Information for Patients and Families About Ventilator Withdrawal

Fast Fact Number: 35

By: Charles F von Gunten MD, PhD, FACP, David E Weissman MD

Published On: February 20, 2025

Introduction    This is the last in a 3-part series on ventilator withdrawal. Fast Fact #33 reviewed a protocol for removing the ventilator; Fast Fact #34 reviewed medications for symptom control. Clinician counseling of families is a critical aspect of care for the dying patient who is to be removed from a ventilator.  Ideally the family will be involved in the decision to withdraw the ventilator and thus apprised of the goals of care. Before withdrawal, the following issues should be discussed.

Potential outcome of ventilator withdrawal   Assuming all other life-sustaining treatments have been stopped (e.g., vasopressors, medically administered nutrition and hydration), there are several potential outcomes: a) rapid death within minutes (typically patients with sepsis and multi-organ failure on maximal blood pressure support), b) death within hours to days, or c) stable cardiopulmonary function leading to a different set of care plans, including potential hospital discharge. Evidence suggests that most patients die within 24 hours after a terminal ventilator withdrawal.  Patients with anoxic brain injury and/or no organ failure and on minimal ventilatory settings have the greatest chance of achieving stable cardiopulmonary function and being discharged to a different environment.  If this is realistic, future management plans should be discussed prior to ventilator removal, since some families may desire to resume certain treatments, notably artificial hydration/nutrition. Generally, by the nature of the underlying illness and the established goals, clinicians can predict which of the three categories best applies for the patient with good accuracy. Regardless, all families should be prepared for some degree of prognostic uncertainty (see Fast Fact #30). Utilizing “I worry…” statements such as “I worry that time may be as short as hours to a few days after we extubate her” can be a concise way to communicate not just prognostic uncertainty, but empathy and humility as well.

The procedure of ventilator withdrawal   Never make assumptions about what the family understands. Describe the procedure in clear, simple terms and answer any questions. Families should be told before-hand the steps of withdrawal and whether it is planned/desired to remove the endotracheal tube.  In addition, they should be counseled about the use of oxygen and medications for symptom control.  Assure them that the patient’s comfort is of primary concern. Explain that labored breathing and signs of breathlessness may occur shortly after the extubation, but that they will be closely monitored and treated. Confirm that you will have medication available to manage any discomfort.  Ensure they know that the patient will likely be asleep and that involuntary moving, noisy or irregular breathing, or gasping may occur. Some families may wonder if leaving their loved one intubated and on the ventilator may be more comfortable. Explain that endotracheal (ET) tubes are a source of discomfort and anxiety for most patients and therefore are not recommended at the end of life when comfort is the primary goal. Explain how the family, clergy and others can be at the bedside before, during and after withdrawal.  If asked, explain that they can show love and support through touch, wiping of the patient’s forehead, holding a hand and talking to him or her.

Support the decision   Even though many families can make a definite decision for ventilator withdrawal, such a decision is always emotionally charged.  Families may second-guess themselves, especially if the patient appears to linger following ventilator withdrawal.  Clinician support, guidance and leadership are crucial, as the family will be looking to clinicians to ensure them that they are “doing the right thing.”  Furthermore, it is common for families to have concerns that their decision constitutes euthanasia or assisted suicide—explicit counseling from a clinician will be needed to distinguish these concepts.  Good end of life care nearly always requires a multi-disciplinary team of clinicians, nurses, social workers, chaplains, pharmacists, and others to support the family’s holistic needs following death and during the bereavement period (see Fast Fact #22).

Phrases to Avoid 

  • Avoid terms like “withdrawal of care” or “there’s nothing more we can do.” Besides being grossly inaccurate, they also can conjure fears of abandonment from clinicians.
  • Be careful not to promise a complete absence of suffering with words such as “We promise he won’t experience any more pain or discomfort.”  The hour or two after extubation can be associated with temporary symptom distress, which is why patients require such attentive care at this time. Focus instead on describing what comfort care means to you: “To us, comfort care is medical treatment of the natural dying process. That means we continue to care for her with all our focus and attention, but the principal aim will be on minimizing any physical, psychological, or spiritual suffering.”
  • Avoid providing exact prognostic estimates such as “3 days.”  Clinicians tend not to be very accurate in prognosticating with that level of accuracy and families may feel bewildered if that exact prognosis does not become reality.  Instead, offer prognostic estimates in ranges such as “between hours and days”, “days and weeks,” or “weeks and months.”

References 

  1. Adapted from: Emanuel LL, von Gunten CF, Ferris FF, eds.  Module 11: Withholding and Withdrawing Therapy.  The EPEC Curriculum:  Education for Physicians on End-of-life Care. Chicago, IL: The EPEC Project; 1999.  http://www.EPEC.net.
  2. Rubenfeld GD, Crawford SW. Principles and practice of withdrawing life-sustaining treatment in the ICU. In Managing Death in the Intensive Care Unit. Curtis JR and Rubenfeld GD, eds. New York, NY: Oxford University Press; 2001: pp127-147.
  3. de Groot YJ, Lingsma HF, Bakker J, Gommers DA, Steyerberg E, Kompanje EJ. External validation of a prognostic model predicting time of death after withdrawal of life support in neurocritical patients. Crit Care Med. 2012;40(1):233-238.
  4. Huynh TN, Walling AM, Le TX, Kleerup EC, Liu H, Wenger NS. Factors associated with palliative withdrawal of mechanical ventilation and time to death after withdrawal. J Palliat Med. 2013;16(11):1368-1374.
  5. Jennerich AL. An approach to caring for patients and family of patients dying in the ICU.  Chest 2024;166(1):127-135.
  6. Rawlings D, Tieman JJ, Sanderson C, Parker D, Miller-Lewis L. Never say die: death euphemisms, misunderstandings and their implications for practice. Int J Palliat Nurs. 2017;23(7):324-330.

Version History:  This Fast Fact was originally edited by David E Weissman MD.  2nd Edition published July 2005; 3rd Edition May 2015; 4th Edition February 2025.
Conflicts of Interest: None to report.

Fast Facts and Concepts are edited by Sean Marks MD (Medical College of Wisconsin) and associate editor Drew A Rosielle MD (University of Minnesota Medical School) with the generous support of a volunteer peer-review editorial board, and are made available online by the Palliative Care Network of Wisconsin (PCNOW). The authors of each individual Fast Fact and the Fast Fact and Concepts editors are solely responsible for that Fast Fact’s content. The full set of Fast Facts are available at Palliative Care Network of Wisconsin with contact information, and how to reference Fast Facts.

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