communityImprove access to clinical care and support servicesJHCPU. 2010. 21(3): 879-897. doi: https://doi.org/10.1353/hpu.0.0323 59

60. Public Health (PH) ApproachConcernsCost saving by encouraging patients to forego LST (i.e. Death panels)Communities that distrust medicineRealitiesGoal is to respect patient wishes (whether for or against LST)Study results show no difference in survival rates of patients with ACP and without ACP (BMJ. 2010: 340:c1345.)60

61. Suggestions to Encourage ACP ConversationsProvide training to equip practitioners with tools and skills to have effective ACP conversations with patients.Reimburse health care practitioners for ACP with patients with life-limiting illnesses. (AANP Nursing Outlook. 2012; 60: 418-419.)This is manifested in the Medicare BenefitWent into effect January 1, 2016 under the Affordable Care Act61

62. Medicare Benefit – for patientsMedicare Part B covers voluntary ACP as part of a patient’s annual wellness visit (AWV)If part of an AWV, patient pays nothingIf part of medical treatment in a hospital, patient pays Part B deductible and coinsuranceMed Part B: https://www.medicare.gov/coverage/advance-care-planning62

63. Medicare Benefit – for physiciansCPT CodesMedicare PaysBilling Code Descriptors99497(When part of AWV)$86 for 30min. $75 for add. 30minAdvance care planning including the explanation and discussion of advance directives such as standard forms (with completion of such forms, when performed), by the physician or other qualified health care professional; first 30 minutes, face-to-face with the patient, family member(s), and/or surrogate.99498(When part of medical treatment in a hospital)$80 for 30 min.$75 for add. 30minAdvance care planning including the explanation and discussion of advance directives such as standard forms (with completion of such forms, when performed), by the physician or other qualified health care professional; each additional 30 minutes (List separately in addition to code for primary procedure).Coding: https://www.cms.gov/Outreach-and-Education/Medicare-Learning-Network-MLN/MLNProducts/Downloads/AdvanceCarePlanning.pdf 63

64. Advance Directive Case Discussion: Sometimes even a DPOHC doesn’t helpAn 84 year old patient admitted with pneumonia and sepsis.Patient lives at home with adult daughter, adult son lives in another state.Patient fails to improve and in fact deteriorates with multiple organ system failures.Daughter who lives with patient continues to insist on aggressive care.64

65. Sunday afternoon ethics consultStaff had been unable to reach Daughter since Monday. Son was called late in the week to assist with care decisions.Son arrived Saturday, produced DPOAHC from out of state signed 3 years previous appointing him as proxy.Son visits with medical team Sunday morning and requests discontinuation of aggressive support. Medical team in agreement and patient is extubated and transitioned to comfort measures. Attempts to reach daughter unsuccessful. Daughter 1 calls late Sunday afternoon and states had been incapacitated after a MVA and she had been recuperating at home unable to answer the phone. 65

66. Sunday afternoon ethics consult (cont.)Receives update on change in her mother’s treatment and becomes very upset.Requests immediate reinstatement of LST.Comes to the hospital with a state specific DPOAHC signed after the previous document. Medical team believes reinstituting LST would be non-beneficial given that the patient has been off support for several hours.How to proceed?66

67. Gundersen Health SystemLa Crosse, WIClinical Ethicist, Bud HammesConsulted frequently for end of life questions and conflictsNoticed patients were often older and had prolonged periods of worsening health so there was ample opportunity to engage patients in ACPDeveloped “If I Only Knew” program in responseTo provide a comprehensive, organized system of educating nurses to facilitate conversations with dialysis patients and familiesFirst implemented in a dialysis unit with 60 patientsIn one year, number of patients with ADs doubled https://respectingchoices.org/about-us/history-of-respecting-choices/67

68. Gundersen Health System: Respecting ChoicesRespecting Choices, 1990sGundersen wanted to do this in the whole communityMulti-faceted programTrain facilitators (usually nurses)Develop organizational policies on ACPCreate patient engagement materialsDesign medical record systemsADs easy to upload, find, and make copiesNot integrated with other health systems Educate physiciansEducate community in local centers (libraries, schools, etc.)Offered first facilitator education program in 1993https://respectingchoices.org/about-us/history-of-respecting-choices/68

69. Gundersen Health System: Respecting ChoicesACP, as defined by Respecting Choices (RC): a person-centered, ongoing process of communication that facilitates individuals’ understanding, reflection and discussion of their goals, values and preferences for future healthcare decisions.Five PromisesWe will initiate the conversationWe will provide assistance with ACPWe will make sure plans are clearWe will maintain and retrieve plansWe will appropriately follow planshttps://respectingchoices.org/about-us/history-of-respecting-choices/69

70. Gundersen Health System: Respecting ChoicesLa Crosse Advance Directive Study (LADS I), 1995-6Studied all adult La Crosse County residents who died under the care of any health organization in La Crosse (N = 540)Findings85% of decedents had a written AD98% of cases preferences to forgo treatment were consistent with treatments providedArch Intern Med. 1998. 158:383-390.La Crosse Advance Directive Study (LADS II), 2007-8Mirrored earlier study (N = 400)Findings90% of decedents had a written AD99% of cases preferences for or against treatment were consistent with treatments providedJAGS. 2010. 58:1249-1255. doi: 10.1111/j.1532-5415.2010.02956.x.70

71. Gundersen Health System: Respecting ChoicesOutcomes: Improves patient careEnd of life wishes are known and respected (Arch Intern Med. 1998. 158(4):383-390; BMJ. 2010: 340:c1345; JAGS. 2010. 58(7): 1249-1255.)Ensures ACP plans are clear and available to healthcare providers (Arch Intern Med. 1998. 158(4):383-390; JAGS. 2010. 58(7):1249-1255; JPM. 2012. 15(1):1-9. doi:10.1089/jpm.2011.0178.)Families of patients who died are more satisfied with care and show fewer symptoms of posttraumatic stress, depression, or anxiety (BMJ. 2010: 340:c1345; JAMA. 2008. 300(14):1665-1673.)Facilitates individualized, person-centered planning discussions in a consistent and standardized manner across all care settings (JPM. 2011. 14(11):1224-1230.)Results in high satisfaction with hospital care in general (JAGS. 2012. 60(5): 946-950. doi:10.1111/j.1532-5415.2012.03917.x; BMJ. 2010: 340:c1345.)Increases prevalence of planning in racially, ethnically and culturally diverse communities (Pediat. 2009. 123(2):199-206; JPM. 2009. 12(4):363-372; JAMA Pediat. 2013. 167(5):460-467; J Adoles Health. 2014. 54(6):1-8; Deutsches Arzteblatt Internat. 2014. 111(4):50-57; JPM 2014. 17(3):282-287. doi: 10.1089/jpm.2013.0047.)Increases surrogate’s understanding of patient’s goals of care (JAGS. 2010. 58(7):1233-1240.)Decreases decisional conflict (BMJ. 2010: 340:c1345.)71

72. Gundersen Health System: Respecting ChoicesOutcomes: Improves population healthImproves prevalence of written ADs (Arch Intern Med. 1998. 158(4):383-390; JAGS. 2010. 58(7):1249-1255; JPM. 2012. 15(1):1-9. doi:10.1089/jpm.2011.0178.)Integrates ACP throughout the community (Arch Intern Med. 1998. 158(4):383-390; JAGS. 2010. 58(7):1249-1255; JPM. 2012. 15(1):1-9. doi:10.1089/jpm.2011.0178.)Increases hospice use at end of life (JPM. 2011. 14(11):1224-1230; JAMA. 2008. 300(14):1665-1673.)Increases hospital CPR success (alive at discharge) while decreasing CPR prevalence with associated poor outcomes (AAHPM and HPNA 2011 Annual Assembly. 2011.)Increases number of ADs naming an appointed surrogate decision maker (Arch Intern Med. 1998. 158(4):383-390; BMJ. 2010: 340:c1345)72

73. Gundersen Health System: Respecting ChoicesOutcomes: Reduces healthcare costsFor each dollar spent on ACP the cost of healthcare is reduced by $2. The ROI is $1 for every dollar spent. (Arch Inter Med. 1998; 158(4): 1249-1255; JAMA. 2000; 283(11): 1437-1444.)Reduces unwanted hospitalizations Reduces costs of care in last two years of life due to elimination of unwanted treatment Reduces hospital deathsReduces percent of decedents seeing 10 or more different physicians during last six months of lifeReduces percent of decedents spending seven or more days in ICU/CCU during last six months of life(The Dartmouth Atlas of Healthcare. 2014. http://www.dartmouthatlas.org/data/topic/topic.aspx?cat=1.)73

74. Respecting Choices – Beyond La Crosse, WIBy 1999, Gundersen revised local RC materials for a national audienceToday, RC has trained instructors and facilities in many states74

75. Respecting Choices – Beyondthe U.S.A.Linda Briggs, critical care nurse and clinical ethicist, developed curriculum for an international audienceThe RC program was implemented in…Australia, 2002 Canada, 2004Germany for a research project, 2007Singapore, 2009RC is continuing its work as an affiliate of the Coalition to Transform Advance Care (C-TAC) 7575

76. AIM 1.0 in Sutter Health, Sacramento, CAIn 1998, Sutter Care at Home (then Sutter VNA and Hospice) developed a home-based interventionChanged name to Advance Illness Management (AIM) to avoid association with dying that plagued hospice and palliative care Narrower focus for ACPGeared for patients with life-limiting / advanced illnessesPatients eligible for home healthIn 2003, AIM was implemented in largest home health branchTaught nurses and social workers to help patients and families with ACP, provide info about hospice, and emphasize pain and symptom managementBy 2006, found significant increases in hospice enrollment ratesIn 2007, AIM expanded to all 9 branches within SutterBy 2012, over 7,000 people enrolled in AIM 1.0 in northern CABrad Stuart. “Advanced Care: Choice, Comfort, and Control for the Seriously Ill.” In The Right Care When It Matters Most. Eds. Bernard J. Hammes and Gundersen Health System. Washington, DC: CHT Press, 2012.7676

77. AIM 2.0In 2009-2010, upgraded AIM to AIM 2.0 Open to all patients with advanced illness regardless of home health eligibility Spread to all physician groups and hospitals affiliated with Sutter HealthAIM 2.0 ObjectivesReduce emergency and hospital useReduce physician burdenMore robust palliative outcomesIncrease patient/family/caregiver engagementMove primary site of care out of hospital and into patient’s residence“Advanced Care: Choice, Comfort, and Control for the Seriously Ill.” In The Right Care When It Matters Most. 7777

78. AIM 2.0AIM Care CoordinatorsInterfaced with hospitalists, inpatient palliative care teams, ED staff, case managers, and discharge plannersAssessed patients for risk of readmission and enrolled high-risk patients in AIMImplemented transition protocols to prep patients and families for discharge and start education and planning for home careAIM Care ManagersEmbedded in physician group practicesConsult doctors and clinicians about patients and provide telephone management“Advanced Care: Choice, Comfort, and Control for the Seriously Ill.” In The Right Care When It Matters Most. 7878

79. AIM 2.0AIM 2.0 Care Processes in the Home were StandardizedAssess and self-manage red flag symptoms (signals need for hospitalization)Assess and treat depressionReconcile and manage medicationCoordinate follow-up visitsConduct advance care planning, including POLST formsMaintaining personal health records“Advanced Care: Choice, Comfort, and Control for the Seriously Ill.” In The Right Care When It Matters Most. 79

80. Impact of AIM 2.0Reduced hospitalizationReduced physician visitsIncreased rates of patients with POLST formsIncreased enrollment in hospiceHospitals, doctors, and home-based services save ~$90/month for each person enrolled in AIMPayers, especially Medicare, save ~$1250/month for each enrollee in AIM“Advanced Care: Choice, Comfort, and Control for the Seriously Ill.” In The Right Care When It Matters Most. 80

81. Obstacles to a Public Health or Community-Based Approach to ACPCostDedicated personnel for ACP conversationsTraining of personnelCreation of educational materials Resources for marketing and advertisingIntegrated technology to record ADsQuality improvement effortsCommunity engagementNormalizing ACP involves collaboration throughout whole communityInvolving local leaders requires educationNegative perceptions toward ACP81

82. Overcoming the ObstaclesStart small (i.e. one dialysis unit)Transition from fee for service to values-based payment models (Ex: ACOs)Engage existing organizations/coalitionsUtilize existing educational materialsTalk and learn from successful ACP programsGrass-roots effortsYou!Advocacy in your current roles (in church / synagogue, professional role, gym, care centers for family members / friends, etc.)82

83. Questions?83

84. ReferencesResearch & ContentReferences noted on slides throughout presentationImagesDictionaries from: https://www.weeklystandard.com/david-skinner/the-american-heritage-dictionary-usage-panel-defining-characteristic-the-dictionary-and-us Ethics image from: https://www.ualr.edu/vspillai/EthicsHome.html Promises image from: https://www.tomorrowsworld.org/commentary/do-you-believe-in-promises Hospital room image from: https://www.nytimes.com/2015/03/17/health/the-trouble-with-advance-directives.html Living will image from: https://www.neurologyadvisor.com/topics/neurodegenerative-diseases/advance-directives-for-dementia-honoring-patient-wishes-when-you-dont-know-what-they-are/ Throw baby out with bathwater from: https://wordhistories.net/2018/11/23/throw-baby-bathwater/ Pull the plug comic from: https://www.nhdd.org/blog/tag/advance+care+planning Driving AD comic from: https://www.everplans.com/articles/a-comic-about-advance-directives-and-end-of-life-planning-almost-funny Break time meme from: https://www.memesmonkey.com/topic/break+time Public health image from: https://www.colorado.gov/pacific/townofrangely/public-health-1 Respecting Choices map from: https://respectingchoices.org/wp-content/uploads/2017/07/US_map-1.jpg Question marks from: https://stmed.net/wallpaper-26662 85

85. The End.Now go complete your advance directives and help others do the same!Thank you!Patrick McCruden DBE, MTS, HEC-CKirsten Antonacci Dempsey, MA84