# National Ethics Teleconference

**Advance Care Planning and Management of Advance Directives**

**March 28, 2007**

# 

# INTRODUCTION

**Dr. Berkowitz:**

Good day everyone. This is Ken Berkowitz. I am the Chief of Ethics
Consultation 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 main focus of today\'s call.

# ANNOUNCEMENTS

Remember, CME credits are available for listeners of this call. To get
yours, go to <http://vaww.ees.aac.va.gov/ethics>.

**PRESENTATION**

**Dr. Berkowitz:**

In today's presentation, we will:

-   discuss the ethical values and principles behind advance care
    planning in VHA

-   highlight changes to the advance care planning policy, VHA Handbook
    1004.2, and the new advance directive form VA 10-0137

-   highlight some new resources designed to educate veterans about
    advance directives

-   look at how iMedConsent may be used to create and electronically
    save advance directive forms

-   consider and address ethical issues and practical questions that
    have arisen about VA Form 10-0137

Joining me on today's call are four staff from the National Center for
Ethics in Health Care:

**Ruth Cecire, MSW, PhD** -- Policy Analyst

**Ray Frazier, MA** -- Program Analyst

**Claire Maklan**, MPH, PhD -- Executive Assistant

**Robert Pearlman, MD, MPH** -- Chief, Ethics Evaluation

The Ethics Center is pleased to announce several changes in advance care
planning policy. We anticipate that these changes will prompt veterans
to ask more questions of their practitioners; generate a better
understanding of veterans' wishes regarding future care; and clarify
advance care planning practices for practitioners.

Dr. Maklan, what are the resources for advance care planning in VHA?

**Dr. Maklan:**

There are three key resources for advance care planning in VHA:

First, the national policy (i.e., VHA Handbook 1004.2) which was revised
effective February 22, 2007. The new title is Advance Care Planning and
Management of Advance Directives.

Second, a new version of VA Form 10-0137, *VA Advance Directive -
Durable Power of Attorney for Health Care and Living Will,* dated
December 2006*.*

Third, an expansion of the patient resource, called *Your Life, Your
Choices. Planning for Future Medical Decisions: How to Prepare a
Personalized Living Will.*

**Dr. Berkowitz:**

Are these materials currently available to veterans and local
facilities?

**Dr. Maklan:**

Yes. The updated advance care planning policy and the new form have been
released and both are available electronically through a link on the
Ethics Center's web site and on VHA's Publications website. You will
also find two new related support documents: Form 10-0137A, "Your Rights
Regarding Advance Directives," a one-page information sheet that states
patients' rights regarding advance directives and form 10-0137B, "What
You Should Know about Advance Directives," a one-page patient education
pamphlet. The policy, form, and support documents are also available on
the Publications/Forms website. Printed copies of the form and documents
will be distributed by April 15^th^ to all facilities. Lastly, the
expanded version of *Your Life, Your Choices* will be released through
the MyHealtheVet web portal this summer.

**Dr. Berkowitz:**

Thank you, Dr. Maklan. Let's continue today's discussion by emphasizing
the ethical principles and values that inform advance care planning in
VHA. VHA is committed to ensuring that patients' values, goals and
treatment preferences are respected and reflected in the care they
receive. Our policy on advance care planning reflects a broad public
consensus that all adult patients who have decision-making capacity have
the right to accept or refuse proposed medical treatments or procedures,
regardless of the expected consequences. The ethical principle of
respect for autonomy supports this right.

Health care preferences documented in advance by adult patients who have
lost decision-making capacity should be honored to the extent permitted
by clinical and professional standards and law.

We are also committed to shared decision-making, an ongoing process in
which patient, practitioner and sometimes the patient's surrogate
discuss the patient's goals for treatment and the various medical
options available to help meet these goals.

**Dr. Berkowitz:**

Dr. Cecire, could you define what we mean by "Advance Care Planning"?

**Dr. Cecire:**

Of course. Advance care planning is a process for identifying and
communicating an individual's values and preferences regarding future
health care for use at a time when that person is no longer capable of
making health care decisions. Advance care planning may occur in or
outside of health care settings, can be done by anyone with
decision-making capacity, and may or may not involve health care
professionals directly.

**Dr. Berkowitz**:

What is the difference between advance care planning and an advance
directive?

**Dr. Cecire:**

Advance care planning may result in a written advance directive
document, but this need not necessarily be the case. An advance
directive is a written statement by a person who has decision-making
capacity regarding preferences about future health care decisions in the
event that individual becomes unable to make those decisions.

**Dr. Berkowitz:**

Dr. Maklan, you were involved in developing the new policy. Can you tell
us what new provisions are included in the revised policy?

**Dr. Maklan**:

The major changes are: specification of responsibility and timing for
notifying and screening patients about advance directives; specification
of the role of primary care practitioners in the advance care planning
process; guidance on the management of advance directive forms in CPRS,
related progress notes, and the use of iMedConsent; protocols for
resolving disputes when a surrogate and the health care team disagree;
and recognition of the growing use of advance directive for decisions
other than life-sustaining treatments.

**Dr. Berkowitz**:

Dr. Cecire, could you begin by saying more about the provision for
notification and screening regarding advance directives?

**Dr. Cecire:**

The policy specifies that patients must be informed in writing about
their right to accept or refuse medical treatment; to designate a Health
Care Agent; and to execute an advance directive at check-in for a
patient's first primary care appointment, at admission to a VHA
inpatient facility and each admission to home or hospice care. Patients
must be asked whether they have an advance directive. If so, it must be
filed in the health record. If not, the patient must be offered the
opportunity to obtain more information or to make an appointment with
someone who can assist them in filling one out.

**Dr. Berkowitz**:

And could you say more about the provision that expands the
responsibilities of primary care practitioners in the advance care
planning process?

**Dr. Cecire:**

VHA Handbook 1004.2 states that primary care practitioners are
responsible for raising the issue of advance care planning with their
patients. Primary care practitioners are also responsible for giving
their patient's educational materials, encouraging them to discuss their
health care preferences with their loved ones, explaining the general
benefits and limitations of advance directives, and highlighting the
specific benefit of appointing a health care agent. These conversations
must be initiated with patients at intervals of no longer than three
years, whenever the primary care practitioner observes a significant
change in the patient's health status, and at the earliest opportunity
after a new or revised AD is entered into the patient's record. These
conversations should be initiated more frequently with patients who are
at high risk of losing decision-making capacity. The practitioner is
also responsible for documenting the advance care planning discussion in
the health record and arranging for filing the advance directive if one
is signed as a result of the discussion.

**Dr. Berkowitz**:

Mr. Frazier, what are the new CPRS note titles described in the revised
policy?

**Mr. Frazier:**

Three distinct progress note titles have been established in order to
ensure that advance directives and related discussions with patients can
be easily identified in the health record: "Advance Directive";
"Rescinded Advance Directive" and "Advance Directive Discussion." The
["Advance Directive"]{.underline} note title is used to document the
entry of an advance directive document into the patient's
record---either scanned or completed electronically using iMedConsent.
The ["Rescinded Advance Directive"]{.underline} note title is used to
document the patient's revocation of an advance directive and the
invalidity of the associated advance directive document. The ["Advance
Directive Discussion"]{.underline} note title is used to document an
advance care planning discussion between the practitioner and patient.
Such discussions may also be documented in an addendum to the "Advance
Directive" note associated with the advance directive.

**Dr. Berkowitz:**

A significant provision to the new advance directive policy outlines a
dispute resolution protocol that is to be followed if the health care
team and surrogate disagree in their interpretation of the patient's
preferences as stated in the living will. Because conflicts between the
surrogate and the health care team about end of life care in particular
can be extremely difficult, our goal was to help resolve conflicts
wherever possible and provide guidance about what to do when
disagreements persist.

Dr. Maklan, could you outline the key steps in the protocol?

**Dr. Maklan**:

When there is conflict between the surrogate and the health care team
about the interpretation of the living will, the first step is to
request a multi-disciplinary ethics consultation. The policy specifies
that "If the ethics consultation team is unable to resolve the conflict,
it is necessary to engage Regional Counsel and refer the matter to a
court of appropriate jurisdiction." The Handbook outlines the conditions
for referring the case to Regional Counsel and the appropriate court.
Paragraph 12b(1)(f) outlines the conditions that the consultation team
should determine exist in order for the case to be referred to Regional
Counsel and the appropriate court, e.g., The living will and its
contents are consistent with clinical and professional standards and VA
policy; the relevant statements contained in the living will are clear
and unambiguous, and a valid expression of the patient's preferences;
and the surrogate is unwilling to authorize treatment consistent with
those statements.

**Dr. Berkowitz:**

What does the new policy say about mental health advance directives?

**Dr. Maklan**:

The policy recognizes and defines mental health advance directives. A
mental health (or psychiatric) advance directive is "for patients whose
future decision-making capacity is at risk due to mental illness. In
this type of directive, the individual indicates preferences about
future mental health care (e.g., hospitalization, medications,
restraints, and/or electroconvulsive therapy)."

**Dr. Berkowitz**:

This concludes our discussion of the first resource for advance care
planning in VHA, Handbook 1004.2. The Ethics Center made the additions
that we have discussed in order to provide ample opportunities for
patients who wish to discuss their wishes to do so in collaboration with
the surrogate and health care team.

We turn now to the second resource, VA Form 10-0137, VA Advance
Directive -- *Durable Power of Attorney for Health Care and Living*
*Will*. Bob, you played a major role in the revision of the advance
directive form. Can you please comment on how the revised form was
developed?

**Dr. Pearlman**:

The VA advance directive form was revised based on experience and
feedback from VHA clinicians and patients. It also was informed through
VA and non-VA research pertaining to advance care planning. One of the
most important features of the form is the direct linkage that provides
a context for patient preferences. That is, the form now provides an
opportunity for patients to indicate their preferences for
life-sustaining treatments in relation to specific clinical situations.

**Dr. Berkowitz:**

Like the previous VA Advance Directive form and as its title makes
clear, this new form has two distinct parts. Dr. Cecire, what do we mean
by a Durable Power of Attorney for Health Care and a Living Will?

**Dr. Cecire**

A Durable Power of Attorney for Health Care (DPAHC) is a type of advance
directive in which an individual designates another person (i.e., a
"Health Care Agent", or proxy) to make health care decisions on the
individual's behalf.

A living will is a type of advance directive in which an individual
indicates personal preferences regarding future treatment options. A
living will typically includes preferences about life-sustaining
treatment, but it may also include preferences about other types of
health care (e.g., mental health treatment, blood transfusions, pain
management) **NOTE:** *Living wills must not be confused with care plans
(e.g., palliative care plans) or orders (e.g., treatment limitation
orders), which are written by health care professionals.\
*

**Dr. Berkowitz:**

Dr. Cecire, does the entire form need to be filled out to be valid?

**Dr. Cecire:**

Both sections do NOT have to be filled out for the form to be valid. A
veteran can fill out as little or as much as he or she wishes. However,
patients should understand the benefits of appointing a health care
agent. This is especially true if a problem related to surrogacy is
anticipated, for example with patients who want a surrogate other than
the person who would be designated by the usual VHA hierarchy.

**Dr. Berkowitz**:

How does the new advance directive form relate to other advance
directive forms?

**Dr. Cecire:**

Older versions of VA Form 10-0137 currently saved to the veteran's
record will be honored unless they are rescinded. There is no
requirement to replace an old form with a new form unless the veteran
wishes to change the information in his or her advance directive.

In addition to the revised VA Advance Directive, VA recognizes and
honors any State-authorized medical or mental health advance directive
that is valid in one or more states under applicable State law, and any
valid DoD advance directive. If the form is valid in your state, it will
also be accepted in VA if it does not conflict with VA policy. If you
have any questions about whether your particular state form will be
valid in VA, consult with your regional counsel. If time does not permit
this step, a patient should complete and sign the VA Advance Directive,
which is known to be valid, and attach the state form to the completed
and signed VA Advance Directive. This ensures that the patient will have
his or her preferences documented until regional counsel can be
consulted.

**Dr. Berkowitz**:

As with the new advance directive policy, several revisions have been
made to the advance directive form, with the goal of clarifying the
patient's wishes and supporting faithful interpretation.

The intent of completing an Advance Directive is to prompt a discussion
between the patient and his or her primary care provider. The
conversation should focus on identifying the patient's health care goals
and determining how those goals might appropriately inform treatment
decisions should the patient lose decision-making capacity. Ideally,
this discussion should include the patient's designated health care
agent and/or loved ones.

Dr. Cecire, what are key provisions of the new form?

**Dr. Cecire**:

One change is that the form alerts veterans to the fact that certain
particularly sensitive health information, e.g., regarding HIV testing
or AIDS treatment, sickle cell anemia, substance abuse or alcoholism,
can not legally be shared with their Health Care Agent unless the
veteran signs VA Form 10-5345 providing specific consent. Veterans
should be helped to consider whether their surrogates will need this
information to make informed health care decisions on their behalf.

**Dr. Berkowitz**:

I understand that certain parts of the form may serve as a "prompt" for
advance care planning discussions. Could you elaborate?

**Dr. Cecire:**

The new form expands veterans' opportunity to express their wishes about
end-of-life care and is structured to prompt veterans to give careful
consideration to the care they would like to receive in different
clinical circumstances. There is further opportunity for veterans to
specify what types of life-sustaining treatments they would or would not
want to receive in those circumstances.

In response to this discussion of the various clinical situations, the
form allows the patient to answer "yes" or "no" if they have a clear
opinion about a future treatment, but they also have the option to say
"it depends." That answer will signal that the patient anticipates
possible circumstances in which he or she would want to leave
considerable discretion to their health care proxy. If the patient
wishes to elaborate on "it depends" or any other issue of importance to
them in regards to future health care wishes, he or she may do so in the
"additional preferences" section of the document or by attaching
additional pages to the form.

**Dr. Berkowitz:**

Could you elaborate on the provision for mental health care preferences?

**Dr. Cecire**:

Currently patients can document their preferences regarding treatment of
mental health conditions in the "additional preferences" section of the
advance directive form. They may also document preferences in pages
attached to the advance directive form, as they might do for any other
condition.

**Dr. Berkowitz**:

Finally, we ask veterans to indicate how strictly they wish their
preferences to be followed---"specifically" or "as a general guide"---so
that their surrogate decision-maker(s) and their health care team can
appropriately honor the patient's intentions. We anticipate that this
particular provision may help lighten surrogates' emotional burden by
offering specific guidance on how their loved one wanted his or her
preferences to be interpreted. In addition, we believe it will result in
fewer disputes between surrogates and the health care team.

Let's look now at electronic supports that may help patients complete
the advance directive form and help practitioners store the completed
form in the patient's health care record. Mr. Frazier, how does this
process work?

**Mr. Frazier:**

The iMedConsent program has been updated to incorporate the new advance
directive form. iMedConsent is launched from the toolbar in CPRS.
Advance care planning documents are listed under the "Shared" category
in the list of specialties on the main iMedConsent user interface. The
first document in the advance care planning folder is an advance
directive "wizard" that walks the user through the completion of an
advance directive document.

**Dr. Berkowitz:**

Is the program designed to be used directly by the patient?

**Mr. Frazier:**

No, iMed is not designed to be used directly by the patient. Rather a
VHA employee works through the program with the patient---incorporating
their health care preferences as directed by the patient. Once the
process is complete, the patient and witnesses sign the directive using
an electronic signature pad. The signatures are embedded in the document
image---just as if the entire document had been scanned-in to the
computer. A copy of the directive is then printed for the patient, and
the electronic document is saved directly to the patient record. A
summary progress note is automatically created and administratively
closed. Also included in iMedConsent are print-ready versions of the
advance directive and the patient education pamphlet if you want to
print them out and give them to the patient to fill out another time or
at home with their family.

**Dr. Berkowitz**:

I understand there are both advantages and disadvantages to using
iMedConsent to document advance directives. What do you recommend?

**Mr. Frazier:**

The Ethics Center strongly encourages each facility to determine whether
the iMedConsent advance directive functionality is a good fit with their
local practices. To aid you in this effort, please contact your local
iMedConsent Point of Contact---there is at least one at each facility.
The link to the iMedConsent POC list will be sent out with the follow up
e-mail for this call.

**Dr. Berkowitz**:

Next, we will review resources that have been developed or revised to
help veterans, their families and practitioners with the advance care
planning process. Dr. Pearlman, could you begin this part of the
discussion?

**Dr. Pearlman**:

I'd be happy to. Practitioners looking for a guide to help veterans
complete the new advance directive may wish to refer to "Your Life, Your
Choices: Planning for Future Medical Decisions: How to Prepare a
Personalized Living Will." At this time a PDF version of this workbook
exists through the VA research web site. However, the currently
available version is somewhat outdated and does not include the section
on mental health care preferences. An updated, interactive version of
this workbook will become available through the MyHealtheVet portal this
summer. We anticipate the release of an updated PDF version through the
Center's website at the same time.

**Dr. Berkowitz**:

Beyond the revised and expanded interactive version of *Your Life, Your
Choices* that is to be released soon, are there additional materials
currently available that veterans and practitioners may access to
support them in the advance care planning process?

**Dr. Pearlman**:

Yes. As mentioned at the beginning of today's call, also available are
two new related forms: (1) a one-page information sheet that explains
patients' rights regarding advance directives, and (2) a one-page
patient education pamphlet.

**Dr. Berkowitz:**

In addition to these written materials, Dr. Cecire has been conducting
conference calls with various groups of practitioners about the new
form. These calls have provided an excellent opportunity for the Ethics
Center to consider, discuss, and address caregiver concerns.

During these calls, several questions were raised about the particular
clinical situations described in Part III A of the form, in which the
veteran is asked, as part of his or her living will, to identify
treatment preferences in a range of situations.

In particular, several concerns were expressed about the third situation
described in the living will section, in which the veteran was asked to
consider what his or her treatment preferences might be "If I have a
permanent condition that makes me completely dependent on others for my
daily needs (for example, eating, bathing, toileting)."

Does the question itself imply that persons with disability should
"question their desire to live"? Given that persons with disabilities
are know to rate their quality of life higher than their practitioners
do, should care providers should utilize this information in discussing
long term outcomes and implications of physical dependency with
patients?

Dr. Cecire, how might this concern be addressed?

**Dr. Cecire:**

The clinical situations described in the living will section of the new
form were specifically identified by veterans in a VA sponsored research
project as conditions under which veterans might not want
life-sustaining treatment. These situations are included to provide
veterans an opportunity to express their wishes about clinical
circumstances that concern them. A better understanding of patients'
values should translate into improved, responsive health care practices.

We certainly agree that practitioners should be discussing the long term
outcomes and implications of physical dependency with patients as part
of the advance care planning process. The new Advance Directive was
developed with that very thought in mind. We believe that a more
extensive advance care planning conversation about these items will
result in a clearer understanding of a patient's values and better
patient-centered care.

As with all items on the checklist we are hopeful that the inclusion of
item #3 regarding a condition of total dependency will provide an
opportunity for a veteran to express his or her desires about their
treatment in the context of their personal value system. To exclude the
item about dependency might prevent some veterans from expressing and/or
clarifying their views regarding preferred treatments in a situation of
total dependency. Omitting the discussion about dependency would also
eliminate an opportunity for practitioners (1) to provide some education
about the actual quality-of-life of dependent patients for non-disabled
patients; and (2) to discuss quality-of-life concerns and treatment
preferences with physically disabled patients.

**Dr. Berkowitz:**

Similarly, the fifth item about pain control in the Living Will section
of the advance directive form provides an opportunity for staff to share
information with patients about the facts and trade offs of pain
management.

In addition to the issues about the living will section discussed above,
several practical questions about how to complete the new advance
directive form were raised during discussions with caregivers in the
field.

Dr. Cecire, does a patient have to have a terminal condition in order to
refuse life sustaining treatment?

**Dr. Cecire:**

No. In this regard, VHA practice is consistent with the private sector
and with the Patient Self-Determination Act.

**Dr. Berkowitz:**

Can the new form be edited?

**Dr. Cecire:**

No, the new form cannot be edited. This is an official VA form that
requires, and has received, approval by the Office of Management and
Budget (OMB). You will note, however, that the instructions allow
patients to attach additional pages

**Dr. Berkowitz:**

Signature by a Notary is optional. However, if a patient selects the
notary option, must two witnesses still sign the advance directive form?

**Dr. Cecire:**

Yes, VA policy requires that two witnesses sign every advance directive.
The optional space for signature and seal of a Notary was included
because some social workers told us that their state required it and
including it would provide more AD portability for veterans in those
states.

**Dr. Berkowitz:**

The National Center for Ethics in Health Care understands that this new
form is complex and more nuanced than the previous version. We believe
that this is a good thing. We anticipate that the form will prompt
veterans to ask more questions of their practitioners and that it will
generate productive discussions and a better understanding of patients'
wishes regarding care.

Nonetheless, we anticipate that questions may continue to arise during
this period of transition and encourage you to contact us when this
occurs. As you begin to use these new materials, keep in mind that they
are tools to use to facilitate an ongoing advance care planning process
in which patient, family and practitioner participate.

**MODERATED DISCUSSION**

**Dr. Berkowitz:**

## Well I'd like to thank Mr. Frazier and Drs. Cecire, Maklan, and Pearlman for discussing the topic of Advance Care Planning and Management of Advance Directives. Now that we have had an opportunity to discuss this topic, I would like to hear if our audience has any response or questions.

**Ms. Cottle, Palo Alto, CA**

I have a few questions about the new advance directive form. The first
question is about something that was present on the previous form and
omitted from the new form. Why was the option to donate organs and/or
tissues omitted from the new form?

**Dr. Berkowitz:**

There has been a lot of discussion in the ethics community and the
Ethics Center about whether to combine or keep separate planning
discussions about preferences for care and treatment and post-mortem
planning discussions about preferences about organ donation, autopsy,
donation of the body for cadaveric dissection, etc.

There are pros and cons of both. One of the reasons we decided to
separate advance care planning and advance directives for treatment from
the process of discussing post-mortem preferences is that it is
unpredictable how and when some of these discussions might occur and in
some situations it may be disadvantageous or undesirable to have these
discussions at the same time.

The decision to keep these discussions separate is not in any way meant
to imply that that the discussion of post-mortem preferences not
important or ethically, or in any way to discourage this process.

**Ms. Cottle:**

As a social worker, I have helped many veterans in completing the
Advance Directive form and they often bring up the issue of organ
donation. I have had them add their preferences in the large section for
"additional preferences" in the living will section of the form. Is this
an appropriate place to indicate their preferences?

**Dr. Berkowitz:**

I am not aware that there is any reason that these preferences cannot be
put there.

**Ms. Cottle**:

You alluded to preferences for autopsy and disposal of remains. If the
health care agent is not the legal next of kin, California allows a
person you appoint as an agent to consent to autopsy and disposal of
remains unless otherwise indicated on the document.

**Dr. Berkowitz:**

I am glad you raised that issue. In VA, the durable power of attorney
for health care and the authority to make health care decisions ends if
the patient expires. Unless the person designated as the health care
agent is also the next of kin, the authority to make decisions and to
act as patient's agent does end when patient dies. It should be made
clear to patients that if they designate someone other than the next of
kin as their agent, this person will not have the authority to act on
post-mortem preferences.

**Ms. Cottle:**

I have two quick final questions regarding California policy:

First, California does allow authority over post-mortem decisions to the
person the patient designates as the health care agent. What happens in
such a case?

Second, in California, an ombudsman has to be a witness as well for
persons in skilled nursing facilities. Veterans in our extended care
facilities are not using the VA form for that reason. Can you comment on
this as well?

**Dr. Berkowitz:**

I am very glad that you are pointing out the subtleties that occur in
different states; recall that the policy explicitly says that we will
honor state directives if they do not conflict with VA directives.
Beyond that, Dr. Hans, do you have anything to add?

**Dr. Hans**:

We are aware of different state requirements. On questions of legality
and which form is best for veterans to use to ensure that their
preferences are stated and they have document to support that, we
recommend that veterans talk to Regional Counsel ensure that they are
using the best form for the best setting in their state. Because
requirements vary so much across the country, we can't help with
specific interpretations.

**Dr. Berkowitz:**

I do want to reassure Ms. Cottle and others that the VA form is valid in
all VA facilities, that's correct?

**Dr. Hans:**

That's correct.

**Ms. Cottle**:

Regarding section C in the living will, "How Strictly You Want Your
Preferences Followed": if a veteran chooses not to appoint an agent,
should they then omit this section?

**Dr. Berkowitz**:

They don't have to, since there still will be person, i.e., a surrogate,
that will be making decisions on behalf of the patient even if the
patient does not select a health care agent. We encourage anyone who is
filling out the form, if they have feelings about how strictly they want
their preferences followed, to fill out section C, regardless of whether
or not they appoint an agent.

Does anyone else agree or disagree with that?

**Dr. Pearlman**:

This is good advice. For the most part, this is guidance for the
anticipated surrogate. However, if you don't appoint a health care
agent, then a surrogate may be appointed for you.

**Ms. Cottle:**

I am aware that there is a whole process to follow when there is no
surrogate, but could this note about strictly a patient wants his or her
preferences followed also be interpreted in end-of-life situations where
there is no surrogate that they then leave it up to medical team to make
those decisions?

**Dr. Berkowitz:**

There is never a time according to VA policy, especially in end-of-life
decision making, that decisions are ever left up to the medical team.

There is a process, so certainly whoever is making the decision would
never just be the team alone. I think that that might serve as useful
information to help guide those who are involved in the decision. I
think that that's the spirit in which this part of the document and the
rest of the document were intended.

**Mr. Latimer, Madison, WI**

I have two concerns about the language that is used in the advance
directive document: "If you become *too ill to make decisions for
yourself*, your Health Care Agent will have the authority to make all
health care decisions for you, including decisions to admit you to and
discharge you from any hospital or other health care institution" (Part
II: Durable Power of Attorney for Health Care).

First, I feel that the language of "too ill to make decisions for
yourself" is too vague a description of when a health care agent assumes
decision-making authority. I realize that there is an extensive
definition in the handbook and I agree with this definition completely.
However, from a consumer's perspective, we are asking veterans to
complete a document that will assign decision-making authority to some
one other than the patient under certain conditions, and I believe that
we need define what would count as "too ill."

Second, if patients leave the VA system, how are other health care
facilities to determine what counts as "too ill" to make decisions for
oneself?

**Dr. Berkowitz:**

Although I understand the gist of your concern, the overall introduction
to the form provides a broader description of when the advance directive
will go into effect: "If some day you become unable to make health care
decisions for yourself. . . ." I'm not sure I understand your objective
if you take this language into account.

**Mr. Latimer**:

I guess if I were a consumer completing this document, though, I would
again wonder about those terms as being not well-explained, not
well-defined. When actually I would have my decision-making authority
removed from me and given to another individual is a matter I would like
to have clearly spelled out in the form that I am actually signing.

**Dr. Berkowitz:**

If people read the form and have questions we encourage discussion with
members of health care team, and look to the supporting materials. They
need to make sure that all this is clear in their minds before they sign
a form

What is important is that patients know the advance directive forms are
available; that they can find them; and that if they have any questions
or concerns about them, that we are obligated to provide resources,
print or human or other, to make sure that they have all their questions
answered and clarified.

**Mr. Latimer:**

When is the form activated outside the system?

**Dr. Hans:**

It is important to note and remember that at this time, the advance
directive is not implied to be valid outside of VA. Some states
recognize the form because it is consistent with their state laws, but
to be absolutely sure that a veteran is covered outside of a VA
facility, he or she should check with counsel to be sure that they are
using a form that is consistent with their state laws. There is no
presumption that this form is consistent with the laws of a particular
state, and we have no authority to extend VA rules and authority outside
of VA's walls.

**Dr. Berkowitz**:

From an ethics standpoint, I hope that we have gotten to a point in this
country that anyone would -- when faced with a patient without capacity
with a significant decision to be made -- do their best to consider any
evidence of past expression of preferences.

Even though we don't intend for the form to be applied elsewhere, I hope
that from an ethics, health care practice standpoint throughout the
country, people would say: here's this form, let's consider it, let's
talk to the patient's surrogate, and develop a treatment plan that
reflects the patient's preferences as best as possible. I know that
might be idealistic, but I really hope that this is what we are all
striving for. Any information is better than no information, and
therefore the VA directive may be of some use outside, even though it is
not optimal for that given setting.

**Caller, Topeka, KS**:

We make these decisions all the time as treatment team. We determine at
what point we think the veteran no longer has capacity to make his or
her own decisions. When the patient is unable to participate, we look
for whatever documentation we have to guide us. This is essentially
something that we have been doing all along and I contend that they do
it in the private sector as well.

**Dr. Berkowitz:**

Also implicit is the issue about whether the patient will regain
capacity in time to speak for him or herself and be able to speak for
themselves.

Tim, did that answer your question?

**Mr. Latimer:**

Yes, but I disagree. I believe that the definition of when a patient is
too ill or unable to decide for him or herself should be part of the
document. For a consumer, I believe that the way that it is currently
worded seems subjective.

**Dr. Berkowitz:**

We cannot make any changes now to the form since it has just completed
the process of development and concurrence. However, if you have
specific suggestions for wording, we will take this into account when
the form comes around for revision again. We don't want to squash
constructive input.

**Dr. Maheswaran, New York Harbor, NY:**

I want to talk about the note titles. The only titles that we have are
for discussion and education of patients is the advance directive
discussion title. The palliative care team here wants to do the goals of
care and discussion and some patients do not want to fill out forms, but
they are willing to discuss goals of care. And if we use this form both
for education and for discussion of goals, the patient's goals might get
lost in the number of advance directive discussion titles that will be
generated by the nurses, social workers, and physicians in educating
them. My question is, is there any way that you can add another title
called advance directive education where we can just educate the patient
and give out the hand-outs?

**Dr. Berkowitz:**

An advantage of the current system is that it is stream-lined to three
note titles and those three note titles all trigger the CWAD system, so
they should be easy to find in the chart. Again, the progress note
titled "advance directive" itself is meant to be used only for the
current version of an advance directive form. The "advance directive
discussion" title is designed to capture some of the information that
you mention. That is a place where you can put details of a pithy
advance directive discussion, even if it doesn't result in completion of
a form. So you wouldn't use the advance directive note title itself

If you had a discussion that related to a completed form, you can either
put it as an addendum to the advance directive note that contains the
form, or you could put that in a separate advance directive discussion
form.

How every facility decides to document the other activities such as the
notification and the screening and the education -- that is left open
for optimization for the work flow for every particular facility. And
that is not specified in the policy.

Ray, if a local facility wanted to create another note title for advance
directive education, would they be able to do that?

**Mr. Frazier:**

I think that we would need to get this from the Note Titles
Standardization Group in VA. I worked with this group fairly extensively
to come up with these three note titles. There is a limited universe of
the terms that they allow; they have their own specific lexicon to
determine what these note titles should say. They were comfortable with
the idea, just as you explained it, Ken, that the advance directive
discussion could be about a specific advance directive and could result
in an advance directive form, but it also could be used to document a
general advance care planning discussion even if it didn't result in a
completed directive.

**Dr. Berkowitz:**

To go back to Dr. Maheswaran's question: Sathya, if you could send an
e-mail regarding where your local facility would like to document
education, we will do our best to focus on your question and get back to
you with an answer.

**Dr. Wear:**

We worked with clinical applications coordinators in Network 2 and have
had extended discussions on exactly these sort of titles. We came up
with titles somewhat different than yours. We grouped all the titles
under advance directives, and had one title for advance directive health
care planning and one for living will. The bottom line is that if
facilities are used to it, clinical applications coordinators can
generate these titles; this should be done with the review of higher
ups.

**Mr. Frazier**:

We developed these specific titles in order to bring about
standardization, for the main purpose when we get into remote data views
and access things across the system. At a minimum, all local facilities
have to map to these specific titles.

**Dr. Hans:**

So that they will show in the CWAD posting, correct?

**Dr. Wear:**

The titles that we have all show up in the CWAD.

**Dr. Berkowitz**:

I want to be very specific about the three progress note titles that
must be used and about what they must be used for. I don't think that
there is really any wiggle-room to split these titles apart, or to make
other titles, or to circumvent this structure. I think Dr. Maheswaran's
question was a little bit different about what do you do if advance
directive--related information that is important but might not be
appropriate for these three titles. I think that's a question that you
might work with you local clinical applications coordinator and decide
what best to put in, but if you're trying to document things that have
to do with either the completion of an advance directive, discussion
about an advance directive, or rescission of an advance directive, those
three titles according to the current policy must and should be used.
And again the desire is to standardize things across the country so that
when people from outside your facility go to look for it, they'll know
what to look for, where to find it and what to expect.

**Mr. Patts, Wilkes-Barre, PA:**

Regarding the notes, part of the problem that we've come up with is that
there will be so many postings, including DNR, allergies, etc., that you
won't know which to go do. Is it acceptable to make an addendum to one
of them?

**Dr. Berkowitz:**

The intent is that you will go to the AD note title for a completed
advance directive that should be documented and attached there. If you
go to look for a discussion, you can find it under advance directive
discussion, etc.

**Mr. Frazier:**

Policy does specifically allow for an advance directive discussion about
a specific document to be documented in an addendum to that specific
advance directive note tied to that advance directive form \-- so the
policy does talk about that.

I'm not sure that the policy specifically addresses say, an advance
directive discussion note with just a series of strings of addenda on
that. I'm not aware that we've given any specific guidance about whether
that was an appropriate way to document it.

**Dr. Berkowitz:**

A big step is the standardization of the three note titles; providers
are used to looking a series of things for patients all the time --
20-40-50 X-rays, EKGs, etc. and determining what's the latest and how
this applies to the current situation. This is the kind of attitude and
approach we would like to see applied to advance care planning and
advance directive documentation.

**Mr. Patts**

When we revoke DNR orders, the order is removed from the posting. What
is the purpose of retaining a rescinded advance directive on the posting
if the directive has been revoked?

**Dr. Berkowitz**:

We believe that it is useful for there to be documentation of the whole
string of activities in order to see the evolution and to document the
validity and consistency of the current directive if this is questioned.

**CONCLUSION**

**Dr. Berkowitz**

Well, as usual, we did not expect to conclude this discussion today. We
will post on our Web site a 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,
the CME credits, and the references and materials cited.

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 at our Center and EES.

Let me remind you our next NET call will be on Tuesday, April 24^th^ at
12:00 pm ET. Please look to the Web site at
<http://vaww.ethics.va.gov/activities/net.asp> and your Outlook e-mail
for details and announcements.