Society of Critical Care Medicine Clinical Practice Guidelines on Adult End-of-Life Care in the ICU

RATIONALE Evidence-based practice has evolved significantly since the release of the 2008 American College of Critical Care Medicine (ACCM) Consensus Statement of recommendations for end-of-life (EOL) care in the ICU. These guidelines represent new knowledge and address previously unconsidered issues. OBJECTIVES To identify and disseminate evidence-based recommendations based on current research to better understand how to deliver appropriate and effective adult EOL care in the ICU. INTRODUCTION A multidisciplinary team approach to EOL care in the ICU is crucial regardless of age. Up to 20% of ICU patients have goals that are not medically attainable or their treatment plan does not align with their achievable goals (1,2). Thus, it is paramount that we better understand how to assist with decision-making, mitigate conflict about treatment goals, address suffering, and enhance capacity for adult EOL care in the ICU. This includes detailed knowledge of how EOL care fits into the delivery of high-quality ICU care as well as into such processes as organ donation. Further discussion of organ donation is beyond the scope of this guideline. We refer you to your health system policies and local state laws for further information regarding discussion of organ donation. Recognizing that terminology may vary between regions, we provide a supplementary glossary (https://links.lww.com/CCM/H792) of terms commonly used in EOL care. METHODOLOGY Detailed methods can be found in the Supplementary Materials (https://links.lww.com/CCM/H791). PANEL SELECTION A call for interested panel members was submitted to the Society of Critical Care Medicine (SCCM) membership and through the SCCM Ethics Committee membership in 2021. Selection criteria included: diversity of professional expertise in clinical care and/or research in topic areas associated with EOL care in the ICU and/or ethics; diversity of practice environment to include urban, suburban, and rural healthcare system representation; diversity of stage in career to include early-, mid-, and advanced-career clinicians; diversity in personal demographics; and representation of patient/family perspectives with the intent that our panel represent the diverse communities to which our adult ICU patients belong. QUESTION SELECTION AND OUTCOME PRIORITIZATION The membership of the 2020–2021 SCCM Ethics Committee developed an initial list of guideline questions. Working with the methodologists, the panel chairs and co-chairs then edited this list and structured it in Population, Intervention, Comparison, and Outcome (PICO) format. The PICO questions were organized into three domains: improving communication about EOL care in the ICU, improving provision of EOL care/symptom management for patients in the ICU, and addressing the educational needs of clinicians, patients, families and surrogate decision-makers in ICU EOL care. This proposed list was circulated to the guideline panel, and in a series of teleconferences, including all panelists, the questions were modified and refined into a final list of ten PICO questions. Based upon clinical interest and expertise, the chairs assigned panelists to PICO question working groups. Following GRADE (a structured framework for evaluating and grading the quality of evidence) guidance, each working group, led by one of the chairs or co-chairs, refined a list of outcomes for each PICO question, which were categorized according to their importance for decision-making as either “critical,” “important,” or “of limited importance,” considering the perspectives of patients, families, and ICU staff (Table 1) (3). TABLE 1. - Summary of Recommendations PICO Question Recommendation Strength of Recommendation 1.0. Improving communication about EOL care in the ICU 1.1. Should we recommend specific interventions to enhance shared decision-making between patients, family members/surrogates, and the clinical team? (clinical team can include ICU, but also other specialty services, such as palliative medicine, surgery, oncology)? 1.1. We suggest using structured tools to facilitate shared decision-making for EOL treatment decisions in the ICU. Conditional recommendation, moderate certainty evidence Remark: While there is no single ideal tool to use, those studied in the ICU setting include communication facilitators; structured meeting plans; and paper/web-based decision aids. 1.2. Should we recommend specific interventions to ensure procedural due process for substitute decision-making on behalf of decisionally incapable patients? 1.2a. We suggest ICUs develop resources for educating substitute decision-makers on their role in making decisions on behalf of decisionally incapable patients. Conditional recommendation, low certainty evidence 1.2b. ICUs should have a standardized process for identifying and documenting the legal surrogate decision-maker for decisionally incapable patients, including those for whom a surrogate cannot be identified, in accordance with local laws and organizational policy. Good practice statement Remark: The process for doing this is best done a hospital/system level and the persons responsible may vary between ICUs but could include the clinical team, social workers, ethics team, legal services, or risk management. 1.3. Should we recommend consultation with such services as clinical ethics, moral distress, palliative medicine, psychology, and/or pastoral/spiritual care to prevent or mitigate conflicts over treatment decisions at EOL? 1.3. We suggest proactive consultation of Palliative Care/Palliative Medicine and/or Ethics Consult Service, when available, to assist with defining goals of care for ICU patients who may no longer benefit from critical care. Conditional recommendation, low certainty evidence 1.4. Should we recommend specific institutional policies to reduce futile and potentially inappropriate treatments when there are conflicts during EOL decision-making? 1.4. We suggest implementing institutional policies to address conflicts over futile and potentially inappropriate treatments in the ICU. Conditional recommendation, low certainty evidence 2.0. Improving provision of EOL care/symptom management for patients in the ICU 2.1. Should we recommend specific treatments to ensure delivery of effective symptom management for dying ICU patients? 2.1. We suggest using protocolized approaches to withdrawal of life-sustaining treatments and symptom management in the ICU, including assessment and management of symptoms pre-extubation, during weaning, and after extubation. Conditional recommendation, moderate certainty evidence 2.2. Should we recommend specific interventions to address the cultural, spiritual, and family traditions and needs of patients and families in the ICU at the EOL? 2.2a. ICU clinicians should explore and support patient and family cultural, spiritual, and family traditions at the EOL. Good practice statement 2.2b. We suggest using a semi-structured approach to supporting patients and families and addressing spiritual care needs including an introductory meeting, weekly follow-up, and post-hospital discharge follow-up. Conditional recommendation, low certainty evidence 2.3. Should we recommend specific interventions such as collaboration with palliative medicine, mental health specialists, spiritual care, or other care process strategies such as care protocols to address, prevent, or mitigate suffering for ICU patients who are at risk of dying in the ICU? 2.3. We suggest consultation and collaboration with an Ethics Consult Service and/or Palliative Medicine, when available, to address the suffering of ICU patients and families at the EOL, when there are challenges in mitigating conflicts, distress, or suffering. Conditional recommendation, low certainty evidence 3.0. Addressing educational needs of clinicians, patients, families, and surrogate decision-makers in ICU EOL care 3.1. Should we recommend strategies and policies to identify, prevent, and mitigate inequities based upon gender, gender identity, sexual orientation, race, ethnicity, faith traditions, country of origin, or socioeconomic status at the EOL? 3.1a. We have insufficient evidence to recommend for or against specific interventions to identify and reduce unmet palliative care needs of specific populations receiving EOL care in the ICU. No recommendation, low certainty evidence 3.1b. ICU clinicians providing EOL care should explore and address patient palliative care needs, considering a patient’s gender, gender identity, sexual identity, race, ethnicity, faith traditions, country of origin, primary language, and socioeconomic status. Good practice statement 3.2. Should we recommend specific interventions or strategies, such as palliative care education, to increase the capability of ICU team members to deliver high-quality EOL care in the ICU? 3.2. We suggest providing education and training in palliative care for all ICU team members to improve the capability of providing EOL care in the ICU. Conditional recommendation, very low certainty evidence 3.3. Should we recommend specific interventions or strategies, such as education efforts, to improve the understanding and expectations of patients at risk of ICU admission, their families, and non-ICU clinicians about EOL care in the ICU? 3.3. We suggest clinicians provide educational interventions to patients/families/surrogates at risk of ICU admission to improve their understanding of ICU and EOL treatment options, realistic treatment outcomes, and advance care planning. Conditional recommendation, low certainty evidence EOL = end of life. SEARCH STRATEGY AND STUDY SELECTION A medical librarian conducted systematic searches of article databases and clinical trial registries from database inception to January 31, 2023; this was subsequently updated to October 8, 2024 (Supplemental Materials: Search Strategies, https://links.lww.com/CCM/H791). Search results were uploaded to COVIDENCE (Covidence, Melbourne, VIC, Australia) for screening. Each reference was screened in duplicate by two screeners, and any reference marked by either screener as potentially relevant was advanced for full-text screening. Full-text screening was done in duplicate, with the two methodologists (J.C.R. or S.O.) making a final decision of study eligibility in the event of disagreement between the two screeners (Supplementary Materials: PRISMA Flow Diagrams, https://links.lww.com/CCM/H791). DATA ABSTRACTION, ANALYSIS, AND EVIDENCE SUMMARIES The methodology team conducted data abstraction using a standardized spreadsheet, assessing risk of bias using the modified Cochrane Risk of Bias tool for randomized controlled and the modified (a tool that the risk of bias in tool for of evidence for each PICO question were conducted using for and Cochrane we risk and risk or standardized as each with a each for which there was data available, we the certainty of evidence as or in accordance with GRADE practice We used the evidence available, or data not to was in and to be of low AND Each working on the evidence and through an framework to develop a for each PICO The the of and the certainty of and of each The panel on each recommendation, and research Following SCCM of of panel was for a We used GRADE terminology for recommendations and for To practice we used clinicians AND We suggest using structured tools to facilitate shared decision-making for EOL treatment decisions in the ICU recommendation, moderate certainty Remark: While there is no single ideal tool to use, those studied in the ICU setting include communication facilitators; structured meeting plans; and decision aids. decision-making is to care. approaches to shared decision-making vary as for and the and of patients and their families into EOL and other structured tools are to enhance the between the care that patients and their and A systematic of of tools for shared decision-making found evidence that improve patient and family and quality of to the of such tools may in the improve in EOL decision-making and care. The evidence does not a on such patient outcomes as decisions about treatment and of does that tools to reduce and other mental health symptoms family members of ICU patients of the any in the of which to be to to of the tools studied were to patients and families, but their to information about in and should be to clinicians and was it was not The associated with the of a tool from for a communication to low a decision The of structured tools the to their is that to be to their local and may and staff education and for for we suggest a on and decision can be standardized for and with other tools are of low the for a conflict of interest with this PICO question and not on We suggest ICUs develop resources for educating substitute decision-makers on their role in making decisions on behalf of decisionally incapable patients recommendation, low certainty ICUs should have a standardized process for identifying and documenting the legal surrogate decision-maker for decisionally incapable patients, including for those for whom a surrogate cannot be identified, in accordance with local laws and organizational Remark: The process for doing this is best done at a hospital/system level and the persons responsible may vary between ICUs but could include the clinical team, social workers, ethics team, legal services, or risk management. ICU patients are decisionally incapable and on substitute decision-makers who may not their goals and to decisions about EOL care. The primary benefit of a substitute decision-maker is that patients have EOL decisions and of in the ICU While there are legal for to identify the substitute this is not done and decision-makers are with their or may not have treatment goals and with the patient The panel a Good Statement on the of this is evidence regarding education and of substitute decision-makers in their role using and the certainty of evidence is low due to from the of the may improve quality of shared decision-making and to develop and may vary but are not moderate or The panel a supporting their decision-maker education interventions may improve quality of shared decision-making, and family mental health symptoms and may also between the substitute decision-maker and the clinical team interventions may vary on the health and of the process and 1) which approaches to identifying and educating surrogate decision-makers best in EOL decisions that are with legal and patient and how systematic approaches to educating substitute decision-makers vary between and faith traditions decision-making may not be and how this may We suggest proactive consultation of Palliative Care/Palliative Medicine and/or Ethics Consult Service, when available, to assist with defining goals of care for ICU patients who may no longer benefit from critical care recommendation, low certainty conflicts in EOL decision-making can have on ICU families and on members of the clinical This on low the of services may of expertise to ICU clinicians, patients, and their families as the of communication and decision-making at the EOL. and research are associated with each of services, of which have studied have outcomes of interventions by palliative and clinical ethics, but not the of outcomes associated with either have on services or pastoral/spiritual care. Thus, there are in the evidence recommendations for this of services a that upon the their their and the of the patient’s family and care evidence that palliative and clinical ethics in a moderate increase in decisions to treatments and in a in ICU and of to the that have an on patient care at the the clinical of this the of palliative may reduce family in their the quality of communication with services may be to families regarding resources to and services is of low is that vary significantly due to in the of expertise, and education for These services also in terms of support clinical ethics consultation spiritual care consultation is is services to in health the the is to vary between clinical and patient populations due to in and to we suggest the of controlled on the outcomes of such interventions as and spiritual care in addressing the that can in the of EOL We also suggest research to the outcomes of moral consultation on this of ICU care. We suggest implementing institutional policies to address conflicts over futile and potentially inappropriate treatments in the ICU recommendation, low certainty during EOL decision-making in the ICU can to potentially inappropriate increase suffering for patients and families, communication between and patients, families, and treatment and is limited evidence regarding institutional policies to reduce potentially inappropriate treatment is low certainty evidence that such policies reduce the of treatments to patients can support clinical and have the to reduce and moral distress, evidence on this is institutional support for or treatments that be a may clinicians that are to local and best for EOL care. A may improve by that treatment decisions are by a framework that can be to all patients. can due process and increase patients are to care in accordance with process and procedural such as criteria for use, patient/family medical ethics and institutional and are to ensure that such policies are used and may also clinicians and for providing care by for decision-making and which interventions should or should not be to reduce potentially inappropriate treatments should be with in the data on of ICU care the to improve and the and of ICU treatment have such policies in that are a of research on the of institutional policies is to understand on patient and family and moral We suggest using protocolized approaches to withdrawal of life-sustaining treatments and symptom management in the ICU, including assessment and management of symptoms pre-extubation, during weaning, and after recommendation, moderate certainty from ICU level of care to care life-sustaining treatment including and the management of diverse symptoms by the ICU and the of an approach to ICU care processes in a certainty evidence was found in of the for of after and and This study was limited by due to a = in = in A of three of very low to low certainty may in of after of and was very low certainty evidence that may improve symptom management and very low certainty evidence of on family health evidence a protocolized approach to in the ICU to improve symptom management for patients. a does not to the dying process and is to identify a for either may be used a protocolized approach to that studied by and such as assist or patients, may not well into protocols for The process should be by No data was to protocolized to care, or to weaning, but the of and a to to we that protocols are No evidence to one a over in the in or system of ICU clinicians should explore and support patient and family cultural, spiritual, and family traditions at the EOL in patient/family goals and to goals at the EOL, such as of may of protocols to the needs of is that ICU clinicians and to support goals, and of goals in the of EOL care. Following GRADE guidance, the panel a Good Statement regarding patient/family expectations that cultural, spiritual, and family traditions should be and into the care plan by the healthcare team EOL care in the ICU. SCCM on Care may be in We suggest using a semi-structured approach to supporting patients and families and addressing spiritual care needs including an introductory meeting, weekly follow-up, and post-hospital discharge recommendation, low quality the of a spiritual care on the of ICU family in a and found that a semi-structured approach may improve symptoms of spiritual and family with care for those who to was no evidence of in the is but not ICUs have to spiritual care through current their healthcare are care is a health system and does not for this study evidence of the of spiritual care services to families and of the study a on spiritual and needs but not needs, low representation of faith traditions other and low representation of and is to identify spiritual care delivery using approaches in the care of ICU patients at the EOL and their is also to identify associated care needs as a from spiritual care We suggest consultation and collaboration with an Ethics Consult Service and/or Palliative Medicine, when available, to address the suffering of ICU patients and families at the EOL, when there are challenges in mitigating conflicts, distress, or suffering recommendation, low certainty A approach is to address the suffering of ICU patients at risk of dying and mitigate and between patients, families, and medical can be collaboration care, symptom and care Palliative care are at about and treatment and interventions with patient for those the EOL that of palliative care in the ICU symptom of and to appropriate care including with mental health suffering, such as and that can care patients and families and critical standardized care protocols and approaches to symptom family and decision-making, a environment and supporting clinical staff mental health support can improve decision-making and spiritual care and during EOL decision-making it may in with care the panel found low certainty evidence for the of palliative care consultation for symptom management in the ICU due to the and of A single the two palliative care spiritual care consultation in the ICU. evidence that palliative care and spiritual care consultation may improve family outcomes, including with care and mental health is a of data on and the and of the panel limited evidence crucial for We have insufficient evidence to recommend for or against specific interventions to identify and reduce unmet palliative care needs of specific populations in EOL care in the ICU recommendation, low certainty ICU clinicians providing EOL care should explore and address patient palliative care needs, considering a patient’s gender, gender identity, sexual identity, race, ethnicity, faith traditions, country of origin, primary language, and socioeconomic status and meeting the needs of a diverse of ICU patients at the EOL is a of and ICU care. certainty evidence that the of EOL care in the ICU in and including in the ICU, decisions to of services effective symptom delivery of care, and quality of and dying Following GRADE the panel a Good Statement that clinicians providing EOL care explore and address unmet palliative care studied the of a communication for family members of ICU patients that is to reduce inequities in unmet palliative care needs, for This found a benefit to families with families in identifying unmet palliative care The study was limited by a and the families may have benefit are found that of a palliative care team for ICU patients during the may provide an for palliative care found that a palliative care consultation for patients using the was associated with a of of status to not the research is on how to best identify and the needs of ICU from communities to bias in healthcare of communities be in study inception and should with communities of doing research or The of a diverse healthcare team on how EOL care is by of social methods in current research of the unmet palliative care and EOL needs of populations in the ICU at the EOL should be We suggest providing education and training in palliative care for all ICU team members to improve the capability of providing EOL care in the ICU recommendation, very low certainty The of palliative care in the ICU is by the Consensus for Palliative the the Improving Palliative Care in the ICU and the Society of Care Medicine is on the importance of improving quality of futile and potentially inappropriate improving and families during decision-making of the guidelines the capacity of to EOL care can improve patient care by how to and symptoms patients the EOL. clinicians have the knowledge and to to patients and families about These guidelines are a for healthcare team in non-ICU patient populations palliative care quality of symptom distress, and patient and and in the quality of ICU primary palliative care and to in specialty palliative care services significantly the of interventions the EOL. These challenges can decision-making symptom and care with goals, in in treatment during EOL care The of specialty palliative care consultation by and and is by a of on quality palliative care to palliative care is and is by organizational and/or ICU team members in primary palliative care knowledge and is for primary palliative care into the ICU, improving care quality for patients by addressing and palliative needs, and of when palliative care consultation is appropriate to care. educational interventions for ICU have results to A quality education in the ICU in a in ICU of but no on or outcomes EOL ICU education knowledge of and symptom and and clinical for ICU for patients training for ICU by palliative care a in of in patients with interventions to improve ICU team communication using educational in in communication ICU and The in resources and of educational that but are to be effective to improve communication research in ICU EOL care education is to better understand which educational interventions and be effective with on improving staff in palliative care, the of EOL care, and and outcomes at the EOL in the ICU. 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