Foredrag på: International consensus conference
in intensive care medicine: Weaning from
mechanical ventilation: Budpest April 28-29,2005.
Terminal care for the ventilator dependent patient
Prof. J. Randall Curtis, MD, MIPH
Associate Professor of Medicine
University of Washington
Harborview Medical Center, Box 359762
325 Ninth Avenue
98104 Seattle, WA
UNITED STATES OF AMERICA
Phone: + 1 (206) 731-3356
Fax: + 1 (206) 731-8584
E-mail: jrc@u.washington.edu
Approximately 20% of all deaths in the U.S. occur in the ICU (1) . This proportion varies dramatically in
different parts of the world. The geographic variation in end-of-life care in the ICU reflects both cultural and religious
variation in the approach of clinicians as well as variation in the availability of ICU beds (2,3). A study in Europe
showed dramatic variation in the approach to end-of-life care across Europe with particular differences noted between
north and south (2). Undoubtedly, some of the geographic variation is appropriate and based on the cultural
differences, while some of the variation represents an opportunity to improve quality of care. Despite this important
geographical variation, studies throughout the developed world have shown that the majority of deaths in the ICU
involve withholding or withdrawing life-sustaining therapies including mechanical ventilation (4,7). Thus, the ICU
represents a setting where decisions about terminal discontinuation of mechanical ventilation are common. Terminal
discontinuation of mechanical ventilation involves: a) determination of the goals of care, b) communication among
the clinicians and between clinicians and patients and family members, and c) the process of discontinuing the
ventilator. This summary will review each of these areas.
Decision-making about the goals of care
The ethical principles of autonomy, beneficence, futility, surrogate decision-making, and the justification for use of
medication to relieve pain even when it may unintentionally hasten death (called the principle of "double effect")
are generally well accepted in the critical care community. Despite the general agreement on these principles, there
is evidence that critical care clinicians vary greatly in their approaches to decisions about the goals of care in the
setting of critical illness and mechanical ventilation. For example, Cook and colleagues found that critical care
physicians and nurses showed tremendous variability in the goals of care they thought appropriate for a series of
patients with critical illness and respiratory failure (8). Similarly, Curtis and colleagues showed dramatic
geographic variation in decisions to withhold mechanical ventilation and intensive care for patients dying of
HIV-related Pneumocystis carinii pneumonia that was not accounted for by severity of the pneumonia or the
underlying HIV disease (3). Prendergast and colleagues surveyed critical care physicians showing dramatic
variation across the U.S. in the proportion of patients dying in an ICU who have life-sustaining treatments withheld
or withdrawn (9). Similar variability has been demonstrated in Europe
A recent international observational study by Cook and colleagues demonstrated that two of the most powerful
predictors of the decision to withdraw mechanical ventilation was the attending physicians' prediction of the patients'
probability of survival and that physicians' assessment of the patients' preferences regarding end-of-life care (11). This
study suggests that physicians bear profound responsibility to be certain that their survival predictions are sound and
their impressions of the patients' preferences for end-of-life care are well founded.
Decision-making in the ICU involves complex relations between physicians, nurses, and other members of the
ICU team, as well as interactions between these clinicians and the patient and family. Since less than 5% of ICU
patients are able to communicate with clinicians when these decisions are made, clinicians and/or families make
most of these decisions (4). There is tremendous geographic variation in the role of these individuals in making
decisions. There are some locations where the family have no legal standing in decision-making and the goal of
clinician-family communication is one of providing education and support. There are other places where
clinicians ask family member to make the decisions about withdrawing mechanical ventilation in a way that is
inappropriate. There is growing consensus that some form of shared-decision-making is the most appropriate
model for making decisions about withholding and withdrawing mechanical ventilation (12). The degree of
sharing of responsibility may vary based on cultural norms and on family preference for role in decision-making
(13). A recent study from France showed that half of family members of critically ill patients want to be
involved in decision-making, but of those family members that want to be involved, only a minority reported
they were involved (14). Therefore, an important role for the critical care clinician is to assess the role that
family want to play in decision-making.
There have been several recent studies that have suggested that routine palliative care or ethics consultation for
some patients in the ICU can improve the quality of decision-making about withdrawing mechanical ventilation.
Schneiderman and colleagues performed a randomized trial of a routine ethics consultation for patients "in
whom value-related treatment conflicts arose" (15). They found that routine ethics consultation reduced the
number of days that patients who died spent in the ICU and hospital, suggesting that consultation reduced the
prolongation of dying. Similarly, in a before-after study design, Campbell and Guzman showed that routine
palliative care consultation reduced the number of ICU days for patients with anoxic encephalopathy after
cardiac arrest and for patients with multiple organ failure (16). Other studies have also suggested the benefit of
ethics or palliative care consultation in the ICU setting (17,18) The weight of evidence suggests that palliative
care or ethics specialists may have a role in the ICU to improve quality of care received by
mechanically-ventilated patients and their families.
Communication within the ICU team and with Families
ICU team members may differ in the timing with which they believe that life-sustaining therapy should be
withdrawn (25). Oftentimes, nurses come to this decision earlier than physicians and this can be a source of
frustration for critical care nurses (26,27) and a source of inter-disciplinary conflict. The best way to avoid and
address such conflict is to ensure that lines of communication are open between team members.
Several studies have shown that family members with loved ones in the ICU rate communication with the ICU
clinicians as one of the most important skills for these clinicians (19). Studies suggest that ICU clinicians
frequently do not meet families' needs for communication (14,20,21). A study from France found that 50% of
family members of critically ill patients have important misunderstandings of diagnosis, prognosis, or treatment
after a meeting with physicians (14). Fortunately, interventions to improve communication have suggested
improvement in the processes of ICU care with decreased length of stay for those patients that ultimately die
(15,16,22)
There has been little research on the quality of clinician-family communication in the ICU. An observational
study examined audiotapes of ICU family conferences to develop a framework for understanding the content of
these discussions and the techniques used by clinicians to provide support to family members (23). This study
found that ICU clinicians spent 70% of the time talking during family conferences and only 30% of the time
listening to family. The higher the proportion of time that clinicians spent listening, the more satisfied family
members were with the family conference (24). This study suggests that critical care clinicians can improve
communication with family if they spent more time listening.
The Process of Terminal Discontinuation of Mechanical Ventilation
The vast majority of patients who die in the ICU do so after a decision to limit life sustaining-treatments (4,7)
Therefore, improving the process by which life support is withdrawn is an important aspect of improving the
quality of care for patients dying in the ICU. Unfortunately, there are few data to guide clinicians in the practical
aspects of withdrawing mechanical ventilation. Practice should be guided by a thorough understanding of the
goal of withdrawing life support: to remove treatments that are no longer desired or indicated and that do not
provide comfort to the patient. Any treatment may be withheld or withdrawn; most ethicists concur that there is
no ethical difference between withholding or withdrawing life support (28).
The withdrawal of mechanical ventilation is a clinical procedure and deserves the same preparation and
expectation of quality as other procedures. Several topics should be discussed with families including
explanations of how interventions will be withdrawn, how the patient's comfort will be insured, the patient's
expected length of survival, and any strong family or patient preferences about other aspects of end-of-life care.
Time should be spent discussing, understanding, and accommodating cultural and religious perspectives. An
explicit plan for performing the procedure and handling complications should be formulated: the patient should
be in the appropriate setting with irrelevant monitoring removed; the process should be carefully documented
including the reasons for increasing sedation or analgesia; and outcomes should be evaluated to improve the
quality of this care.
Once a decision is made to withdraw life-sustaining treatments, the time-course over which a life sustaining
treatment is withdrawn should be determined by the potential for discomfort as treatment is stopped. The only
rationale for tapering life-sustaining treatment in this setting is to allow time to meet the patient's needs for
symptom control. Mechanical ventilation is one of the only life-support treatments whose abrupt termination can
lead to discomfort. In a common approach of terminating mechanical ventilation, often called "rapid terminal
weaning" or "terminal ventilator discontinuation", the Fi02 is reduced to room air and the positive end expiratory
pressure to zero as a first step with anticipatory dosing of narcotics as needed for patient comfort. The patient is
then assessed for comfort. In the second step, ventilatory support is gradually reduced from baseline to zero over
5-10 minutes with dosing of narcotics or benzodiazepines as needed for manifestations of dyspnea or other
symptoms. At that point the patient is placed on a T-piece with humidified air or extubated. Since the term
"weaning" suggests the goal is independent spontaneous ventilation, the phrase "terminal ventilator
discontinuation" is more appropriate. Limited data exist as to whether patients should be extubated. Small
observational studies found no difference in patient comfort (30,31), but these studies lack power to detect
clinically important differences. Terminal ventilator discontinuation may unnecessarily prolong dying if the steps
are prolonged. Typically the transition from full ventilatory support to T-piece or extubation should take less
than 10-20 minutes.
As with many aspects of critical care, a protocol for withdrawing life support, if carefully developed and
implemented, may improve the quality of care. Treece and colleagues described the development of a
"withdrawal of life support order form" for use in the ICU and evaluated in a before-after study (32). The order
form contains four sections. The first section highlights preparations prior to withdrawal of life support including
discontinuing routine x-rays and laboratory tests and stopping all prior medication orders such as prophylaxis for
deep venous thrombosis. The second section provides an analgesia and sedation protocol that provides for
continuous infusions if medications are needed and gives nurses wide latitude for increasing doses quickly if
needed. However, the order form also requires documentation of the reasons for dose escalation. The third
section contains a ventilator withdrawal protocol as outlined above. The fourth section outlines the principles
surrounding withdrawal of life support. Physicians and nurses found the order form help full (32).
Implementation of this order form was associated with an increase in the use of benzodiazepines and opiates in
the hour prior to and the hour after ventilator withdrawal, but was not associated with a decrease in the time from
ventilator withdrawal to death. These findings suggest that such an order form can result in an increase of drug
use targeting patient comfort without hastening death.
Institutions with variability in the withdrawal of life support process or institutions where clinicians express
frustration with this process should consider adapting and implementing such a protocol or order form.
In considering withholding and withdrawing life-sustaining treatment, it is important to incorporate culturally
sensitive care by understanding that some cultures do not accept western ethical principles such as the
equivalence of withholding and withdrawing life support or the definition of brain death. Therefore, it is
important to anticipate these scenarios and be prepared to apply principles of culturally effective end-of-life care
to these situations (33).
Conclusions
Perhaps the single most important recommendation for improving terminal discontinuation of mechanical
ventilation in the ICU is for intensive care clinicians to value palliative and end-of-life care and make these
aspects of care an important part of their rounds and documentation. Multi-disciplinary rounds that cover both
the curative and palliative aspects of caring for mechanically ventilated patients should occur routinely in the
ICU. It is particularly important that nurses and other ICU clinicians are part of a collaborative interdisciplinary
team that takes responsibility for end-of-life decision-making and care. Techniques to clearly and unequivocally
communicate decisions about limits of life-sustaining treatment to all hospital staff should be implemented.
Protocols for terminal discontinuation of mechanical ventilation and forms for documenting this process may
improve the quality of care in this setting.
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