National Ethics Teleconference

**Terminal Extubation: Ethics Perspectives**

**March 30, 2005**

# INTRODUCTION

**Dr. Berkowitz:**

Good day everyone. This is Ken Berkowitz. I am the Chief of the Ethics
Consultation Service at the VHA National Center for Ethics in Health
Care and a physician at the VA NY Harbor Healthcare System. I am very
pleased to welcome you all to today\'s National Ethics Teleconference.
By sponsoring this series of calls, the Center provides an opportunity
for regular education and open discussion of ethical concerns relevant
to VHA. Each call features an educational presentation on an interesting
ethics topic followed by an open, moderated discussion of that topic.
After the discussion, we reserve the last few minutes of each call for
our \'from the field section\'. This will be your opportunity to speak
up and let us know what is on your mind regarding ethics related topics
other than the focus of today\'s call.

# PRESENTATION

**Dr. Berkowitz**:

Today's presentation will focus on the topic Terminal Extubation from an
ethics perspective. This will include a discussion of ethics concerns
and ethical practices related to terminal extubation.

Joining me on today's call is Dr. Alice Beal, a pulmonologist and
intensivist who is currently Director of Palliative Care at the New York
Harbor Healthcare System. Thank you, Dr. Beal, for being on the call
today. I would like to begin by asking Dr. Beal to get us all on the
same page by telling us exactly what is terminal extubation.

**Dr. Beal**:

Terminal extubation is the withdrawal of mechanical ventilation from
patients who are not expected to sustain independent respiration without
it.

**Dr. Berkowitz**:

In other words in certain patients the mechanical ventilation is
prolonging the patient's dying process and removing it at the patient or
surrogate's request is allowing nature to take its course.

**Dr. Beal**:

Yes.

**Dr. Berkowitz**:

How did you get interested in this topic?

**Dr. Beal**:

During my years in the ICU I had several difficult cases where patients
or their surrogates were requesting extubation. Even though it was clear
to team members and myself that extubation was the ethically justifiable
thing to do, we were not sure about the details. This pointed out to me
the lack of defined standards and clear practice guidelines for terminal
extubation.

First I turned to the literature to learn what was known about this
practice. I can provide a brief historical overview.

Not until the 1970s was there a general understanding of the distinction
between withholding and withdrawing of life-sustaining therapy from
euthanasia. Up to that time, patient autonomy and patient determination
in end-of-life decisions was virtually unheard of. Instead, paternalism
was very much prevalent in medical practice. A few landmark decisions
set the stage for change in attitudes and practice.

**Dr. Berkowitz**:

Can you give us a brief overview of a few of these landmark decisions?

**Dr. Beal**:

In 1914 the case of *Schloendorrf v. Society of New York Hospitals* (211
N.Y. 125, 105 N.E. 92 \[1914\]) established the obligation to obtain a
patient's consent prior to performing any procedure. In this case a
woman consented to a pelvic exam under anesthesia. During the course of
her examination, her physician decided that she needed a hysterectomy,
and went ahead and performed the procedure while she was still under
anesthesia. The woman later sued her physician, and won. This was a
landmark United States case recognizing patients' right of control over
their own bodies.

It was not until the 1976 case of Karen Ann Quinlan that this right
clearly extended to the withdrawal of life-sustaining therapy. Karen Ann
Quinlan was a young woman in a persistent vegetative state who was
supported by mechanical ventilation. Her family sued to have the
ventilator removed. The courts ruled that the ventilator could be
removed if there was agreement between the prognosis committee (the
forbearer of ethics committees) and the family and guardian. This case
established the right of a patient to refuse even life-sustaining
treatments and that the right was not lost when the patient lost
capacity. It also established, the importance of ethics committees in
mediating ethics conflicts.

Another case that highlighted decision making for patients without
capacity was *The Superintendent of Belchertown State School v.
Saikewicz* (373 Mass 728, 370 NE 2^nd^ 417 \[1977\]). This was the case
of a 67 year old with an IQ of 10, Joseph Saikewicz, who developed
leukemia after 50 years of hospitalization. Mr. Saikewicz's court
appointed guardian determined that the burdens of chemotherapy
outweighed the potential benefits. The importance of this case was that
it established the best-interests standard of surrogate decision making.
Since Saikewicz never had decision-making capacity, the court appointed
guardian had to rely on this notion to make decisions for him.

**Dr. Berkowitz**:

And *Barber v. Superior Court* demonstrated the right of family as
surrogate decision-makers even if family members are not court-appointed
guardians. This was an important case because two doctors were indicted
for murder after the removal of life-sustaining therapy based on the
families' request. They were acquitted. This case also reinforced legal
reasoning that there is no difference between the withholding or the
withdrawal of life-sustaining therapy.

**Dr. Beal**:

Next there was *Bouvia v. Superior Court* (179 Cal App 3d 1127 \[1986\],
225 Cal Rptr 297 \[1986\]) which established the rights of patients to
refuse therapy in the absence of terminal illness. Bouvia had cerebral
palsy and contractures which prevented her from removing her feeding
tube herself, so she had to prevail upon the hospital staff to remove
the tube for her. Initially, they refused, and so she sued. The court
recognized that Bouvia retained the right to refuse therapy, even
life-sustaining treatment in the absence of a terminal illness.

Finally there was *Cruzan v. Director* (Missouri Department of Health,
497 U S 261; 110 S Ct 2841 \[1990\]) a case in which the family of Nancy
Cruzan, a patient in a persistent vegetative state, asked that she be
removed from a feeding tube. Again, the court recognized the patient's
right to refuse life sustaining therapy but acknowledged that each state
could determine its own evidentiary requirements for upholding such
wishes. In this case, stating that the state of Missouri could require
clear and convincing evidence of the patient's wishes. The case was
returned to Missouri with the recommendation that states enact laws that
govern end-of-life therapy.

**Dr. Berkowitz**:

Thank you, Dr. Beal, for that historical overview of legal decisions
about withdrawing life sustaining therapy.

I think it is also appropriate and important to mention advance
directives in any discussion of end-of-life treatment. We all know of
VHA's deep commitment to honoring patient's preferences and promoting
shared decision making. Advanced directives can be extremely helpful in
guiding care when a patient can no longer express their preferences
themselves. Patients should be encouraged to describe conditions under
which they would or would not want mechanical ventilation in advance
directives and in discussions with their families. Terminal extubation
is another topic that could be included in such discussions or
directives.

So, given that patients -- and at times their authorized surrogates --
can refuse continuation of life-sustaining therapies, including
mechanical ventilation, let's turn our discussion to protocols or
practices that should be followed if terminal extubation is decided
upon. Dr. Beal, is it fair to say that few hospitals and institutions
have protocols or formal guidelines for the withdrawal of
life-sustaining therapy, particularly extubation?

**Dr. Beal**:

I have not seen any data on that but it is my suspicion that very few
hospitals have protocols. But, from my experience, I would recommend
formalized protocols and/or guidelines for terminal extubation.

**Dr. Berkowitz**:

I agree in concept Alice, clinical practices should be based on sound
thinking and as consistent as possible throughout our system. But it is
important for all listeners to realize there is no national VA policy or
practice guideline on terminal extubation, but the Ethics Center is
currently working on updating the Do-not-Resuscitate policy to include
much broader ethical issues in end-of-life care, including a section on
terminal extubation. However, that policy is not yet complete, and so
much of what you are about to say is based on your own experience and
opinion and is open for discussion. With that recognition, can you tell
us Alice about the protocol you use and what elements you feel are
particularly important?

**Dr. Beal**:

Well, first it should be established that the patient meets the criteria
for terminal extubation. Of course, outside of VA criteria are dependent
upon state laws which vary and hospital policies. For example, in New
York, a patient with decision-making capacity can request terminal
extubation but a patient lacking decision-making capacity may only have
terminal extubation if he or she has made a living will that requests
that action, has a durable power of attorney for health care (DPAHC)
requesting extubation or the family presents clear and convincing
evidence that the patient would want extubation. In such cases of
substituted judgment, the patient must lack decision-making capacity and
be unlikely to ever regain decision-making capacity. Two or more
physicians, one of whom is the attending physician, must document this
fact.

[]{.mark}

**Dr. Berkowitz**:

We certainly all know that there are times everyone involved doesn't
agree. What happens then?

**Dr. Beal**:

Well, the health care provider should determine whether all interested
parties have agreed before proceeding. If the patient makes the
decision, legally the family does not have to agree, but since the
family will also be effected by the decision, optimally all differences
should be clarified before extubation.

If any party with standing in the case is uncomfortable with the
decision, terminal extubation might be postponed. This allows for all
parties to have their concerns addressed, that the action is in
patient's best interest and if the member of the health care team does
not wish to be involved based on their own personal matter of
conscience, another staff member can be substituted.

**Dr. Berkowitz**:

Of course, if this action is postponed, it is incumbent upon all
involved to settle things a quickly as possible and to assure that
appropriate palliative care is constantly provided to the patient who
should not have to suffer through the process.

What is the next step after a decision for terminal extubation has been
established?

**Dr. Beal**:

Once the final decision has been made, the family, surrogates and/or
friends are invited to have a rite or ceremony if they choose. A
hospital chaplain is made available if they do not have a minister,
rabbi, priest or imam. The patient may be moved to a private room and we
explain what to expect including that a patient may not die immediately
and that palliation of any symptoms will be provided.

We then review expectations and preferences about foreseeable clinical
events and decide whether to use feeding tubes, blood products,
vasopressors, dialysis or other treatments. In other words -- we view
the decisions in the context of the case and the overall goals of care
and make a comprehensive plan of care.

In my protocol, the attending physician should be present when the
extubation is performed.

The patient's comfort is assured. Family and friends are allowed to be
present if they and the patient wish. If they do not wish to be present
they can be called back in. Anxiolytics and/or narcotics are readily
available at the bedside in case they are necessary.

**Dr. Berkowitz:**

You mentioned that the attending physician in your facility is present.
Does the attending always have to be at the extubation?

**Dr. Beal:**

At my facility the attending physician usually extubates the patient.
The attending physician may be accompanied by a member of the
Respiratory Therapy staff as well as other staff members who are
available with washcloths and suction devices to aid.

I feel that the attending physician's role is very important. Others
have noted the importance of the attending physician's role in
extubation. Truog, Cist, Brackett et al., for example, also recommend
that attending physicians supervise extubations. While the attending may
not actually perform the extubation, the attending's presence sends a
strong message regarding end-of-life care.

It is important to review expectations with all those present. Reassure
the patient's family and friends that the patient will be kept
comfortable and warn them that the patient may not die immediately.

**Dr. Berkowitz**:

Must one have a protocol?

**Dr. Beal**:

I have found that there are benefits of having an established protocol
in place for extubation. Our protocol allows for a gentle and
comfortable death. We do everything possible to assure a clear and
consistent decision making processes as well as the comfort of the
patient, family and friends.

The protocol helps remind us of proper preparation prior to extubation.

**Dr. Berkowitz:**

What about the prevention of suffering? Should medicine to prevent
suffering be given prophylactically?

**Dr. Beal**:

We recommend that an opioid and/or a benzodiazepine be given prior to
extubation or be readily available in the physician's hand for immediate
intravenous use when necessary (i.e. if the patient appears to be in any
distress).

Before we close, I would like to emphasize that the withdrawal of
life-sustaining therapy is not the same as physician assisted suicide or
euthanasia.

Physician assisted suicide is an act in which the physician provides a
patient with the means and the knowledge to take his or her own life. A
prime example is given a prescription for opioids or sleeping pills and
telling the patient what would be a lethal dose.

Euthanasia is an act in which the physician actively and purposefully
does something to cause a patient's death.

**Dr. Berkowitz**:

And intent is certainly important in an ethics analysis of this
question. The intent of terminal extubation as you describe it is to
honor and respect the patient or authorized surrogates' decision that
the mechanical ventilation should be withdrawn. This is either justified
by clear evidence of the patient's preference or evidence that this
action is in the patient's interest. The intent is never to bring about
the patient's demise.

# MODERATED DISCUSSION

**Dr. Berkowitz**:

Thank you Dr. Beal for discussing the topic of Terminal Extubation:
Ethics Perspectives.

Now we'd like to hear if our audience has any responses or questions.

**Shirley Toth, Portland, OR VAMC:**

We are a large tertiary, teaching facility as well. Dr. Beal, what sort
of resistance did you encounter when trying to implement the protocol
you discussed?

**Dr. Beal**:

We actually had very few, because I was the only one doing terminal
extubations in our facility. I developed this protocol only after we
hired a couple of pulmonary intensivists who were much more comfortable
with terminal extubation, and we wanted to make sure that we had a
standard process. So, we were lucky, and it was partly because our very
first cases were very comfortable for our nursing and support staff.

**Dr. Berkowitz**:

And what I think can help at times is an emphasis on an
interdisciplinary approach and collaborative decision making. Before
anything is done, the physician should make sure that everyone
understands what the intentions are, why this is being done, etc., and I
think this really helps to avoid conflicts or tensions around this
procedure.

**Ellen Fox, Director, National Center for Ethics in Health Care:**

We are currently revising the policy on DNR order, and we are actually
changing the focus a little bit to focus on end-of-life care. One of the
things in the current draft of that policy is removing mechanical
ventilation. Currently what it states is that every facility should have
a protocol. If the policy gets approved that way, it would be much
easier to get these protocols approved at the facility level.

**Kola Danisa, Muskogee, OK VAMC**:

One problem that we sometimes encounter in the treatment of the
terminally ill is the imprecision of the prognosis. All of this is
dependent on the ability to have an adequate and correct prognosis.
Since that is not always possible, except in patients who have advanced
cancer or end-stage multi-organ system failure, we have problems in
being sure who really is terminal. If that were possible, we would know
when it was the right time to discuss terminal extubation. One example
of this is a physician who was consulting a family about terminal
extubation, and the family asked him how long it would take for the
patient to expire after the tube was removed. The physician answered
that it would be fairly soon. When the tube was actually removed, the
patient did not expire, to the surprise of everyone present. In this
case, the family was not warned that the patient might continue to
respire spontaneously. Because the patient continued to live, the family
wanted to continue all treatments.

The point is that prognosis is not an exact science, so how can we be
certain when it is the appropriate time to start discussing this with
the family, and what should we tell the family to expect?

**Dr. Berkowitz**:

Obviously, if we are expecting the patient or family to make decisions,
it requires a knowledge of the facts. As you said, predicting prognosis
is not always an exact science, and that can, at times, make it
difficult. What we need to do is make clear to patients and families
that we are removing our opinions, judgments, etc, from the facts. With
the removal of ventilation, it is a little easier because there are
objective parameters that a respiratory therapist or pulmonary or
critical care physician could obtain real measurements that predict
whether a patient will be able to sustain their own ventilation without
that mechanical support. So, that kind of thing is very useful. Perhaps
these protocols should include predictive pulmonary testing to be part
of the decision making.

There is also some data in the literature about this. Mayer and Kossoff
(1999) looked at patients who were terminally extubated, and the mean
rate of survival was 7.5 hours. About a quarter passed away within one
hour, and about 75% died within the first day. So, there is an objective
way when it comes to be terminal extubation where we can predict what
will happen.

**Richard Mularski**:

I think your comments about prognosis are very accurate, and advocate
even more strongly for having a protocol for extubation so that
physicians who do not do this regularly can have reminders for what to
do.

It is also important to prepare the family for what to expect. I think
Dr. Beal did an exceptional job in preparing the families in her
protocol. One thing that we do in our policy is let the families know
that there is the possibility that the patient will be transferred to
beds. Or, for those patients who live longer, I might suggest sending
them home with hospice.

In preparing the family, one of the things that I think is most
important, and part of some protocols, like Gordon Rubenfield's, which
is in the literature. Let me make a quick comment about it---the front
side tells the provider what to do, and the back side serves as a
progress note. The point that I wanted to make that is more germane,
when including the family in the patient's care, is to communicate to
families that the most important thing is to provide comfort and dignity
to the patient. I often put it this way, "If you notice anything, since
you you're your loved one better than we do, that you might interpret as
discomfort, or suffering, or pain, please let us know so that we can use
that in the titration of our opoiods, analgesics, or sedatives. I am
curious whether other people agree with that first of all, and if they
do, how would they include that in their protocols.

**Dr. Beal**:

I'm glad you mentioned that. That is something we routinely do, but it
is not specifically mentioned in our protocol.

**Dr. Fox**:

I believe in the current policy draft that I mentioned earlier lists
several items that should be included, and that is one of them.

**Tuyet Brown, West LA, CA VAMC:**

I agree with the palliative doctor who just spoke about preparing the
family, and to some extent, to get to the personal level. I just lost my
mom this week---I just came back today---and we had to go through this
very painful procedure. I cannot say enough about preparing the family
at all levels to make this very drastic decision. Even with my
experience caring for veterans everyday, I was not prepared, and nothing
pleased me more than a doctor who would take the time to explain to us
every step they were going to take when we decided that my mom could not
survive without mechanical ventilation. She was a very active woman, and
so it just came as a big shock to us, and we had to make this decision.
Without the doctor's support, we would not have been able to make
decisions for her.

**Dr. Berkowitz**:

Thank you for sharing your story, and of course my condolences to you
and your family for your loss. I think all of us here believe that it is
vitally important to include the family as is appropriate to the case in
decision making.

**Sharon Douglas, Jackson, MI VAMC**:

I completely agree with Rich about asking the family what kind of things
they think the patient may need for comfort. I think this not only
ministers to the patient, but to the family as well. I also agree with
Alice that, as an attending physician, it is my job to be there. I use
discernment about how close or far from the bedside I need to stay, but
I also stress how important it is because we are a teaching hospital
here, that the housestaff and trainees be involved in this process and
understand how it goes.

**Sue Childress, Salt Lake City, UT VAMC**:

I would like to comment that this not only happens in the ICU setting,
but in the outpatient setting as well. We had a situation during the
past year where one of our attendings asked us to help withdrawal care
from one of her ALS patients. It turned out to be a very good situation
with a lot of advance care planning, and making sure that we were
following protocols that would make it comfortable for the patient and
the family.

**Dick Millspaugh, San Diego, CA VAMC:**

I wonder if at some point in the future we should look at the reverse
side of this question, which is when the medical staff believes the
patient will not survive without ventilation, there is no clarity about
what the patient would have wanted, and the family is insistent on
continuing to ventilate the patient.

**Dr. Berkowitz:**

I think what you are talking about is withdrawing life-sustaining
therapy based on some idea of medical futility over the objection of the
participants in the case. That is an extremely contentious topic, and
one that maybe will be the topic of another call.

**Jackie Satchell-Jones, West Haven, CT VAMC:**

I work in the primary care setting, and I think preparing the family far
in advance for end-of-life decisions is quite useful, starting from the
outpatient setting. I also concur that protocols would be useful when an
attending comes onto the ward. But, I have a question: would the policy
be set by the facility or VISN?

**Dr. Berkowitz**:

In general our polices are at the national level, and then need to be
interpreted and applied by VISNs and facilities in local policies.

**Dr. Getts, Coatesville, PA VAMC**:

What if there is conflict between family members about extubation? What
legal and ethical issues do we need to consider and plan for in that
situation?

**Dr. Berkowitz**:

It would be similar to any major decision that faces the care team and
the patient's surrogates, assuming that in this case the patient lacks
decision making capacity. VA policy sets a clear hierarchy of surrogates
who has the authority to make decisions on the patients behalf. We can,
and should seek consensus among surrogates, but there is always one
surrogate the team can seek authoritative consent.

# FROM THE FIELD

**Dr. Berkowitz:**

Now I want to turn to our "From the Field" segment, where we take
comments from our listeners on ethics topics [not]{.underline} related
to today's call. Please remember, no specific consultation requests in
this open format, but I invite you now to make your comments on other
ethics-related topics, or to continue our discussion on terminal
extubation.

**Ms. Brown**:

There were eight of us, siblings, and we did have a very difficult time
because we all had different opinions about my mother's care. I was so
befuddled by all these decision I forgot that somebody should have said
to us to get a consult from palliative and ethics doctors, because that
would have helped us very much. All eight of us were going every which
way about what my mom would have wanted, and that should have been
suggested at the outset.

**Dr. Berkowitz**:

And that can be a resource for the doctors as well. These sorts of cases
can be very difficult for doctors as well, and it can be good to spread
some of the responsibility.

**CONCLUSION**

**Dr. Berkowitz:**

Well, as usual, we did not expect to conclude this discussion in the
time allotted, and unfortunately we are out of time for today\'s
discussion. We will post on our Web site a very detailed summary of each
National Ethics Teleconference. So please visit our Web site to review
today\'s discussion. We will be sending a follow up email for this call
that will include the links to the appropriate web addresses for the
call summary, references and the CME credits.

We would like to thank everyone who has worked hard on the development,
planning, and implementation of this call. It is never a trivial task
and I appreciate everyone\'s efforts, especially, Dr. Alice Beal,
Nichelle Cherry, and other members of the Ethics Center and EES staff
who support these calls.

**References**

Truog RD, Cist AF, Brackett SE, et al. Recommendations for end-of-life
care in the intensive care unit: The Ethics Committee of the Society of
Critical Care Medicine. *Crit Care Med* 2001. 29(12): 2332-2348.

**Additional Resources**

Beal A. Terminal extubation. *Pulmonary Perspectives*. 2002;19:1-4

Mayer SA, Kossoff SB. Withdrawal of life support in the neurological
intensive care unit. *Neurology* 1999: 52:1602-1609.

Treece PD, Engelberg RA, Crowley L, Chan JD, Rubenfeld GD, Steinberg KP,
Curtis JR. Evaluation of standardized order form for the withdrawal of
life support in the intensive care unit. *Crit Care Med*.
2004;32(5):1141-1148.