Terminal Extubation of the Alert Patient

Terminal extubation of an alert patient (TEAP) poses ethical, legal, clinical, and emotional challenges that deserve special consideration. The patients—for example, those with amyotrophic lateral sclerosis, far-advanced respiratory failure, or a high cervical cord lesion—are conscious, clearly capable of suffering, and sometimes able to survive for prolonged periods if they receive ongoing life supports. They also require sedation protocols different than employed for deeply obtunded persons. Neither published discussions of extubation practices nor of palliative sedation regularly hone in on these special features. The acronym, TEAP, represents an attempt to distinguish this procedure and the unique demands it puts on the patient, family, and clinician, and to encourage further discussion and research on the topic.

First, a brief definition. I use the term “terminal extubation” to mean the removal of respiratory support, typically either a mechanical respirator or endotracheal tube and eventually both, from a patient who is certain to expire very soon afterward. Terminal removal of a noninvasive positive pressure ventilatory device would not involve an eventual extubation but requires the same considerations. Some clinicians will object that we cannot be certain about the inevitablity of death after extubation, but I would argue that we are often certain and then (and only then) should invoke a TEAP protocol.

By “alert patient,” I am referring to patients who are aware of their surroundings or bodily sensations, as opposed to patients in deep coma, vegetative state, or brain death. However, given the reports of pain and panic in a small number of patients undergoing general anesthesia, ¹ and the recent evidence of brain activity in patients in the persistent vegetative state, ² a case can be made that all non-brain-dead patients dying a respiratory death may experience dyspnea and anxiety, even though they may be unable to communicate it, and thus require a TEAP protocol.

Ethical concerns are common with TEAP. When a fully conscious patient chooses to remove ventilatory support, questions arise about whether the patient is committing suicide. If it were suicide, then performing TEAP could be considered assisted suicide or voluntary euthanasia, depending on how the procedure was conducted. However, the courts have supported patients who wish to remove their ventilatory support, at least when a sustained request for extubation is presented by persons with full decisional capacity, regardless of whether they are otherwise certain to die soon of their underlying disease. Bioethical opinion in the United States typically upholds the patient's right to such a procedure. Of course, these patients require very careful evaluation, including an expert second opinion, to rule out potentially reversible reasons for wanting to hasten death, such as ongoing pain, depression, delirium, feelings of abandonment, etc. ³ Regardless, some family members or clinicians may view such practices as immoral, unethical, or illegal. ⁴

A second issue arises in the use of analgesia and sedation to alleviate the distress of a respiratory death. When do the drugs cause death rather than ease it? ⁴ Similar issues arise in palliative care practice when we prescribe high doses of analgesics and sedatives, especially with palliative sedation to unconsciousness. For most clinicians, these concerns are addressed by a version of the Rule of Double Effect: when the patient values the relief of suffering proportionately greater than the goal of sustaining life, and when the intention of analgesics and sedatives is to prevent or relieve distress, not to cause death, then the foreseeable possibility of hastening death with these drugs is ethically acceptable.

In choosing the right doses of analgesics and sedatives, as far as we know, dyspnea and respiratory panic cannot be prevented without causing respiratory depression. Rationally, it would seem best to err on the side of giving more medication—to produce deep sedation or anesthesia—rather than administering the smallest dose that appears to obviate distress. After all, what would you want for yourself in this situation? Nonetheless, concerns about causing death with analgesics and sedatives or about accusations of assisted suicide and euthanasia, may lead clinicians to minimize dosages or tolerate a degree of patient distress.

Prior to extubation, clinicians often make sure the patient is comfortable, and then titrate medications to treat any further discomfort that is evident after an “immediate extubation” or during a “terminal wean.” Other clinicians have argued that a terminal extubation should be preceded by a sufficient bolus of analgesics and/or sedatives to prevent suffering and to guarantee a peaceful dying process (possibly followed by extra doses if discomfort is noted).^5–7 Similarly, Kompanje and colleagues have argued for prophylactic management of “death rattle” and stridor. ⁸ Waiting for the appearance of symptoms risks, and may even assure, that the patient will be uncomfortable, and seems analogous to delaying full anesthesia for a surgical patient until distress is evident. And can we always detect dyspnea and anxiety in these patients (e.g., someone with diffuse neuromuscular impairment)? Thus, preemptive deep sedation or anesthesia prior to TEAP is a humane approach that is followed routinely in some centers, and is worth considering as a policy.

Even if we rationally master the ethical, legal, and clinical issues around TEAP, the experience of providing TEAP can be quite distressing. Thus, Edwards and Tolle entitled a paper, “Disconnecting a ventilator at the request of a patient who knows he will then die: The doctor's anguish.” ⁹ The person undergoing TEAP may be young, fully alert, and capable of sustaining a much longer life. The patient, family, and clinician set the time of TEAP, and considerable pre-procedural anxiety seems inevitable for all involved. Death of a conscious person immediately after a procedure may feel like euthanasia, regardless of whether we muster ethical justifications and legal precedents; clinicians seem to tolerate their agency in slow deaths much better than with deaths that occur right after a clinical action. ¹⁰

The history of medicine reveals many procedures that may advance the timing of a death and are now routine, yet were considered illegal or immoral fairly recently: ventilator withdrawal, ¹¹ do not resusitate (DNR) orders, withholding or withdrawing fluids and nutrition, palliative sedation to unconsciousness, turning off a pacemaker or an automated implantable cardioverter-defibrillator, even just high doses of opioids. TEAP with preemptive deep sedation may be perceived this way by patients, families, and colleagues. Palliative care clinicians need to be aware of such views before undertaking the procedure; ethical, legal, and other forms of professional recriminations are a very serious risk.

Palliative care has often represented the cutting edge for promoting progressive and compassionate clinical practices for terminally ill patients and their families. Who will speak up for humane TEAP?