https://orcid.org/0000-0002-5794-5801
Navigating the use of antimicrobials at the end of life is a challenge for infectious diseases (ID) physicians who remain deeply committed to providing patient-centered care and engaging in shared decision making while also promoting antimicrobial stewardship. ID physicians, who maintain continuity of care for patients with refractory or recurrent infections in the inpatient and outpatient settings can provide thoughtful, calibrated guidance during a particularly vulnerable moment in patients' lives.
Hospitalizations from recurrent infections often result in progressive asthenia and functional decline. Our discussion centers around a patient with unresectable cholangiocarcinoma whose recurrent infections pose various challenges as her clinical condition evolves. We emphasize the importance of setting clear expectations and identifying achievable goals as integral parts of shared decision making. We offer strategies for engaging in these challenging conversations with patients and their families (Table 1) and characterize ethical concerns ID physicians frequently encounter.
Table 1.
Using REMAP in Early and Late Goals of Care Conversations
| Steps | Key Points | Phrasing in Early Conversations | Phrasing in Late Conversations |
|---|---|---|---|
| Reframe | Clarify current understanding of the expected clinical trajectory and the rationale for revisiting the goals of care; if additional prognostic information needs to be communicated, it should be communicated succinctly and empathetically | “What is your understanding of the current status of the infection? How has the treatment been working?” | “What has the ICU team shared with you about how you’re doing?” “What are the latest updates that you’ve heard about your condition?” |
| Acknowledge the change in clinical status and the need to revisit goals of care | “Unfortunately, the infection is getting harder to treat, and we will never be able to get rid of it. I’m worried that this will be what affects your life the most going forward.” | “We’re in a different place now. Our treatments are no longer helping in the way that we hoped, and I’m worried we’re approaching the end.” | |
| Expect emotion | Acknowledge and respond to emotional responses, whether verbal or nonverbal; addressing these emotional responses with empathy is a critical step in eliciting patients' goals and values and establishing a plan of care that best aligns with those goals | “I can see how hard this is to hear.” “You’ve done so much work just to get to this point.” | “Anyone would feel saddened by this situation right now. I wish I had better news for you.” |
| Map out patient goals | Outline priorities expressed by the patient and family; it may be necessary to note that no immediate decisions are required | “Can you tell me what feels most important to you as we continue treating your illness and managing your infection? What should we prioritize?” | “Knowing that we are approaching the end, what should we prioritize the most right now?” |
| If patients are unable to name priorities, provide examples of what other patients choose | “Some patients favor doing the most aggressive treatment to slow down or suppress an infection, regardless of the effect on comfort. Others want to prioritize reducing side effects, even if it isn’t the strongest medication for treating the infection. Can we talk about your priorities so I can be sure we’re following a path that matches your wishes?” | “Some patients tell me that they want to maximize their time at home in their final days, while others want to be certain they’ve exhausted all reasonable attempts to prolong their life. Do any of these ring true for you?” | |
| Probe into simple or 1-word answers to extract more detail that helps in understanding a patient's specific goals | “Tell me more about what worries you about side effects. What situations should we avoid?” | “You mentioned wanting time with family. What might that look like right now?” “When you spoke about being at home, what are you hoping for your time at home to be like?” | |
| Align with goals | Reflect back what you have heard as the patient's core values and preferences to ensure that you have an accurate understanding of the priorities; you can incorporate any pertinent emotions as well, such as ambivalence or fear, that you have observed | “I’m hearing that you truly prioritize your level of comfort above all, and I want to ensure that we keep that in mind when we order treatments.” “It sounds like you’re worried about the infection getting rapidly worse. Let's make sure we are thoughtful about using the best ways to treat this.” | “It sounds like having some time to focus on saying goodbye is most important to you. I think your whole medical team wants to help you achieve that.” |
| Propose a plan | Provide a clear recommendation based on the communicated goals and priorities; asking for permission before communicating your recommendation may increase the likelihood that the patient or family is ready to hear and integrate additional information | “Let's make sure that we use antibiotic regimens that are most tolerable for you in the future. I’ll make sure that my colleagues are aware of this if you come back to the hospital.” | “Based on what you’ve shared is most important to your partner, may I share what I think would best help you achieve that?” “Knowing that the most important part is to be at home, let's do everything we can to make that happens in a safe, comfortable way. I want to make sure that we focus on comfort in treating these infections, and I’d like to share how we can adapt our treatments to do that.” |
| In earlier conversations, this may be an opportunity to provide an anticipatory recommendation for a later situation | “There may come a point where treating this infection with more and more procedures and antibiotics may lengthen your life but would force that additional time to be only in a hospital setting, away from your family. Knowing how important their presence and your comfort is to you, when that time comes, we should talk about changing our approach to the infection.” | “I remember we talked about this some weeks ago. I think now we are at the point where more procedures and antibiotics would mean that you spend your final days in the hospital. Should we talk about options that could help you be comfortable and close to your family instead? |
| Steps | Key Points | Phrasing in Early Conversations | Phrasing in Late Conversations |
|---|---|---|---|
| Reframe | Clarify current understanding of the expected clinical trajectory and the rationale for revisiting the goals of care; if additional prognostic information needs to be communicated, it should be communicated succinctly and empathetically | “What is your understanding of the current status of the infection? How has the treatment been working?” | “What has the ICU team shared with you about how you’re doing?” “What are the latest updates that you’ve heard about your condition?” |
| Acknowledge the change in clinical status and the need to revisit goals of care | “Unfortunately, the infection is getting harder to treat, and we will never be able to get rid of it. I’m worried that this will be what affects your life the most going forward.” | “We’re in a different place now. Our treatments are no longer helping in the way that we hoped, and I’m worried we’re approaching the end.” | |
| Expect emotion | Acknowledge and respond to emotional responses, whether verbal or nonverbal; addressing these emotional responses with empathy is a critical step in eliciting patients' goals and values and establishing a plan of care that best aligns with those goals | “I can see how hard this is to hear.” “You’ve done so much work just to get to this point.” | “Anyone would feel saddened by this situation right now. I wish I had better news for you.” |
| Map out patient goals | Outline priorities expressed by the patient and family; it may be necessary to note that no immediate decisions are required | “Can you tell me what feels most important to you as we continue treating your illness and managing your infection? What should we prioritize?” | “Knowing that we are approaching the end, what should we prioritize the most right now?” |
| If patients are unable to name priorities, provide examples of what other patients choose | “Some patients favor doing the most aggressive treatment to slow down or suppress an infection, regardless of the effect on comfort. Others want to prioritize reducing side effects, even if it isn’t the strongest medication for treating the infection. Can we talk about your priorities so I can be sure we’re following a path that matches your wishes?” | “Some patients tell me that they want to maximize their time at home in their final days, while others want to be certain they’ve exhausted all reasonable attempts to prolong their life. Do any of these ring true for you?” | |
| Probe into simple or 1-word answers to extract more detail that helps in understanding a patient's specific goals | “Tell me more about what worries you about side effects. What situations should we avoid?” | “You mentioned wanting time with family. What might that look like right now?” “When you spoke about being at home, what are you hoping for your time at home to be like?” | |
| Align with goals | Reflect back what you have heard as the patient's core values and preferences to ensure that you have an accurate understanding of the priorities; you can incorporate any pertinent emotions as well, such as ambivalence or fear, that you have observed | “I’m hearing that you truly prioritize your level of comfort above all, and I want to ensure that we keep that in mind when we order treatments.” “It sounds like you’re worried about the infection getting rapidly worse. Let's make sure we are thoughtful about using the best ways to treat this.” | “It sounds like having some time to focus on saying goodbye is most important to you. I think your whole medical team wants to help you achieve that.” |
| Propose a plan | Provide a clear recommendation based on the communicated goals and priorities; asking for permission before communicating your recommendation may increase the likelihood that the patient or family is ready to hear and integrate additional information | “Let's make sure that we use antibiotic regimens that are most tolerable for you in the future. I’ll make sure that my colleagues are aware of this if you come back to the hospital.” | “Based on what you’ve shared is most important to your partner, may I share what I think would best help you achieve that?” “Knowing that the most important part is to be at home, let's do everything we can to make that happens in a safe, comfortable way. I want to make sure that we focus on comfort in treating these infections, and I’d like to share how we can adapt our treatments to do that.” |
| In earlier conversations, this may be an opportunity to provide an anticipatory recommendation for a later situation | “There may come a point where treating this infection with more and more procedures and antibiotics may lengthen your life but would force that additional time to be only in a hospital setting, away from your family. Knowing how important their presence and your comfort is to you, when that time comes, we should talk about changing our approach to the infection.” | “I remember we talked about this some weeks ago. I think now we are at the point where more procedures and antibiotics would mean that you spend your final days in the hospital. Should we talk about options that could help you be comfortable and close to your family instead? |
Abbreviation: ICU, intensive care unit.
Table 1.
Using REMAP in Early and Late Goals of Care Conversations
| Steps | Key Points | Phrasing in Early Conversations | Phrasing in Late Conversations |
|---|---|---|---|
| Reframe | Clarify current understanding of the expected clinical trajectory and the rationale for revisiting the goals of care; if additional prognostic information needs to be communicated, it should be communicated succinctly and empathetically | “What is your understanding of the current status of the infection? How has the treatment been working?” | “What has the ICU team shared with you about how you’re doing?” “What are the latest updates that you’ve heard about your condition?” |
| Acknowledge the change in clinical status and the need to revisit goals of care | “Unfortunately, the infection is getting harder to treat, and we will never be able to get rid of it. I’m worried that this will be what affects your life the most going forward.” | “We’re in a different place now. Our treatments are no longer helping in the way that we hoped, and I’m worried we’re approaching the end.” | |
| Expect emotion | Acknowledge and respond to emotional responses, whether verbal or nonverbal; addressing these emotional responses with empathy is a critical step in eliciting patients' goals and values and establishing a plan of care that best aligns with those goals | “I can see how hard this is to hear.” “You’ve done so much work just to get to this point.” | “Anyone would feel saddened by this situation right now. I wish I had better news for you.” |
| Map out patient goals | Outline priorities expressed by the patient and family; it may be necessary to note that no immediate decisions are required | “Can you tell me what feels most important to you as we continue treating your illness and managing your infection? What should we prioritize?” | “Knowing that we are approaching the end, what should we prioritize the most right now?” |
| If patients are unable to name priorities, provide examples of what other patients choose | “Some patients favor doing the most aggressive treatment to slow down or suppress an infection, regardless of the effect on comfort. Others want to prioritize reducing side effects, even if it isn’t the strongest medication for treating the infection. Can we talk about your priorities so I can be sure we’re following a path that matches your wishes?” | “Some patients tell me that they want to maximize their time at home in their final days, while others want to be certain they’ve exhausted all reasonable attempts to prolong their life. Do any of these ring true for you?” | |
| Probe into simple or 1-word answers to extract more detail that helps in understanding a patient's specific goals | “Tell me more about what worries you about side effects. What situations should we avoid?” | “You mentioned wanting time with family. What might that look like right now?” “When you spoke about being at home, what are you hoping for your time at home to be like?” | |
| Align with goals | Reflect back what you have heard as the patient's core values and preferences to ensure that you have an accurate understanding of the priorities; you can incorporate any pertinent emotions as well, such as ambivalence or fear, that you have observed | “I’m hearing that you truly prioritize your level of comfort above all, and I want to ensure that we keep that in mind when we order treatments.” “It sounds like you’re worried about the infection getting rapidly worse. Let's make sure we are thoughtful about using the best ways to treat this.” | “It sounds like having some time to focus on saying goodbye is most important to you. I think your whole medical team wants to help you achieve that.” |
| Propose a plan | Provide a clear recommendation based on the communicated goals and priorities; asking for permission before communicating your recommendation may increase the likelihood that the patient or family is ready to hear and integrate additional information | “Let's make sure that we use antibiotic regimens that are most tolerable for you in the future. I’ll make sure that my colleagues are aware of this if you come back to the hospital.” | “Based on what you’ve shared is most important to your partner, may I share what I think would best help you achieve that?” “Knowing that the most important part is to be at home, let's do everything we can to make that happens in a safe, comfortable way. I want to make sure that we focus on comfort in treating these infections, and I’d like to share how we can adapt our treatments to do that.” |
| In earlier conversations, this may be an opportunity to provide an anticipatory recommendation for a later situation | “There may come a point where treating this infection with more and more procedures and antibiotics may lengthen your life but would force that additional time to be only in a hospital setting, away from your family. Knowing how important their presence and your comfort is to you, when that time comes, we should talk about changing our approach to the infection.” | “I remember we talked about this some weeks ago. I think now we are at the point where more procedures and antibiotics would mean that you spend your final days in the hospital. Should we talk about options that could help you be comfortable and close to your family instead? |
| Steps | Key Points | Phrasing in Early Conversations | Phrasing in Late Conversations |
|---|---|---|---|
| Reframe | Clarify current understanding of the expected clinical trajectory and the rationale for revisiting the goals of care; if additional prognostic information needs to be communicated, it should be communicated succinctly and empathetically | “What is your understanding of the current status of the infection? How has the treatment been working?” | “What has the ICU team shared with you about how you’re doing?” “What are the latest updates that you’ve heard about your condition?” |
| Acknowledge the change in clinical status and the need to revisit goals of care | “Unfortunately, the infection is getting harder to treat, and we will never be able to get rid of it. I’m worried that this will be what affects your life the most going forward.” | “We’re in a different place now. Our treatments are no longer helping in the way that we hoped, and I’m worried we’re approaching the end.” | |
| Expect emotion | Acknowledge and respond to emotional responses, whether verbal or nonverbal; addressing these emotional responses with empathy is a critical step in eliciting patients' goals and values and establishing a plan of care that best aligns with those goals | “I can see how hard this is to hear.” “You’ve done so much work just to get to this point.” | “Anyone would feel saddened by this situation right now. I wish I had better news for you.” |
| Map out patient goals | Outline priorities expressed by the patient and family; it may be necessary to note that no immediate decisions are required | “Can you tell me what feels most important to you as we continue treating your illness and managing your infection? What should we prioritize?” | “Knowing that we are approaching the end, what should we prioritize the most right now?” |
| If patients are unable to name priorities, provide examples of what other patients choose | “Some patients favor doing the most aggressive treatment to slow down or suppress an infection, regardless of the effect on comfort. Others want to prioritize reducing side effects, even if it isn’t the strongest medication for treating the infection. Can we talk about your priorities so I can be sure we’re following a path that matches your wishes?” | “Some patients tell me that they want to maximize their time at home in their final days, while others want to be certain they’ve exhausted all reasonable attempts to prolong their life. Do any of these ring true for you?” | |
| Probe into simple or 1-word answers to extract more detail that helps in understanding a patient's specific goals | “Tell me more about what worries you about side effects. What situations should we avoid?” | “You mentioned wanting time with family. What might that look like right now?” “When you spoke about being at home, what are you hoping for your time at home to be like?” | |
| Align with goals | Reflect back what you have heard as the patient's core values and preferences to ensure that you have an accurate understanding of the priorities; you can incorporate any pertinent emotions as well, such as ambivalence or fear, that you have observed | “I’m hearing that you truly prioritize your level of comfort above all, and I want to ensure that we keep that in mind when we order treatments.” “It sounds like you’re worried about the infection getting rapidly worse. Let's make sure we are thoughtful about using the best ways to treat this.” | “It sounds like having some time to focus on saying goodbye is most important to you. I think your whole medical team wants to help you achieve that.” |
| Propose a plan | Provide a clear recommendation based on the communicated goals and priorities; asking for permission before communicating your recommendation may increase the likelihood that the patient or family is ready to hear and integrate additional information | “Let's make sure that we use antibiotic regimens that are most tolerable for you in the future. I’ll make sure that my colleagues are aware of this if you come back to the hospital.” | “Based on what you’ve shared is most important to your partner, may I share what I think would best help you achieve that?” “Knowing that the most important part is to be at home, let's do everything we can to make that happens in a safe, comfortable way. I want to make sure that we focus on comfort in treating these infections, and I’d like to share how we can adapt our treatments to do that.” |
| In earlier conversations, this may be an opportunity to provide an anticipatory recommendation for a later situation | “There may come a point where treating this infection with more and more procedures and antibiotics may lengthen your life but would force that additional time to be only in a hospital setting, away from your family. Knowing how important their presence and your comfort is to you, when that time comes, we should talk about changing our approach to the infection.” | “I remember we talked about this some weeks ago. I think now we are at the point where more procedures and antibiotics would mean that you spend your final days in the hospital. Should we talk about options that could help you be comfortable and close to your family instead? |
Abbreviation: ICU, intensive care unit.
Without adequate source control, management of infections in patients with obstructive cancers becomes increasingly difficult owing to drug intolerances, barriers to using oral medications, and the development of increasingly drug-resistant pathogens. Benefits of antimicrobials become less clear in incurable infections, especially when continuation of therapy is at the detriment of other patient goals.
It can be helpful to present general care pathways at the end of life, such as (1) proceeding with interventions aimed at prolonging life to the greatest extent possible; (2) continuing the current level of medical support without further escalating treatments in the setting of clinical decline; or (3) transitioning to an exclusively comfort-focused approach, adding treatments to promote comfort and discontinuing extraneous interventions that do not directly contribute to comfort. A time-limited trial of antimicrobials may be used in any of these 3 scenarios, with predetermined, objective markers that would indicate progress or improvement within an agreed-upon time frame.
Engaging in difficult conversations with patients approaching the end of life requires attunement to emotional subtexts, as patients may be feeling overwhelmed, powerless, afraid, guilty, or uncertain. By actively listening and clearly understanding the patient's goals, some treatments will emerge as clear choices that ID physicians can recommend. Particular attention must be paid to those vulnerable patients who come from historically disadvantaged communities. These include racial and ethnic minorities, those with limited health literacy, and those for whom English is not the primary language. It is important to approach these difficult conversations with cultural humility and empathy.
Delaying goals of care conversations and keeping the focus on the smaller, tangible goal of treating an infection comes at an opportunity cost to patients whose antimicrobial treatments are not tailored to their values, priorities, and preferences. The ability to engage our patients in a discussion on goals of care can be meaningful, even in the face of parallel challenges, such as heavy consultation burden, diagnostic challenges, and antimicrobial overuse. We encourage ID physicians, who often can provide consistency in the chaos and uncertainty of a patient's terminal illness, to engage earnestly in these important conversations.
Author notes
The full version of this article can be found online at https://dbpia.nl.go.kr/cid.
Potential conflicts of interest. D. F. reports a grant from the National Institutes of Health (grant R25 AI 147369), unrelated to the current work. All other authors report no potential conflicts.
All authors have submitted the ICMJE Form for Disclosure of Potential Conflicts of Interest. Conflicts that the editors consider relevant to the content of the manuscript have been disclosed.
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