An Innovative Patient-centered Approach to Improve Advance Care Planning: Catalyzing Patient Decision Making at End-of-Life Helen D. Blank, Ph.D. May 31, 2012 Our Perspective on Advanced Illness Care What the literature has to say about the quality of care . . . . – Patient and Family Centered Outcomes at the End of Life (Teno, JAMA, 2004) – Trends in the Aggressiveness of Cancer Care Near the End of Life (Earle, JCO, 2004) – Family Perspectives on End-of-Life Care at the Last Place of Care (Teno, JAMA, 2004) – Geographic Variation in Hospice Use in the United states in 2002 (Connor, J. Pain & Symptom Mgmt, 2007) – Early Palliative Care for Patients with Metastatic Non-Small –Cell Lung Cancer (Temel, NEJM, 2010) – Ask a Different Question, Get a Different Answer: Why Living Wills are Poor Guides to Care Preferences at the End of Life (Winter, J. of Palliative Medicine, 2010) – Quality of End-of-Life Cancer Care for Medicare Beneficiaries (Goodman, Dartmouth Institute Publication, 2010) – American Society of Clinical Oncology Statement: Toward Individualized Care for Patients With Advanced Cancer (Peppercorn, JCO, 2011) Our Perspective on Advanced Illness Care What the literature has to say about the cost of care . . . . – Medical Care Inconsistent With Patients’ Treatment Goals: Association with 1-year Medicare Resource Use and Survival (Teno, Journal American Geriatric Society, 2002) – Patient and Family Centered Outcomes at the End of Life (Teno, JAMA, 2004) – Health Care Costs in the Last Week of Life Association with End-of-Life Conversations (Zhang, Archives of Internal Medicine, 2009) – Dartmouth Atlas of Health Care (Dartmouth Institute Publication, 2010) – Determinants of Medical Expenditures in the Last 6 Months of Life (Kelley, Annals of Internal Medicine, 2011) – Bending the Cost Curve in Cancer Care (Smith, NEJM, 2011) Our Perspective on Advanced Illness Care What the literature has to say about the process of care . . . . – Cancer Patients’ Roles in Treatment Decisions: Do Characteristics of the Decision Influence Roles? (Keating, JCO, 2010) – Advanced Care Planning and Hospice Enrollment: Who Really Makes the Decision to Enroll? (Hirschman, Journal of Palliative Medicine, 2010) – A Failing Medical Education Model: A Self-Assessment by Physicians at All Levels of training of Ability and Comfort to Deliver Bad News (Orgel, Journal of Palliative Medicine, 2010) – Provider Communication and Patient Understanding of Life-Limiting Illness and Their Relationship to Patient Communication of Treatment Preferences (Wagner, Journal of Pain and Symptom Management, 2010) – Patient-Clinician Communication about End-of-Life Care Topics: Is Anyone Talking to Patients With Chronic Obstructive Pulmonary Disease? (Reinke, Journal of palliative Medicine, 2011) – Informing And Involving Patients To Improve The Quality of Medical Decisions (Fowler, Health Affairs, 2011) Our Belief: Root Cause of Quality and Economic Inefficiencies are the Result of Two Broken Processes The communication and care decision making processes across the key stakeholders during advanced illness are either non existent or dysfunctional What are the potential levers in order to address this issue? Patient Family Payer Physician The Advanced Illness Stakeholder Triad “The data – and my clinical experience – suggest that when patients and doctors spend the time to talk about their values and goals and the likely outcomes of proposed treatments most – but not all – will opt against a trial of all life-prolonging technologies available.” Dr. Sean Morrison, Director NPCRC Our Perspective: The Solution is Elegant, Execution is More Difficult A Solution Catalyze the individual and their family to become more active in their health care communication and decision making processes with their physicians so that decisions are consistent with their life preferences and priorities thereby increasing the quality of care during advanced illness. Why This is Messy • There is no objectively correct answer to… – What constitutes a good quality of life or good priorities while living with advanced illness – What constitutes living well for the individual • Dynamic not Static • There is no consensus regarding what is effective advance care planning • There is no “how to” manual to guide patients in talking about this emotion-laden, taboo subject – Open communication hindered by patient’s own fears, social network, medical environment The Living Well Program: Patient Centered Advance Illness Care Counseling Patient-Centered Counseling • Empowerment • Understanding • Definition of Personal QoL • Internal Motivation Informed Decision Making • Accurate Information • Weigh pros & cons • Care Choices Behavior Change • Counteracts defense mechanisms & environmental inhibitors • Activate participation • Ability to act Purposeful Participation Personalized Care Decision Making Meaningful Process The Living Well Program: Patient Centered Counseling • Behavior Change – Change passivity into activity – Engage in meaningful and ongoing process of end-of-life dialogue with loved ones and medical team – Focused on patient’s priorities, goals, values, and preferences so these are reflected in decision making • Ambivalence & Motivation – Ambivalence is the antithesis of change – Resolving ambivalence is the key to promoting change – Change arises through its relevance to a person’s own values and concerns Behavior Change • Ready, Willing, Able to Change Behavior – See the value of change – Timing is right – Have the confidence to succeed • Readiness Stage Assessment – – – – – • Precontemplation Contemplation Preparation Action Maintenance Stage Based Interventions – Meet the individual where they are – Assist in moving the individual to behavior change Ambivalence & Motivation • Ambivalence – – – – – • Feeling two ways about something Normal process of human nature Competing motivations associated with both sides of conflict Cannot be understood outside the societal context of family, friends, community Getting stuck in ambivalence = no decision or no change Motivation – The likelihood change will occur is strongly influenced by interpersonal interactions • Motivational Interviewing Approach – Originally developed by William R. Miller & Stephen Rollnick for application in addiction field – “A client-centered, directive method for enhancing intrinsic motivation to change by exploring and resolving ambivalence.” – Method of communication (guiding style) rather than a set of techniques – Can not impose change that is inconsistent with the person’s own values and beliefs – Collaborative, Atmosphere of partnership. Not expert clinician/passive patient – Evocative - Resources & motivation reside within the client – Honoring Patient Autonomy The Living Well Program Methodology To catalyze the advanced illness individual to initiate and maintain a dialogue with family and physicians about what may be most important to them in anticipation of their medical situation deteriorating so that these priorities may serve as the basis for shared health care decision making • Driven by the participant self defining and communicating their life priorities during the course of their illness to their family and physicians so that these priorities may serve as the basis of health care decision making • Grounded in Cognitive Behavioral and Patient Centered Counseling Methodologies and Strategies • Developed during 2008-2009 in association with Dr. James Prochaska and Pro-Change Behavioral Systems Inc. Incorporates Prochaska’s Transtheoretical Model of Behavior Change adapted for the specific desired positive behavior and existential context of situation that the participant is experiencing. • Counseling techniques based on Rollick and Miller’s Motivational Interviewing in Health Care work • Goal of the program is process based and independent of the specific decisions and priorities which result from the desired process -Primary program and counselor evaluation metrics based on achieving desired process/behavior The Living Well Program: Key Principles • Understanding of what lies ahead – Planning requires knowledge of disease trajectory – Can’t plan if you don’t know what you are planning for – Personalized trajectory -- best case, worst case, and most likely case • Active Participation by patients, families, physicians – Ready, willing, and able to participate in process – Understanding and acceptance of each individual’s role in the process • Process of evaluation and re-evaluation involving key stakeholders - Recent research suggests that preferences for care are not fixed but emerge from a process of discussion and feedback within the network of the patient's most important relationships • Ongoing communication throughout the illness experience – An approach that emphasizes communication, building trust over time, and working within the patient's most important relationships The Living Well Program: Counseling Methodology Motivation for Change Behavior Change Integrate Priorities into Care Decisions Explore illness experience & identify priorities • Personalization of living/dying • Review of priorities, values, goals • Decision making that supports achievement of goals/priorities Preparation, Re-evaluation, Communication • Planning in advance • Re-evaluation as needed Empowered Patient • Patient-centered counseling to enable personalized illness experience • Motivational interviewing to create empowerment for effective decision making Informed & Prepared Patient • Current Medical Situation • Future Medical Situation Scenarios • Current/Future Care Decisions • Transition Points • Communication Vehicles • Areas of Support Member Identification – Our Initial Models Claims Based Algorithms to Identify Potential Members 9 Months Prior to Death Followed by Outreach Qualification by Counselors Terminal Death Trajectory • AIDS • Cancer 40% of Participants Engagement Zone Healthy Functional Health Status Dead t Chronic Deteriorating 40% of Participants Death Trajectory Engagement • CAD Zone Healthy • CHF Functional • COPD Health • ESRD Status • Liver Disease Dead Value DIAGCD=428.XXX AND >=1 of E0424-E0444, E0460, E0461, E0463E0481 in HCPCSC On Same Row AND SVCDAT After Month-9 AND MBRDOB Before Month-840. Condition must occur at least two times 30+ days apart Dead Value DIAGCD=332.XXX AND >=3 of 99221, 99222, 99223, 99281, 99282, 99283, 99284, 99285 On a Unique SRVCDAT In HCPCSC over a Six Month Interval t 5% of Participants Engagement Zone Healthy Functional Health Status Dead t 15% of Participants Frailty Death Trajectory Engagement • ALS Zone • Dementia Healthy • Parkinson’s Functional Health Status Acute Death Trajectory • Acute Serious Medical Situation • Surgical Complication • Sepsis • Trauma Value DIAGCD=183.XXX AND >60 Day Interval Between Adjacent Values in SVCDAT That Also Contains Specified J Code in HCPCSC On Same Row AND >= 3 DIAGCD=183.XXX After Month-6 t The Living Well Program: Counseling Process Living Well Program Process Modules (conducted over multiple sessions, typically three-five) PAST/CURRENT Introduction & Engagement Client Narrative PAST/CURRENT Eligibility Qualification CURRENT PROJECTED Current Priorities (Setting, Communication & Integration) Transition & Staging Process Precontemplation Client Narrative "What Ifs" Contemplation Preparation "What if" Priorities Scenario-Based (Setting & Communication) Action Refinement of "what if" priorities & preferences; Re-evaluation as changes occur Maintenance EOL Implementation & Decision Making, EOL Advocacy Behavior Stage Based Action Strategies, Plans & Follow Up Behavior Stage Based Action Strategies, Plans & Follow Up Motivational Interviewing Based Techniques Tools Deliverables Scripts and Branching Logic (Conversation Flow) Patient Profile Educational Materials for Patient Call Log Tools & Decision Aids for Patient & Counselor ACP Docs Counseling Workflow Automation Counseling Capability and Resources to Deliver Program • Counselors Experienced in the application of CBT, MI and BM • Understanding and appreciation for the issues specific to end of life counseling as per ACA guidelines • Demonstrated counseling agility and “condensed” counseling application • Personal comfort surrounding the topics of death and dying • Self motivated and high degree of clinical focus and accountability • Proprietary education and training program to optimize quality and consistency of program • Continuous training and supervision • Value of specialization and experience base Counselor Introduction, Eligibility Assessment , Engagement • Goal of initial call is introduction of the program and determine willingness to participate • Clinical interview process to determine eligibility/qualification verification • Potential Outcomes of Initial Call – Client determined to be ineligible – Case Exploration – Eligibility verified and client enrolled in the program • Engagement Interview • Interrelated Intervention Topics – Client understanding of their illness – Communication with important people in their lives – Medical decision making process • Stage of Change Determination The Living Well Program Stages of Change Process Staging Definitions Precontemplation Staging/"what if" discussion initiated and client has given no thought to "what if" priorities/preferences Contemplation Client is thinking about "what if" priorities/preferences, but has made no commitment to "what if" priorities/preferences in relation to future medical decision making Preparation Client has formed and committed to "what if" priorities/preferences but has not communicated these with physician and/or family and has not committed to a communication plan Action Client has committed to communicate with their physician and/or surrogate their well-informed, priority-based, decisions to the "what ifs" given their current medical situation and is able to verbalize a communication plan Maintenance Client has effectively communicated their well-informed, priority-based decisions and enters the process of refinement, re-evaluation, and continued communication of priorities/preferences/decisions as situation changes EOL Advocacy The "what ifs" of the current medical situation are the end-of-life "what ifs." Current medical situation is now including EOL planning/decision making. The "what ifs" have gone from hypothetical to reality. The Living Well Program Organization Vital Decision counselors do not: • Communicate or utilize personal medical information patients have not communicated to them • Provide medical advice • Undermine the medical plan or team • Make choices for the patient or family • Judge the patient’s wishes or choices • Discuss coverage or claims issues • Provide general mental health counseling • “Drop” the member following hospice enrollment Program Infrastructure and Support: Controls • Best Practice, evidence driven methodology based on recognized and accepted academic principles Design • Process goal oriented program, program goal is decision independent • Focused on the self defined intrinsic priorities of the participant and paced to individual’s ability to participate • Promotes alignment and communication among stakeholders driven by the participant and not a third party External Governance Process & Organization • Voluntary participation throughout program • Defined counseling process that is adhered to by counselors and monitored and measured by management • Complete, real time information transparency • Success based on quality improvement measures • Co located counseling organization for quality monitoring and improvement • Utilization of specialized, highly qualified and trained resources • Vital Decisions’ Multi-disciplinary Program Advisory Board - Clinical, Health Care Policy and Bioethical Perspectives • Client Oversight of Program via formal Steering Committee • Independent Agency Evaluation and Recognition Our Value: Impact Analysis Methodologies • Member and Family Member Satisfaction Survey – Satisfaction – Perceived Value – Client Service • Service Utilization and Economic Impact Analysis – Client defined scope, methodologies and implementation resources – Wide ranging – Vital Decisions Preferred Approach: Retrospective, match case controlled analysis examining utilization and spend occurring during the last three months of life Member/Family Survey Results # Satisfaction Surveys Mailed # Satisfaction Survey Responses 1081 246 23% The Vital Decisions program helped me to focus on what is most important to me as I deal with my illness. Median= 4 The Vital Decisions program helped and/or supported me in making decisions regarding my medical care. Median= 4 My Vital Decisions counselor was friendly and courteous. Median= 5 My Vital Decisions counselor was sensitive to my situation. Median= 5 I was satisfied with the service that Vital Decisions provided. Median= 5 I would recommend Vital Decisions to others in similar situations. Median= 5 Scale for Responses 1=Not at all 3=Sometimes 5=Always Comments I expected to have a question and answer session with no real relating and faint interest or direction. She quite surprised me by her in-depth questioning and guidance that I felt I would need to shoulder alone before our conversation. Her counseling was a relief to me. I have never encountered such a warm, pleasant, and refreshing associate in many yrs. I am so glad you have decided to put the human touch back into your company. Nothing makes a person feel better than compassion of another human being. It was easy to talk with my counselor by phone more so then I had expected since I have never met her in person. Interesting way to receive counseling My situation with my husband is ongoing. I appreciate having this service to be able to assist with some very difficult decisions looming ahead. For the first time during the course of my illness, someone took a genuine interest in explaining the delicate topic of possible scenarios that may happen and the choices that are available. As a result of my conversations with Vital Decisions, I was better prepared for any unforeseen circumstances.” Vital Decisions was instrumental in helping me tell my family how to give my mother what she wanted. This was my first experience with a family member who was seriously ill. The counselor was able to help me be strong for my mother when she couldn’t be for herself Economic Impact Analysis Overview ~ Client X and Client Y Client X (Commercial Plans), Client Y (Commercial and MA Plans) Metric Under Examination – Total Medical Cost of Care During the Last Three Months of Life Retrospective Case Matched Control Group of Pre Program Decedents vs. Program Group Decedents Pairs matched based on the following rules Underlying Diagnosis – Required to be exact match Age at Death – Required difference to be ten years or less Medical Spend 4 through 12 months prior to death – Required difference to be $6,000 or less Average Three Month Minimum Cost Difference Probability of a Cost Difference Greater Cost Difference with 95% Confidence Than Zero Client X $28,072 $15,489 99.94% Client Y $22,169 $9,069 99.71% Independent Agency Evaluation & Recognition Vital Decisions Recognized as a Health Management Best Practice in Consumer Empowerment & Protection Washington, D.C. April 9, 2009 – URAC, a leading independent accrediting organization, has announced that a distinguished panel of judges selected Vital Decisions as a Best Practice in Health Care Consumer Empowerment and Protection Awards competition. The competition drew entries from across the nation and represents the best Title: Satisfaction and Care Choices Following a Telephone Consultation Date: Thursday, June 18, 2009 Time: 11:00 AM 03:00 PM Vital Decisions Living Well Program for Individuals with Advanced Illness Receives Award at the 2010 Annual Assembly American Academy of Hospice and Palliative Medicine