**National Ethics Teleconference**

***Ethical Priority of Decedent\'s vs. Family\'s Wishes in Organ
Donation***

# July 24, 2002

**INTRODUCTION**

**Dr. Berkowitz:**

Good day everyone. This is Ken Berkowitz. I am a medical ethicist with
the VHA National Center for Ethics 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 National Center for Ethics in Health Care 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 today, I have a brief, but very important
announcement. The e-mail address for the National Center for Ethics in
Health Care is changing. The vhaethics remains the prefix, but after the
@ symbol the new address reads hq.med.va.gov. That's
<vhaethics@hq.med.va.gov>. Please make a note of this for your records!
E-mail can also be sent via Outlook to "VHA ethics."

As we proceed with today\'s discussion on the ethical priority of
decedent\'s versus family\'s wishes in organ donation, 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 the ethical priority of decedent\'s
versus family\'s wishes in organ donation. We recently fielded a consult
involving a 49 y/o male who had expressed wishes on an admission
screening that, in the event of his death, his organs NOT be harvested
for donation. Despite this, the organ procurement organization
approached the now deceased patient's family who expressed a preference
that the organs be harvested. That got us thinking about how best to
handle situations where the previously expressed wishes of the patient
are discrepant from those of the surviving family. Today we will try to
consider the ethical questions raised in such circumstances.

To start, consider that in 1999 in the United States, well over 70,000
people were on transplant waiting lists. Of those, nearly 6500 died that
year because we continue to experience a significant shortfall in
transplantable solid organs.

In January of 2001, Wendler and Dickert examined the consent process for
organ procurement in an article published in JAMA. All 61 of the active
organ procurement organizations (OPOs) in the United States at the time
of the study participated. The overall results showed that roughly 1/3
of the OPOs follow the decedent's wishes, another 1/3 follow the next of
kin's (NOK) wishes, the rest tend to procure if either party consents or
if neither party objects to organ harvesting. Interestingly, only half
of the OPOs had an official policy to address whether they follow the
family's or the decedent's wishes in the event of a conflict. Of those
that did, nearly all followed the next-of-kin's wishes. Regarding
factors that influence OPOs choice of consent practice, nearly half
ranked the importance of the impact on the decedent's family as the most
important factor while only 11% ranked the priority of the decedent's
wishes as the most important factor in shaping their practices. One
thing appeared certain from this study: widespread divergence exists in
OPO's consent practices across our country. This article makes for
fascinating reading and I will furnish the reference in the follow-up
e-mail for this call.

In VHA, as best as I can tell, each facility has an agreement with a
local OPO. Most facilities follow the local OPO's practices as long as
they are consistent with national VA Policy. There is no specific
national VA policy on how to handle discrepancies between the wishes of
the decedent and the family.

To continue today\'s discussion, I\'d like to call on one of our
Center\'s philosopher\'s, Dr. Paul Reitemeier. Paul, please provide your
analysis of the ethical priority of decedent\'s versus family\'s wishes
in organ donation

**Dr. Paul Reitemeier:**

There are several important ethical issues in the case you just
described. For our discussion today, let's consider the reverse
situation---a recently deceased patient had documented that he wants to
be an organ donor, but his grieving family is now objecting to that
happening. What should the health care providers and Organ Procurement
Officers do? I think to put this case into proper focus it may be
helpful to lay out a kind of map of the moral landscape.

At the center of this landscape is the decision regarding the proper
treatment of the patient's organs. All around that decision, however,
are features that cast shadows over it, making it difficult to see and
understand the decision clearly. So let me quickly walk around some of
the larger features to see if we can get a clearer look at the ethical
content of the decision.

One prominent feature on this landscape is the fact that the patient is
dead. When he was alive he left instructions about his wishes for the
care and disposal of his body after his death. Those instructions are
important, for he is no longer able to change or modify them at all. We
need to treat them with respect but not, perhaps, as absolutely
determinative of what we should do. Since the patient is now dead, I
think it is tempting---but ultimately would be a mistake---to conclude
that the most important ethical principle is to safeguard or promote his
former autonomy while he was alive, and therefore to insist that his
organs be removed for transplant. Patient autonomy is an important moral
value in health care but it is not the only or even the most important
value, and we must try to discern how the patient might balance it with
other relevant values. It is not a trump card and it would be a moral
error to mistake it as such. Furthermore, the decision must be made
under the actual present conditions, not what the patient may have
imagined the conditions would be when he issued his instructions. His
prior instructions, however autonomously they may have been issued, do
not arise from the only moral value at work here.

There is a complication to this feature that we need to recognize. We
cannot be certain that the patient's decision to have his organs used
for transplantation was as well informed of a decision as he desired or
hoped. For instance, did he consider and genuinely appreciate that his
family would be so grief stricken that it might cause them to object to
his organs being removed? We do not know. Would that knowledge, if he
had it, make a difference to him and change his decision about donation?
Again, we do not know and we cannot know, at least for certain. It is
reasonable to presume that at least some people would withdraw their
donation instruction if they knew how distraught their family members
were and how much organ removal would exacerbate their distress. But in
this case we simply cannot be sure whether it was something he
considered or not, and if he didn't would it have made a difference to
him? This uncertainty is a complicating feature, but really it is no
different from the uncertainty that can arise when interpreting advance
directives for living patients who lack decision-making capacity.

Since we cannot be certain how this patient would have decided if he had
been fully informed, we should hesitate to implement his expressed wish
to donate his organs on the grounds of protecting an autonomous
decision. It may have been an autonomous decision, but not a
well-informed decision, and that is an important and morally relevant
difference.

**Dr. Berkowitz:**

So Paul, besides autonomy and evaluating the intent of the decision,
what else should we consider?

**Dr. Reitemeier:**

Well Ken, I think a think a careful analysis will suggest that there are
two morally relevant values concerning this patient's donation
instruction. The first one is altruism, the unselfish regard for or
devotion to the welfare of others. That, presumably, is the moral good
that the patient wanted to have carry the day. The second relevant value
is the family's welfare and in particular the patient's regard for his
family's welfare. The dispute about removing his organs arises because
these two values are in conflict, and that is the second feature of our
moral landscape. We appear to be faced with the question of what the
patient's interests might be in settling the conflict, but that, it
turns out, is an irregular question. The interest we have in resolving
this conflict is a newly appearing interest, and dead bodies cannot
develop interests, in fact they have no interests of any kind. We
recognize that some interests can survive one's death as evidenced by
the making and carrying out of wills, but dead people can formulate no
new interests once they are deceased. So, rather than thinking about
this as a matter of trying to protect or promote the patient's interests
or autonomy, I think we serve him more faithfully by sincerely trying to
respect and foster his altruism, within the context of his family's
grief and objections to organ removal.

So the third feature on this moral landscape is the grieving family's
objection to having the patient's organs removed. They do not object to
another patient benefiting from the organ transfer, rather they are
facing a very difficult decision. Perhaps they believe they cannot bear
further loss of their loved one. They know about their loved one's
instructions to use his organs for transplant, and they may not be
surprised by his generosity in that regard, but perhaps they simply
cannot bear to have his body dissected and parts removed, leaving only
some of him for them to bury. Their grief and loss is overwhelming their
ability to look beyond their immediate self-interest. When presented
with the evidence of the patient's desire to act altruistically, they
may argue that his altruism is better served by respecting their wishes
since that would benefit his family's welfare, and surely the patient
would prefer benefiting their welfare to that of a stranger.

A fourth feature to consider is the complex legal and social background
in which this particular decision is played out. Legally there are no
property rights to human organs. Even the patient cannot claim property
rights in that he cannot direct that his organs be sold for transplant,
or research, or any other purpose. If he wants to give them away for
free he can, but he cannot sell them. In that sense, altruism is the
most common motivation for organ donation after death.

We have a very extensive set of health care charity programs, and one of
the highest volunteer donor rates for blood in the world. Most
importantly, millions of Americans have indicated that they are willing
to be organ donors, and tens of thousands are successful organ donors
every year. But despite this significant volunteerism and a strong
social interest in fostering organ transplantation, as a society we have
not moved toward presumed consent for organ donation as has happened in
other countries. It is not clear then, what the most socially acceptable
thing to do is in this case, or whether a majority could even agree on
what is most acceptable. One danger of capitulating too easily to the
family's objection, however, is the risk that an erosion of trust may
result. If the health professionals make the effort to solicit people's
wishes about organ donation while they are alive, as we routinely do,
but then we do not follow through on their wishes to donate if anyone
objects, we lose credibility and risk the perception of lacking
integrity

So those are some of the larger features on the moral landscape as I see
it. There certainly are more features or issues, and I will be
interested to hear from our callers about additional considerations they
think are relevant.

**Dr. Berkowitz:**

So Paul in your opinion, how should we handle decisions regarding
conflict between the family\'s and the patient\'s wishes?

**Dr. Reitemeier:**

Well, I think this can be usefully addressed in two stages. First, we
can ask what is the right decision to make? Who understands the
patient's personal values and motivations most clearly? Who can best
represent how his values of altruism and love of family balance out in
this case? If the people who know him well are clear about how that
balancing comes out, then it seems to me that that is what should be
done. They may give different reasons for thinking why it balances out
the way it does, but if there is wide agreement on the action to take,
then we can move forward with it.

However, if figuring out how to balance the patient's two values of
altruism and love of family is not clear, if there is strong
disagreement about which way the patient would likely balance them, then
we might shift from the substantive approach to a process approach and
ask who in this case is the appropriate decision maker? If that question
is easier to answer among all the informed parties, and people can
generally agree on who that person is, then whatever decision is made by
that person should be more acceptable because it is made by the right
person, even if some disagree with the content of the final decision.

In summary then, since most people who come to be organ donors are
relatively young and die unexpectedly from trauma or brain injury, it is
not uncommon for families to be wrought with grief at the time they are
involved in organ donation. Therefore, when VA practitioners discuss
organ donation with their patients it would be a very good idea to ask
specifically about the circumstances of family grief and how the VA can
best help the family and honor the patient's wishes at the same time.

I hope these thoughts are helpful to getting our discussion started.

**MODERATED DISCUSSION**

**Dr. Berkowitz:**

Thank you Paul, and I\'m sure we\'ve said enough to stimulate a
discussion now. And we do still have about 20 minutes for open
discussion of today\'s topic, so anyone out there, please feel free to
introduce yourself and let us know what you think. Any thoughts from the
field?

**Dr. Alice Beal VA NY Harbor:**

I have a question. Paul you said who in this case is the appropriate
decision-maker? You said that was an easier question to answer.

**Dr. Reitemeier:**

Not quite, I said it might be.

**Dr. Beal:**

Oh, it might be. Because I can see that being very difficult.

**Dr. Reitemeier:**

Well, it could be difficult. On the other hand even though you have
people disagreeing on what the right answer is to this question, they
might agree on who the patient would ask to have speak on his behalf.
And this has particularly, I think, helped a lot when the patient has
executed an advance directive that includes a proxy decision-maker.

**Dr. Berkowitz:**

In fact, one thing that ties in to that is some more data from the
Wendler paper that I had referred to before where the OPO\'s responded
that in their practices the durable power of attorney appeared to have
substantial weight in the organ procurement organization\'s decisions.
In fact, nearly 60%, if I remember correctly, of the organ procurement
organizations said that they followed the durable power of attorney for
health care\'s wishes in such a situation, and that is particularly
fascinating since, if there is any lawyer on the phone can correct me if
I am wrong, but the authority of the durable power of attorney for
health care, as I understand it, ends at the time of the patient\'s
death.

**Dr. Reitemeier:**

That is my understanding too, Ken. I think that even though the
authority of advance directives ends at death, the fact that an
individual has been identified by the patient as the appropriate
decision maker in his behalf does lend good credence to having them
assume the role of decision maker with respect to organ transplant after
the patient has died. And that is recognized as a legally permissible
authority.

**Dr. Berkowitz:**

Right. I think that is very logical morally, but again I would like to
see that specifically laid out in the document so that we can be sure
that is really the patient\'s intent.

**Angela Prudhomme, JD, Office of General Counsel:**

In the article when they are talking about the durable power of attorney
for health care, are they talking about the patient\'s express wishes in
that advance directive or are they talking about them going to the
individual designated to make the decision? Or did they separate those
out?

**Dr. Reitemeier:**

I don\'t recall that they separated those out. Ken, what is your
recollection?

**Dr. Berkowitz:**

What I recollect is that they talk about the fact that the while the OPO
seemed to recognize that the authority of the durable powers of attorney
did not entitle them to make decisions after death, they were given that
authority by the OPO in considering what to do. I don\'t remember
specifically that they separate it out, any group with that authority
was specifically offered in writing.

**George Flanagan, Chaplain, Kansas City VAMC:**

Another dynamic I am aware of in Missouri is, that the way the law is
written in Missouri is, that the family actually does not have the legal
right to change the patient\'s pre-expressed wishes. I also know that in
most realities, that is not regarded because there is usually an effort
to seek a balance between the patient\'s expressed wishes and the
different wishes of the family. But those kinds of things complicate it
because our ethical conclusions aren\'t always fully supported by the
law when we seek to back them up.

**Dr. Berkowitz:**

Right, and I think that the over arching law, and again Angela, please
help me out here, is the Uniform Anatomical Gift Act and as far as I
understand, there is language in the Uniform Anatomical Gift Act that
recognizes the right of the decedent to prevent donation of any or all
organs. And as far as I understand it, there is no legal authority to
overrule that. But again, I think that is very different from the case
of a family overruling a patient\'s wishes that his organs should be
donated, which I am not aware of being specifically addressed in the
Uniform Anatomical Gift Act. And that is very different than the
divergence or the inconsistency that is practiced around the country
that we really now know exists.

**Ms. Prudhomme:**

I believe based on the Uniform Anatomical Gift Act each state develops
their own procedures for organ donation, and I didn\'t do a survey of
the different states to see what they would require, but I do believe
under the Dept policy, if the patient has indicated in an advance
directive that they want to donate their organs, that we do what we can
to try to honor that.

**Lynne Rustad, Ph.D., Cleveland VAMC:**

A couple of things. First, I think our OPO, and I suspect it is true of
many OPO\'s, has a pretty carefully outlined priority for consent among
relatives, much as the VA policies do. In fact, there is a lot of
similarity. Secondly, whoever raised the issue of state law, I think it
is an important issue right now. For example, Ohio now has legislation
that causes or asks us to respect the wishes of the patient, whatever
the desires of the families are, and I think that is something that is
realistic. Actually, we are meeting with our OPO representative right
after this phone call to find out more about it. But I think it adds
another complication. I think often the family wishes are respected more
for concerns about litigation than anything else, not necessarily an
ethical issue.

**Dr. Berkowitz:**

Right. You know it\'s funny I think that is the most common thing that
people feel for whatever reason. The OPO's have responded that their
reason for honoring family's wishes is not based on fear of litigation
but based on sensitivity for the grief that they are feeling.

**Dr. Reitemeier:**

Right. And as I recall from the Wendler article, it was based on the
difference of philosophic orientation to the ethics involved that
distinguished OPO practices from each other. Now the Uniform Anatomical
Gift Act in 1984 was adopted by all 50 states and the District of
Columbia, but then when the revisions came through in 1987 which
essentially simplified the ability of patients to designate their organs
for organ transfer donation, only 22 states have adopted that in whole
or in part, as I recall. So I think that state law as is often the case
will underdetermine what the ethical imperative ought to be in this kind
of a case.

**Dr. Berkowitz:**

Is anyone aware of a local VA facility that has a policy on how to
address discrepancies or a consistent practice of how they address
discrepancies between the decedent and family's wishes?

**Jeffrey Tepsitch, Social Worker, West Palm Beach VAMC:**

Our policy on that is that first of all, according to our Regional
Counsel when a patient is admitted we ask him if he wants to be an organ
donor, and if he says he does, we get him to sign an organ donor card
and we also get him to sign a release of information to the OPO. That is
scanned into the medical records. When that person dies and they are
determined to be a suitable donor, the family is consulted. If the
family disagrees, the organs aren\'t used. If a person dies and they are
found to be a suitable organ donor and they never signed a release of
information, we never contact the OPO.

**Dr. Berkowitz:**

Is Beverly Zinicola on the line?

**Beverly Zinicola, Transplant Coordinator, VAHQ**:

Yes I am.

**Dr. Berkowitz**:

Beverly, do you have anything to comment on that? Beverly, for those who
don\'t know, is the manager of the VA\'s Transplant Program in
Headquarters.

**Ms. Zinicola**:

Well, based on the three statutes that VA has to operate under, it is
true. If they don\'t sign that release for the information disclosure.
Because once they die, the Privacy Act goes away, and the names and
identification of relatives/next-of-kin goes away. Right now I\'m
waiting for a final decision on proposed legislation that we put forth
that will eliminate having to get this consent signed. It\'s being
reviewed by different federal agencies, and when they finish their
review it will be sent forward to Congress. I think that is going to be
a big step for the VA in its relationship with the OPO\'s in providing
organs for donation.

**Dr. Berkowitz:**

And for those who don\'t know, I think that is proposal 3-H, and that
proposal would allow VA to release certain patient information
automatically to OPOs, tissue banks and eye banks that is currently not
allowed to be released without specific consent. Correct?

**Ms. Zinicola:**

That is absolutely correct.

**Dr. Reitemeier:**

I\'d like to ask Jeff Tepsitch a question about your procedures there in
Florida. If you get consent from a veteran patient to be an organ donor,
do you at that time explain to them that if his family objects at the
time of death that in fact his organs won\'t be used?

**Mr. Tepsitch:**

I can\'t guarantee that is happening. It should be. But since I am not
an actual clinical provider, I don\'t know. I couldn\'t comment that
100% of the time that the staff are doing that.

**Ms. Zinicola**:

Is there something in what he signs that indicates that he has discussed
this with his family?

**Mr. Tepsitch**:

No, it\'s just a standard release of information that he signs. We
explain to the patient that he needs to sign it to allow us to proceed
with his wishes if he dies and his organs are found to be suitable.

**Ms. Zinicola:**

You said that he signs. If he wants to donate you have him sign
something regarding the donation as opposed to releasing information.

**Mr. Tepsitch:**

Right. He signs a separate donor card.

**Ms. Zinicola:**

Right. Is there anything when he signs that organ donor card that states
that he has discussed this with family members and that they are in
agreement with his wishes or something to that effect.

**Mr. Tepsitch**:

I don\'t think there is anything like that.

**Dr. Berkowitz:**

I think certainly that would be, in an ideal world, the best way to get
to the root of some of this conflict---if we could encourage the patient
to discuss this with the people who will be making the decisions in his
absence to try to get rid of some of the issues and air some of his
feelings before there is no further chance for communication.

**Dr. Reitemeier:**

Right. I would heartily endorse that Ken. I think it comes under what we
might call preventive ethics where if you can get a shared understanding
between the patient and their family as to what is going to happen upon
death. That is the best. If you can\'t get that agreement, if the family
actually tells the patient that they are never going agree to them
taking your organs for transplant, then I think it gives the patient an
opportunity to be very directive to the health care providers as to what
to do in that circumstance of expected conflict.

**Ms. Zinicola:**

Even if you see the TV ads, they very strongly state, \"You are not an
organ donor if you haven\'t discussed it with your family.\" That\'s the
way the ad says, in other words, that your family can overrule you.

**Dr. Berkowitz**:

That is the practice in many locations. Not in all locations, but in
many locations. Jeff, I don\'t mean to put you on the spot, but I am
just curious what was the thought process that was used at West Palm, if
you have any insight into this, in deciding to make it their practice
that the families\' decisions should be final and should supercede the
known wishes of the patients.

**Mr. Tepsitch:**

I wasn\'t involved in the actual policy writing, but I think it was
based upon the advice of Regional Counsel.

**Sheila Young, PhD, Reno VAMC:**

We have a similar thing, only because our OPO - that is their policy. If
the family objects, they stop.

**Dr. Reitemeier:**

But they are not required to stop under Nevada law?

**Dr. Young:**

That I do not know.

**Roberta, Portland, OR:**

Our OPO is moving towards actually presumed first person consent. In the
past we have always gone with the wishes of the family. The OPO is
trending towards proceeding with donation if it is on the card, and they
are going to presume that that is a legal document. So I will be
interested to hear what the decision is here on what we should be doing
at our Center.

**Dr. Reitemeier:**

Do you know if that OPO is considering in addition to that some sort of
routine family notification or seeking family consent? It doesn\'t sound
like they are going to seek family consent, but they might seek family
notification.

**Roberta:**

I don\'t know all the details on that. This is fairly new.

**Dr. Rustad:**

In Ohio, at least, it would be family notification.

**Dr. Reitemeier**:

So Lynne, they simply inform the family as compassionately as they can
that in accord with the patient\'s express wishes they are going to
proceed with this organ transfer?

**Dr. Rustad:**

That is what we understand. We are meeting with them, as I said, today,
but that is our understanding.

**Dr. Berkowitz:**

One thing I have been wondering about is how should the interests of
society be considered in this debate. Since there is a recognized
shortage of transplantable organs and since we recognize that there is
discrepancy or inconsistency in the way these situations are handled,
would it be fair to say that since in general we would like to harvest
as many organs as possible, if either the patient or the family gives
consent, then because it is in society\'s interest and it is something
that we as a group are trying to promote that we would then consider
that we have authority to harvest the organs. Is that a valid
tiebreaker\--the interests of society?

**Dr. Reitemeier:**

Well that is an interesting question Ken. As a philosopher I have to say
I don\'t think there probably is a shared conclusion to that question in
society. We have in some regards a strong communitarian ethic as I
mentioned with respect to our extensive charity programs in health care
for the poor and the disabled and underprivileged, our volunteers with
the blood, and a lot of people are on record as having agreed to be
organ donors. On the other hand we also have rugged individualism as
part of the social fabric of the United States' long history. In a
pluralistic society such as ours, I think that the individual's decision
to not be a donor really would have to take a fairly large place in our
considerations and interest in society to maximize harvesting of organs
may not be able to match up with that. I do think that if the patient
has not said anything and the family is willing to authorize organ
transfer, that that ought to be pursued. I think that very clearly
supports the public health and provides a very strong and altruistic
good to society, but if the family wants to be a donor and the patient
is on record as having refused, that I think is a different matter.

**Dr. Berkowitz:**

That comes back again, Paul, to the matter of trust that you briefly
mentioned, and it is something that I feel very strongly about. I do
feel personally that if we take the time to get someone\'s wishes, then
we do have a duty to keep our promise, even if the patient has died.

**Dr. Reitemeier:**

I agree with you. And that is why the case where you have an agreement
between the physician and the patient that organ donation will be
pursued if possible, and that if the family objects, I think it is then
incumbent upon the physician to do everything possible in concert with
the OPO to try to convince the family that the patient\'s interests are
really their primary obligation as health care providers. That is the
person they had the relationship with. That is a relationship that is
grounded in trust, it\'s called a fiduciary relationship, and that
really the family\'s grief and objections are different from the
patient\'s altruistic motivations to participate in organ transfer. And
as a result, I think the physician should be expected to champion the
patient\'s wishes as much as possible based on a respect for their
altruistic motivation and to try and deal with the family\'s grief
perhaps is a separate but related issue.

**Dr. Berkowitz:**

The most common counter to that Paul is that you no longer have a
patient. And again, I would say that not following known wishes of a
patient after they have died impacts on our health care systems
relationships with all the remaining patients because again, we are
trying to build trust with them and I do think if we make promises to
them that we should keep them.

**Dr. Reitemeier:**

Absolutely. I think that is one of the fundamental principles of good
health care and medical ethics is that we keep our promises and that we
make them with sincere commitment to be faithful to them.

**Fran Cecere, RN, Syracuse VAMC:**

Just a couple of thoughts. If I were the mother of a healthy 30-year old
male who died and his organs could be donated, and I was the next-of-kin
I would be asked: do you want to donate the organs? My decision at that
point would be respected, because he had not made a prior commitment. So
at that point there is no ethical dilemma, even though his organs really
could benefit society, they would respect my wishes. It is kind of just
a comment. But then you get into where he made this decision and now I
am put in that same situation, do you agree or don\'t you, and would my
thoughts be the same. Gee, I am glad you approached me with it because I
never thought about it, and it really would be good for society. So it
is kind of an interesting and ethical dilemma, especially if he has
voiced it, but maybe not voiced it to me. Maybe he voiced it to his
friends or put it in writing. So I think that idea of sharing with the
family is a very good one. What I am interested in too, how often does
this come up in the VA as opposed to other places maybe where they have
a younger or healthier population where the organs really could be used?

**Dr. Berkowitz:**

Well, I think actually Fran one of the things that we would like to get
away from is thinking about age limits on organ donors, especially when
think of people as organ or tissue donors. Because often times I have
been very surprised that people that I thought would be of advanced age
can still donate tissue. It\'s not necessarily organs. As far as your
specific question about the frequency where this comes up.---honestly,
unless Beverly knows differently than I do, I am not sure there is any
data that can give you an answer to that.

**Ms. Zinicola:**

No, I don\'t know of any because nobody is tracking it at the VA\'s
other than the OPO\'s, and I don\'t think they have done a consolidated
report of any kind\--just specifically VA.

**Dr. Berkowitz:**

I\'m not sure they actually keep firm data on their process for
obtaining consent unless you know something that I don\'t know.

**Ms. Zinicola:**

No, I don\'t. I\'m just going by the fact that you can get information
as to which patient has donated.

**Dr. Rustad:**

We have data for our medical center, which we keep as well as the OPO
now. Would it be helpful to National Center if you want some statistics
sort of do a survey of what data people have available?

**Dr. Berkowitz:**

I think actually it is a really difficult question. And I think data
describing current practices and to try to get a handle on how big a
problem this really is would be very, very useful. So if you have some
way to help get that data, I think that would be great.

**Dr. Rustad:**

The VA should have that data available because as part of that VHA
Directive on organ donation we included a sample donor referral form and
it has spaces on there asking if the family was contacted, were they
offered the opportunity, did they or did they not decline, if they
didn\'t, what was the reason, etc. So that information should, and I
emphasize should be available but whether or not anybody is pulling it
together at each center I don\'t know.

**Dr. Berkowitz:**

What struck me about this question is the inconsistency within our
system and within our country on practice here. It may turn out that is
because it is an ethical tossup or there is sort of true equipoise in
how you look at this or how you consider it, but I personally find that
somewhat unsatisfactory and think that we are always better off if we
have fair and consistent and transparent policies. And I was wondering
if in the closing minutes anyone has any idea about how we think this
issue could be addressed or moved forward at either the national or VHA
level, if people in fact think that is something is desirable.

**Dr. Beal**:

I was thinking, it looks like we have a lot of disparity here. And this
may be one of the areas where we should make a national recommendation
for the VAs in general so that we make our policy consistent. And an
aside to that in the rare event when we had an organ donaor candidate,
we have often run into the predicted category of drug abuse, alcohol, or
HIV or sickle cell, which is a whole different category and we weren\'t
able to release any of that information.

**Dr. Berkowitz:**

Right. And as Bev said, there\'s been legal proposals put forward to try
to eliminate that barrier towards release of information.

**Dr. Beal:**

And there\'s no reason why the medical centers cannot get that consent
up front. I think West Palm Beach that said they do that?

**Dr. Berkowitz:**

I think that is a great idea. If you know somebody has expressed the
wish to donate their organs, to immediately get that consent form.

**Ms. Zinicola:**

One of the issues with the OPO\'s is that everybody is suppose to be
referred, and there\'s no sense in referring for a death record review
if the OPO\'s cannot look at the records of someone who has that
protected information but no consent.

**Ms. Prudhomme:**

This is not my area of expertise, but I think one of the issues with the
consent for the disclosure for the information is protected under 7332,
is that it has to be specific written consent only for that limited
purpose, and it may also have to have a time where it lapses.

**Ms. Zinicola:**

Well, I would think possibly, if the patient does not expire at the end
of that admission, I would think it would expire. And if there is a new
admission you would have to get it again. Now there is a VA form called
Request Form Consent to Release of Medical Records, protected by 38 USC
7332, and that is in existence and it is VA Form 10-5345, and it sets
out all the information, the veteran\'s request, I understand the
information to be released includes information regarding the following
drug abuse, alcoholism, sickle cell, HIV and you say why or the purpose
for which the information is being used, and there is a place for the
patient to sign. So there is a form in existence if the medical centers
would attempt to get it signed when the patient is signing off on his
advance directives, etc. And that is what I have always suggested.

**Dr. Berkowitz:**

I think again, Beverly, that goes along with the general sentiments that
I think is very hard to argue with that as much as can be worked out
ahead of time with the patient, with the family, with the proper
documentation, presumably that will end a lot of the conflict.

**FROM THE FIELD**

**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. I am actually thinking of submitting this to the National
Ethics Committee as something to consider for a future report.

We do make provisions to continue our discussions in an electronic form
on our WebBoard, which can be accessed through the VA National Center
for Ethics website. We also post on our website a very detailed summary
of each Ethics Hotline Call. So please visit our website to review or
continue today\'s discussion.

I will be sending a follow up email for this call which will include the
links to all of the appropriate web addresses for the call summary and
the WebBoard discussion and the references to the articles I referred to
in my introduction. If the vagaries of cyber space permit, the follow-up
for today\'s call should be sent out by next week!

**Dr. Rustad:**

We also got recently a protocol from our OPO for a donation after
cardiac death protocol. In other words, a variant of the old brain death
protocol, which I am not even sure would be acceptable in the current VA
policy. So I think that would be an interesting issue to address too.

**Dr. Berkowitz:**

Sure. If you could send that along to me on Outlook, I would really
appreciate that too. Anything else for discussion today?

**George Kelly, Chaplain, VA NJ - East Orange:**

I thought the recent Ethics News was very good and very appropriate.

**Dr. Berkowitz:**

Thank you very much for that positive feedback, George. And I will make
sure that gets passed along to everyone who is responsible for it.

I think we will wrap it up and I would like to thank everyone who has
worked hard on the conception, planning and implementation of this call.
It's never a trivial task and I appreciate everyone\'s efforts,
especially Paul for his participation and help in setting up this call
and Beverly and Angela for their help in preparing us.

The next call will be on, Tuesday, August 27, 2002 from 12:00 to 12:50
Eastern Time. Please look to the Web site and to your outlook email for
details and announcements. I will be sending out a follow-up e-mail for
this call with the e-mail addresses and links that you can use to access
the NCEHC, the summary of this call and the electronic WebBoard
discussion and the references that I mentioned. 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 these calls and didn\'t. Or if you have suggestions for topics for
future calls.

Again, our new e-mail address is: <vhaethics@hq.med.va.gov> or VHA
Ethics in the Outlook Global Address List.