50 Shades of Gray

Marianne Matzo, PhD, FAAN1 and Steve R. Orwig, MD2

Dear Editor:We are members of a palliative care consult team (PCCT)

in a large tertiary care hospital and have encounteredvarying practices for removing mechanical ventilationamong attending physicians who rotate through themedical intensive care unit (MICU) on a monthly basis.Withdrawal of mechanical ventilation and removal of theendotracheal (ET) tube (terminal extubation) occur inclinical situations where prior attempts to wean the patienthave not been successful; in cases of futility; when thefamily decides that continued intubation is a burden andsource of suffering for the patient; and when the quality oflife is unacceptable. In these situations we try to move thepatient to our palliative care unit prior to extubation, butthere are times when that is not possible (either because ofbed availability or family preference) and the terminal ex-tubation occurs in the MICU.

Some of the attending physicians will ask our team tomanage the extubation, while others have firm opinions re-garding what they believe to be best practices for terminalextubations. Rather than actually extubating the patient, theyprefer to turn off pressers and dose with morphine or fentanyland let the patient die while on the ventilator (terminalweaning). They feet that there is less ‘‘drama’’ this way, be-cause the patient is heavily medicated and there is no possi-bility of respiratory distress.

The palliative care team, based on our experience in facil-itating many planned extubations over the years, prefers toturn off the pressors, premedicate with morphine and lor-azepam, bathe the patient, and when the patient is comfort-able, take the ET tube out (terminal extubation) and let thefamily (if they wish) be close by until death. We know the ETtube is not comfortable (people have told us that it is like‘breathing through a straw’) and acts as a barrier to family inbeing able to kiss the patient goodbye. We have also seenpatients languish for hours with the ventilator on and, ulti-mately, the family asking for the machine to be shut off be-cause they feel that their family member is suffering.

A recent experience occurred in the MICU in which we toldthe family that the ET tube would be taken out as part of theprocess of the planned extubation. The attending was un-happy with this plan, because he thought that it would bedistressing for the patient and family to not leave the ET inplace. His plan was to leave the ET tube in place and just turnthe ventilator off. We talked with him at length about his

concerns, but neither the attending nor the PCCT had researchevidence to lend guidance to best practice.

A literature review yielded published extubation protocolsbut nothing other than anecdotal evidence (in the form ofopinion article, small samples, or retrospective chart reviews)to support either protocol. Campbell1 conducted a systematicreview of the literature regarding withdrawing of mechanicalventilation and concluded that there is a lack of evidence topredict the best method for ventilator withdrawal and thatprocedures should be determined within the clinical context(i.e., degree of respiratory distress, premedication with opi-oids and benzodiazepines), and states that ‘‘every attemptshould be made to extubate patients after ceasing mechanicalventilation because the ET tube is a source of iatrogenic dis-comfort. However, in some cases, particularly when the pa-tient is unresponsive, it may be best to keep the ET tube, suchas when the tongue is swollen, when gag and cough reflexesare absent, or when there is a large volume of pulmonarysecretions.’’1

Post-extubation stridor (PES) has been documented as oc-curring in 22% of patients who have been intubated for morethan 24 hours likely secondary to airway inflammation andedema.2 One study documented that the incidence of PES canbe reduced with one dose (40 mg) of methylprednisolone.2 Anobservational study documented that in cases of withdrawalof life support in the ICU, extubating intubated patients be-fore death was associated with higher family satisfactionwith care (P = 0.009);3 but the study did not test protocols forextubation.

Unable to find evidence to support the efficacy of eitherpractice, we sent an e-mail to the Hospice and Palliative CareNursing Association (HPNA) advanced practice listserve aswell as the mailing list for the Project on Death in America(PDIA) faculty scholars asking if they had ‘‘any evidence tosupport one approach over the other.and lacking researchevidence.what you would say is best practice from yourmany years of experience.’’ The response to this query wasimpressive, with 34 responses in 48 hours. Many people re-ferred to the End of Life/Palliative Education Resource Center(EPERC) ‘‘Fast Facts and Concepts on Withdrawing Ventila-tors in Patients Expected to Die’’; in fact, both authors of thesedocuments responded to our question. One wrote, ‘‘You areright—there is no evidence. In my judgment, the opinionsexpressed by your ICU docs represent their way of protectingthemselves, emotionally. They project this onto the family.

1Department of Nursing, University of Oklahoma, Oklahoma City, Oklahoma.2Stephenson Cancer Center, Oklahoma City, Oklahoma.

JOURNAL OF PALLIATIVE MEDICINEVolume 16, Number 8, 2013ª Mary Ann Liebert, Inc.DOI: 10.1089/jpm.2013.0185

833

They are concerned that the patient won’t protect the airwayafter extubation, and will die fully obstructed within min-utes with some sort of drama and the family perceiving thepatient was murdered by the extubation.. To me, the bestpalliateurs can work with the local cultures in a variety ofways, and not insisting on ‘one way.’ You are palliating theICU docs and the ICU teams as well.’’ The other said, ‘‘I agreewith your approach—fits my style, but would agree thatthere is likely no single ‘best answer,’ and I’m not aware ofmuch data on this.’’

The other resource that responders referred to was thework done by Randy Curtis. He wrote to say that ‘‘the data arethin on this topic.and the general practice is to make ex-tubation the default approach. I think most family membersappreciate having the tube out and the face look relatively‘normal.’ However, I do occasionally come across cases with alot of secretions where family are very worried about ‘agonalrespirations’—a terrible term where the family prefers thetube be left in place. This is the minority of my experience, butI think it happens enough that I don’t think one should bedogmatic about the ‘must extubate’ stance.’’

All of the more emotion laden responses to our questioncame from nurse responders. One stated that the doctors‘‘are treating the disease as a physiological state and nottreating the patient as a human being.’’ Another said, ‘‘Thatsounds like cruel and unusual punishment. The final imagefor families is ghastly..The last vision of my father was inthe ED (emergency department) with the ET tube hangingout. It haunted me.’’ One told of a man with ALS who wasreleased from the ventilator in his home who said, ‘‘I thinkhaving someone intubated would be stressful in addition tothe barriers it presents to the family. Our patient, eventhough highly medicated, looked over to where his wife wasand smiled very broadly just prior to his passing. An ET tubewould also be a barrier to that happening.’’ Lastly, one nursepractitioner stated, ‘‘Every family is making a mental DVDof the disease and the dying process, as you know, that willbe played in their minds as long as they live. Their ownbereavement can be complicated if they perceive suffering.They may be the kind of family that could choose what theywant in this situation, although some families look to theclinician for leadership and direction. The family needs toknow the patient will be made comfortable through clini-cians right at the bedside for the procedure and that theywon’t be left alone.’’

The more situational responses were from the physicians.‘‘I think (emphasize ‘think’) that there are pros and cons toeither and it probably depends on how experienced theprovider is with either method (and how good the team is atcontrolling sedation, secretions, pain, etc.)’’ One palliativecare physician leader said, ‘‘Taking the tube out can betough as they develop stridor and secretions and gaspingeven if sedated so I think it needs a case by case approachbut worth trying to see what goes well. We agree that ifthe ventilator is stopped we should extubate them unlessthere are pulmonary reasons not to. So I am not sure I ambeing very helpful, but I think having a written plan for bothways makes it easier to decide which you choose and makesboth right.’’

Many people wrote about our question as falling into thegrayness of an ethical issue that both nurses and physiciansstruggle with. Jonsen and colleagues4 proposed a four-step

process—(1) medical indications; (2) patient preferences; (3)quality of life; and (4) contextual features—for analyzingethical implications of clinical cases. Utilizing this framework,we reviewed our clinical question. Regarding medical indica-tions, assuming there is consensus in the desire to release apatient from the ventilator and the commitment and experi-ence to manage symptoms, important clinical assessmentfindings should be considered. These include the presence ofairway edema, other risk factors for stridor or airway ob-struction, or any other finding that might complicate symp-tom management after extubation (e.g., intolerance orresistance to opioids or benzodiazepines). Any of these factorsmight militate toward leaving the ET tube in.

In consideration of patient preferences, any expression by thepatient of an informed desire to remove or retain the ET tubeshould carry great weight in determining how to proceed(although such direct information is rare). Similar informationfrom a health care agent or family member does not figurequite so strongly, since secondhand expressions of a patient’swishes are not always reliable unless documented in an ad-vance directive (which typically does not address the specificdetail of the ET tube itself ). Considering the patient’s quality oflife is important, but risky, since the proper perspective to takein assessing quality of life is the patient’s, and that may behard for even a well-meaning loved one to accurately judge.In many cases the quality of the experience for family or lovedones becomes important. The rare situation of hard-to-man-age respiratory distress after extubation is very distressing tofamily members (and perhaps to the patient). Conversely,removal of the ET tube may allow closer contact betweenpatient and loved ones; some observers perceive an impor-tant restoration of personhood and enhanced dignity afterextubation.

Health care practitioners undertake the care of patientswith the intent and the duty to make all reasonable efforts tohelp them. Many professionals find admitting that we cannotcure a person due to the futility of the situation and re-commending extubation becomes part of the contextual caseanalyses. In this case, wanting to avoid ‘drama’ followingremoval of the ET tube might be reflective of prior distressfulexperience from the practitioner’s personal or professionallife.

We conclude that the best strategy for release from theventilator in the case of terminal extubation is unclear. Giventhe paucity of evidence to guide terminal extubation, clini-cians 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 notexpected to survive, the clinical obligation and priority shouldbe comfort and to prevent suffering—for the patient and theirfamily. Billings5 proposed that the humane response in thissituation is to offer ‘‘preemptive high doses of opioids andsedatives for anesthesia, or at least deep sedation to assurecomfort.’’ We suggest that in addition to premedication andin the absence of clinical indicators to the contrary (i.e., in thecase of burns, airway trauma, or intubation for greater than 14days, all of which increase the risk of stridor) that extubationbe included as part of a humane response. It must be em-phasized that discontinuation of mechanical ventilation withor without removal of the endotracheal tube can and shouldbe done in a way that optimizes symptom management, re-spects patient and family desires, and acknowledges local

834 LETTERS TO THE EDITOR

culture and practice. Research evidence to guide practicewould also be appreciated to help begin to ameliorate some ofthe gray issues associated with this issue.

References

1. Campbell ML: How to withdraw mechanical ventilation:A systematic review of the literature. AACN Adv Crit Care2007;18(4):397–403.

2. Cheng KC, Chen CM, Tan CK, Chen HM, Lu CL, Zhang H:Methylprednisolone reduces the rates of postextubation stri-dor and reintubation associated with attenuated cytokineresponses in critically ill patients. Minerva Anestesiol 2011;77(5):503–509.

3. Gerstel E, Engelberg RA, Koepsell T, Curtis JR: Duration ofwithdrawal of life support in the intensive care unit and as-sociation with family satisfaction. Am J Respir Crit Care Med2007;178(8):798–804.

4. Jonsen AR, Siegler M, Winslade WJ: Clinical Ethics: A PracticalApproach to Ethical Decisions in Clinical Medicine, 4th ed. NewYork: McGraw-Hill, 1998.

5. Billings JA: Human terminal extubation reconsidered: Therole for preemptive analgesis and sedation. Crit Care Med2012;40(2):625–630.

Address correspondence to:Marianne Matzo, PhD, FAAN

Department of NursingUniversity of Oklahoma

1100 N. Stonewall AvenueOklahoma City, OK 73117

E-mail: mmatzo@ouhsc.edu

LETTERS TO THE EDITOR 835