Recommended Literature
Validated Advisory Documents - References
Advance Care Planning Law and Policy
Advance Care Planning Discussion Script
Advance Care Planning Exercise
Worksheets and Forms
Downloadable Documents
Recommended Literature
Advance Planning. In: Ferris FD, Flannery JS, McNeal HB, Morissette MR, Cameron R, Bally GA, eds. Module 4: Palliative care. In: A Comprehensive Guide for the Care of Persons with HIV Disease. Toronto, Ontario: Mount Sinai Hospital and Casey House Hospice Inc.; 1995:118-120.
Council on Ethical and Judicial Affairs. Optimal use of orders-not-to-intervene and advance directives. In: Reports on End-of-Life Care. Chicago, IL: American Medical Association; 1998:52-58.
Di Prima K. Advance Care Planning [videotape/study guide]. Chicago, IL: American Medical Association; 1997. The Ethical Question Video/Study Guide Series.
Emanuel LL. Advance directives. In: Berger A, Levy MH, Portenoy RK, Weissman DE, eds. Principles and Practice of Supportive Oncology. Philadelphia, PA:Lippincott-Raven;1998:791-808 .
Emanuel LL, et al. Advance care planning as a process: structuring the discussions in practice. J Am Ger Soc. 1995;43(4): 440-446.
Teno JM, Lynn J. Putting advance-care planning into action. J Clin Ethics. 1996;7(3):205-214.
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Validated Advisory Documents - References
Emanuel LL. Advance directives: what have we learned so far? J Clin Ethics. 1993; 4(1):8-16.
Pearlman R, Starks H, Cain K, Cole W, Rosengren D, Patrick D. Your Life Your Choices, Planning for Future Medical Decisions: How to Prepare a Personalized Living Will. Seattle, WA: Patient Decision Support; 1992.
The University of Toronto Joint Centre for Bioethics. The Joint Centre for Bioethics Cancer Living Will Form. Available at: http://www.utoronto.ca/jcb/canchap5.htm Accessed October 22, 1998.
The University of Toronto Joint Centre for Bioethics. The Joint Centre for Bioethics HIV Living Will Form. Available at: http://www.utoronto.ca/jcb/hivchap5.htm Accessed October 22, 1998.
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Advance Care Planning: The Law and Policy
Common law, federal and state legislation, and
official policies of medical organizations support advance care planning.
US Supreme Court, 1990: Upheld
the patient’s right to self-determination, establishing that the right
applies even to patients who are no longer able to direct their own health
care, and that decisions for incompetent patients should be based on their
previously stated wishes.
Federal law, 1991: The Patient
Self-determination Act requires that patients be informed of their rights to
accept or refuse medical treatment and to specify in advance the care they
would like to receive should they become incapacitated.
State law: The patient’s right to
specify wishes in advance has been codified into statute in all 50 states.
Statutory documents recognized by law include the living will and the
durable power-of-attorney for health care.
Statutory documents are those that are
specifically described and defined in state statute. These documents are to
help protect physicians who honor a patient’s wishes. When such documents
are used, rights, obligations, and protections are clearly defined.
Nonstatutory documents or advisory documents are legal. They are
based on common law rights. They are supposed to accurately reflect a
patient’s wishes. In some states or settings, an advisory document is
enough; in others, a statutory form should be used as well. Especially in
states where a legal guardian may be necessary if there is no statutory
power-of-attorney for health care, one is recommended.
Professional policy: The AMA’s Council
on Ethical and Judicial Affairs identified advance care planning as an
essential component of standard medical care in 1997. It called for
physicians to conduct advance care planning discussions on a routine basis
using advisory documents as an adjunct to statutory documents, such as the
living will and the durable power-of-attorney for health care. The American
College of Physicians’ Ethics Manual, 4th edition, 1998 also supports
advance care planning.
See Module 15 - Legal Issues in End of Life Care for
further discussion and detail
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Advance
Care Planning Discussion Script
The following script provides an example of how you might discuss a patient’s concerns and needs about advance care. You may want to use this script in a role-playing exercise, alone or with another person, in order to experiment with and individualize the wording and phrasing. You may notice that you are more comfortable in these discussions after practice with this and similar scripts.
Mrs. Jones has come in for a routine
examination:
"Mrs. Jones, I’d like to talk with you about
something I try to discuss with all of my patients. It’s called advance care
planning. In fact, I feel that this is such an important topic that I have done
this myself, with my own physician. Are you familiar with advance care
planning?…"
"Have you thought about the type of medical care
you would like to have if you ever became too sick to speak for yourself? That
is the purpose of advance care planning, to ensure that you are cared for the
way you would want to be, even in times when communication may be
impossible.…"
"There is no change in your health that we have
not already discussed. I am bringing this up now because it is prudent for
everyone, no matter what their age or state of health, to plan for the
future...."
"Advance care planning will help both of us to
understand your values and goals for health care if you were to become
critically ill. Eventually we may put your choices into a written document that
I would make part of your patient record. We call this document an advance
directive, and it would only be used if you were to lose the capacity to make
decisions on your own, either temporarily or permanently...."
"Would you like to talk further about the kind of
care you would want to have if you were no longer able to express your own
wishes?"
"I also like to ask my patients if they have
someone that they would like to identify to act on their behalf in the event
that they are unable to express their own wishes. This person could be a
relative or a friend. Is there someone whom you would want to be part of our
discussion and whom you might want to have act on your behalf?..."
"Here is a copy of the form that I would like to
use to structure our conversation. We will talk about it in more depth the next
time we meet. Please think about it, talk with your family, and write down any
questions you have. Also, next time please bring anyone with you whom you want
to include in our discussion...."
Next Visit:
Ask questions about specific scenarios. Start by
asking about a persistent vegetative state.
"Mrs. Jones, I suggest we start by considering a
few examples as a way of getting to know your thinking. I will use examples that
I use for everyone. Let’s try to imagine several circumstances. We will go
through 4 and then perhaps another 1 or 2. First, imagine you were in a coma
with no awareness. Assume there was a slight chance that you might wake up and
be yourself again, but it was not likely. Some people would want us to withdraw
treatment and let them die, others would want us to attempt everything possible,
and yet others would want us to try to restore health, but stop treatment and
allow death if it were not working. What do you think you would want under these
circumstances?"
Then ask Mrs. Jones similar questions about 3 other
scenarios:
onset of coma from which there is a
chance of recovery, but with significant disability
onset of dementia when there is already an
advanced life-threatening illness
onset of dementia with no other
life-threatening diagnosis
If she is already experiencing a significant illness, ask
Mrs. Jones questions specific to her current illness:
"We should also consider the situations that your
particular illness can cause; that way you can be confident we will do what you
want. For sure, all people are different and you may never face these
circumstances. Nevertheless, let’s imagine . . . "
"People sometimes think about circumstances they
have seen or heard about. Some may seem worse than death. Do you ever think
about such circumstances?"
Finally, ask Mrs. Jones about how she would like to
handle a sudden critical illness that is life threatening.
"Well, we’ve gone through several scenarios now.
It seems to me that you feel particularly strongly about…. Indeed, you move from
wanting intervention to wanting to be allowed to die in peace at the point
when…. Do I speak for you correctly if I say that your personal threshold for
deciding to let go is …?"
"I think you have given a good picture of
particular decisions you would want. Can you also say something about the values
or beliefs that you hold? Understanding your more general views can be an
important part of getting specific decisions right."
Next Visit:
"Mrs. Jones, have you and …[your proxy/family
member] had a chance to continue the discussion we started 2 weeks ago? I see
you have a completed statement now. Let’s review your preferences."
"I am glad we went through this planning process
together. I have a much better idea of what matters to you than I did before,
and that will help me to be a good physician for you — in general, as well as in
case of serious illness."
"If you feel ready to, we can write down your
preferences, and all 3 of us can sign this document and make it official. Then
we will put it into your medical record and give you copies to take
home."
Two Years Later:
"Mrs. Jones, 2 years have gone by since we
completed your advance care plans, and in that time a lot has happened. People
sometimes change their wishes, so let’s review the wishes you wrote down a year
ago."
"Your choices have changed on a couple of your
earlier decisions when we reviewed your statement, even though we have discussed
the issues quite a lot. You have already said that you want …[proxy/family
member] to be your proxy. Would you prefer to give these few decisions over to
him/her to decide according to what he/she thinks would be in your best
interests?"
"For the remaining decisions, about which you are
clear and firm, would you like …[proxy/family member] to stick closely to them,
or would you prefer to give him/her room to make changes if he/she thinks your
best interests would be better served by a different decision?"
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Advance Care Planning Exercise
It is helpful to be able to say to patients and
families that you have done your own advance care planning as a matter of
routine care. It is also helpful to have experienced the process of trying to
imagine being in states of serious illness and mental incapacity.
You may be interested in using the following exercise in a group educational setting. This exercise provides a way for health care professionals to consider their feelings and responses to their own advance care planning.
First
Scenario
We will start by considering a scenario in which
you have an advanced illness with a very poor prognosis (less than 3 months if
the disease follows its usual course). You are in the hospital in a coma with a
poor likelihood of recovery when you develop a small bowel obstruction.
First, consider what you would want to be the
goals of your care in this circumstance. Would you want: (a) all possible
intervention to prolong life, (b) full intervention, but with early
reassessment, (c) interventions that may help but that are not too invasive, or
(d) noninvasive comfort care only? [Pause briefly.]
Now, consider what treatments you would want.
Would you want major surgery? [Pause briefly]. How about an
intermediate option with a nasogastric tube, and no intake by mouth? [Pause
briefly.] How about only intravenous antibiotics? [Pause
briefly.] What about only comfort measures with analgesics and
sedatives?
Let’s look at what goals you selected. How many of
you selected all possible interventions to prolong life? [You may want to
list this on the left-hand side of a flip chart or overhead projector. Count
hands and record the number.] How many selected full interventions, but with
early reassessment? [Count hands and record the number.] How many chose
interventions that might help but are not too invasive? [Count hands and
record the number.]How many chose noninvasive comfort care only? [Count
hands and record the number.]
Let’s look at what treatment options you selected.
How many wanted major surgery? [Count hands and record the number on the
right-hand side of the flip chart or overhead projector opposite the
corresponding goal.] How many wanted intermediate interventions with an NG
tube? [Count hands and record the number.] How many wanted antibiotics?
[Count hands and record the number.] How many chose noninvasive
comfort care only? [Count hands and record the number.]
Notice how many of you declined all interventions
and wanted only comfort measures. Some of you wanted some noninvasive or
minimally invasive measures. Also, notice the inconsistencies. When faced with
specific choices, some of you changed to a different "level" as related to
overall goals. If we were to move to a scenario of rosier prognosis, we would
still be likely to find a range of choices within the group. Many of you would
change your choices.
This process leads to an opportunity to think
about your own internal inconsistencies, how you might value various options,
and how you would set limits. Further, it helps you to be specific about your
relationship to death and dying.
Many of the questions in your mind are questions
that patients will have. Many are those that only people with advanced education
ask. In fact, lawyers and physicians tend to be either the fastest or the
slowest to complete these types of exercises. Most people, regardless of
educational experience, find these exercises helpful and doable.
Second
Scenario
Now, consider a scenario in which you have a mild
chronic condition. It affects your day-to-day living to a modest degree. You now
contract a life-threatening but potentially reversible condition such as
Staphylococcus aureus pneumonia. You are barely conscious and cannot make
decisions for yourself. Let’s go through the same exercise. First, let’s discuss
goals. Would you want: (a) all possible intervention to prolong life, (b)
intervention, but with early reassessment, (c) interventions that may help but
that are not too invasive, or (d) noninvasive comfort care only? [Pause
briefly.]
Now, consider what treatments you would want.
Would you want care in an intensive care unit, including pressors and
intubation? [Pause briefly.]Would you want a more intermediate
intervention, such as multiple intravenous antibiotics and low-dose pressors but
no transfer to an intensive care unit and no intubation? [Pause
briefly.]
Now consider a barely invasive intervention —
would you want IV antibiotics but a limit on the degree of laboratory testing?
[Pause briefly.] Would you want only comfort care with analgesics
and sedatives? [Pause briefly.]
Let’s look at what you selected now. How many of
you selected all possible interventions to prolong life? [You may want to
list this on a flip chart or overhead projector on the left hand side, as
before. Count hands and record the number.] How many selected intervention,
but with early reassessment? [Count hands and record the number.] How
many chose interventions that might help but not too invasive? [Count hands
and record the number.] How many chose non-invasive comfort care
only? [Count hands and record the number.]
Let’s look at what treatment options you selected.
How many chose all measures to prolong life? [Count hands and record the
number on the right-hand side of the flip chart or overhead projector opposite
the corresponding goal.] How many wanted intermediate interventions with IV
antibiotics, but no ICU care? [Count hands and record the number.] How
many wanted only IV antibiotics? [Count hands and record the number.]
How many chose noninvasive comfort care only? [Count hands and record the
number.]
Notice the changes. Most of you wanted
interventions that were much more "aggressive". Contrast your answers to this
scenario with the first. Do you have a sense of where your threshold for
intervention lies relative to prognosis and disability? Some of you could now
move to other scenarios and treatments that would more clearly define your
personal threshold for intervention. For many people, it is enough to define
where the threshold is, without resolved detailed decisions at the threshold.
Often this is where physician recommendation plays a stronger role and proxy
discretion comes in. Many patients are content with this.
Notice how most of you selected intervention
choices that were consistent with your general goal. This is usually the case.
However, some of you chose treatments that didn’t quite correspond with the
overall goal. Research shows that trying to predict intervention choices from
stated general goals (such as those in a living will) is weaker than
extrapolating from specific preferences. While identifying goals provides a
reality check and organizes our thinking, this is not a substitute for
considering specific examples.
Most people, after weighing other scenarios and
having fully completed an advance care planning worksheet, will feel that their
views are well articulated. Some proportion of patients, however, will feel that
there is something more that needs to be said. Invite them to give you a
statement in their own words, such as in a letter. Ask them to consider other
matters, such as whether the patient wants to die at home, or whether autopsy
and/or organ donation is desired. Invite the formal proxy to be designated. If
more than one proxy is desired, invite the patient to give some sense of order
of authority in cases of disagreement.
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Worksheets and Forms
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Downloadable Documents
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