key: cord-0795500-4ou2fbm2 authors: Paladino, Joanna; Mitchell, Suzanne; Mohta, Namita; Lakin, Joshua R.; Downey, Nora; Fromme, Erik K.; Gullo, Sue; Benjamin, Evan; Sanders, Justin J. title: Communication Tools to Support Advance Care Planning and Hospital Care Amidst the Covid-19 Pandemic: A Design Process date: 2020-10-24 journal: Jt Comm J Qual Patient Saf DOI: 10.1016/j.jcjq.2020.10.005 sha: 07de22ffe3f30ca97612994fabf39ae643a2e850 doc_id: 795500 cord_uid: 4ou2fbm2 The Covid-19 pandemic has exposed the medical and social vulnerability of an unprecedented number of people. Consequently, there has never been a more important time for clinicians to engage patients in advance care planning (ACP) discussions about their goals, values, and preferences in the event of critical illness. Health systems and expert organizations have sought to rapidly mobilize resources to support ACP as a critical focus of quality and safety efforts in the early days of this pandemic. We adapted an evidence-based structured communication tool, the Serious Illness Conversation Guide (SICG), to address Covid-related ACP challenges. A user-centered design process utilized feedback from a diverse group of key external stakeholders to develop Covid-19-specific structured ACP tools for ambulatory and acute care settings. Three themes derived from their feedback shaped communication content: sharing risk about Covid-19-related critical illness; engaging in care planning and life-sustaining treatment decisions; and maintaining person-centered language to foster relationships and elicit what matters most to patients. To address communication barriers related to Covid-19 - including use of personal protective equipment and virtual visit technologies that can constrain empathic communication techniques often associated with in-person communication - we developed implementation guidance for clinicians to prepare for conversations. Access to well-designed communication tools and implementation strategies during stressful times can equip clinicians to foster connection with patients and promote shared decision-making. While not an antidote to this crisis, such high-quality ACP may be one of the most powerful tools we have to prevent or ameliorate suffering due to Covid-19. The Covid-19 pandemic has exposed the medical and social vulnerability of an unprecedented number of people. Consequently, there has never been a more important time for clinicians to engage patients in advance care planning (ACP) discussions about their goals, values, and preferences in the event of critical illness. Health systems and expert organizations have sought to rapidly mobilize resources to support ACP as a critical focus of quality and safety efforts in the early days of this pandemic. We adapted an evidence-based structured communication tool, the Serious Illness Conversation Guide (SICG), to address Covid-related ACP challenges. A user-centered design process utilized feedback from a diverse group of key external stakeholders to develop Covid-19-specific structured ACP tools for ambulatory and acute care settings. Three guidance for clinicians to prepare for conversations. Access to well-designed communication tools and implementation strategies during stressful times can equip clinicians to foster connection with patients and promote shared decision-making. While not an antidote to this crisis, such high-quality ACP may be one of the most powerful tools we have to prevent or ameliorate suffering due to Covid-19. The COVID-19 pandemic has exposed the medical and social vulnerability of an unprecedented number of people in the United States and globally. Rapidly evolving epidemiologic and prognostic information about the coronavirus has heightened uncertainty about its potential effect on individuals, creating a need for high-quality communication between clinicians, patients, and families. A sense of urgency has emerged for clinical communication about risk or prognosis related to Covid-19 and elicitation of patients" personal values and priorities to guide current or future medical decisions ("advance care planning, or ACP"). [1] [2] [3] [4] ACP can improve patient well-being, experience, and quality of care by aligning care with what matters most to patients and avoiding burdensome and unwanted treatments at the end of life. [5] [6] [7] [8] [9] [10] [11] Given the speed with which the virus is spreading, uncertainty around its short and long-term consequences, and the disproportionate negative impact on specific populations (e.g. older adults, patients with underlying medical conditions, and persons of color), 12 we face an enormous volume of patients who would benefit from empathic ACP conversations with their clinical teams. Unfortunately, health systems often struggle to reliably deliver such communication to patients who would benefit. On average, fewer than one-third of patients with serious illness have these conversations or do so too late in the course of illness (e.g. last weeks of life) to make a difference. [13] [14] [15] [16] [17] In addition, when discussions do occur, inconsistent and inaccessible documentation of patients" preferences may result in medical errors characterized by patients receiving treatments that poorly reflect their known goals and wishes. 18, 19 This urgent need for high quality, well-documented ACP conversations during the Covid-19 pandemic calls for rapid mobilization of innovative and flexible approaches to ensure that patients and families receive care aligned with their values and preferences. Numerous interventions exist to close the quality gap, including clinician training programs and communication tools. 7, 8, [20] [21] [22] [23] Our team has spent the last nine years designing, testing, and scaling one evidence-based program, which is centered around a Serious Illness Conversation Guide (SICG, or Guide). 1, 24 Studies of program implementation demonstrate more, earlier, and better conversations, positive patient and clinician experiences, improvements in patient anxiety and depression, and lower healthcare expenses at the end of life. 7, 8, [25] [26] [27] [28] We adapted the SICG to meet the unique communication needs of patients, families, and clinicians during the time of Covid-19. We employed a user-centered design approach by engaging a diverse group of stakeholders to develop the tools. This manuscript describes the tool development strategy, the themes that emerged from stakeholder engagement, and the two communication guides that resulted from this process, which clinicians have put to immediate use in the inpatient and outpatient clinical settings. We sought to identify the unique challenges of communication for patients, families, and clinicians during the Covid-19 pandemic and how they might be addressed using adaptations of existing tools. For that reason, we engaged in a user-centered design approach that balanced the need for rigor and structure with expediency. Over a 3-week period in March and April 2020, we employed the following steps ( Figure 1 4. We incorporated input from end-user experience in which clinicians used the communication tools with patients or families. We also tested and refined the tools in simulated encounters with patient actors. Throughout this process, we held regular meetings among the design team to create and iterate the prototypes, incorporate feedback, resolve tensions, and finalize design changes. For a complete understanding of the iterative process to create the sharable versions of the Guides, please see supplemental Table 1 . Conversation Guide for Outpatient Care equips clinicians to proactively reach out to patients in the community with underlying health conditions who are at higher risk of serious complications should they contract Covid-19. 32 The tool supports clinicians to ask patients about protective measures, share risk related to Covid-19, elicit what would be important to them should they become critically ill, invite patients to identify a trusted decision-maker, and create a care plan based on patient priorities and preferences. The COVID-19 Conversation Guide for Inpatient Care equips clinicians to have ACP conversations with any patient admitted to the hospital with confirmed or suspected Covid-19 (or their families). The tool invites patients to identify a trusted decision-maker, emphasizes patients" values, priorities, and preferences so clinicians can honor them, and informs decision-making about life sustaining treatments. The design team agreed to adhere to guiding principles to develop the tools, including: 1) Conversations retain the purpose of ensuring that care plans and treatment decisions align with what matters most to patients; 2) The language and content include high quality communication techniques and hew closely to the evidence-based structure and flow of the Serious Illness Conversation Guide, which is psychologically informed to create safety and build trust; 3) The tool is concise (one-page), adaptable, and uses simple and relatable language. Based on these guiding principles, the team created prototypes of the outpatient and inpatient guides that retained the structure of the original SICG, including: setting up the conversation, assessing the patient"s worries and current understanding of their illness, sharing information about what may be ahead, exploring values, priorities, and preferences, and closing the conversation by making a recommendation and reaffirming commitment to care. 24, 33 We received feedback from expert reviewers on the initial protypes in response to structured questions that assessed the language of the Guide for clarity and simplicity and the utility and clinical relevance of its element. We analyzed this feedback to identify key themes. Reviewers raised the importance of acknowledging uncertainty when sharing information about risks related to COVID-19 infection. While patients with underlying conditions are at higher risk of poor outcomes, many patients recover from the infection. Yet even young and healthy people are known to get very sick quickly and die from the virus. This reality creates the need to normalize ACP conversations such that they reach a broader population of patients. Questions also arose about how comprehensive to be with regard to sharing information. For example: several reviewers felt that patients in the community at high risk, even those who do not have the infection, need to know that they have a higher risk of developing acute respiratory distress syndrome (ARDS) should they get critically ill from Covid-19, which carries a poor prognosis. 32, 34, 35 For hospitalized patients with underlying conditions, several reviewers felt that specific information about the experience of being on a ventilator for Covid-ARDS should be shared, such as a potentially long ventilator and intensive care unit course and a potentially high likelihood of dying and/or experiencing post-acute disability. Given the themes raised, we based our adaptations on the following principles and evidence (Box 1a and 1b): 1) Patients and families often want information about the future with their health, even if it is uncertain; [36] [37] [38] 2) Sharing too much information (including too many medical details), too little information, or vague information may increase patient anxiety and may not be helpful in making decisions; 39, 40 3) Sharing information with compassionate language builds trust and helps manage anxiety when receiving difficult news. [41] [42] [43] [44] Sharing information about risk from COVID-19 in the outpatient setting: "Most people who get the coronavirus get better on their own. However, people who are older or have other health problems like yours can get very sick and may not survive. The treatments that we use to try to help people live, like breathing machines, may not work. If they do work, recovery from the illness is uncertain." [Pause, respond to emotion]. "We really hope that you don"t get the virus, but it is important to prepare in case you do." "Given your [medical condition]/age, I"d like to think together about what would be important to you if you became very sick and couldn"t speak for yourself." Sharing information about risk from COVID-19 in the inpatient setting: "Many people will recover from this infection. We will do everything we can to help you recover. As you"ve probably heard, some people get so sick that they do not survive. First, the speed with which some which patients get critically ill created a sense of urgency around making decisions about cardiopulmonary resuscitation or ventilation. For the outpatient guide, for example, several reviewers recommended including a prompt to complete a form with the patient (e.g. Physician Orders for Life-Sustaining Treatments (POLST)) 45 or to document a code status. Others felt inclusion of these elements on the outpatient tool reflected a rush to life or death decisions for patients in the community who do not currently have the virus and may not be ready to make such decisions. Several reviewers also expressed worries that the looming threat of crisis standards of care (e.g. ventilator shortages and the need for resource allocation) 46- Third, ensuring that patients were asked about involvement of their loved ones in these conversations and decisions emerged as a priority in both inpatient and outpatient conversations. Conversations that are not communicated with friends and family can trigger conflict and add additional burdens if they are caught off guard by unexpected treatment decisions. 56, 57 Given the issues raised, we based our adaptations on the following principles and best practices (Box 2a and 2b): 1) The content of the recommendation should be neutral so as not to reflect bias and provide opportunities for customization; 2) For decision-making in the context of lifesustaining treatments in the inpatient setting, clinicians should make a recommendation for or against the use of CPR or ventilation that incorporates patients" priorities as well as the medical situation and then check in with the patient about that recommendation. 58,59 3) We explicitly included language within the structure of both Guides to ask patients to identify a trusted decision-maker and explore how much that individual knows about their wishes. Making a recommendation in the outpatient setting: This can be hard to talk about. At the same time, this conversation can help us ensure that what matters most to you guides your care if you get sick. I"ve heard you say ____. I think it"s important to share this information with your loved ones so they can speak for you if you can"t. I recommend that we complete a healthcare proxy so we know who you trust to make decisions if you can"t. [If additional recommendations] I also recommend ____. This is an uncertain time for all of us. We will do everything we can to help you and your family through this. Making a recommendation in the inpatient setting: A. use intensive care if necessary, including CPR or breathing machines. If something changes to make us worry that these treatments are not likely to work, we will tell you or your [trusted decision maker]. Is that okay? B. provide only treatments that we think will be helpful. This means that we would not do CPR or breathing machines but will provide all other available treatments to help you recover and be comfortable. Is that okay? We can revisit this at any time. We will do everything we can to help you and your family through this. While specific concerns and questions arose around sharing information and making decisions, (Table 1) . Technique Examples from the Conversation Guides Asking permission: These uncertain times with coronavirus can create a sense of powerlessness and loss of control. Building rapport early in the conversation by naming this shared experience and also asking patients permission to proceed before moving forward with the conversation enables patients to maintain control over the discussion. Normalizing the conversation: Given the unpredictable nature of Covid-19, normalizing these conversations creates safety for the patient and/or family to think about hard topics. Sharing information with compassionate language and responding to emotion: When sharing difficult news, "hope/prepare" and/or "hope/worry" language aligns with patients and expresses compassion. 44 Pausing after sharing difficult information to allow silence and respond to emotions enables patients to process their Reaffirming commitment to care: It is imperative that clinicians continue to use communication techniques to build trusting relationships with patients and families. 31 Expressions that affirm non-abandonment 66 and commitment to doing everything they can to care for the patient are especially needed during this crisis. -We will do everything we can to help you and your family get through this.‖ In both the outpatient and inpatient settings, several reviewers had the opportunity to use the Guides with patients, after which clinicians raised the important realities of the current context of advance care planning in the time of COVID-19. Adapted from these clinical encounters, Table 2 includes a series of example clinical cases of conversations with patients and families using Covid-19 communication tools.  A 76-year-old woman with diabetes, hypertension, asthma, and well-managed schizophrenia with full decision-making capacity. She has confirmed coronavirus with five days of fever and intermittent wheezing and is managing at home.  The conversation occurs via telemedicine with her daughter and family medicine physician.  During the discussion, the family medicine physician learns that staying home and "feeling like herself" are most important to her. She fears going to the hospital because of visitor restrictions and doesn"t want to be alone. Her best-case scenario is being managed at home. She did say that she would go to the hospital if needed to get more supportive care. Her sister died on a ventilator, and she does not want to be intubated or resuscitated under any circumstances.  Recommendation: Increase home services, which included a safety check, pulse oximetry, and supplemental oxygen; code status updated in the electronic medical record to DNR/DNI and the discussion was documented in an advance care planning module in the EMR.  48 year-old man with advanced sarcoma on 3 rd line chemotherapy. He lives at home with his wife and two teenage sons. He does not have any symptoms or exposures to coronavirus.  Derek had a conversation with his oncology nurse practitioner via telemedicine.  During the conversation, they discussed protective measures to prevent infection given his compromised immune system and underlying cancer. He had a lot of questions about Covid-19 and its effects on his cancer treatment plan, which were his primary concerns. He was very anxious during the conversation and said that "anything besides living was not ok" when asked what was important to him. He didn"t want to think about what would be important if he were to get very sick. His oncology nurse practitioner responded to emotion and answered his questions. She did not discuss the patient"s values or preferences should he become sick with Covid-19.  Recommendation: Connect with a social worker for a behavioral health visit; schedule their next oncology check-in within one week. "Angela"  86 y/o frail elderly woman with dementia and heart failure requiring full time care. She lives in a skilled nursing facility.  Admitted to the hospital with fever, labored breathing (RR=30) on 6L nasal canula, and delirium. Coronavirus positive. Patient"s daughter is her surrogate decision-maker.  The conversation occurs with the patient"s daughter, Anne, by phone and the hospitalist.  During the conversation when asked about worries, Anne expressed anger about her perceptions of the lack of communication in the nursing home. She was worried about her mother"s care. The hospitalist acknowledged her frustrations and assured her that her mom would be given the best care possible. When asked about what is important, her daughter shared that her mother"s quality of life before the admission was declining for months and that it was most important that her mom not suffer and that she be well taken care of.  Recommendation: Given the patient"s underlying conditions and the daughter"s wishes, the hospitalist recommended intensive comfort measures and best supportive care, which would not include the use of CPR or ventilation. The patient"s daughter agreed. They arranged a video call so she could see her mom. "Allan"  69 year old male with advanced COPD (2L home oxygen, multiple admissions for COPD exacerbation), congestive heart failure, insulin dependent diabetes, chronic kidney disease. The patient lives alone.  He is admitted with Covid-19. A conversation occurred with his hospitalist on day 2.  During the conversation, Allan shared his strong faith and belief that God would help him get through this. He said that it is important for him to be able to go to church and continue all of the activities they do when he recovers. He had never thought about life-sustaining treatments and wasn"t ready to discuss it.  Recommendation: Given the patient"s goal and lack of readiness to discuss specifics of life sustaining treatments, the hospitalist recommended the standard of care -that they would use resuscitation and ventilation if he got sicker and also continue best supportive care to help him recover. The patient agreed.  On hospital day 6, Allan developed worsening hypoxemia, dyspnea, and acute kidney injury. The hospitalist revisited the discussion. Allan was scared and tearful. He said that he wanted to live and also shared worries that he wouldn"t be able to get out of the hospital. He asked to see his pastor. The hospitalist responded to the patient"s emotion and set up a video call with the pastor.  Recommendation: Given what"s important to the patient and worries that his underlying condition put him at higher risk of a prolonged ventilator course, the patient, his pastor, and the hospitalist agreed to a trial of intubation if needed and to revisit that decision if there was a worry that the treatments were not going to work. The patient also identified the pastor as his healthcare proxy. The hospitalist documented the code status, proxy, and the discussion in the ACP template. Hospital safety policies, including the use of personal protective equipment, and social distancing measures, including quarantine, can affect advance care planning conversations by having sensitive conversations via telemedicine. 67 In-person empathic techniques to build connection and rapport, such as facial expressions or therapeutic touch, are difficult to replicate or replace. Reviewers also raised the challenges of having discussions with families by phone, at times with interpreters, especially when never having an opportunity to meet the family members face-to-face beforehand. These realities require clinicians to be both empathic and efficient in ACP communication while also being even more mindful of their language. To respond to these observations, we tested the conversation tools in simulated encounters using video encounters with two patient actors. These formed the basis of the publicly available video demonstrations of both the outpatient and inpatient guides. These web-based encounters helped to demonstrate that high quality, compassionate communication can occur during difficult circumstances and informed changes to the guides that enhanced the empathic approaches. Given this context, engaging a patient or family in a successful conversation about values, goals, and preferences during the time of Covid-19 requires implementation guidance and a series of workflow processes before, during, and after the discussion. Table 3 describes examples of these steps and tips for frontline clinicians to use the guide as part of a clinical workflow. to improve implementation. 48 However, use of structured communication guides is not without risk, including misinterpretation about conversation intent, e.g. conserving healthcare resources. That said, a guide may also be the best way to ensure that conversations like these focus on more than just life-sustaining treatments, as is typical. American College of Physicians High Value Care Task Force. Communication about serious illness care goals: a review and synthesis of best practices Quality Measurement of Serious Illness Communication: Recommendations for Health Systems Based on Findings from a Symposium of National Experts Defining advance care planning for adults: A consensus definition from a multidisciplinary delphi panel End-of-life discussions, goal attainment, and distress at the end of life: predictors and outcomes of receipt of care consistent with preferences The effect of end-of-life discussions on perceived quality of care and health status among patients with COPD Evaluating an Intervention to Improve Communication Between Oncology Clinicians and Patients With Life-Limiting Cancer: A Cluster Randomized Clinical Trial of the Serious Illness Care Program Effect of the serious illness care program in outpatient oncology: A cluster randomized clinical trial Effect of a Patient and Clinician Communication-Priming Intervention on Patient-Reported Goals-of-Care Discussions Between Patients With Serious Illness and Clinicians: A Randomized Clinical Trial The impact of advance care planning on end of life care in elderly patients: randomised controlled trial Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment COVID-19 exacerbating inequalities in the US Discussing prognosis with patients and their families near the end of life: impact on satisfaction with end-of-life care End-of-life care discussions among patients with advanced cancer: a cohort study Associations between end-of-life discussion characteristics and care received near death: a prospective cohort study Discussing end-of-life issues in the last months of life: a nationwide study among general practitioners Advance care planning in primary care, only for severely ill patients? A structured review Advance care planning documentation practices and accessibility in the electronic health record: implications for patient safety Advance care planning documentation in electronic health records: current challenges and recommendations for change REMAP: A framework for goals of care conversations Efficacy of communication skills training for giving bad news and discussing transitions to palliative care Tools to promote shared decision making in serious illness: A systematic review Educational interventions to train healthcare professionals in end-of-life communication: a systematic review and meta-analysis Development of the Serious Illness Care Program: a randomised controlled trial of a palliative care communication intervention A systematic intervention to improve serious illness communication in primary care Patient and clinician experience of a serious illness conversation guide in oncology: A descriptive analysis A systematic intervention to improve serious illness communication in primary care: Effect on expenses at the end of life Conversations About Goals and Values Are Feasible and Acceptable in Long-Term Acute Care Hospitals: A Pilot Study Achieving Goal-Concordant Care: A Conceptual Model and Approach to Measuring Serious Illness Communication and Its Impact Improving communication about serious illness in primary care: A review How does communication heal? Pathways linking clinician-patient communication to health outcomes Risk factors associated with acute respiratory distress syndrome and death in patients with coronavirus disease 2019 pneumonia in wuhan, china org) between Brigham and Women"s Hospital and the Harvard T.H. Chan School of Public Health, in collaboration with the Dana-Farber Cancer Institute. Licensed under the Creative Commons Attribution-NonCommercial Characteristics and Outcomes of 21 Critically Ill Patients With COVID-19 in Washington State Risk factors associated with disease progression in a cohort of patients infected with the 2019 novel coronavirus Surrogate decision-makers" perspectives on discussing prognosis in the face of uncertainty Knowing is better": preferences of diverse older adults for discussing prognosis if you don"t know, all of a sudden, they"re gone": caregiver perspectives about prognostic communication for disabled elderly adults Discussing prognosis: "how much do you want to know?" talking to patients who are prepared for explicit information Discussing prognosis: "how much do you want to know?" talking to patients who do not want information or who are ambivalent Softening our approach to discussing prognosis Discussing prognosis: balancing hope and realism When a patient is reluctant to talk about it: A dual framework to focus on living well and tolerate the possibility of dying The cultivation of prognostic awareness through the provision of early palliative care in the ambulatory setting: a communication guide National POLST: Physician Orders for Life Sustaining Treatments Committee on Guidance for Establishing Crisis Standards of Care for Use in Disaster Situations, Institute of Medicine Creating a Palliative Care Inpatient Response Plan for COVID19 -The UW Medicine Experience Crisis Symptom Management and Patient Communication Protocols Are Important Tools for All Clinicians Responding to COVID-19 Differences in level of care at the end of life according to race From Barriers to Assets: Rethinking factors impacting advance care planning for African Americans Racial disparities in the outcomes of communication on medical care received near death Disparities in breast cancer tumor characteristics, treatment, time to treatment, and survival probability among African American and white women Racial and ethnic differences in end-of-life care in fee-for-service Medicare beneficiaries with advanced cancer Factors Impacting Advance Care Planning among African Americans: Results of a Systematic Integrated Review Hospitalization Rates and Characteristics of Patients Hospitalized with Laboratory-Confirmed Coronavirus Disease 2019 -COVID-NET, 14 States Prior Advance Care Planning Is Associated with Less Decisional Conflict among Surrogates for Critically Ill Patients Redefining the "planning" in advance care planning: preparing for end-of-life decision making i"d recommend …" how to incorporate your recommendation into shared decision making for patients with serious illness The Importance of Addressing Advance Care Planning and Decisions About Do-Not-Resuscitate Orders During Novel Coronavirus 2019 (COVID-19) Feeling Heard and Understood: A Patient-Reported Quality Measure for the Inpatient Palliative Care Setting Communication Skills in the Age of COVID-19 Health outcome prioritization to elicit preferences of older persons with multiple health conditions Health outcome prioritization as a tool for decision making among older persons with multiple chronic conditions Factors considered important at the end of life by patients, family, physicians, and other care providers Preparing for the end of life: preferences of patients, families, physicians, and other care providers When patients and families feel abandoned End-of-life decisions and care in the midst of a global coronavirus (COVID-19) pandemic. Intensive Crit Care Nurs Engaging Diverse English-and Spanish-Speaking Older Adults in Advance Care Planning: The PREPARE Randomized Clinical Trial Moral distress amongst american physician trainees regarding futile treatments at the end of life: A qualitative study Effect of a Lay Health Worker Intervention on Goals-of-Care Documentation and on Health Care Use, Costs, and Satisfaction Among Patients With Cancer: A Randomized Clinical Trial Communication skills training for physicians improves patient satisfaction Moral distress and its contribution to the development of burnout syndrome among critical care providers. Ann Intensive Care Ariadne Partners with Health Systems to Initiate Serious Illness Conversation Programs The authors would like to acknowledge Dr. Stephen D. Brown, the Director of the Institute for Professionalism and Ethical Practice at Boston Children"s Hospital for his contributions to the video simulations. The authors would also like to acknowledge all of the reviewers who contributed their time and expertise to this project.