"Am I Going to Die?": Delivering Serious News to Patients With Liver Disease.

Gastroenterology teams care for a wide range of patients across the life span and with varying illness severity and chronicity. Among the sickest are patients with decompensated cirrhosis and hepatocellular carcinoma, whose clinical courses are dominated by uncertainty.1Kimbell B. Boyd K. Kendall M. Iredale J. Murray S.A. Managing uncertainty in advanced liver disease: a qualitative, multiperspective, serial interview study.BMJ Open. 2015; 5e009241Crossref PubMed Scopus (74) Google Scholar As clinicians, we are tasked with the challenge of supporting patients and their families through such an uncertain future. While discussions ideally include all outcomes including increased disability or death, they frequently focus only on opportunities for cure. As a result, patients and their families feel unprepared for difficult decisions they may face if things do not go the way we intend2Patel A.A. Ryan G.W. Tisnado D. et al.Deficits in advance care planning for patients with decompensated cirrhosis at liver transplant centers.JAMA Intern Med. 2021; 181: 652-660Crossref PubMed Scopus (21) Google Scholar. Gastroenterologists may hesitate to engage in such conversations. Some may worry that bringing up negative topics may reduce patient hope or cause distress, introduce ambivalence surrounding care (such as the liver transplantation process), is not adequately reimbursed, or damage the patient–provider relationship. Many additionally feel undertrained on how to handle such conversations.3Ufere N.N. Donlan J. Waldman L. et al.Barriers to use of palliative care and advance care planning discussions for patients with end-stage liver disease.Clin Gastroenterol Hepatol. 2019; 17: 2592-2599Abstract Full Text Full Text PDF PubMed Scopus (38) Google Scholar The data, however, show that high-quality communication improves patient–clinician relationships, decrease the psychological burden among patients and their caregivers, and increases the families’ understanding of the patients’ end-of-life care.4Lagrotteria A. Swinton M. Simon J. et al.Clinicians' perspectives after implementation of the serious illness care program: a qualitative study.JAMA Netw Open. 2021; 4e2121517Crossref PubMed Scopus (9) Google Scholar,5Hoerger M. Greer J.A. Jackson V.A. et al.Defining the elements of early palliative care that are associated with patient-reported outcomes and the delivery of end-of-life care.J Clin Oncol. 2018; 36: 1096-1102Crossref PubMed Scopus (133) Google Scholar How to have these conversations can be learned, practiced, and refined over time.6Tulsky J.A. Arnold R.M. Alexander S.C. et al.Enhancing communication between oncologists and patients with a computer-based training program: a randomized trial.Ann Intern Med. 2011; 155: 593-601Crossref PubMed Scopus (190) Google Scholar In this article, we review strategies for delivering serious news, a core communication skill, using the example of a patient who is not a candidate for liver transplantation. By mastering this, clinicians should feel more prepared to help patients and their families cope with uncertainty and to engage in other, similarly challenging conversations. Mr Davis (Mr D) is a 71-year-old man with decompensated cirrhosis owing to fatty liver disease. He comes to your clinic after a recent hospitalization for new ascites and worsening confusion. After staying in the hospital for 1 week and initiating diuretics, as well as lactulose and rifaximin, Mr Davis was discharged and recommended to follow-up with your team. Today, he is feeling fatigued, yet a bit worried. His Model of End-Stage Liver Disease-Sodium score is 31. During his hospital stay, the patient completed his liver transplantation evaluation. Your institution’s recipient review committee determined that he is not eligible for liver transplantation because of other serious comorbidities (aortic stenosis and recently treated colon cancer), and you plan to review that with him in clinic today.Mr D: “They basically told me that I’ll die if I don’t get a transplant,” he tells you, anxiously. “I don’t understand, am I going to die?” Communication between clinicians and patients with serious illness about their goals, values, and priorities, or serious illness communication, can be conceptualized as a complex procedure consisting of multiple skillsets. These include information gathering, information sharing, responding to emotion, and fostering relationships. We provide a list of key skills, adapted from the American Society of Clinical Oncology consensus guidelines, on patient–clinician communication7Gilligan T. Coyle N. Frankel R.M. et al.Patient-clinician communication: American Society of Clinical Oncology consensus guideline.J Clin Oncol. 2017; 35: 3618-3632Crossref PubMed Scopus (267) Google Scholar in Table 1.Table 1Recommendations for Serious Illness CommunicationCategorySpecific SkillsCore communication skillsSetting up conversation; exploring understanding of disease; fostering trust; assessing preferences for information; responding to emotionUsing communication to facilitate family involvement in careSuggesting family/caregiver involvement early in conversations; determining appropriate settingCommunicating effectively when there are barriers to conversationEvaluating use of a trained medical interpreter; using non-medical language; adapting communication to patients with low health numeracyDiscussing goals of care and prognosisDelivering prognosis tailored to patient needs – provides hope and reassurance without misleading patient; reassessing goals, priorities, and desire for information; providing information in simple and direct terms; addressing needs and responses of patientsDiscussing treatment optionsClarifying goals of treatment; reviewing benefits and burdens of treatment; preserving patient hope, autonomy; facilitating understanding; awareness of all treatment options, including clinical trials and palliative careDiscussing end-of-life careEarly initiation of conversation; exploring culture, religion, spiritual belief systems; responding to emotion and referring patients to psychosocial team members, when appropriate; identifying and suggesting local resources to provide robust support to patients, families, and loved ones transitioning to end-of-life careAdapted from the American Society of Clinical Oncology (ASCO) Guidelines. Open table in a new tab Adapted from the American Society of Clinical Oncology (ASCO) Guidelines. Achieving proficiency in serious illness communication requires overcoming several clinician emotional, cognitive, and skill barriers. Similar to other complex procedures like endoscopy, clinicians should ideally have these techniques taught to them, modeled, and practiced over time to achieve proficiency.8Callahan M.E. Brant E.B. Mohan D. Norman M.K. Arnold R.M. White D.B. Leveraging technology to overcome the "scalability problem" in communication skills training courses.ATS Sch. 2021; 2: 327-340Crossref PubMed Scopus (6) Google Scholar Several well-known, evidence-based training programs, such as VitalTalk, the Serious Illness Conversation Guide, and Respecting Choices, have been used to teach serious illness communication skills.9Ariadne LabsSerious illness care.www.ariadnelabs.org/areas-of-work/serious-illness-care/Date accessed: July 20, 2022Google Scholar, 10VitalTalk.www.vitaltalk.org/Date accessed: July 20, 2022Google Scholar, 11Gundersen Health System. Respecting Choices.www.gundersenhealth.org/respecting-choices/Date accessed: July 20, 2022Google Scholar These skills should not be used rotely; rather, the purpose of learning them is to allow the clinician to have the ability to individualize their communication based to adapt to different scenarios. In this patient encounter, we will use the GUIDE10VitalTalk.www.vitaltalk.org/Date accessed: July 20, 2022Google Scholar mnemonic to demonstrate how to deliver serious news to a patient about their transplant eligibility. Key phrases are underlined. In Table 2, we provide a checklist for each step of “GUIDE” and additional phrases that can be used.Table 2Quick Reference for Delivering Serious NewsStepKey PointsExamplesGet Ready✓Focus on youDo you have all the important information?Do you need to review what prior conversations were discussed?✓Focus on the patientDo they have capacity?Do they need a trained interpreter?Do they need anyone else present?Is this an appropriate setting?✓Take a deep breath“Who else should we include in our conversation today?”“Let me take a minute to make sure I’ve got what I need.”Understand What the Patient Knows✓Be willing to hear the patient’s side✓Assess how they use language to describe their condition and how receptive they are for more information“What did the other doctors tell you?”“What did they tell you about what the future might bring?”“What did you learn from the Internet?”Inform, Starting with a Headline✓Use 1–2 sentences at most✓Avoid medical jargon, if possible✓Describe what is wrong and what it means“The CT scan shows that your liver cancer has gotten worse. We likely won’t be able to stop the disease.”“Your kidney function is still getting worse. I’m worried that it will continue to do so.”Demonstrate Empathy✓Observe patient’s reaction to news and identify specific emotions“Cognitive requests” may be signs of emotion✓Consider using “I wish” or “NURSE” (Naming, Understanding, Respecting, Supporting, Exploring) statements to respond to emotion ✓Consider using silence alone“I wish”“I wish things were different.”“I wish transplant was an option for you.”“NURSE”“I can see that this news was not what you were expecting.” (Naming)“I can only imagine what it would be like for you to be in this situation.” (Understanding)“You are such a committed, strong advocate for your wife.” (Respecting)“Our team will do everything we can to make sure you have what you need.” (Supporting)“Could you say more about what you mean when you say that?” (Exploring)Equip✓Assess whether the patient is willing to discuss next stepsIf not, make a follow-up planFor patients with persistent ambivalence, consider having them imagine what it feels to be sicker✓Explore what information the patient may find useful regarding prognosis ✓Communicate prognosis in a way that balances hope and realism“This has been a lot; how is all this sitting with you?”“I want you to be prepared for the next step. Can I explain…”Approaching ambivalence to discuss prognosis“I hear it is hard for you to talk about the possibility that you might get sicker or even die from this illness.”“Would you mind sharing what is on your mind when we talk about the possibility of getting sicker?”“In thinking about the possibility of getting sicker, are you someone who wants to discuss in detail, or would you prefer that we discuss the details with someone else and share the big picture summary with you?”Assessing prognostic needs“What worries you most about dying?”“What does your day to day life look life?”“Some people like to know many details about their healthcare while others prefer a more general view. Which of these sound like you?”Balancing hope and realism when discussing prognosis“I wish we were able to offer a treatment that will cure your cancer, and even though that’s not possible, our team is going to work our hardest to support you through this.”“I share your hope that you’re able to make it to your son’s wedding, and I’m also worried that you may not feel as well as you would like and may require a lot of assistance; let’s explore different ways that you might share in this important event.”The references to VitalTalk content (Copyright © 2021 by VitalTalk, all rights reserved) summarized in this article is for informational, non-commercial or educational use only. Readers can learn more at VitalTalk.org. Open table in a new tab The references to VitalTalk content (Copyright © 2021 by VitalTalk, all rights reserved) summarized in this article is for informational, non-commercial or educational use only. Readers can learn more at VitalTalk.org. For situations where clinicians are hoping to deliver serious news or where patients are asking about serious news, preparation is key. Before engaging, take a moment to focus on the task at hand. Have you thought about what information you would like to present and the most pertinent core pieces (prognostic information, supporting documentation) of that information? If you do not know the patient well, do you need to review the chart to see what prior conversations have been had? When you do engage, first focus your attention on the patient. Do they have capacity for this conversation? Will they need a trained interpreter to participate in the conversation? Would they like others to be included who are not currently present, like their healthcare agent? Is this an appropriate setting for the conversation—do you need a private room? Then, center yourself. Take a deep breath, acknowledge there may be emotions and give yourself time to be present. Once you, your patient, and other parties are ready, you can proceed.You: Would it be OK if we discuss more about your liver disease and what you might expect? Some patients may already know the serious news, read information online to see what it means, and have come to the conversation prepared to be told that there are no curative options. By listening to a patient’s own self-assessment, clinicians demonstrate their willingness to meet the patient and their caregiver where they are. This also allows the clinician to assess how the patient understands the illness, gaining insight from the language the patient uses to describe the condition and gauging their receptiveness to more information. Patients with cirrhosis and their caregivers have significant informational needs and may have limited understanding about what cirrhosis is, available treatments, and how the disease relates to their symptoms.12Low J.T.S. Rohde G. Pittordou K. et al.Supportive and palliative care in people with cirrhosis: International systematic review of the perspective of patients, family members and health professionals.J Hepatol. 2018; 69: 1260-1273Abstract Full Text Full Text PDF PubMed Scopus (36) Google ScholarYou: OK. First, do you mind briefly sharing what you have been told about your liver?Mr D: Basically, I know that I have a fatty liver and that currently, it’s not working well. The team in the hospital said that my only chance is to get a transplant and that they were going to tell me after all the tests whether I’ve got a shot. When disclosing serious news, your headline should succinctly represent the most important information you want the patient and their family to take away. Consider including one sentence about what is wrong and one sentence about what it means. When possible, listen to the language they use when speaking about their condition and reflect that language back where appropriate; avoid medical jargon.You: I agree that your liver is not functioning well and, in your situation, we were looking into the option of transplant. Unfortunately, transplant is not an option and, without it, your liver condition will get worse. I am worried that your time may be shorter than we hoped. Demonstrating empathy means being able to sense, interpret, and respond to emotions and nonverbal communication effectively. After sharing a headline, be silent and notice how the information “lands.” At this critical juncture in the conversation, the clinician must have the skills to observe the patient’s reaction, whether they express sadness, anger, frustration, or another emotion, verbally or not, and respond to it effectively. Sometimes, this reaction is subtle. For instance, “cognitive” requests for information, such as “Isn’t there something more that can be done?” or “Are you absolutely sure?” by patients and families in response to news can be expressions of fear, stress, and anxiety.13Childers J.W. Back A.L. Tulsky J.A. Arnold R.M. REMAP: a framework for goals of care conversations.J Oncol Pract. 2017; 13: e844-e850Crossref PubMed Scopus (136) Google Scholar Acknowledging these cues, which may include the tone, pitch, and speed of the language in addition to the words, is critical. Clinicians can then use several responses, including “I wish” statements,14Quill T.E. Arnold R.M. Platt F. "I wish things were different": expressing wishes in response to loss, futility, and unrealistic hopes.Ann Intern Med. 2001; 135: 551-555Crossref PubMed Scopus (114) Google Scholar “NURSE” statements,6Tulsky J.A. Arnold R.M. Alexander S.C. et al.Enhancing communication between oncologists and patients with a computer-based training program: a randomized trial.Ann Intern Med. 2011; 155: 593-601Crossref PubMed Scopus (190) Google Scholar or even silence alone.15Back A.L. Bauer-Wu S.M. Rushton C.H. Halifax J. Compassionate silence in the patient-clinician encounter: a contemplative approach.J Palliat Med. 2009; 12: 1113-1117Crossref PubMed Scopus (78) Google Scholar to respond to emotion. This can help patients and families feel heard and allow them to process the news (Table 2).Mr D: So, what does that mean? Are you telling me that the only option I have is to drop dead?You: I can only imagine how upsetting this news is. I wish I had different news to share.Mr D: I’m just…I don’t have any words. I don’t know what to say.You: Take as much time as you need. I’m here to support you.Mr D: (Exhales) OK. I just can’t believe it. It is important to remember that after serious news is delivered, patients and their families may not be willing or prepared to discuss any further issues – like moving ahead with decisions around treatment or disposition -- during a visit. Often the next step is scheduling another visit. It is critical to provide them space until they feel ready. Once they are, patients and families should be given the opportunity to receive information in a supportive way. Communication specifically focused on strengthening coping, cultivating illness understanding, and promoting prognostic awareness helps achieve this goal.16Yoong J. Park E.R. Greer J.A. et al.Early palliative care in advanced lung cancer: a qualitative study.JAMA Intern Med. 2013; 173: 283-290Crossref PubMed Scopus (215) Google Scholar Clinicians may feel tempted to jump towards conversations about treatment decisions, such as choosing a therapy option for hepatocellular carcinoma, moving forward with a liver transplant evaluation, or initiating dialysis. Instead, patients and families may first want more details on how to live well with their illness or what their prognosis is. Patients with ambivalence toward conversations about prognosis may need some additional prompting to help them conceptualize what it might mean to get sick or understand the dilemma at hand. When communicating prognosis, clinicians should continue to explore what information their patient might find helpful, which may be beyond statistics. For example, they may want to know more about what day to day life will look like in terms of functional status or what symptoms they may expect, in addition to, or even instead of, discussing prognosis in terms of time. Family caregivers may experience distress related to unpredictability and feeling unprepared; knowing what aspects of the illness course are more or less predictable can arm them with important knowledge.17Paladino J. Lakin J.R. Sanders J.J. Communication strategies for sharing prognostic information with patients: beyond survival statistics.JAMA. 2019; 322: 1345-1346Crossref PubMed Scopus (33) Google Scholar After receiving this information, communicating prognosis in a way that balances hope and realism is often effective. Models such as the Communication Guide for Prognostic Awareness and Best Case/Worst Case are helpful frameworks for clinicians to use.You: Would it be OK for us to talk about next steps?Mr D: I just want to know how long I have.You: What worries you most hearing this news?Mr D: I’m mostly worried about being a burden on my wife.You: This must be very hard for you and your family. Our team is going to work to make sure you and your wife get as much support as possible.Mr D: I would like that.You: Let’s plan a meeting with you and your wife to talk about what to expect from your liver disease, how to plan for the future, and resources we can provide to support you both. Helping patients and their families reach a double awareness, or capacity to both engage in life while facing impending death, will ultimately help them live well and confront difficult decisions in the future.18Colosimo K. Nissim R. Pos A.E. et al.“Double awareness” in psychotherapy for patients living with advanced cancer.Journal of Psychotherapy Integration. 2018; 28: 125Crossref Scopus (33) Google Scholar Achieving this can facilitate more complex discussions between clinicians and their patients about goals, values, and other priorities that may impact a patient’s decision-making, such as how they define good quality of life or the nature of their relationship to family members and caregivers.13Childers J.W. Back A.L. Tulsky J.A. Arnold R.M. REMAP: a framework for goals of care conversations.J Oncol Pract. 2017; 13: e844-e850Crossref PubMed Scopus (136) Google ScholarYou: Often the course of liver disease is unpredictable, it has its ups and its downs. My goal is to prepare you and your family for anything that comes your way. All clinicians managing patients with liver disease, including gastroenterologists and hepatologists, should be comfortable with serious illness communication. Using structured approaches to developing these skills has been shown to improve outcomes for patients with serious illness, such as patient and family satisfaction and reduced healthcare use at the end of life.19Fawole O.A. Dy S.M. Wilson R.F. et al.A systematic review of communication quality improvement interventions for patients with advanced and serious illness.J Gen Intern Med. 2013; 28: 570-577Crossref PubMed Scopus (61) Google Scholar Graduate medical programs, professional societies, and continuing medical education committees can help to promote training in serious illness communication as part of ongoing quality improvement efforts. As clinicians, we are always committed to improving our patient care. By elevating our collective communication skills, we have the power to profoundly impact the experience of patients with advanced liver disease and their families, no matter where they are in the continuum of care.