ADVANCE CARE PLANNING & ADVANCE DIRECTIVE
Objectives: Upon Completion of this course the
student will know the following:
- What types of advance directives are
currently available?
- Why are advance directives important to
medical care?
- Are advance directives legally binding?
- When should I refer to a patient's advance
directive?
- What if a patient changes her mind?
- What if the family disagrees with a
patient's living will?
- How should I interpret a patient's advance
directive?
- What are the limitations of living wills?
- How is advance care planning different from advance
directives?
- What are the goals and expected outcomes of advance care
planning?
- Who should I approach for advance care planning?
- When and where should I initiate advance care planning?
- How can I raise these issues without scaring patients?
- Are there some questions that I could use for advance care
planning?
- How should I advise a patient if she doesn't have anyone to
name as a proxy?
- How should I advise a patient if he believes that some
family members will disagree with his wishes?
Advance
directives are usually written documents designed to allow
competent patients the opportunity to guide future health care
decisions in the event that they are unable to participate
directly in medical decision making.
What types of advance directives are currently available?
A 1991 federal law, the Patient Self-Determination Act,
requires that patients are informed about their right to
participate in health care decisions, including their right to
have an advance directive. Advance directives fall into two broad
categories: instructive and proxy. Instructive directives allow
for preferences regarding the provision of particular therapies or
classes of therapies. Living wills are the most common
examples of instructive directives, but other types of instructive
directives, such as no transfusion and no CPR directives are also
employed. The proxy directive, generally a Durable Power of
Attorney for Health Care (DPAHC), allows for the designation
of a surrogate medical decision maker of the patient's choosing.
This surrogate decision maker makes medical care decisions for the
patient in the event she is incapacitated.
Why are advance directives important to medical care?
The major argument for the use of instructive directives, such
as a living will, is that it allows an individual to participate
indirectly in future medical care decisions even if they become
decisionally incapacitated, i.e., unable to make informed
decisions. Instructive directives may extend individual autonomy
and help ensure that future care is consistent with previous
desires. The living will was created to help prevent unwanted and
ultimately futile invasive medical care at the end-of-life.
When patients becomes incapacitated someone else will be
required to make medical decisions regarding their care. Generally
a spouse is the legal surrogate. If no spouse is available, the
state law designates the order of surrogate decision makers,
usually other family members. By designating a DPAHC, the
patient's choice of a surrogate decision maker supersedes that of
the state. A legal surrogate is particularly valuable for persons
in non-traditional relationships or without close family. The
DPAHC need not be a relative of the patient, though this person
should have close knowledge of the patient's wishes and views.
Are advance directives legally binding?
Advance directives are recognized in one form or another by
legislative action in all 50 states . If the directive is constructed according to the outlines
provided by pertinent state legislation, they can be considered
legally binding. In questionable cases, the medical center's
attorney or ethics advisory committee can provide guidance on how
to proceed .
When should I refer to a patient's advance directive?
It is best to ask a patient early on in his care if he has a
living will, or other form of advance directives. Not only does
this information get included in the patient's chart, but by
raising the issue, the patient has an opportunity to clarify his
wishes with the care providers and his family .
However, advance directives take effect only in situations
where a patient is unable to participate directly in medical
decision making. Appeals to living wills and surrogate decision
makers are ethically and legally inappropriate when individuals
remain competent to guide their own care. The assessment of
decisional incapacity is often difficult and may involve a
psychiatric evaluation and, at times, a legal determination.
Some directives are written to apply only in particular
clinical situations, such as when the patient has a
"terminal" condition or an "incurable"
illness. These ambiguous terms mean that directives must be
interpreted by caregivers. More recent forms of instructive
directives have attempted to overcome this ambiguity by either
addressing specific interventions (e.g. blood transfusions or CPR)
that are to be prohibited in all clinical contexts.
What if a patient changes her mind?
As long as a patient remains competent to participate in
medical decisions, both documents are revocable. Informed
decisions by competent patients always supersede any written
directive.
What if the family disagrees with a patient's living will?
If there is a disagreement about either the interpretation or
the authority of a patient's living will, the medical team should
meet with the family and clarify what is at issue. The team should
explore the family's rationale for disagreeing with the living
will. Do they have a different idea of what should be done? Do
they have a different impression of what would be in the patient's
best interests, given her values and commitments? Or does the
family disagree with the physician's interpretation of the living
will?
These are complex and sensitive situations and a careful
dialogue can usually surface many other fears and concerns.
However, if the family merely does not like what the patient has
requested, they do not have much ethical power to sway the team.
If the disagreement is based on new knowledge, substituted
judgment, or recognition that the medical team has misinterpreted
the living will, the family has much more say in the situation. If
no agreement is reached, the hospital's Ethics Committee should be
consulted.
How should I interpret a patient's advance directive?
Living wills generally are written in ambiguous terms and
demand interpretation by providers. Terms like "extraordinary
means" and "unnaturally prolonging my life" need to
be placed in context of the present patient's values in order to
be meaningfully understood. More recent forms of instructive
directives have attempted to overcome this ambiguity by addressing
specific interventions (e.g., blood transfusions or CPR) to be
withheld. The DPAHC or a close family member often can help the
care team reach an understanding about what the patient would have
wanted. Of course, physician-patient dialogue is the best guide
for developing a personalized advance directive.
What are the limitations of living wills?
Living wills cannot cover all conceivable end-of-life
decisions. There is too much variability in clinical
decisionmaking to make an all-encompassing living will possible.
Persons who have written or are considering writing advance
directives should be made aware of the fact that these documents
are insufficient to ensure that all decisions regarding care at
the end-of-life will be made in accordance with their written
wishes. They should be strongly encouraged to communicate
preferences and values to both their medical providers and
family/surrogate decision makers.
Another potential limitation of advance directives is possible
changes in the patient's preferences over time or circumstance. A
living will may become inconsistent with the patient's revised
views about quality of life or other outcomes. This is yet another
reason to recommend that patients communicate with their
physicians and family members about their end-of-life wishes.
Advance Directives:
Case 1
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| An elderly man with end-stage emphysema
presents to the emergency room awake and alert and
complaining of shortness of breath. An evaluation reveals
that he has pneumonia. His condition deteriorates in the
emergency room and he has impending respiratory failure,
though he remains awake and alert. A copy of a signed and
witnessed living will is in his chart stipulates that he
wants no "invasive" medical procedures that would
"serve only to prolong my death." No surrogate
decision maker is available.
Should mechanical ventilation be instituted?
Advance Directives:
Case 1 Discussion
If the patient has remained awake and alert, his living will
is irrelevant to medical decision making. The potential
risks and benefits of mechanical ventilation need to be
presented to the patient. If he refuses this therapy with an
understanding of the consequences, his wishes should be
honored. If he opts for mechanical ventilation, it should be
instituted when it becomes medically necessary. The presence
of a living will or other advance directive does not obviate
the responsibility to involve a competent patient in medical
decision making.
Advance Directives:
Case 2
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| The same patient described in Case 1
presents confused and somnolent.
Should mechanical ventilation be instituted?
Advance Directives:
Case 2 Discussion
If the man has deteriorated to the point that he can
no longer communicate, his living will may be a
helpful guide to decisionmaking. The language of the
directive, however, is difficult to interpret in this
case. Pneumonia represents a potentially reversible
condition from which the patient may recover fully.
Mechanical ventilation does not serve only to
"prolong death" but offers a significant
chance to return to his previous level of functioning.
Most patients with even end-stage emphysema can be
successfully weaned from mechanical ventilation. The
intent of the directive, whether to avoid intubation
and ventilation at all costs or simply to withhold
such therapies when they are clearly futile, is not
evident. In the absence of other information to aid
the decision, mechanical ventilation should be
instituted, with the plan that it be discontinued if
it becomes evident that the patient cannot be weaned. |
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Advance Care Planning
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Advance
care planning is a process aimed at extending the rights of
competent adults to guide their medical care through periods of
decisional incapacity. The process, when accomplished
comprehensively, involves three steps: (1) thinking through one's
values and preferences, (2) talking about one's values and
preferences with others, and (3) documenting them. What follows is
a discussion of commonly asked questions related to the process of
advance care planning.
How is advance care planning different from advance
directives?
Advance care planning is the process. Advance directives
usually are the written documents that provide information about
the patient's wishes and/or her designated spokesperson. Verbal
directives may be ethically valid, but most patients and health
care providers prefer written documentation in the form of
official forms. If official forms are not used, health care
providers should document the result of their advance care
planning conversations in a medical record progress note.
What are the goals and expected outcomes of advance care
planning?
The goals of advance care planning are four-fold. In the event
of decisional incapacity, they are to:
- maximize the likelihood that medical care serves the
patients goals,
- minimize the likelihood of over- or undertreatment,
- reduce the likelihood of conflicts between family members
(and close friends) and health care providers, and
- minimize the burden of decision making on family members or
close friends.
As a health care provider who engages her patient in advance
care planning, you can expect to better understand your patient's
views about the goals of medicine, his preferred approach to end
of life care, what makes life worth living, as well as his fears
about medical interventions and loss of dignity. In addition, you
can expect to have a discussion that clarifies misunderstandings.
For example, patients often think that cardiopulmonary
resuscitation is successful 80% of the time, that mechanical
ventilation is a fancy word for nasal prongs, and that coma
patients still have the ability to enjoy life.
You can also expect to have better communication with the
patient's family members or loved ones because there should be
enhanced shared understanding of the patient's values and wishes.
Thus, you can expect to have fewer conflicts with family members
about the approach to end of life care.
Advance directives will not be the outcome of most advance care
planning. At a minimum patients should become familiar with the
concept and rationale for advance care planning. Some patients
will want to mull things over, others will want to discuss the
topic with their close friends or family and health care
providers. Fewer will be ready to sign documents and even fewer
will be interested in personalizing their advance directives so
that they are clear and contain pertinent information with
clinical relevance.
Who should I approach for advance care planning?
Unlike health promotional activities that are targeted to
select populations based on cost-effectiveness research, advance
directives and advance care planning have been recommended for
everyone. This is a limitation to the policy as recommended by the
Patient Self-Determination Act of 1991 and the Joint Accreditation
of Health Care Organizations, as it has led to including a
standard set of questions at hospital admission without much
information or understanding.
We usually think of doing advance care planning with patients
who are at higher risk for decisional incapacity. You should
consider having a conversation about this with patients with the
following conditions:
- at risk for strokes (e.g., those with hypertension)
- experiencing early dementia
- engaging in risky behavior that is associated with head
trauma and coma (e.g., motorcyclists, riding in cars without
seat belts)
- experiencing severe, recurrent psychiatric illnesses
- terminal illness
When and where should I initiate advance care planning?
It is unknown when or where advance care planning should
ideally occur. It is generally thought that this should occur
initially in the outpatient setting, and then be reviewed upon
admission to and discharge from inpatient settings. It is also
recommended that whenever there is a significant change in a
patient's social or health status, the patient's views about
advance care planning should be reviewed.
How can I raise these issues without scaring patients?
You can raise advance care planning as one of many health
promotion activities. These discussions are aimed at avoiding
harms (over- and undertreatment), and promoting benefits
(treatments tailored to the patient's goals). You should reassure
the patient that raising this issue does not mean that there is
something unspoken to worry about. You also may tell the patient
that this topic is difficult for many patients and that you will
understand if she does not want to come to any conclusions during
this discussion.
Are there some questions that I could use for advance care
planning?
When having a discussion about advance care planning, the
following questions are recommended:
- Who should speak on your behalf if you become so sick you
can't speak for yourself?
- Are there any circumstances that you've heard about through
the news or TV where you've said to yourself, "I would
never want to live like that?" If so, what are they and
why do you feel this way about them?
- Are there any life-sustaining treatments that you would not
want to receive under any circumstances? If so, what are they
and why do you feel this way about them?
- Some people have more concerns about the way they will die
or dying than death itself. Do you have any fears or concerns
about this?
- In the event that you are dying, where do you want to
receive medical care?
- Should your current preferences be strictly applied to
future situations or serve as a general guide to your family
(or loved ones)?
How should I advise a patient if she doesn't have anyone to
name as a proxy?
You should inform the patient that the best course of action
under these circumstances is to write down her wishes and give a
copy to her health care providers. She should fill out a legal
form, such as a living will, with as much detail as possible, and
then include a personalized statement to provide a better
understanding of her wishes.
How should I advise a patient if he believes that some family
members will disagree with his wishes?
The patient should be informed that the best way to prevent
disagreements is to communicate with everyone ahead of time to let
them know who has been picked as a spokesperson and what kind of
approach to medical care he wants.
As a trainee, should I do advance care planning with my
patients?
In the ideal doctor-patient situation the primary care
physician should initiate discussion when the patient is not
acutely ill. However, this often is not the case and therefore
these discussions frequently occur in the hospital setting.
Regardless of the setting, good medical practice includes having
these discussions. Thus, medical students and residents should
engage the patients they are caring for in these discussions. If
the patient has been recently diagnosed with a terminal or life
changing condition, has severe depression, demonstrates paranoid
ideation, or is suicidal, you should ask the responsible attending
physician whether this is an appropriate time to raise these
issues. Otherwise, you should initiate the discussions and request
faculty support (such as role modeling or mentoring) if needed.
You should review the framing of the discussion and the patient's
views with the attending physician responsible for the patient's
overall care.
Advance Care Planning:
Case 1
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| An elderly woman told her daughters that if
she ever ended up with dementia she wouldn't want to live
like that. Years later she developed senile dementia and her
daughters had her move into a nursing home. Although she did
not recognize family or friends, she enjoyed the company of
others and the nursing home's cat. When she stopped eating,
her daughters were asked whether she should receive a
feeding tube.
Should the daughters consider her previously stated
wishes as an advance directive?
Case 1 Discussion
The daughters should consider her previously stated wishes
as well as her current best interests. The daughters don't
know how to proceed because they did not have the advance
care planning conversation that clarified what their mother
meant when she said that she wouldn't want to live with
dementia. Was it the cognitive problems, the problems with
self care, living in an institution, or the sense that
living with dementia would not bring any joy? Without
knowing this, the daughters are unprepared to step into her
mothers shoes.
Without really knowing their mother's wishes, the
decision about a feeding tube is difficult. The daughters
may choose to approve the insertion of a feeding tube with
the proviso that future triggers could lead to its removal
or nonuse. For example, if her current quality of life
deteriorates to the point where she is no longer
experiencing joy, or if she physically tries to remove the
tube and keeping the tube in means restraining her, it may
be appropriate to remove the feeding tube at that time.
A patient who has coronary artery disease and congestive
heart failure shows his physician his advance directive that
states he wants to receive cardiopulmonary resuscitation and
other forms of life-sustaining treatment.
What should the doctor say to the patient in response to
this?
Advance Care Planning:
Case 2
|
| A patient who has coronary artery
disease and congestive heart failure shows his
physician his advance directive that states he wants
to receive cardiopulmonary resuscitation and other
forms of life-sustaining treatment.
What should the doctor say to the patient in
response to this?
Advance Care Planning:
Case 2 Discussion
The patient's expression of a preference should be
explored to understand its origins. It is possible
that the patient believes, based on television shows,
that CPR is usually effective. If this is the case,
the doctor should educate the patient about the near
futility of CPR under these circumstances. However,
the physician may learn that the patient has deeply
held beliefs that suggest that not trying to live is
tantamount to committing suicide which he perceives as
morally wrong. In this situation, the doctor might
want to ask the patient to explore this further with
the chaplain.
Advance Care Planning:
Case 3
|
| A patient tells his family that
he would never want to be "kept alive like
a vegetable".
What is meant by the term
"vegetable"?
Advance Care Planning:
Case 3 Discussion
The use of this expression is as vague as
saying, "I don't want any heroics or
extraordinary treatments" or, "Pull
the plug if I'm ever in ...." If these
types of comments in advance care planning
discussions are not clarified, they are not
helpful. For some patients being a
"vegetable" means being in a coma, for
others it means not being able to read.
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