**National Ethics Teleconference**

***Terminal Sedation***

**August 27, 2002**

**INTRODUCTION**

**Dr. Berkowitz:**

Good day everyone. This is Ken Berkowitz. I am an ethicist with the VHA
National Center for Ethic in Health Care and a physician at the VA New
York Harbor Health Care System, and I am pleased to welcome you all to
today\'s Ethics Hotline Call. By sponsoring this series of Ethics
Hotline Calls, the Center provides an opportunity for regular education
and open discussion of important VHA ethics issues. Each call features a
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 and
this will be your opportunity to speak up and let us know what is on
your mind regarding ethics related topics other than the main focus of
today\'s call.

Before we get started, one brief announcement. Just reminding everyone
that at the Center our e-mail address has changed. The "vhaethics"
remains the prefix on the Outlook system, but after the @ symbol, the
new address reads hq.med.va.gov. That is
[vhaethics@hq.med.va.gov]{.underline}. Please make a note of this for
your records.

As we proceed with today\'s discussion on the topic of terminal
sedation, I would like to briefly review the overall ground rules for
the Ethics Hotline Calls. We ask that when you talk you begin by telling
us your name, location and title so that we can continue to get to know
each other better. We ask that you minimize background noise, and if you
have one, please do use the mute button on your phone unless you are
going to speak. And please, and I can\'t stress this enough, do not put
the call on hold, as automated recordings are very disruptive to the
call. Due to the interactive nature of the calls and the fact at times
we deal with sensitive issues, we think it is important to make two
final points. First, it is not the specific role of the National Center
for Ethics in Health Care to report policy violations. However, please
remember that there are many participants on the line, you are speaking
in an open forum and ultimately you are responsible for your own words.
Lastly, please remember that these hotline calls are not an appropriate
place to discuss specific cases or confidential information. If during
the discussions we hear people providing such information, we may
interrupt and ask them to make their comments more general.

**PRESENTATION**

**Dr. Berkowitz:**

Now for today\'s discussion of terminal sedation. Terminal sedation, or
sedation for intractable suffering, is a controversial topic in both
clinical practice and in the medical literature. It\'s an area without
clear practice standards and no VHA policy specifically addresses it.
The goal of today\'s Hotline Call is to begin a non-judgmental, open VHA
dialogue of this sensitive issue. To start the discussion, I would like
to call on Joanne Joyner. Joanne is the Director of Nursing for the
Mental Health Service Line at the Washington DC VA Medical Center and a
medical ethicist who has been detailed to our Center through September.
Joanne, can you please provide us with some background and ethics
commentary on the topic of terminal sedation?

**Ms. Joyner:**

Thank you Ken. As Ken mentioned, terminal sedation continues to be a
controversial practice both ethically and in clinical practice. Indeed
the controversy starts with consideration of a name for the practice.
Terminal sedation has been troublesome to some because of the adjective
\"terminal\" and the thought that that is not explicit. Does it apply to
the patient implying that the patient is in the final stage of illness
or does it apply to the sedation implying that the object of the
practice is sedating the patient to death? Palliative sedation has also
been suggested, and is considered by some to be more linguistically
correct. Sedation of the imminently dying and sedation for intractable
distress and dying are two other names that have been offered.

The controversy continues also with the definition for terminal
sedation. Quill has termed it a clinical practice in which a patient is
sedated to unconsciousness to relieve severe physical suffering and is
then allowed to die of dehydration, starvation or some other intervening
complication as all life sustaining interventions are withheld. Rousseau
describes it as the intention of purposely inducing and maintaining the
coma state but not deliberately causing death in specific clinical
circumstances complicated by refractory symptoms. Morita et al speak of
palliative sedation and the use of sedative medications to relieve
intractable and refractory distress by reduction in the patient\'s
consciousness.

Clinical literature in this country and from around the world reports a
modest use of terminal sedation. Typically this discussion has been led
by palliative care specialists in the interest of relieving refractory
symptoms of patient suffering at the end of life. But it is also
important to note that the practice does not enjoy a consensus among
experts nor does it have official policy endorsement by any group.
Nevertheless, initial clinical guidelines for the use of terminal
sedation have been suggested and published by Quill in the *Annals of
Internal Medicine*, and these suggestions include the necessity for a
terminal prognosis, palliative care setting, the presence of severe
suffering that cannot be relieved by other available means, informed
consent, family involvement, screening for such issues as mental
illness, a second opinion from another health expert or palliative care
expert, and medical staff participation.

In a brief review of the literature, the physical symptoms for which
terminal sedation has most often been used include: pain, delirium,
dyspnea or respiratory distress, protracted vomiting, agitation and
seizures. There are also reports, although less frequent, of the use of
terminal sedation for nonphysical or psychological symptoms. Symptoms
such as psychological and spiritual distress, fear, panic and terror,
anguish and general malaise. And of course, it is the use of terminal
sedation in these nonphysical cases that sparks much of the controversy
about this intervention. Medications that are used include a range of
opioid barbiturates, neuroleptics, anxiolytics, or combinations of those
medications. And the average length of survival with initiation of
terminal sedation is approximately two to three days.

In terms of the ethical implication, health care professionals are
morally obligated to relieve pain and suffering. The standard for health
care practices in every culture is the presence of pain and suffering
and the desire for relief. In particular, we are obligated to act with
beneficence towards the dying, to do good and to promote good by
providing the best palliative care possible. Yet despite the very best
efforts in palliative care, some dying patients will experience
intractable pain and suffering. What does it mean to respond with
beneficence to these patients?

Clinicians and health care ethicists debate the practice the terminal
sedation as an appropriate response to this obligation. While proponents
view terminal sedation as a humane and appropriate therapy, others call
it slow euthanasia. The VA, of course, does not support euthanasia, slow
or otherwise, or physician-assisted suicide. Therefore, euthanasia and
physician-assisted suicide are not acceptable practices, even if thought
to be justified by beneficence or respect for autonomy. As such, it is
important that clinical and ethical distinctions be made when they exist
between these practices and terminal sedation.

The rule of double effect, which distinguishes between permissible and
prohibited actions by relying on the clinician\'s intent, has generally
been used to provide ethical support for terminal sedation. With the
rule of double effect, consequences or effects that would be morally
wrong if caused intentionally are permissible if the effects are not
intended but merely foreseeable.For example, the physician is morally
permitted to provide a medication with the intent to relieve pain and
suffering even when death may occur as a foreseen but unintended risk of
administering that medication. VA supports the rule of double effect in
these instances. In its 1999 publication on physician assisted suicide
in *Challenges and Change*, the report from VHA Bioethics Committee, VA
noted that \"if properly ordered and administered palliative care
unintentionally produces an acceleration of the moment of death, this
double effect is not considered physician assisted suicide or a
voluntary act of euthanasia. Rather it is the price of providing
adequate analgesia and comfort care.

Nevertheless, this justification and the justification of double effect
are not without their detractors. In fact, some view the use of the rule
of double effect to support terminal sedation as either inadequate or
disingenuous and self-deceptive. Disingenuous because it feels clear to
some that is the end goal when we intentionally keep the patient asleep,
withdrawing artificial support from vital functions and allow death to
occur. Further, many hold that we are indeed responsible for what we can
reasonably foresee as well as what we clearly intend. And in terminal
sedation, the patent's death is clearly foreseen. The rule is considered
inadequate because many feel that we can never know a clinician's intent
and intentions involved in end of life care are complex and maybe
ambiguous. Moreover, individual clinicians may not be aware of all of
their intentions. As psychology tells us, people rarely present only one
intent. In that instance then, should death be one of the intentions? An
appeal to the rule of double effect would offer no basis for clear moral
distinction between terminal sedation and euthanasia. How can it be
called self-deceptive? Some consider it to be self deceptive because
they will argue that again death actually is the intent, or at least one
of the intentions because the goal of relieving pain and suffering can
only be obtained by anesthetizing the patent until death, and therefore
the patient\'s death becomes the end point or one of the intended goals.
In this case, is the clinician practicing a form of self-deception or
unrecognized dishonesty? As Lowe noted in *the Archives of Internal
Medicine*, in the end, is there any distinction between giving an
overdose of a drug with the intent of causing death and giving sedation
with the intent of keeping the patient unconscious until death? In the
end, both patients are very dead.

Clearly, when you look at the literature a number of distinctions become
harder to make when other practices are added such as withdrawing life
prolonging therapies and/or progressively increasing the dose of a
sedation. So I guess the central question before us on this call for
discussion today is can we distinguish terminal sedation in any morally
relevant way from physician assisted suicide or even voluntary
euthanasia.

**MODERATED DISCUSSION**

**Dr. Berkowitz:**

Thank you very much Joanne for briefly summarizing some of what is in
the literature, some of the terminology, some of the ethical issues to
consider when we are thinking about the practice of sedating patients
through the end stage of their life as a way to palliate intractable
suffering. That leaves us with a good 20 minutes for open discussion of
this topic, so feel free to introduce yourself and let us know what you
are thinking about the topic.

**Dr. David Wollner, NY Harbor Health Care System:**

I direct palliative care services for the Harbor Health care System in
VISN 3, and I just wanted to share with the people participating that
the American Academy of Hospice and Palliative Medicine has just gone
through a number of iterations of a policy on sedation for terminal
symptoms for intractable symptoms, and will be approved officially by a
Board in two weeks from now. I was wondering if I might read it just so
you can hear some of the language that we use. I think it will answer
some of the questions that Ms. Joyner had mentioned.

**Dr. Berkowitz:**

Sure, as long as people realize that is not an endorsement from our
Center or from the VA, but I would love to hear about it.

**Dr. Wollner:**

Yes, just to make it clear. It is an official statement from the
American Academy of Hospice and Palliative Medicine, and the position
statement is on sedation at the end of life. I will just take out some
of the key aspects. One is that the Academy regards sedation at the end
of life as an ethically sound and effective modality for relieving
symptoms and suffering in some patients reaching the ends of their
lives. The sedation is reserved for people whose symptoms are refractory
and not relieved by standard palliative care measures and it applies to
both pain and non-pain symptomatology. It is believed that sedation at
the end of life is a palliative treatment, and the intention is to
produce sedation or reduce the level of consciousness to avert
suffering, but in no way to be interpreted as hastening the end of life.
In this sense, being that the intention and the outcome is beneficial,
it is the Academy\'s belief that sedation for intractable symptoms at
the end of life is ethically justified. Patients for whom sedation may
be appropriate are most often near death as a result of their underlying
disease processes. And although withdrawal of artificial hydration and
nutrition commonly accompanies sedation, the decision to provide or
withdraw this treatment is separate from the decision of whether or not
to provide sedation. And the final element, and I will summarize this,
is that this is a multidisciplinary team approach and also an approach
taken seriously with the patient and their family. And that in a sense
captures the essence of the policy for the American Academy of Hospice
and Palliative Medicine.

**Dr. Paul Rousseau, VAMC El Paso, TX:**

I just want to make sure that everybody is clear, that that policy has
not been approved by the Board yet in the Academy. So when we say they
Academy, it has not yet been formally approved by the Academy yet. It
probably will be, but it has not yet.

**Dr. Berkowitz:**

Thank you. And if that does get approved, if you could send it to me, we
could distribute it with the follow-up materials for the hotline call.

**Dr. Wollner:**

I will take care of that Ken.

**Dr. Wolpe, VA Gulf Coast Veterans Healthcare System:**

I take care of HIV infected patients and I haven\'t been on the Ethics
Committee for a long time, but my question is we\'re pretty adept at
withdrawing people from life support and I wonder why this is such a
different issue? I\'m just asking because it is serious?

**Dr. James Hallenbeck, Palo Alto VAMC:**

I wanted to comment on that point if I could. That has been an issue of
great debate and actually formed the substance of the Supreme Course
case Vacco vs. Quill in which Tim Quill brought the issue saying if
patients have a right to have sedation withdrawn, and it\'s know they
are going to die from that, wouldn\'t assisted suicide be the same thing
because the outcome measure would be the same? They argued under the
Equal Protection clause of the 14th Amendment. The Supreme Course,
particularly in Rehnquist\'s decision, in a resounding way rejected that
on a couple of grounds. The first was that they viewed treatment
withdrawal as arising out of laws relating to battery saying that there
is a real distinction in the law between the people, sort of an absolute
right, the patient or an identified surrogate to free them unwanted
touching under battery rules. However, they did not find that there was
as Quill was also arguing that the real significant part of the argument
was the outcome, but the intent really mattered. They quoted a 9th
Circuit opinion in which paraphrasing this when Eisenhower sent the
troops to Normandy, he knew that many Americans were going to die, but
his intent was to liberate Europe, not to kill Americans. So the Supreme
Court in my reading of that case and the other one, Washington vs.
Glucksberg, et. al., made a very clear distinction between stopping
treatment as a fundamental right from unwanted touching as compared to a
right to having something done to them. That was all relative to
assisted suicide but certainly terminal or palliative sedation and I
agree that is the preferred term really is something done by a
physician, and there is the big distinction, I think, from the Supreme
Court.

**Janice Bressler, VA San Francisco:**

I\'m a relatively new Staff Attorney in San Francisco VA Medical Center
and a new member of the Bioethics Committee. As a footnote to that, I
think it is accurate, but I would just add to clarify that there
doesn\'t really seem to be clear consensus among the justices of the
Supreme Court. They have quite a bit of disagreement and that in several
concurring opinions I think Justice Souter has commented on the illusory
nature of intent when you are talking about terminal sedation. So I
think whoever just spoke properly characterized the holding, but I think
that there is a great deal of subtly of opinion among the justices and
in the lower courts as well.

I am new to the health care realm and I was just going to report an
anecdote. I was at a presentation by a guy by the name of Steve Helig, I
think, from the San Francisco Medical Society, who spoke about the
importance of pain medication. His basic thesis was suffering patients
are undermedicated for pain. Does that make sense as a premise? And in
the room I was in, this was all news to me, again I am new to the health
care field, but there seemed to be a widespread consensus among the VA
practitioners in the room that that is true.

**Dr. Berkowitz:**

But I think that the topic of palliative sedation only comes up in cases
when it is really impossible to palliate the symptoms. So we are not
talking about cases where that would be possible if more appropriate, if
you will, medical therapy were applied, but we\'re really talking about
cases of intractable suffering.

**Ms. Bressler:**

Okay. Well, I was just going to say that when this issue was discussed,
one of the answers to the question, well why are patients
undermedicated, one of them was the specter of liability for physician
assisted suicide. So in terms of trying to find where we fall on the
continuum, how we draw these lines, it\'s just an anecdote and it\'s not
a study, but that seems relevant. Does that make sense?

**Dr. Berkowitz:**

Yes, but I would like to think and Jim and David and others out there
from the palliative care world, I\'d like to think we are making really
strong progress in terms of raising people\'s consciousness and really
palliating pain and treating symptoms better and making sure that that
is really a priority. But this practice for today\'s call is really in
patients with intractable suffering.

Dr. Wollner: Just to mention about the vagaries of the definition, I
think the initial paper or publication that sort of got people thinking
was from Milan, Italy---the National Cancer Institute there published
the use of terminal sedation in about 50% of their home care patients
and it really opened up everyone\'s eyes. And actually in rereviewing
those cases, which were about 100 or so, it was clear that most of the
people were describing either symptoms like pain or delirium that
required some sedation versus having had adequate trials of analgesics
or neuroleptics before sedation was used. And actually, if you go around
the country, I think you will get a whole array of responses but in our
experience in New York my own estimate would be that the request or the
need for sedation for intractable symptoms, at least in an inpatient
palliative care unit, may come up two or three times a year if you are
looking a 14 bed unit. So it comes up really relatively rarely when all
the other medical, spiritual and psychological care have been exhausted.

Dr. Wolpe: I agree with that because pain isn\'t just pain. It is a
multifactorial, psychological myriad of other things as well.

Dr. Bill Nelson, National Center for Ethics in Health Care: Everyone
speaking so far has been very supportive of the approach of terminal
sedation, and I personally tend to agree with that. But I know from
conversations I have had with you Paul and some of the other palliative
care experts, it seems like there is a great deal of controversy about
this, but I guess I am somewhat piggybacking it on to one of the earlier
questions. Where do you see the controversy? Because it seems like we
are all saying in giving justification for its appropriateness, both
ethically and clinically, where are you seeing really the controversy?

Dr. Berkowitz: Does anyone find that there is controversy around this
practice in their area?

Dr. Hallenbeck: I would identify a couple of issues of controversy. One
that has clearly been raised is that there are some folds, Tim Quill and
Orentlicher, are a couple who really have dwelled on the outcome, argued
about the importance of intent. I think that one has been addressed.
Another controversy, I think a lot of this gets down to a matter of
degree. For example, do we treat psychic distress as equivalent to
physical pain? Is that a meaningful distinction? There may be different
practices to that. Certainly in one paper that I wrote, I worried about
saying that all suffering is somehow mathematically equivalent, that I
did see personally a greater moral responsibility to physical pain
knowing that we can\'t make an absolute distinction between physical and
psychic suffering. And I am not sure, there is some disagreement about
that I would say. I have trouble, for example, if a patient came in and
said I have no physical pain and even if near death, I don\'t want to be
here because I find this an indignity, I personally find it difficult
and would not give such a patient sedation. But I think that is an issue
of controversy.

Dr. Rousseau: I agree with Jim. I think the existential suffering is
primarily where a lot of the controversy comes up. I think with
intractable, physical suffering, most people have no qualms about
alleviating the suffering that the person is having, but I think with
existential suffering is where the problem comes in. And I am one that
believes that existential suffering is just as significant as physical
suffering. The problem we have is that we have no definitive way to
quantify a person\'s existential suffering. Sure we go through the
Ethics Committee, we go through psychiatric evaluation, but still many
people are uncomfortable with the idea of sedating someone with
existential suffering. Thusly, we came up with the idea of respite
sedation and also something that has not been touched upon is that there
are several layers of sedation now\--light sedation, moderate sedation,
heavy sedation. Marita has brought that up and a few other people in
their papers, and lightly sedating someone, is that palliative sedation
or terminal sedation or is it not? But I agree with Jim that the real
controversy arises with the existential or psychological suffering and
not the physical suffering.

Dr. Berkowitz: To create a balanced presentation and to present some of
the other side, I should note that there are other views in the
literature. Dr. Gunderman in the March-April Hastings Report really
tried to look at the nature of suffering, and actually tried to
determine whether suffering is, believe it or not, a bad thing. In the
most recent issue of the Hastings Report in the Letters to the Editor,
he closes by saying that \'the liability to suffering is an ineluctable
feature of the human condition and compassion not anesthesia is often
the truest response\'. So even though it seems like all of the people
who have spoken so far, Bill, David and the callers, maybe the Academy
of Hospice and Palliative Care Medicine might say that it\'s ethically
sound, there are people who argue from the other side that there are
problems with this.

Ms. Bressler: This is not in response to that very grand question, but
to follow-up on Bill Nelson\'s question, can I ask again do the
practitioners out there in the VA medical centers, can you speak to or
give a sense of the frequency with which a patient is suffering in the
terminal stages of life because of lack of guidelines or physician\'s
uncertainty about guidelines or standards for making these decision?

Gary Rolph, Manchester, NH: I think that is part of the problem
especially nonpalliative care physicians on off duty hours being asked
to increase pain medication and wondering if what they are doing is
indeed terminal sedation. So often they will be much more conservative
and that will mean that the patient then continues in agony. I wouldn\'t
say suffering, I would say agony for the remainder of that period of
time or until someone else with some palliative care experience can come
in. I think that is the difficulty. It would be good to have something
better, less fuzzy definitions of what is pain control. Also what
happens sometimes because the pain control will reduce the breathing and
can indeed accelerate the dying process and how we can put that together
and not have physicians feel that what they are doing is really active
euthanasia.

Dr. Hallenbeck: I would like to make two quick comments. First, I think
you raised an important point. In my opinion the major problem is not
the relatively uncommon cases some of with intractable suffering,
refractory is the best palliative care, it is just a general lack of
clinical competence. That would be 98% of the problem in my opinion
relative to these relatively uncommon cases. I would challenge the last
statement though, which is often underlying discussions of pain
management that they do hasten death. That was part of a group that was
trying to do a multicenter study to see if opioids in particular did
hasten death and there is virtually no literature on that whatsoever. It
is often assumed that that would be the case, but the evidence base for
that I would say is extremely skimpy.

Dr. Berkowitz: In fact, if I read the literature right, the patients who
receive fewer opioids and pain medicines actually had a shorter time of
life.

Dr. Hallenbeck: This is methodologically, as you can imagine, incredibly
difficult to study but the counterargument has indeed been a way of
thinking about it is that pain takes life energy. And so if you have an
extremely frail, dying person and if they are in physical agony, they
may die sooner from that whereas relieving pain or other distracting
symptoms may actually in a way we don\'t talk about well in Western
Medicine, allow life energy to return to living. So there has indeed
been a counterargument what is really more often an assumption that
opioids significantly if used correctly. Obviously if you give massive,
inept doses of opioids, you can kill anybody, but that is not what we
are really talking about.

Stephen Wear, Buffalo VA: I\'d like to second the comment about
depleting life force and all the rest of that. For the nonclinicians,
it\'s worth remembering that morphine, for example, is not just an
analgesic, it is also something to help patients breathe easier and
rest, which I\'ve seen in the literature which seems to back that up.
The punch line would be there are a number of cases where we are
worrying that we are hastening things where it is a matter of fact we
are not at all. I\'d like to respond to the question about what is the
actual controversy with a different suggestion. There are certainly some
who will always have a problem with it, but I tend to think of this more
in the sense of discomfort. I think the discomfort that people have is
on two points. One is legal. I think it is very hard to legally draw the
balance between having people properly medicated, not undermedicated,
but also not given horse doses, and I think the Congress has recently
fumbled that and clinicians are appropriately uncomfortable with it. But
again that is not an ethical controversy. The other one I point out is
if we all went back and read what has already been said so far and I
think what we would see is if you remove the double effect intention
argument for the distinction, that it is hard to avoid some of Quill\'s
arguments. I think certainly with physical pain we\'d like to find a way
to somewhere at rest but it\'s not clear how solid the ground is. Again,
I am not sure that is an ethical controversy. I think it is an ethical
discomfort. That helps me think about it a little bit.

Dr. Ginger Wlody, Phoenix: I wanted to address the issue raised by the
staff attorney in San Francisco. There are two different things that we
are talking about. She expressed concern about there being guidelines
for pain management and that sort of thing. There are no guidelines
generally in the VA for terminal sedation but there are guidelines for
pain management that the Joint Commission for Healthcare Organizations
has. And every VA medical center has to have a policy regarding
guidelines for management of pain for our patients. One of the
physicians who spoke earlier said that sometimes physician ignorance or
whatever or their concern about the double effect. So I just wanted to
make sure she realized that there are standards in place in every
medical center for addressing pain management of our patients.

Dr. Nelson: Paul, let me push you a little bit because you and your
colleagues very appropriately talked about the controversial aspects of
assessing existential pain or discomfort. You said you used mental
health experts to help in that assessment. But others have used and
expanded in that definition of existential pain to include psychic as
well as spiritual pain. Do you have any type of methodologies for
assessing spiritual pain?

Dr. Rousseau: Define what you mean by methodology?

Dr. Nelson: You said that you relied on mental health experts to help
you in your assessments and I was wondering are there any ways to help
people better understand a patient\'s spiritual pain?

Dr. Rousseau: Well, within the VA system what we do here is we obviously
have the Chaplain Service and we have Psychology and Social Work, and I
don\'t know if other Center\'s are blessed with further avenues, but
that is what we utilize here. And obviously the comment made earlier
where suffering may be good, I just always make one comment. The people
that say that will be glad to see Jim Hallenbeck, me or somebody at
their bedside when the end comes, I can assure you.

Dr. Nelson: I agree with you Paul, and I felt it just needed to be said
to provide balance to this call.

Dr. Rousseau: I agree with you 100 percent. It is so easy for us until,
as I always tell the housestaff, until you walk in their shoes, never
say you understand.

Dr. Berkowitz: So in the final minutes we have to discuss this, I think
that it is valid to raise the following question: do we think this issue
should be addressed somehow at the national level? Should there be
guidelines? Is that possible? And how do people think that we might
proceed.

Dr. Wollner: I think it is a great idea to proceed in a very deliberate
way through this. I don\'t think there is an urgency, but I think in
parallel with VA hospice and palliative care initiative that is
unfolding in the country, it would be great to tag along, another words,
the time is right to explore it further and eventually to develop either
policy or position statement.

Dr. Berkowitz: Does anyone disagree with that?

Mr. Wear: I would like to second that, a little bit hesitantly, but I
will second it in the sense I think if it was a clinical document it
might even get into \"how to\'s\" but do that in terms of striking that
balance between not overmedicating but getting away from
undermedicating. It might make some of our more hesitant followings less
so. That could help.

Dr. Berkowitz: Right, and I think there will be a tremendous number of
subtleties that would need to be address. How close to death the
patients need to be to be eligible for this, must to be connected to
withdraw the withholding of nutrition and hydration, what level of
sedation are we referring to? Unfortunately we don\'t have time to go
into any of Dr. Rousseau\'s very interesting topic of the use of
intermittent sedation for patients, but again, I think these are all
great topics to consider and points that would have to be considered if
any group were to take this up.

Dr. Hallenbeck: I would weigh in with mixed feelings about policy
levels. My worry is that whatever the attention of the National Center
for Ethics in Health Care often within the VA, I really want to have
true ethical controversies respected. Our society hasn\'t figured out
many of these more subtle points and if things get codified in policies
and guidelines, somehow that takes on the illusion of truth, and that
worries me. On the other hand I agree that I would like some way that we
can at least acknowledge that this is a practice that is happening. That
seems appropriate, but I would go in with a certain amount of fear and
trembling.

Dr. Berkowitz: I think that really sort of sums up our feelings and our
hesitation in even having this call because it is an area that makes
some people very uncomfortable to even discuss. And I would like to
thank everyone for participating.

V. From the Field

Dr. Berkowitz: As usual, we didn\'t expect to conclude this discussion
in the time allotted. Unfortunately we are out of time for this portion
of the call. But we make provisions to continue this discussion in an
electronic form on our web board which can be accessed at the National
Center for Ethics in Health Care Web site and we also have on our Web
site a very detailed summary of this and every ethics hotline call. So
please visit our Web site to review or continue today\'s discussion. You
will all be getting a follow-up e-mail for this call which will include
links to the Web site, the call summary, the web board discussion, and
references to the articles that were mentioned in the call. If the
vagaries of cyberspace permit, the follow-up for the call should be out
by next week. But we do like to save the last few minutes of these
hotline calls for our From the Field Section. It\'s where we try to
facilitate networking among ethics related VA staff and facilitate
communication between the field and the Center. It is your opportunity
to speak up to let us know what is on your mind, ask quick questions,
make suggestions, throw out ideas for future hotlines or continue
today\'s discussion on palliative sedation. So From the Field, what is
on people\'s mind?

Dr. Linda Williams, Little Rock: Just one final comment on what was an
excellent discussion. If you do those guidelines, I would ask that you
please be very specific about what the terminal situations in which they
are used... And that is what I wanted to say, please be very specific in
your guidelines about the terminal definition.

Dr. Berkowitz: Right. And it\'s not in any way to imply that guidelines
will be, or are forthcoming.

John Antoine, Dallas VA Medical Center: Is this issue now being resolved
at each individual medical center by the Ethics Committee and other
involved people?

Dr. Berkowitz: To be honest with you, I am not sure how it is being
resolved at each individual facility. I would speculate that there are
times when an Ethics Committee is involved either on a consultative
basis or an organizational level. But I also might speculate that it is
being handled by clinicians individually. Does anyone else feel
differently about that?

Mr. Wear: I think that is accurate at Buffalo VA. We got into actually
generating a side policy on this sort of thing but certainly I\'ve heard
around that people are following their own instincts in certain ways.
But I think the idea of having policy, although I\'m hesitant, is the
one thing that comes up for me when I hear people that are hesitant and
don\'t feel they\'ve got the backing with some of this and they end up
doing less.

Beth McIver, Cleveland: I think that I am nervous about a policy, only
because so often people just use it to justify what they are doing
without stopping and trying all the measures. I\'ve been working in
hospice for 22 years now, and I\'ve rarely seen the need for terminal
sedation, and I think that the fear I have that people are going to
start using it for what we should be referring to as good palliative
care. You rarely need it because if you have people who really know what
they are doing, you can control those symptoms without getting to that
point. It\'s for only those patients where that everything has been done
and the symptoms are totally refractory and the person is in agony and
you have tried everything and the experts have tried everything, not
your general residents on the floor or whatever the case happens to be,
but the people who really know what they are doing. And if they don\'t
have someone at that organization or at that VA that they are consulting
with hospice experts in other parts of the country if they need to and
get those symptoms under control. I get over 200 referrals a year, and
I\'ve not had to see it used at all in my 10 years at this VA. Only once
did I see it used at the Cleveland Clinic. So I am fearful that it will
become something that people just jump into.

Dr. Berkowitz: I agree with you that the slippery slope is one potential
danger that has sort of been raised. Others include putting a burden on
the patient or feeling they have a duty to accept this or the feeling
that if it is raised by that physician that it must be the right thing
to do. This all takes away some of the voluntariness of it. So there are
a lot of things to discuss. Again, we can continue this discussion on
the web board if you want, but I do think we need to wrap up the call
for today.

I\'d like to thank everyone who worked on the conception, planning and
implementation of this call. It\'s really not a trivial task and I
appreciate everyone\'s effort, especially Joanne, for her participation
and the other participants in the conversation.

The next call will be on Wednesday, September 25, from 1:00 to 1:50
Eastern Time. Please look tot he Web site and to Outlook e-mail for
details and announcements. Again, you will be getting a follow-up e-mail
for this call with the e-mail addresses, links and references to access
the Center Web site, a summary of the call, a WebBoard discussion, and
again the references. Remember the summary and discussion of prior calls
are also available and ongoing. Please let us know if you or someone you
know should be receiving the announcements for the call and didn\'t or
if you have suggestions for topics for future calls. Again, our e-mail
address is [vhaethics@hq.med.va.gov]{.underline} or vhaethics on the
Outlook system. Thank you all and have a great day.