Abstract
Dear Editor:
We are members of a palliative care consult team (PCCT) in a large tertiary care hospital and have encountered varying practices for removing mechanical ventilation among attending physicians who rotate through the medical intensive care unit (MICU) on a monthly basis. Withdrawal of mechanical ventilation and removal of the endotracheal (ET) tube (terminal extubation) occur in clinical situations where prior attempts to wean the patient have not been successful; in cases of futility; when the family decides that continued intubation is a burden and source of suffering for the patient; and when the quality of life is unacceptable. In these situations we try to move the patient to our palliative care unit prior to extubation, but there are times when that is not possible (either because of bed availability or family preference) and the terminal extubation occurs in the MICU.
Some of the attending physicians will ask our team to manage the extubation, while others have firm opinions regarding what they believe to be best practices for terminal extubations. Rather than actually extubating the patient, they prefer to turn off pressers and dose with morphine or fentanyl and let the patient die while on the ventilator (terminal weaning). They feet that there is less “drama” this way, because the patient is heavily medicated and there is no possibility of respiratory distress.
The palliative care team, based on our experience in facilitating many planned extubations over the years, prefers to turn off the pressors, premedicate with morphine and lorazepam, bathe the patient, and when the patient is comfortable, take the ET tube out (terminal extubation) and let the family (if they wish) be close by until death. We know the ET tube is not comfortable (people have told us that it is like ‘breathing through a straw’) and acts as a barrier to family in being able to kiss the patient goodbye. We have also seen patients languish for hours with the ventilator on and, ultimately, the family asking for the machine to be shut off because they feel that their family member is suffering.
A recent experience occurred in the MICU in which we told the family that the ET tube would be taken out as part of the process of the planned extubation. The attending was unhappy with this plan, because he thought that it would be distressing for the patient and family to not leave the ET in place. His plan was to leave the ET tube in place and just turn the ventilator off. We talked with him at length about his concerns, but neither the attending nor the PCCT had research evidence to lend guidance to best practice.
A literature review yielded published extubation protocols but nothing other than anecdotal evidence (in the form of opinion article, small samples, or retrospective chart reviews) to support either protocol. Campbell 1 conducted a systematic review of the literature regarding withdrawing of mechanical ventilation and concluded that there is a lack of evidence to predict the best method for ventilator withdrawal and that procedures should be determined within the clinical context (i.e., degree of respiratory distress, premedication with opioids and benzodiazepines), and states that “every attempt should be made to extubate patients after ceasing mechanical ventilation because the ET tube is a source of iatrogenic discomfort. However, in some cases, particularly when the patient is unresponsive, it may be best to keep the ET tube, such as when the tongue is swollen, when gag and cough reflexes are absent, or when there is a large volume of pulmonary secretions.” 1
Post-extubation stridor (PES) has been documented as occurring in 22% of patients who have been intubated for more than 24 hours likely secondary to airway inflammation and edema. 2 One study documented that the incidence of PES can be reduced with one dose (40 mg) of methylprednisolone. 2 An observational study documented that in cases of withdrawal of life support in the ICU, extubating intubated patients before death was associated with higher family satisfaction with care (P=0.009); 3 but the study did not test protocols for extubation.
Unable to find evidence to support the efficacy of either practice, we sent an e-mail to the Hospice and Palliative Care Nursing Association (HPNA) advanced practice listserve as well as the mailing list for the Project on Death in America (PDIA) faculty scholars asking if they had “any evidence to support one approach over the other…and lacking research evidence…what you would say is best practice from your many years of experience.” The response to this query was impressive, with 34 responses in 48 hours. Many people referred to the End of Life/Palliative Education Resource Center (EPERC) “Fast Facts and Concepts on Withdrawing Ventilators in Patients Expected to Die”; in fact, both authors of these documents responded to our question. One wrote, “You are right—there is no evidence. In my judgment, the opinions expressed by your ICU docs represent their way of protecting themselves, emotionally. They project this onto the family. They are concerned that the patient won't protect the airway after extubation, and will die fully obstructed within minutes with some sort of drama and the family perceiving the patient was murdered by the extubation…. To me, the best palliateurs can work with the local cultures in a variety of ways, and not insisting on ‘one way.’ You are palliating the ICU docs and the ICU teams as well.” The other said, “I agree with your approach—fits my style, but would agree that there is likely no single ‘best answer,’ and I'm not aware of much data on this.”
The other resource that responders referred to was the work done by Randy Curtis. He wrote to say that “the data are thin on this topic…and the general practice is to make extubation the default approach. I think most family members appreciate having the tube out and the face look relatively ‘normal.’ However, I do occasionally come across cases with a lot of secretions where family are very worried about ‘agonal respirations'—a terrible term where the family prefers the tube be left in place. This is the minority of my experience, but I think it happens enough that I don't think one should be dogmatic about the ‘must extubate’ stance.”
All of the more emotion laden responses to our question came from nurse responders. One stated that the doctors “are treating the disease as a physiological state and not treating the patient as a human being.” Another said, “That sounds like cruel and unusual punishment. The final image for families is ghastly.…The last vision of my father was in the ED (emergency department) with the ET tube hanging out. It haunted me.” One told of a man with ALS who was released from the ventilator in his home who said, “I think having someone intubated would be stressful in addition to the barriers it presents to the family. Our patient, even though highly medicated, looked over to where his wife was and smiled very broadly just prior to his passing. An ET tube would also be a barrier to that happening.” Lastly, one nurse practitioner stated, “Every family is making a mental DVD of the disease and the dying process, as you know, that will be played in their minds as long as they live. Their own bereavement can be complicated if they perceive suffering. They may be the kind of family that could choose what they want in this situation, although some families look to the clinician for leadership and direction. The family needs to know the patient will be made comfortable through clinicians right at the bedside for the procedure and that they won't be left alone.”
The more situational responses were from the physicians. “I think (emphasize ‘think’) that there are pros and cons to either and it probably depends on how experienced the provider is with either method (and how good the team is at controlling sedation, secretions, pain, etc.)” One palliative care physician leader said, “Taking the tube out can be tough as they develop stridor and secretions and gasping even if sedated so I think it needs a case by case approach but worth trying to see what goes well. We agree that if the ventilator is stopped we should extubate them unless there are pulmonary reasons not to. So I am not sure I am being very helpful, but I think having a written plan for both ways makes it easier to decide which you choose and makes both right.”
Many people wrote about our question as falling into the grayness of an ethical issue that both nurses and physicians struggle with. Jonsen and colleagues 4 proposed a four-step process—(1) medical indications; (2) patient preferences; (3) quality of life; and (4) contextual features—for analyzing ethical implications of clinical cases. Utilizing this framework, we reviewed our clinical question. Regarding medical indications, assuming there is consensus in the desire to release a patient from the ventilator and the commitment and experience to manage symptoms, important clinical assessment findings should be considered. These include the presence of airway edema, other risk factors for stridor or airway obstruction, or any other finding that might complicate symptom management after extubation (e.g., intolerance or resistance to opioids or benzodiazepines). Any of these factors might militate toward leaving the ET tube in.
In consideration of patient preferences, any expression by the patient of an informed desire to remove or retain the ET tube should carry great weight in determining how to proceed (although such direct information is rare). Similar information from a health care agent or family member does not figure quite so strongly, since secondhand expressions of a patient's wishes are not always reliable unless documented in an advance directive (which typically does not address the specific detail of the ET tube itself ). Considering the patient's quality of life is important, but risky, since the proper perspective to take in assessing quality of life is the patient's, and that may be hard for even a well-meaning loved one to accurately judge. In many cases the quality of the experience for family or loved ones becomes important. The rare situation of hard-to-manage respiratory distress after extubation is very distressing to family members (and perhaps to the patient). Conversely, removal of the ET tube may allow closer contact between patient and loved ones; some observers perceive an important restoration of personhood and enhanced dignity after extubation.
Health care practitioners undertake the care of patients with the intent and the duty to make all reasonable efforts to help them. Many professionals find admitting that we cannot cure a person due to the futility of the situation and recommending extubation becomes part of the contextual case analyses. In this case, wanting to avoid ‘drama’ following removal of the ET tube might be reflective of prior distressful experience from the practitioner's personal or professional life.
We conclude that the best strategy for release from the ventilator in the case of terminal extubation is unclear. Given the paucity of evidence to guide terminal extubation, clinicians are often left with only their personal values and beliefs, family preferences, and staff input to guide clinical practice. 5 In the case of terminal extubation where the patient is not expected to survive, the clinical obligation and priority should be comfort and to prevent suffering—for the patient and their family. Billings 5 proposed that the humane response in this situation is to offer “preemptive high doses of opioids and sedatives for anesthesia, or at least deep sedation to assure comfort.” We suggest that in addition to premedication and in the absence of clinical indicators to the contrary (i.e., in the case of burns, airway trauma, or intubation for greater than 14 days, all of which increase the risk of stridor) that extubation be included as part of a humane response. It must be emphasized that discontinuation of mechanical ventilation with or without removal of the endotracheal tube can and should be done in a way that optimizes symptom management, respects patient and family desires, and acknowledges local culture and practice. Research evidence to guide practice would also be appreciated to help begin to ameliorate some of the gray issues associated with this issue.