Using and Integrating the Serious Illness Conversation Guide

Using and Integrating the Serious Illness Conversation Guide Josh Lakin, MD Justin Sanders, MD Rachelle Bernacki, MD, MS Objectives Describe three steps along a pathway to improve serious illness conversations on a system level Understand your role in improving serious illness conversations List the components of the Serious Illness Conversation Guide Feel confident to try the Serious Illness Conversation Guide with a patient in the next 3 weeks. Plan for the session Reflection The Implementation Roadmap The Serious Illness Conversation Guide Break Skills practice Wrap up 1

What are some of the challenges in implementing a systematic approach to improving SI conversations? Goal: Better Care Where we are now Where we want to be Doing some of the right things some of the time for some of our patients with serious illness Doing all of the right things all of the time for all of our patients with serious illness Serious Illness Care Program Mission: To improve the lives of all people with serious illness by increasing meaningful conversations with their clinicians about their values and priorities 2

The Serious Illness Conversation Guide is a framework for best communication practices Pathway toward improvement How can we do better? Serious Illness Care Program an evidence-based intervention Communication Tools Clinician Training Systems Changes 3

Serious Illness Care Program Implementation (How to achieve More, Earlier, and Better conversations) 1. Screening/Identifying Patients 2. Training Clinicians 3. Patient and Family Support 4. Serious Illness Conversation 5. Documenting Conversations in EHR template 6. Monitoring and Evaluation 7. Coaching Implementation is Really Hard Implementation is a Journey Serious Illness Care Program Implementation Roadmap 4

Enthusiastic Phase 1: Build Foundation Objective: Get the support you need to plan for change 1 2 3 Steps: Form a Workgroup Assess Readiness Engage Leaders & Colleagues Courtship 4 Determine Mission & Goals 5 Recruit Implementation Team 6 Select Pilot Sites (Start Small) Getting Serious 7 Construct Budget 8 Secure Drivers for Program Use Phase 1: Build Foundation Form a Workgroup - Who should be in your workgroup? - Find people who are: Well-respected Interested in efforts to improve conversations Believe that conversations with patients can be improved From multiple disciplines Phase 1: Build Foundation Assess Readiness - What do you need to be ready to implement? Leadership support Resources System capabilities No major competing priorities 5

Phase 1: Build Foundation Engage Leaders and Colleagues - Who needs to be engaged? - How will you engage them to get their support? Face-to-face conversations Start with your friends Don t avoid the skeptics Phase 1: Build Foundation Select pilot site(s) start small Where will you start? Examples: Strong leadership support (physician, nursing, clinic manager) Significant population of seriously ill patients Engaged and motivated clinicians Team model of care Easily aligned (e.g. shared risk contact, staff model) Phase 1: Build Foundation Secure drivers for program use What do people care about? Medicare reimbursement for conversations CME credit for training RVU credit 6

Implementation is a Journey Serious Illness Care Program Implementation Roadmap Phase 2: Plan Implementation Objective: Maximize the impact of clinician training by planning measurement & support systems Workstream 1: Tools Customize the Conversation Guide Workstream 2: Education Identify Trainers Modify the EHR to add template Develop Plan to Train and Coach Clinicians Workstream 3: Systems Change Customize Conversation Workflow Plan for Monitoring & Evaluation Phase 2: Plan Implementation Workstream 1: Tools Customize the Guide Modify the EHR Modify EHR How can we add a serious illness conversation template to the EHR? 7

Phase 2: Plan Implementation Workstream 3: Systems Change Customize Conversation Workflow Plan for Monitoring & Evaluation Customize Clinic Workflow What method will we use to identify high-risk patients? Who will schedule the conversation? How will clinician reminders/triggering be done? Who will prepare the patient for the conversation? How will the conversation be documented and communicated? How will tools be available at the point-of-care? Phase 2: Plan Implementation Workstream 3: Systems Change Customize Conversation Workflow Plan for Monitoring & Evaluation Develop Monitoring and Evaluation Strategy How will we track high-risk patients? How will we track if conversations are happening and are being documented in a template? How will we measure patient and clinician experience? What outcomes will we measure to determine impact? Process Measures: Monitoring Implementation Training % of eligible clinicians trained in the first 6 months Training evaluation % of trained clinicians who rate the training with at least 3 / 4 on the evaluation survey Patient identification Number of screened patients identified as high-risk in the first quarter 8

Process Measures: Monitoring Implementation Conversations % of high-risk patients with a documented conversation within 3 months of being identified Documentation % of conversations documented in the template within 1 week of the discussion Patient deaths Number (%) of high-risk patients who die within a year Outcomes: Quadruple Aim Better population health Every patient, every time Better conversations, experience and outcomes More, earlier, better conversations Reduced anxiety, depression Increased well-being Smarter spending Increased hospice use and length of stay Reduced costs Improved clinician satisfaction To be determined Office [3]1 The Serious Illness Conversation Guide is a framework for best communication practices 9

Slide 27 Office [3]1 Justin Microsoft Office User, 8/15/2017

Set up the conversation Setting up the conversation builds trust, helps patients feel in control, and allows the conversation to begin gently, without scaring the patient Introduce the idea: I d like to talk about what is ahead with your illness and do some thing in advance so that I can make sure we provide you with the care you want. Ask permission: Is this ok? Introduce the benefits: The goal is to make sure that I have all of the information I need about what matters most to you so I can provide you with the care you want, and so I can best support your family if they ever have to make decisions for you. Assess illness understanding and information preferences Illness understanding provides an indication of how realistic the patient is about prognosis and provides the clinician information about how much gentle pushing is needed to prepare the patient for what is ahead What is your understanding now of where you are with your illness? Information preferences guide clinician in titrating information to patient preferences, and helps clinicians feel confident in moving forward with providing prognostic information How much information about what is likely to be ahead would you like from me? Prognosis I want to share with you my understanding of where things are with your illness 1. Time-based prognosis: I wish we were not in this situation, but I m worried that time may be as short as. I m worried that, in terms of time, we may be talking about months to a year. Of course, we don t know for sure, and it could be longer or shorter. 2. Functional prognosis: I hope that this is not the case, but I m worried that things are likely to get more difficult. 3. Unpredictable prognosis: It can be difficult to predict what will happen with your disease. Some people live well for a long time, but others can get very sick very quickly (to the point that they might die.) 10

Allow silence, explore emotion Allow silence immediately after giving prognosis It is therapeutic to give a patient time to process emotions after hearing difficult news. Respond to emotion by naming it and exploring: I can see this is upsetting. Tell me more about what you are feeling. You seem surprised. Tell me about what you were expecting to hear. This is really hard to hear. Tell me what you re thinking about. Explore goals and fears Understanding patient goals helps restore a sense of a positive future and empowerment and also guides clinician recommendations. What are your most important goals if you health situation worsens? What are your biggest fears and worries about the future with your health? -Expressing fears is therapeutic, even if they cannot be fixed. Explore sources of strength Exploring strengths reminds patients of their own resources and supports for coping with their illness. What gives you strength as you think about the future with your illness? 11

Explore unacceptable states, tradeoffs, and family This information guides decisions and care planning and also indicates to the patient that there may be some difficult choices ahead. What situations are so bad that you can t imagine living in that situation? If you become sicker, how much are you willing to go through for the possibility of gaining more time? How much does your family know about your priorities and wishes? Close the conversation 1. Summarize: I ve heard you say that is really important to you. 2. Recommend: Keeping that in mind, and what we know about your illness, I recommend that we. This will help us make sure that your treatment plans reflect what s important to you. - How does this plan seem to you? 3. Affirm commitment: I will do everything I can to help you through this. Document the conversation Document the conversation in the medical record Documentation is a form of communication to the next clinician 12

Key points Listen more than talk Share prognosis using wish/worry or hope/worry language Avoid providing premature reassurance Address patient s emotions Ask about patient values and goals before discussing medical decisions Many fears will arise that cannot be fixed. Talking about them makes them more bearable for the patient. Drills! A Case: Mrs./Mr. Smith is a 64 yo (wo)man with stage IV adenocarcinoma, metastatic to the brain. At the time of diagnosis S/he initially underwent partial lobectomy and adjuvant chemotherapy. After a brief remission, her disease recurred and restaging revealed intracranial disease. Her most recent round of chemotherapy was complicated by severe nausea and profound weakness. S/he has barely tolerated two subsequent dose-reduced cycles and s/he returns to you in follow up to discuss further plans for treatment. Prognosis: you worry that she has less than 6 months to live. Drill #1: The introduction 1) Write down a rationale that you might use to convince your patient of the value of this conversation. 2) With a partner, introduce the conversation using the words on the guide. 3) Partners resist I thought we were going to talk about my medicines. 4) Read the rationale that you wrote down. 5) Switch and repeat 13

Drill #2: Prognosis 1) Write down the prognosis you would deliver to this patient, focusing on either time, function, or uncertainty. 2) With a partner, ask about information preferences using the language on the guide. 3) Partners says I want to know what you think it s important for me to know. 4) Read the prognosis that you wrote down. 5) Switch and repeat. Drill #3: Recommendation You believe the patient is likely to die within 6 months. He has told you that he no longer wants to pursue chemotherapy and would rather focus on being with his family at home. 1) Write down a recommendation statement using the format in the guide. 2) Partners says What do you recommend? 3) Read the recommendation that you wrote down. 4) Switch and repeat. Wrap Up and Next Steps 14

PARTICIPANT GUIDE- Serious Illness Care Program Objectives: Learning the Serious Illness Conversation Guide - Describe the evidence-based benefits of serious illness conversations for patients and families - Describe your role in improving serious illness conversations - List the components of the Serious Illness Conversation Guide - Practice using the Serious Illness Conversation Guide 1

Observation worksheet: For Demonstration and Debriefing While observing the discussion between clinician and patient, please record your observations about what the clinician says and what the patient says for each step in the Notes section: Sets up conversation Explains goal(s) Asks permission Steps Clinician Patient Assesses illness understanding Assesses info preferences Gives prognosis based on information preferences Uses wish / worry language Allows silence for patient to react Names and explores emotions Asks about goals Asks about fears Asks about sources of strength Asks about unacceptable states Asks about tradeoffs Asks about family involvement Summarizes patient goals Makes a recommendation Overall: Talks <50% of the time 2

Instruction Sheet Small group session instructions: 3 role plays o For each role play: 30 minutes to practice the Conversation Guide and debrief Rotate roles so that each person can be a clinician, a patient, and an observer. Clinician role: Lead a discussion with the patient using the Serious Illness Conversation Guide. Please practice using the words as written on the Conversation Guide. Patient role: You will be provided with a script for the patient role. Observer role: Take notes on the Observation Form and engage in a discussion led by the facilitator. A facilitator will be present in your small group to observe, facilitate discussion, and provide feedback. Spend 1 minute at the beginning of each role play to get familiar with your role (clinician, observer) 3

Sample Language SET-UP Introduce the idea o I d like to talk about what is ahead with your illness and do some thinking in advance about what is important to you so that I can make sure we provide you with the care you want. Ask permission o Is this okay? Introduce the benefits o The goal is to make sure that I have all of the information I need about what matters most to you so I can provide you with the care you want, and so I can best support your family if they ever have to make decisions for you. Refer to the Conversation Guide o I m going to be using this Conversation Guide today, just to make sure I don t miss anything important. No decisions today (if relevant) o We don t have to make any decisions today or change the treatment plans we already made. PROGNOSIS Uncertain: o It can be difficult to predict what will happen with your illness. I hope you will continue to live well for a long time but I m worried that you could get sick quickly, and I think it is important to prepare for that possibility. Time: o I wish we were not in this situation, but I am worried that time may be as short as (express as a range, e.g. days to weeks, weeks to months, months to a year). Function: o I hope that this is not the case, but I m worried that this may be as strong as you will feel, and things are likely to get more difficult. 4

Small Group Case: Pancreatic Cancer Clinician Role 52 year-old salesperson Stage IV pancreatic cancer He/she is receiving chemotherapy; 3 months of chemotherapy so far Metastases shrinking on CT Scan Patient is here alone Spouse very involved; 1 adult son Patient returned to work 4 weeks ago Setting: Oncology or primary care office; you know the patient very well *He/She is a candidate for a discussion using the Serious Illness Conversation Guide to understand more about his/her values, goals, and the type of care he/she would want as the illness progresses. As you prepare to meet with Mr./Mrs. Jones, you consider the following: 1. The patient has stage IV pancreatic cancer. 2. Prognosis at this stage is likely months to a year The goal of the discussion today is to explore wishes for future care using the Serious Illness Conversation Guide. The focus should be on values and goals for the months ahead, rather than procedures and treatments. Chemotherapy: Response and Survival Data Fast Fact # 99 http://www.mypcnow.org/#!blank/wwvij Authors: Narendranath Epperla MD, David E Weissman MD 5

Small Group Case: Pancreatic Cancer Patient Role Description Questions How are things going? Set-up is this ok? Understanding: Info Preferences: Resistance: You are not sure you want to engage in the conversation, but you proceed once the clinician reassures you. When you get your prognosis, you are not ready to believe that time is short because you will beat this. Suggested Responses Things are ok, feeling better in the last few weeks. I went back to work last week. I m really feeling ok right now. Do we have to talk about this? Once the clinician explains the goal of the conversation, you say Ok, I understand. Let s talk. I know I have pancreatic cancer and that it spread, so I know it s not good, but I ve been feeling a bit better recently. I want to know everything I can about what s going on. Prognosis: Goals: Fears/Worries: Strengths Function: Tradeoffs: Family Understanding: I m not like everyone else. I m going to beat this. I deal with this by staying positive. Are you really saying I only have that long left to live? Give resistance for 15 seconds. When the clinician aligns with your hopes but explains the need to plan for the future, proceed with the conversation. My son s wife is pregnant; I want to see my grandchild. I was planning to retire in 1 or 2 years and my spouse and I want to travel. In the meantime, I want to spend as much time as I can with my family. Being a burden. Having my spouse see me really sick. Being helpless. Leaving my spouse alone without things being in order. I worry about what happens if the treatment stops working. Supporting my family and knowing I can be there for them. I want to be able to spend time with my family. We love talking over dinner together. I want to be able to think clearly. I don t want to spend any time in a nursing home. My father had a terrible experience in a nursing home. I want to do whatever I can to have time to spend with my family so I can see my grandkid and spend time with my spouse, now that we ll have more time after I retire. I haven t talked with my spouse about my wishes, but now I m wondering if I should. My son and his wife are so busy I don t want to bother them. 6

Small Group Case: Elderly Parkinson s Clinician Role 84 year-old retired high-school teacher Parkinson s disease; medications no longer working as well Two hospitalizations this year; one with an ICU stay due to complications from hip surgery after a fall Worsening balance issues and several falls; decreased appetite Spouse deceased Lives at home in an apartment Two kids live locally; multiple grandchildren Setting: Outpatient clinic; you know the patient very well *He/She is a candidate for a discussion using the Serious Illness Conversation Guide to understand more about his/her values, goals, and the type of care he/she would want as the illness progresses. As you prepare to meet with Mr./Mrs. Brown, you consider the following: Mr./Mrs. B has Parkinson s disease, multiple falls and hospitalizations Prognosis: Given the recent hospitalizations and declining functional status, you are concerned that the patient is at risk for repeated hospitalizations and increasing difficulty managing at home. He/she would therefore benefit from a discussion about his/her goals and priorities for future care. The goal of the discussion today is to explore wishes for future care using the Serious Illness Conversation Guide. The focus should be on values and goals for the months ahead rather than procedures and therapies. 7

Small Group Case: Elderly Parkinson s Patient Role Description: Questions How are things going? Set-up Amenable: You are not sure why this visit with your doctor is different from all the others. When asked though, you are clear about your wishes. Suggested Responses Same old, same old. Ok doc. You and I have known each other a while. Understanding Information Preferences I know this Parkinson s is going to get worse eventually, but I m a fighter and I m doing ok right now. Keep it to the big picture. How much time I ve got left is up to God. Prognostic communication That s not a surprise to me, but there s nothing we can do about it. Goals Fears/Worries Strengths I want to stay in my apartment here. I ve lived here for 5 years and I have good friends here. I moved here to maintain some measure of independence and I want to keep it. It would also be great to see my oldest grandkid go to college. He/she is 15 and reminds me of my spouse. Not being myself. Losing my independence. I don t want to go to a nursing home. Never. I can handle anything. I ve been through a lot. My faith always gets me through. Unacceptable states Tradeoffs I would never want to live if I couldn t take care of myself or use the bathroom on my own. I want to feel like myself and do the things I like to do. I want my dignity. I don t want to make any tradeoffs. No tubes or machines. I saw my wife/husband die in the hospital and I don t want that. Family Understanding I don t want to add to my kids worries. They have their own lives. 8

Small Group Case: Advanced CHF Clinician Role 72 year-old retired barber/hairdresser CHF with EF of 15%, diabetes, osteoarthritis, obese Just been referred for home oxygen Two hospitalizations this year for CHF exacerbation Not a candidate for advanced heart failure therapies Needs help with shopping Difficulty walking two city blocks Married and lives with spouse; adult children do not live locally Setting: Advanced Heart Failure Clinic *He/She is a candidate for a discussion using the Serious Illness Conversation Guide to understand more about his/her values, goals, and the type of care he/she would want as the illnesses progress. As you prepare to meet with Mr./Mrs. Smith, you consider the following: 1. Mr./Mrs. B has advanced CHF and multiple co-morbidities 2. Prognosis: Given the hospitalizations and functional challenges, you estimate his/her prognosis as likely less than 1 year, but death could be sudden and without warning. The goal of the discussion today is to explore wishes for future care using the Serious Illness Conversation Guide. The focus should be on values and goals for the months ahead rather than procedures and treatments. Prognostication In Heart Failure Fast Fact #143 http://www.mypcnow.org/#!blank/fj2d4 Authors: Gary M Reisfeld, MD, George R Wilson MD 9

Small Group Case: Advanced CHF Patient Role Description Questions How are things going? Set-up Understanding Information Preferences Prognostic Communication Goals Emotional: You are scared that things are getting harder than they used to be, like running errands. You are sad and emotional when you hear your prognosis. Suggested Responses I m getting by. Whatever you want doc. You re the boss. I know I have a bad heart and I just don t feel like I used to. Some things are harder than they used to be. My husband/wife has to run errands with me now. I want to know everything. Is that really true? Be sad. Turn away from the clinician and put your head down and hands over your eyes. Re-engage in 15-30 seconds after the clinician allows silence. I ve been feeling weaker but that news is a lot to take in. I know this is important though. I ve been worried about this for a while. I want to be able to play cards with our friends. I want to spend more time with my family. Fears/Worries Strengths Unacceptable states Tradeoffs I worry about suffocating. That happened before I went into the hospital and it was terrifying. I hate feeling more dependent on my spouse and friends. My husband and my friends give me strength. They help me get through. If I couldn t interact with my spouse, I wouldn t want to live like that. That is the most important thing. I m not running marathons or anything so if things get worse physically I d be ok. If going to the hospital means I can feel better when I get short of breath and have more time with my family, I want that. If there comes a time when I m just a vegetable, I wouldn t want to put my spouse through that. Family Understanding I signed the proxy form already; it is my spouse. I don t want to worry the kids about all of this. They re living their lives. 10

Observation worksheet: For Skills Practice While observing the discussion between clinician and patient, please record your observations about what the clinician says and what the patient says for each step in the Notes section: Sets up conversation Explains goal(s) Asks permission Steps Clinician Patient Assesses illness understanding Assesses info preferences Gives prognosis based on information preferences Uses wish / worry language Allows silence for patient to react Names and explores emotions Asks about goals Asks about fears Asks about sources of strength Asks about unacceptable states Asks about tradeoffs Asks about family involvement Summarizes patient goals Makes a recommendation Overall: Talks <50% of the time 11

Observation worksheet: For Skills Practice While observing the discussion between clinician and patient, please record your observations about what the clinician says and what the patient says for each step in the Notes section: Sets up conversation Explains goal(s) Asks permission Steps Clinician Patient Assesses illness understanding Assesses info preferences Gives prognosis based on information preferences Uses wish / worry language Allows silence for patient to react Names and explores emotions Asks about goals Asks about fears Asks about sources of strength Asks about unacceptable states Asks about tradeoffs Asks about family involvement Summarizes patient goals Makes a recommendation Overall: Talks <50% of the time 12

Serious Illness Conversation Guide CONVERSATION FLOW 1. Set up the conversation Introduce purpose Prepare for future decisions Ask permission 2. Assess understanding and preferences 3. Share prognosis Share prognosis Frame as a wish worry, hope...worry statement Allow silence, explore emotion 4. Explore key topics Goals Fears and worries Sources of strength Critical abilities Tradeoffs Family 5. Close the conversation Summarize Make a recommendation Check in with patient Affirm commitment 6. Document your conversation 7. Communicate with key clinicians 2015 Ariadne Labs: A Joint Center for Health Systems Innovation (www.ariadnelabs.org) and Dana-Farber Cancer Institute. Revised April 2017. Licensed under the Creative Commons Attribution- NonCommercial-ShareAlike 4.0 International License, http://creativecommons.org/licenses/by-nc-sa/4.0/ SI-CG 2017-04-18

Serious Illness Conversation Guide PATIENT-TESTED LANGUAGE ASSESS SET UP SHARE CLOSE EXPLORE I d like to talk about what is ahead with your illness and do some thinking in advance about what is important to you so that I can make sure we provide you with the care you want is this okay? What is your understanding now of where you are with your illness? How much information about what is likely to be ahead with your illness would you like from me? I want to share with you my understanding of where things are with your illness... Uncertain: It can be difficult to predict what will happen with your illness. I hope you will continue to live well for a long time but I m worried that you could get sick quickly, and I think it is important to prepare for that possibility. OR Time: I wish we were not in this situation, but I am worried that time may be as short as (express as a range, e.g. days to weeks, weeks to months, months to a year). OR Function: I hope that this is not the case, but I m worried that this may be as strong as you will feel, and things are likely to get more difficult. What are your most important goals if your health situation worsens? What are your biggest fears and worries about the future with your health? What gives you strength as you think about the future with your illness? What abilities are so critical to your life that you can t imagine living without them? If you become sicker, how much are you willing to go through for the possibility of gaining more time? How much does your family know about your priorities and wishes? I ve heard you say that is really important to you. Keeping that in mind, and what we know about your illness, I recommend that we. This will help us make sure that your treatment plans reflect what s important to you. How does this plan seem to you? I will do everything I can to help you through this. 2015 Ariadne Labs: A Joint Center for Health Systems Innovation (www.ariadnelabs.org) and Dana-Farber Cancer Institute. Revised April 2017. Licensed under the Creative Commons Attribution- NonCommercial-ShareAlike 4.0 International License, http://creativecommons.org/licenses/by-nc-sa/4.0/ SI-CG 2017-04-18