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An Untimely End Despite End-of-Life Care Planning

Giovanni Elia, MD; Susan Barbour, RN, MS; and Wendy G. Anderson, MD, MS | August 1, 2018
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The Case

A 76-year-old man was admitted to the intensive care unit (ICU) after a cardiac arrest and loss of cardiac function for about 15 minutes. Afterward, the patient displayed worsening neurological status and a CT scan revealed diffuse brain edema and anoxic injury. The ICU team initiated conversation with the patient's family to establish goals of care.

After extensive discussions, the family agreed to a DNR [do not resuscitate] order for the patient, but they wanted more time before making a decision about transitioning to comfort care. The patient continued to decline, with loss of brain stem reflexes. After another week of conversations with the ICU team, including consultation from the palliative care service, the family decided to discontinue life-sustaining therapies and agreed to comfort measures and terminal extubation. Orders were written and the respiratory therapist and the patient's nurse were informed.

However, within a half hour of these actions, the family asked to speak with the ICU resident, reversed their prior decision, and stated that they wanted more time before transitioning to comfort measures. The ICU resident, who had been involved in the prior conversations, canceled the terminal extubation orders. However, this occurred at the end of shift, and the resident did not verbally communicate the order change to other members of the team. Another nurse who had been involved in the previous conversations found the canceled orders after the resident left, thought this was an error, and asked another physician, who was also unaware of the change in plans, to reinstate the terminal extubation orders. The patient was extubated. When the patient's daughter arrived shortly thereafter, she was very upset to find her father extubated. Eventually, the senior ICU team members were able to intervene and speak with the daughter to explain and apologize for the lack of communication. The patient died within few hours.

The Commentary

Commentary by Giovanni Elia, MD; Susan Barbour, RN, MS; and Wendy G. Anderson, MD, MS

Providing medical care that is inconsistent with a patient's goals is considered a deviation from quality of care standards (1) and may occur more often near the end of life. In a survey of bereaved family members, 13% observed that the patients received care that was not consistent with their wishes.(2) Among seriously ill patients who chose comfort-focused care, 35% reported receiving medical care that was not consistent with their preferences.(3)

Medical care that is inconsistent with patient preferences is associated with negative outcomes, including inadequate pain management, poor communication with clinicians, higher health care costs, and worse ratings of care experience.(2-4) Care inconsistent with patient goals also occurs in the ICU setting. For example, a retrospective study conducted in 141 ICUs in 105 United States hospitals found that 25% of patients who had a DNR code status underwent cardiopulmonary resuscitation.(5)

The patient in this case received care that differed from his family's wishes. We now consider care inconsistent with patients' goals in the ICU a preventable harm, in the same way a central line–associated bloodstream infection (CLABSI) is preventable.(6) This perspective becomes even more compelling given that 1 in 5 Americans die using ICU services and that this number will rise with the predicted doubling of persons over the age of 65 by 2030.(7) To prevent the provision of medical care that is inconsistent with patients' goals, we need to apply the principles of safety culture, just as we do to prevent CLABSI. This case is a compelling example of the need to engage patients and families with frontline clinicians in a partnership to establish a culture of safety in the ICU.(8)

Recommendations on best practices at the end-of-life from the American College of Critical Care Medicine emphasize the importance of family-centered care, shared decision-making, and symptom management in the process of the withdrawal of life-sustaining treatments.(9) Plans must be well communicated with the entire team to ensure smooth transitions. Communicating how symptoms will be managed during the process and ensuring all team members know the goals of the patient and family prepares the team for the process of life-sustaining therapies withdrawal. In this case, "orders were written and the respiratory therapist and the patient's nurse were informed" indicates a lack of interdisciplinary collaboration prior to the planned procedure. Additionally, the supervising physicians were not involved with or aware of the order writing and canceling process and were only involved after the extubation was complete.

This case also underscores the importance of continual contact with the family and suggests that transitions to comfort care in the ICU should not occur unless the family is at the bedside or at least has been called immediately prior to the extubation to confirm the plan. Finally, it highlights the importance of having a specified location in the medical record, accessible to all members of the interdisciplinary team, to document discussions with the family and the importance of making sure that goals of care are included as a key field in structured handoffs between providers.

Withdrawal of life support is a common practice in the ICU, and removing life-saving therapies requires as much procedural expertise and competence as other common ICU interventions.(9) Checklists have improved clinical practice in the ICU setting, including withdrawal of life-saving therapies.(10) They break complex tasks into simpler components, list the critical steps in the process, promote consistency in performance, and specify which tasks can be delegated.(11)

In our institution, we created the process of "The Huddle" for withdrawal of life-saving therapies. The Huddle is a multidisciplinary, multiteam meeting called by the nurse in charge of the patient, and all the involved teams are expected to have at least one member in attendance, including a senior or supervising provider. The Huddle uses a checklist (Figure and Table) to guide the process, individualizing it for each patient and family and ensuring adequate symptom management and care at this crucial juncture. Domains addressed in the checklist include summary of discussions with the family and their goals and specific preferences; plan for psychosocial and spiritual support for the family; patient's symptom management; order in which therapies will be withdrawn; anticipated patient trajectory; and discussion of challenges that may arise during the withdrawal process and how they will be addressed.

Having all members of the interdisciplinary team present at The Huddle facilitates team members reaching out to one another if questions arise. For example, in this case—one in which the family communicated a change in care goals to the resident—a huddle would have allowed the resident to know who to reach out to communicate the change in plan. The Huddle's discussion is documented in the electronic medical record; addendums to this note can be used to document subsequent changes to the plan.

Take-Home Points

  • Care inconsistent with patients' goals in the ICU should be considered a preventable harm, in the same way as central line–associated bloodstream infections.
  • Engagement of patients and families and frontline clinicians is necessary to establish a culture of safety in the ICU.
  • Preventing errors during the complex process of withdrawing life-saving therapies requires structured communication among the family and all staff involved in the care of the patient, clear processes for verbal communication about changes in plans, an area in the medical record where all clinicians can read and document changes to a plan, and routine involvement of supervising physicians.
  • A multidisciplinary, multiteam meeting using a checklist prior to writing the orders for withdrawal of life-saving therapies facilitates interdisciplinary collaboration to ensure preparedness and consensus, synergy with patient and family goals, and support for all clinicians involved.

Giovanni Elia, MD
Associate Chief of Inpatient Palliative Care Services
Division of Palliative Medicine
University of California, San Francisco

Susan Barbour, RN, MS
Clinical Nurse Specialist
Division of Palliative Medicine
University of California, San Francisco

Wendy G. Anderson, MD, MS
Associate Professor
Division of Palliative Medicine
University of California, San Francisco


1. Measuring What Matters. Chicago, IL: American Academy of Hospice and Palliative Medicine; 2014. [Available at]

2. Khandelwal N, Curtis JR, Freedman VA, et al. How often is end-of-life care in the United States inconsistent with patients' goals of care? J Palliat Med. 2017;20:1400-1404. [go to PubMed]

3. Teno JM, Fisher ES, Hamel MB, Coppola K, Dawson NV. Medical care inconsistent with patients' treatment goals: association with 1-year Medicare resource use and survival. J Am Geriatr Soc. 2002;50:496-500. [go to PubMed]

4. End of Life Care: A Patient Safety Issue. Quick Safety. July 2015;(15):1-4. [Available at]

5. Hart JL, Harhay MO, Gabler NB, Ratcliffe SJ, Quill CM, Halpern SD. Variability among US intensive care units in managing the care of patients admitted with preexisting limits on life-sustaining therapies. JAMA Intern Med. 2015;175:1019-1026. [go to PubMed]

6. Critical Care Innovations Group (CCIG). Keeping patients safe.

7. Angus DC, Barnato AE, Linde-Zwirble WT, et al; Robert Wood Johnson Foundation ICU End-Of-Life Peer Group. Use of intensive care at the end of life in the United States: an epidemiologic study. Crit Care Med. 2004;32:638-643. [go to PubMed]

8. Thornton KC, Schwarz JJ, Gross AK, et al; Project Emerge Collaborators. Preventing harm in the ICU—building a culture of safety and engaging patients and families. Crit Care Med. 2017;45:1531-1537. [go to PubMed]

9. Truog RD, Campbell ML, Curtis JR, et al. Recommendations for end-of-life care in the intensive care unit: a consensus statement by American College of Critical Care Medicine. 2008;36:953-963. [go to PubMed]

10. Hayes MM, Checkley W, Oakjones-Burgess K, Subhas S, Brower RG. Use of a checklist for the withdrawal of ventilatory support to improve the quality of death and dying and nurse comfort with terminal extubation in a medical intensive care unit. Am J Respir Crit Care Med. 2015;191:A3912. [Available at]

11. The Society for Maternal-Fetal Medicine (SMFM), Bernstein PS, Combs CA, Shields LE, Clark SL, Eppes CS; SMFM Patient Safety and Quality Committee. The development and implementation of checklists in obstetrics. Am J Obstet Gynecol. 2017;217:B2-B6. [go to PubMed]


Figure. Transition to Comfort Care—ICU Huddle Checklist

Click on thumbnail for full view of Figure.


Table. Nursing Checklist.

#tbl1 td { padding: 10px; text-align: left}
Return huddle checklist to charge nurse when completed
Ensure you have adequate range of opioids/benzos for optimal symptom control
Give opioid & benzo boluses in response to symptoms assessed or anticipated
Documentation should reflect WHY additional boluses given & WHY infusion rate changed
Consider ways to involve the family in care (hair washing, combing, massage, post-mortem care, music, photos, shaving, etc.)
Give family the "Information for Loved Ones at EOL" (English/Spanish)
"Butterfly" or "Respect Privacy" sign on the door
Order Comfort Care basket (APeX order "Special Food Request")
This project was funded under contract number 75Q80119C00004 from the Agency for Healthcare Research and Quality (AHRQ), U.S. Department of Health and Human Services. The authors are solely responsible for this report’s contents, findings, and conclusions, which do not necessarily represent the views of AHRQ. Readers should not interpret any statement in this report as an official position of AHRQ or of the U.S. Department of Health and Human Services. None of the authors has any affiliation or financial involvement that conflicts with the material presented in this report. View AHRQ Disclaimers
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