INTRODUCTION — For critically ill patients in the intensive care unit (ICU), death most commonly follows the withholding or withdrawal of ventilatory support (figure 1) [1-5]. However, the decision to withhold or withdraw ventilatory support is difficult for patients, families, and clinicians. It is influenced by many factors, including the patient's prognosis, individuals' values and treatment preferences, and cultural, philosophical, and religious beliefs [6,7].
Issues related to withholding or withdrawing mechanical ventilation of critically ill patients are reviewed here, including a discussion on both ethical considerations and the practical aspects of ventilator withdrawal. Family meetings, the setting in which many decisions to withhold or withdraw ventilatory support are made, a discussion of how to respond to requests for futile and potentially inappropriate therapies, and other palliative care issues that arise in the patients treated in the ICU are discussed separately. (See "Communication in the ICU: Holding a meeting with families and caregivers" and "Ethics in the intensive care unit: Responding to requests for potentially inappropriate therapies in adults" and "Palliative care: Issues in the intensive care unit in adults" and "Ethics in the intensive care unit: Informed consent".)
GUIDELINES — Several national organizations have published clinical practice guidelines for end of life care and withdrawal of ventilatory support, including the Canadian Critical Care Society and the American Thoracic Society (ATS) [8-10]. The recommendations discussed below are generally consistent with these guidelines.
ESTABLISHING GOALS — Ideally clinicians would discuss preferences for ventilatory support with their patients before a critical situation forces an emergency discussion. Doing so would allow families time to think about what are usually highly complex and emotionally difficult decisions. As in other areas of medicine, the patient's values and preferences should guide decisions regarding ventilatory support.
If patients are not able to state (or have not previously stated) their preferences regarding ventilatory support, clinicians should make concerted efforts to understand the patient's health-related values and personal treatment goals, which, depending on the underlying illness, may be achievable (eg, relief of pain and suffering or avoidance of a prolonged dependence on ventilatory support) or not (eg, restoring health, extending life). (See "Discussing goals of care".)
Despite the importance of establishing goals of care based upon the patient's values and preferences, such discussions are frequently delayed or never occur prior to a critical event. The reasons for this are complicated but may include:
●Reluctance on the part of clinicians due to uncertainty about the patient's diagnosis or prognosis.
●Fear that the surrogate or family will equate "limiting the use of invasive treatments" with "limiting care."
●Avoidance of the topic due to the ethically and emotionally challenging nature of these discussions.
In addition, up to 95 percent of critically ill patients are unable to make their own decisions, due to the effects of the underlying illness or medications being administered . Still, the patient may be able to intermittently communicate with clinicians during his or her intensive care unit (ICU) stay, which makes it possible to enter into discussions with him or her.
Role of surrogate decision makers — Although advance directives may be in place prior to an ICU stay, such directives are often not available. Even when patients have completed an advance directive, they are generally not specific enough to give dispositive guidance [12,13]. Clinical practice relies on surrogates to make or help make treatment decisions in these situations. In the United States, all states permit a patient-identified agent (durable power of attorney for health care, medical power of attorney, health care agent, or authorized surrogate) or a legal guardian to make decisions about life-sustaining treatment if he or she is unable to make medical decisions. (See "Legal aspects in palliative and end-of-life care in the United States", section on 'Surrogate decision makers' and "Advance care planning and advance directives", section on 'Surrogate decision-makers'.)
Guidelines have been issued by the American Thoracic Society regarding shared-decision-making that are in keeping with the issues discussed in this review .
Approaching conversations in the critically ill patient — For critically ill patients admitted to the ICU, we meet with their families as soon as possible and almost always within the first 48 hours after the admission. The purpose of the initial meeting is to [15-17]:
●Begin to develop a trusting relationship
●Provide emotional support to the surrogate or family
●Explain the medical situation
●Elicit the patient's values and preferences
A more extensive discussion on holding family meetings in the ICU is covered separately. (See "Communication in the ICU: Holding a meeting with families and caregivers".)
Discussing withholding or withdrawing mechanical ventilation — There are no absolute criteria to determine when and in what circumstances discussions on withholding or withdrawing mechanical ventilation should take place. However, it is appropriate to discuss withholding or withdrawing ventilatory support in several situations, including:
●When the available medical interventions are unlikely to achieve the patient's goals of care
●When the duration or invasiveness of treatment required to achieve the patient's medical goals is known to be unacceptable to the patient
For patients in whom withdrawal of ventilatory support is being considered, clinicians should avoid the phrase "withdrawal of care" because it is factually inaccurate and may result in the patient and/or his or her surrogates feeling that they will be abandoned. Instead, more precise phrases (eg, "withdrawal of life support" or "withdrawal of the ventilator") should be used.
In addition, we emphasize to patients and their surrogates that care focused on symptomatic management and palliative care will continue. One example would be to use the phrase, "We will provide aggressive symptom control care for your loved one, and we will change the focus of our care from life prolongation to relief of pain and suffering." (See "Palliative care: The last hours and days of life", section on 'Medication management'.)
Discussing do-not-escalate-treatment orders — Discussion of do-not-escalate-treatment (DNET) orders is provided separately. (See "Palliative care: Medically futile and potentially inappropriate therapies of questionable benefit", section on 'Do-not-escalate-treatment orders'.)
ETHICAL MISPERCEPTIONS ABOUT FOREGOING VENTILATORY SUPPORT — Decisions about withholding or withdrawing mechanical ventilation raise complex moral considerations . Below, we address four misperceptions that commonly arise about foregoing ventilatory support. A discussion on these and other ethical issues that arise in patients in the intensive care unit (ICU) is provided separately. (See "Ethics in the intensive care unit: Responding to requests for potentially inappropriate therapies in adults".)
●Withdrawal of ventilatory support is a form of patient abandonment – Patient abandonment refers to a clinician's act of withdrawing from an established clinician-patient relationship without giving reasonable notice or providing a competent replacement. In this context, the withdrawal of mechanical ventilation may be mistakenly perceived as a form of patient abandonment, even when it is done in accord with the patient's values and preferences.
This misunderstanding arises when withdrawing a treatment (ie, mechanical ventilation) from a patient is assumed to mean that the clinician has ceased to care for him or her. However, the withdrawal of mechanical ventilation is not abandonment because the clinician continues the therapeutic relationship with the patient or, in the case where the patient is discharged from the ICU, transfers the care to another provider. In either case, clinicians continue to provide medical treatments intended to palliate symptoms that occur following the withdrawal of ventilation.
●Foregoing ventilatory support violates the principal of beneficence – The ethical principle of beneficence requires clinicians to act to promote a patient's well-being. For some critically ill patients, the withdrawal of mechanical ventilation is an acknowledgment that the patient's interests will be best promoted by allowing him or her to die in a way that is consistent with his or her values and preferences, rather than live in ways he or she would deem to be a "state worse than death" [18-20]. (See "Ethical issues in palliative care".)
Withdrawal of mechanical ventilation may be perceived as a non-beneficent act even by clinicians who generally see their role as helping to extend life and forestall death. Ultimately, these circumstances remind us that there are limits to what medicine can accomplish and limits to what patients are willing to accept in pursuit of extended life.
●There is a difference between withholding and withdrawing ventilatory support – Withholding ventilatory support is sometimes seen as emotionally easier for clinicians and families to accept compared to withdrawing support, probably because there is a perception of less involvement in the patient's death. However, in multiple countries, including the United States and United Kingdom, there is no ethically meaningful distinction between withholding and withdrawing life-sustaining treatment. Both are permitted when doing so reflects the informed decision of a patient or his or her surrogate .
In addition, if withholding treatment was permitted but withdrawing treatment was not, patients would not be permitted to request a time-limited trial of intensive care because, once started, ventilatory support could not be withdrawn. As a result, they would be required to make an ''all-or-nothing'' decision in the early stage of an illness to either refuse ventilatory support or to authorize its indefinite use. This is ethically problematic because it would pressure patients who might desire a time limited trial of ventilatory support to forego it out of concern they would be kept alive on a ventilator indefinitely, which they might view as a ''state worse than death'' .
●It is unethical to administer sedatives and analgesics to dying patients if doing so may hasten death – For both patients and their families, one of the most important concerns is that pain or other forms of suffering (eg, dyspnea) will not be adequately alleviated if ventilatory support is withheld or withdrawn. Clinicians have a moral and ethical obligation to treat pain and other symptoms in a dying patient, even if doing so might hasten the patient's death. This is referred to as the "principle of double effect" and is discussed in more detail below.
The principle of double effect — For the patient in whom ventilatory support may be withheld or withdrawn, pain control can be justified by the principle of double effect (PDE), which distinguishes effects that are intended from those that are foreseeable though unintended. This depends upon an assessment of a clinician's intentions, which can be difficult to ascertain and may involve multiple simultaneous motivations . However, the PDE is in accordance with United States laws .
When applied specifically to the use of narcotics for the patient in whom ventilatory support is being withdrawn, the principle of double effect holds that so long as the intention is to control the patient's discomfort even if death may occur as a consequence of pain control. However, several conditions should be met to satisfy that the doctrine of double effect applies:
●The unintended effect cannot be the means to achieve the intended effect. As an example, administering potassium chloride will likely alleviate pain in the critically ill patient. However, the intended effect (pain relief) is achieved only after the unintended effect (death) occurs. Therefore, the doctrine of double effect cannot apply.
●The intended effect must be sufficiently important to justify the foreseeable but unintended outcome. As an example, in a patient very close to death, the relief of distressing symptoms is sufficiently important to permit the possibility of a hastened death from aggressive symptom management.
The PDE and how it applies to patients receiving opioids at the end of life is discussed in more detail elsewhere. (See "Ethical considerations in effective pain management at the end of life", section on 'Principle of Double Effect' and "Ethical considerations in effective pain management at the end of life", section on 'Opioid use'.)
CAUSES OF CONFLICT — Conflict may arise when there is disagreement as to whether withholding or withdrawing ventilatory support is the most appropriate course of action [24-26]. The contributions of strong emotional reactions to an acute life-threatening illness and deeply held religious or secular beliefs on the part of the patient, family, and clinicians themselves should not be underestimated. There are three main reasons conflict may occur:
●Lack of effective communication – Communication is consistently identified by the family members of intensive care unit (ICU) patients as the most important yet least well-accomplished aspect of quality of care [25,27-30]. Clinicians tend to underestimate the information needs of patients, surrogates, and families, and frequently lack the skills to communicate complex medical information . As a result, up to one-half of family members may not appropriately understand the patient's diagnosis, prognosis, or treatment, which can cause anxiety and confusion among family members [32,33]. (See "Communication in the ICU: Holding a meeting with families and caregivers".)
●Lack of emotional support – Inadequate emotional support may also contribute to conflict. As an example, one study reported that surrogates suffer from a negative emotional burden, including stress, guilt, and doubt about the decisions that were made .
●Value conflicts – Some conflicts arise due to genuine value conflicts about the appropriate plan of treatment among members of the clinical team, among family members, or between the family and the clinical team [35,36]. (See "Ethics in the intensive care unit: Responding to requests for potentially inappropriate therapies in adults".)
Resolving conflict — Regardless of whether the cause of conflict is poor communication or emotionally overwhelmed surrogates, empirical studies suggest that clinicians and surrogates can reach consensus about serious issues such as ventilatory support through ongoing and honest communication and negotiation. This was illustrated by an observational study in a medical ICU that found that, through the course of successive family meetings, clinicians and families were able to reach consensus about the appropriate plan of care in 96 percent of cases [37,38].
In addition, an ethics or palliative care consultant may be beneficial. This was demonstrated in a study in which 551 critically ill patients in whom a value conflict arose were randomly assigned an ethics consultation or to usual care . The group that received the ethics consultation had a shorter ICU length of stay and hospital length of stay among patients who died; an ethics consultation was viewed as helpful by almost 90 percent of respondents.
Several other suggestions to help manage conflicts include:
●Involvement of other members of the multidisciplinary team (eg, palliative care team, social workers, chaplains) to provide emotional support.
●Involvement of the patient's primary care physician also can help facilitate discussions, particularly if a therapeutic relationship among the patient, family, and the team of clinicians attending to the patient's serious illness has not been established.
Strategies to fairly resolve conflicts regarding decisions beyond the use of mechanical ventilation and that arise in the ICU are described separately. (See "Ethics in the intensive care unit: Responding to requests for potentially inappropriate therapies in adults", section on 'Six-step process to conflict resolution'.)
PRACTICAL ASPECTS OF WITHDRAWING MECHANICAL VENTILATION
Once the decision has been made to withdraw mechanical ventilation from a critically ill patient who is not expected to survive, the surrogate and family should be prepared for the dying process before ventilation is discontinued. Some concrete steps that should be taken include (see "Communication in the ICU: Holding a meeting with families and caregivers", section on 'End-of-life issues'):
●Preparing loved ones as witnesses of the dying process, including informing them of the anticipated changes in the respiratory pattern that often occur.
●Offering families the opportunity to meet with ancillary staff for emotional or psychological support (eg, clergy or a social worker) .
●Allowing families to spend time with their loved one prior to withdrawal of mechanical ventilation, in order to say goodbye and to facilitate a life review .
In a prospective trial of 875 relatives of dying patients in the ICU, a three-step, physician-driven, nurse-aided support strategy for relatives of patients with treatment withholding or withdrawal decisions was compared with standard care . The first step was an end-of-life conversation, the second was a physical presence of health care personnel in the room during the dying process, and a third a meeting to express condolences after death. The three-step program reduced the number of relatives with prolonged grief (PG) symptoms (21 versus 15 percent) and the median PG-13 score (19 versus 21) at six months. This study supports the practice of a structured system designed to improve communication and empathy to loved ones of the dying but may not be generalizable.
The following protocol is an example of how to humanely withdraw life-sustaining treatment in patients receiving mechanical ventilation. However, there are several caveats:
●The approach outlined below is intended for patients for whom the goals of care are focused on palliation of symptoms and who are expected to die following the withdrawal of mechanical ventilation.
●The strategy to manage extubation in a terminally ill patient should be individualized to reflect the clinical situation as well as the values and preferences of the patient. As an example, some patients may place a very high priority on maintaining as much mental clarity as possible through the dying process, even if this involves a greater risk of suffering . These patients may require a different strategy to manage respiratory distress compared with a patient who highly values symptom control and does not desire to be conscious at the end of life.
Although a successful pilot program that utilized a nurse-led algorithm involving respiratory therapists has been reported, most institutions individualize withdrawal of mechanical ventilation using a multidisciplinary the team approach .
Preparation — The main considerations to facilitate consistent approaches to withdrawing mechanical ventilation include the following :
●Ensure a do-not-resuscitate (DNR) order has been documented.
●Ensure that analgesics and sedatives are at the bedside – Patient distress can occur rapidly with cessation of ventilator support; therefore, it is important to ensure that appropriate medications are readily available at the bedside. We recommend preparing infusions of narcotics and sedatives, as well as bolus doses of rapidly acting agents (eg, fentanyl and lorazepam), to manage acute symptoms. (See "Palliative care: The last hours and days of life", section on 'Pain'.)
●Discontinue interventions that do not provide comfort. These include (see "Palliative care: The last hours and days of life", section on 'Medication management'):
•Routine evaluations that provide no comfort to the patient (eg, blood draws and radiographs).
•Medications (eg, antibiotics, vasopressors), supportive measures (eg, nutrition or intravenous fluids), and interventions (eg, dialysis).
•Routine monitoring of vital signs, if appropriate – This adds little to the clinicians' bedside assessment of distress in dying patients and may cause family members to pay more attention to the monitors and alarms than the patient. However, we acknowledge that some families may prefer to have some monitoring continue and this should be accommodated.
•Neuromuscular blocking agents – Neuromuscular blocking agents should be discontinued because neuromuscular blockade masks signs of discomfort and therefore creates a risk that patients will die with inadequately treated symptoms. Expert consultation (eg, palliative care or ethics consultants) should be sought in the very rare case in which it is felt that the return of neuromuscular function would be unduly burdensome to the patient or would cause intractable distress from neuromuscular abnormalities .
Withdrawal of ventilatory support
●At some centers, ventilatory support is rapidly titrated off (terminal weaning), with appropriate titration of narcotics and analgesics at each step to minimize patient discomfort. It is usually possible to decrease the ventilator support (ie, gradually decreasing the fraction of inspired oxygen and the amount of positive pressure ventilation) over a period of 10 to 30 minutes in a way that allows the patient to comfortably transition to spontaneous breathing on room air through the endotracheal tube. This approach may be valuable for patients who require high levels of ventilator support.
●Others prefer to extubate the patient without gradual decreases of ventilator support (immediate extubation). However, this approach requires very careful anticipatory dosing of opioids and close monitoring immediately after extubation given the risk of temporary respiratory distress. This approach may be valuable in patients with severe neurological injuries with minimal requirements of ventilatory support.
The optimal approach is unknown. However, one prospective study comparing terminal with immediate extubation reported that although immediate extubation was not associated with psychological distress in patients' relatives, it was associated with more airway obstruction and gasping, and pain compared to a rapid titration off of ventilator support and administration of sedatives and analgesics prior to extubation. Interestingly, immediate extubation was associated with less nurse job stress . However, this study is hard to interpret since it was not randomized, the increased rates of gasping in the immediate extubation group may relate to the way sedation and pain were managed before and during extubation and patients in the immediate extubation group were more likely to be comatose whereas those in the terminal weaning group were more likely to be suffering from respiratory failure.
At our center, we use the following process to remove the terminally ill patient from mechanical ventilation:
●Decrease mechanical ventilatory support settings incrementally over 15 to 30 minutes – With each reduction, careful assessment and treatment of any signs of respiratory distress are required.
●Administer bolus doses of intravenous analgesics (eg, fentanyl, morphine) as appropriate to treat any symptoms (eg, dyspnea). The required opiate doses will vary widely from patient to patient. For example, patients who have been on high doses of opiates will likely require higher doses to control symptoms relative to patients who have not been receiving opiates. There is no upper limit on acceptable doses, as long as the dose is selected with the goal to be proportional to the patient's symptoms and is titrated to the patient's symptoms. (See "Palliative care: The last hours and days of life", section on 'Pain'.)
Clinicians should avoid orders that call for a steady increase in the dose of an opiate infusion without reference to a patient evaluation (eg, for signs of pain or suffering) because they are ethically problematic and may appear to be aimed at causing respiratory depression (and death) rather than comfort. (See 'Ethical misperceptions about foregoing ventilatory support' above.)
●Assess the need for anticipatory dosing of opiates and sedatives immediately prior to extubation – In some situations, the withdrawal of mechanical ventilation from a patient will result in a sudden increase in dyspnea, even if the patient has been incrementally weaned from ventilator support and there has been a gradual titration of analgesics and sedatives. If anticipated, adequate medication should be provided beforehand (also known as anticipatory dosing) .
●Extubate the patient – Once the appropriate time has been identified, the patient should be extubated, which will allow for more comfort, free the patient from unnecessary lines and tubes prior to death, and facilitate a more natural dying process.
Occasionally, extubation will cause an increase in respiratory distress from upper airway obstruction. We generally manage this with rapid titration of short-acting intravenous narcotics. In rare circumstances, it may be necessary to temporarily apply a jaw thrust maneuver (by placing the fingers behind the angle of the jaw and bringing the jaw forward) until the analgesics adequately take effect.
●Continue to assess and treat symptoms – After extubation, patients should generally remain in a clinical setting that allows for frequent patient monitoring and treatment of symptoms until it is clear that their symptoms are well controlled and/or are not rapidly changing. Most patients undergoing withdrawal of ventilation in the intensive care unit (ICU) will die in the ICU . In particular, actively dying patients with difficult to treat symptoms may benefit from ongoing care in the ICU to ensure a comfortable death. (See "Palliative care: The last hours and days of life", section on 'Place of death'.)
For patients in whom uncontrollable symptoms are present after extubation, palliative sedation may be needed to provide an appropriate level of comfort. (See "Palliative sedation", section on 'Indications'.)
●Bereavement support should be offered to the surrogates and families – If available, ICUs should communicate with palliative care teams to ensure support of the patient and his or her families. Palliative care teams can provide support for the patient, family members, and clinical team, as well as assistance with symptom management. They are skilled in complex problems, including ethical difficulties, and work alongside and with existing teams; in some settings they also have their own beds within hospitals. Often the team can provide bereavement follow-up or link with other services that provide this. (See "Benefits, services, and models of subspecialty palliative care".)
●Surrogates and/or family members should be kept informed on the clinical status of their loved one during the process of ventilatory withdrawal and thereafter.
For most patients, death will occur within a short amount of time; in one study of over 1500 patients, the median time to death after withdrawal of ventilatory support was 0.9 hours (range, 0.25 to 5.5 hours) . In this study, predictors of a shorter time to death included:
●Race/ethnicity other than Non-Hispanic White (hazard ratio [HR] 1.17, 95% CI 1.01-1.35)
●Number of organs not working (per-organ HR 1.11, 95% CI 1.04-1.19)
●Vasopressors administered (HR 1.67, 95% CI 1.49-1.88)
●Intravenous fluids administered (HR 1.16, 95% CI 1.01-1.32)
●Admission to the surgical versus medical service (HR 1.29, 95% CI 1.06-1.56)
Symptom management during end of life care is described separately. (See "Palliative care: The last hours and days of life", section on 'Management of specific symptoms'.)
PATIENTS ON PROLONGED MECHANICAL VENTILATION — For patients requiring ventilatory support outside of the intensive care unit (ICU), including those patients requiring prolonged medical ventilation (defined as ≥21 days of mechanical ventilation for at least six hours per day), withdrawal of ventilation is not very different from what is described above. However, in the United States, this rarely occurs outside of the ICU setting. The topic of prolonged mechanical ventilation is discussed separately. (See "Management and prognosis of patients requiring prolonged mechanical ventilation".)
SOCIETY GUIDELINE LINKS — Links to society and government-sponsored guidelines from selected countries and regions around the world are provided separately. (See "Society guideline links: Palliative care" and "Society guideline links: Intensive care unit ethics".)
SUMMARY AND RECOMMENDATIONS
●It is appropriate to consider withholding or withdrawing mechanical ventilation when the available medical interventions are either unlikely to achieve the goals of care or become unacceptable to the patient. Thus, it is important that the goals of medical care (eg, restoring health, extending life, or relieving pain and suffering) and the patient's values and preferences be established early. (See 'Establishing goals' above.)
●Many patients are unable to participate in discussions about the goals of their medical care. In such cases, decisions are generally made by a surrogate decision-maker appointed by the patient or, in the absence of a patient-appointed surrogate, by consensus with the family. Many states have an established legal hierarchy of surrogate decision-makers when a surrogate has not been previously appointed by the patient. (See 'Establishing goals' above.)
●It is essential that patients and surrogates understand that withdrawal of ventilatory support is not the equivalent to withdrawal of patient care. (See 'Ethical misperceptions about foregoing ventilatory support' above.)
●Decisions regarding withholding or withdrawing life-sustaining therapy frequently cause conflicts between the clinical team and family, as well as within the family and clinical team. Regardless of the cause of the conflict, ongoing and honest discussion between the clinicians and the surrogate decision-maker or family is an important aspect of conflict resolution. (See 'Causes of conflict' above.)
●Once the decision has been made to withhold or withdraw life-sustaining measures, the surrogate and family should be prepared for the dying process. It should be reiterated and emphasized that the patient will receive attentive and compassionate care aimed at the relief of pain and suffering, maintaining dignity, and respecting cultural or religious beliefs. Cessation of monitoring should be considered, routine interventions that provide no comfort to the patient (eg, blood draws, radiographs) should be discontinued, and all therapies should be re-evaluated. Those therapies that do not contribute to patient comfort should be discontinued. (See 'Practical aspects of withdrawing mechanical ventilation' above.)
ACKNOWLEDGMENT — The UpToDate editorial staff acknowledges John Kellum, MD, who contributed to an earlier version of this topic review.
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