discussion of the use of advance directives in health care deals very often
with end of life issues and focuses on matters concerning the continuance or
discontinuance of life sustaining treatments and/or life supporting
technology. As the use of advance
directives for psychiatric/mental health care becomes more widespread, the
respect for the wishes of those who have completed these psychiatric advance
directives (PADs) as well as protocols for overriding their directives will
need to be discussed and explored. On
the positive side, PADs serve to promote patient involvement in treatment, to
expedite psychiatric care and to reduce coercive crisis interventions. On the other hand, as with other health care
directives, unless they are carefully constructed with competent involvement of
the author of the directive, they can invite a host of legal and ethical
challenges in their implementation. A
study of the limited but growing use of PADs will help to inform this evolving
contribution to self-determination and autonomy in the treatment of mental
Patient Autonomy and Promoting Recovery
advance care directives are an emerging method of treatment planning designed
to improve treatment outcomes and enhance the autonomy of mental health
patients (Srebnik, 2006). They are
analogous to but somewhat different from general health care directives in
several significant ways. The two types
of directives are both based on the same concept
– care planning for a time when an individual may lack the capacity to make
treatment decisions for him/herself.
Their content, however, is
quite different. General health care
directives attempt to guarantee, for those who execute them, a good death,
while psychiatric health care directives (PADs) endeavor to secure, for a more
specific population, a good life (Backlar, 1997).
A general health care directive
deals with terminal/end of life conditions and most individuals will have the
occasion to access a general health care advance directive only once. In the case of PADs, however, it is often the
individual’s experience of one mental health crisis treatment that prompts
him/her to communicate preferences and directives for anticipated future crises
Beginning with California in 1976,
all states have subsequently enacted advance directive statutes of some sort
including living wills, durable powers of attorney or both (Swanson,
2006). In 1990, the federal Patient
Self-Determination Act (PDSA) was enacted to promote the use of these written
advance directives. Under the provisions
of this law, health care facilities receiving federal funds are required to
inform patients of their rights to prepare an advance directive, to inquire
about and document whether patients have executed a directive, to ensure
compliance with state laws and to educate health care providers regarding these
legal instruments. This reflects a
commitment to value a patient’s autonomy as a part of the right to personal
liberty (Szasz, 1998).
Psychiatric advance directives
evolved from the more general advance care directives (Harvard, 2007) and
twenty-five states have now enacted PAD statutes (Swartz, 2007). Proponents of
PADs envision these documents encouraging collaboration between the patient and
the mental health care provider and facilitating discussions regarding plans
for crisis treatment. They also believe
that an individual’s present access to providers of choice for a projected time
of crisis may enhance the subject’s treatment adherence and his therapeutic
confidence (Kim, 2007).
A concern regarding advance
directives, especially PADs, is that the instructions of the PAD are not
and that they may be overridden (Srebnik, 2007). Ethical issues arise when the existing
instructions are ignored or overridden and when patient autonomy is not held in
highest regard. This is illustrated in
the case which follows.
Hargrave is a resident of Vermont who suffers from paranoid schizophrenia, for
which she has been hospitalized multiple times since 1995 in the Vermont State
Hospital. While hospitalized in 1997,
she was twice the subject of proceedings for involuntary medication; the
earlier proceeding yielded a finding that Hargrave was competent to refuse
medication, but the latter resulted in a finding that she was incompetent to do
so. Upon the second finding, she was
administered psychiatric medication over her objection, in a non-emergency
April 14, 1999, Nancy Hargrave executed a Durable Power of Attorney (DPOA)
designating a guardian in the event of future incapacity and refusing the
administration of “any and all anti-psychotic, neuroleptic, psychotropic or
psychoactive medications,” and electroconvulsive therapy.[ii]
Vermont law, an adult may execute a DPOA which allows him to appoint a guardian
in the event of his incapacity and/or to articulate preferences for or
limitations to treatment. Prior to 1998,
Vermont statutes provided two mechanisms for overriding DPOA’s: an individual could explicitly revoke his own
previously executed DPOA, or a third party could petition the probate court to
suspend an individual’s DPOA in conjunction with that court’s appointment of a
guardian. This override was contingent
upon a ruling from the Vermont Human Services Board. In 1998, Vermont legislature passed Act 114
which established a third procedure for overriding DPOAs of certain patients
who are imprisoned or committed. Under
Act 114, health care providers may petition to involuntarily medicate
imprisoned or committed persons judged mentally ill. When the proposed medication would violate a
person’s validly executed DPOA, a 45-day evaluation period would be established
to “test” the provisions of the DPOA. If
the court decided at the end of this period that there was no significant
clinical improvement in his or her mental state, then the court could decide to
medicate the patient involuntarily with no further regard for his DPOA.
the execution of her DPOA, Nancy Hargrave challenged the legality of Vermont
Act 114 on the grounds that the provisions for abrogation of DPOAs executed by
patients who have been committed violate Title II of the ADA as discriminatory
towards those with mental illness. The
decision of the court was that Vermont Act 114 is discriminatory under the ADA
for distinguishing action on the basis of mental illness (Hargrave v. Vermont,
and Ethical Issues
The decision in the case, Hargrave
v. Vermont, establishes that the state cannot exclude involuntarily committed
psychiatric patients from the statutory provisions of its medical advance directives
legislation (Appelbaum, 2003) which prior to Act 114 and now again provides
that the only means to override a validly constructed DPOA are revocation by
the subject who created the directive or a court order in conjunction with the
appointment of a guardian (Hargrave, 2003).
At the present time, this law applies only in Vermont; in other states,
the law generally allows physicians to override psychiatric advance directives
when in their professional judgment it is necessary to do so – for example when
a patient is involuntarily committed to a facility or when a patient’s wishes
are in conflict with what may be deemed the current standard of care. The issues of when physicians and other
clinicians can supersede a PAD and when a patient can revoke one remain the two
most controversial issues regarding psychiatric advance directives (Harvard,
The results of a recent survey
indicate that 66 to 77 percent of over 1,000 mental health consumers from five
U.S. cities indicated that they would complete PADs if they were given the
opportunity and assistance to do so. The extent to which clinicians can
override PADs, the situations in which they can override them, their reasons
for doing so, and how they communicate these reasons to patients and their family
members, have the potential either to significantly undermine PADs or to
actually help to implement them more broadly (Swanson, 2006a).
In January, 2005, Pennsylvania
enacted Act 194, a mental health advance directive and powers of attorney
law. This law is consistent with most
other similar state laws enacted through the 1990’s. The PA law allows competent individuals to
specify their mental health treatment wishes before becoming incapacitated and
to appoint an agent to carry out their wishes during future periods of
incapacity. The law also reinforces the
Patient Self-Determination Act of 1990 by requiring facilities and providers of
mental health care to ask patients upon admission whether they have a PAD and
to inform all patients about the availability of PADs as part of discharge
planning. Treatment facilities are also
required to place a copy of the mental health advance directive in the
patient’s mental health record (Swanson, 2006a).
Pennsylvania Act 194 contains three
specific sections devoted to guaranteeing that physicians may override PADs
with few if any consequences. The law
states, first, that it should not be viewed to affect in any way the ability to
admit a patient to a facility under either the voluntary or involuntary commitment
provisions of the Mental Health Procedures Act.
Second, the compliance section contains a clause allowing a physician
who cannot in good conscience comply with the instructions of an appointed
agent because the instructions are contrary to accepted clinical practice and
medical standards to refuse to comply so long as he or she makes every
reasonable effort to assist in the transfer of the patient to another provider
who is willing to comply. Third, the law
states that a physician who acts in good faith in overriding an advance
directive may not be subject to criminal or civil liability or be disciplined
for unprofessional conduct for refusing to comply with a PAD when in the
judgment of the provider the provisions of the PAD violate accepted clinical
standards of care (Mental Health Declarations Act, 2004).
The Pennsylvania law is typical of
other state laws and so the question arises, does the ease with which
physicians can override the psychiatric advance directives of their patients
promote patient autonomy at all; do they actually reinforce the physician’s
autonomy? Before addressing this
question it is useful to review the results of a statewide survey of 164
psychiatrists in North Carolina where there is evidence of sharp division of
opinion on the question of whether physicians should follow or override PADs
that refuse treatment. Forty-seven percent of psychiatrists surveyed indicated
that they would override a valid, competently-executed PAD that refused
hospitalization and medication in the case of a non-violent psychotic patient
in a hospital emergency room; they would use the discretion allowed by state
law and involuntarily admit the patient.
The other 53% of psychiatrists surveyed indicated that they would follow the directives of the PAD
and not admit the patient (Swanson, McCrary, 2006b). In the opinion of Swanson et al., many
clinicians would consider the risk of discharging an acutely psychotic patient
without treatment far too great against the benefit of upholding his
autonomy: “Releasing the patient would
seem to require quite strong support for the value of patient autonomy over
beneficent paternalism in a situation where these principles conflict. Such a
robust endorsement of patient autonomy is surely not universal among physicians
and may be the exception rather than the rule.” (Swanson, McCrary, 2006b).
And what of the other 53% survey
respondents who would honor the PAD, would follow the patient’s documented
wishes, and would not admit the patient? The profile of these psychiatrists who
would honor a PAD refusal of hospitalization and medication for a psychotic
patient are “(1) less likely [than the admitting psychiatrists] to actually
work in a hospital emergency department or crises center; (2) less concerned
about patient’s lack of insight into their illness or the potential for patient
violence; (3) less legally defensive; and (4) less inclined to see coercion as
intrinsically necessary given high-quality services, while being more sanguine
about community-based alternatives to hospitalization for such patients”
(Swanson, McCrary, 2006).
In considering when, if ever, a
patient’s advance directive should not be honored, Dan W. Brock first raises
questions about whether an advance directive always accurately reflects what a
patient would have wanted. Since advance
directives typically require individuals to predict what they would want well
in advance of the use of the directives in treatment decision making,
directives may not accurately reflect what a patient would want in
contemporaneous circumstances. This may
be further reinforced when directives are written in vague language making it
unclear what a patient actually wants. A
second case would be when current interests of a patient may be significantly
different from conditions when the advance directive was created, i.e. the
patient has suffered such severe cognitive changes that there are doubts that
the personal identity of the person who executed the directive and the present
person are significantly the same. Finally,
Brock offers as a third category for when advance directives may be overridden,
situations in which the interests of others may warrant it. These “others” could be family members,
physicians or society in general (Brock, 1991)..
Brock concludes his commentary
rejecting the notion that advance directives should always be binding. He proposes that institutional and judicial
procedures be established as safeguards to reduce the risk to patient autonomy
to “tolerable levels.” He suggests that these procedures may require going to
court in some cases and consulting with ethics committees in others. He holds that advance directives should be
binding in the vast majority of cases and should be set aside only after
careful consideration and by following procedures adequate to limit abuse (Brock, 1991).
Returning to Swanson, McCrary et
al., they apply the three cases of Brock specifically to psychiatric advance
directives.[iii] They hold that severe and persistent mental
illness can impair a person’s baseline ability to make and communicate reliable
decisions about their health care but that this would be truer for medical
situations than for psychiatric ones.
For patients with a history of psychiatric treatment, PADs may reflect
treatment preferences quite accurately to the extent that these preferences
have been shaped by previous experiences with the treatments in question. A patient who has been repeatedly
hospitalized and treated medically for bipolar disorder would bring much
knowledge, personal experience and some authority to advance directives
relating to future treatment for this condition. A contrasting situation would be if the
patient were including in a PAD directives refusing treatment of which he/she has
no knowledge, such as electroconvulsive therapy (ECT). Here a psychiatrist, familiar with the use of
ECT in treating a condition such as life-threatening depression, may want to
override a directive refusing a course of treatment that, in the opinion of the
clinician, offers perhaps the best and only option left to the patient
(Swanson, McCrary, 2006a). For a highly
controversial treatment such as ECT surrounded by other uncertainties – the
patient’s informed consent and best interest – there still seems to be a
question about the override of a PAD directive.
In Brock’s second scenario, a change
in the personal identity of the patient through the course of a chronic mental
disorder, Swanson and McCrary et al. believe that a PAD may be susceptible to
override. Cognitive impairments are
associated with major psychopathology and these impairments may be
permanent. In such cases, if the
“identity” of the patient has been altered, then his/her agency with respect to
the advance directive could certainly be called into question as well. Some ethicists have opposed PADs altogether
because of this potential conflict between the prior and present “self” and
between patient autonomy and safety and survival issues (Swanson , McCrary,
Brock’s third scenario deals with
instances where it is questioned whether the interests of others justify not
honoring advance directives. Some
“interests of others” that could come into play here are those of family,
physicians and/or society in general. This could be the case when physicians
are “legally defensive” and the override of a PAD directive becomes a strategy
to guard against legal liability. Cases
of involuntary commitment also fall under this category of promoting the
interests of others with every state jurisdiction allowing a PAD override in
such circumstances. Swanson and McCrary et al. suggest under this category,
situations where physicians may assume some responsibility for past ineffective
treatment and who wish to rectify or have a second chance to improve on past
situations. An example of such a
scenario would be overriding an existing PAD directive to refuse medication in
order to prescribe newer and more effective drugs that minimize some of the
unpleasant and dangerous side effects of drugs used with the patient in the
past. The psychiatrist might reason that mental health care professionals or
the system itself are partly responsible for the current state of the patient,
that the patient’s medication refusal is misinformed, and that therefore under
these circumstances it would be irresponsible
or even negligent to honor a patient’s directive that refuses all
medication (Swanson, McCrary, 2006).
Up to this point we have been
considering the override of PADs by persons other than the patient. A related
issue is the revocation of provisions of an advance directive by the patient/
agent him/herself. By definition and as presented in all instructive material
with respect to advance directives, the competent adult may appoint an agent
and may update, change or revoke an advance directive, general or psychiatric,
at any given time and as often as desired in accordance with the applicable
state law (Harvard, 2007).
A discussion of advance directives
would not be complete without a consideration of the so-called “Ulysses
Contract” or “self-binding contract.”
The name Ulysses refers to Homer’s example of Ulysses instructing his
crew to bind him to the mast of his ship before they sailed past the
irresistible sirens and to ignore his requests for release. Thus he was able to enjoy the beautiful singing
of the sirens without suffering the disastrous results that would normally have
followed (Widdershoven, 2001). With
respect to health care directives what is fundamental is that an individual
anticipates how he is likely to act at some future time and, being dissatisfied
with the prospect of that action, makes plans in the present to try to increase
the likelihood that he will decide to act (or be treated) in some other way in
the future time (Davis, 2008). John
Davis presents a thorough analysis of the concept of pre-commitment to
treatment through Ulysses Contracts and proposes the Diachronic Respect
Principle as a guide for deciding when it would be consistent with the agent’s
wishes to supersede his advance directive.
This principle states: “To actively respect an agent’s autonomy in cases
of parity pre-commitment, act so that the circumstances of the agent’s life are
consistent with his or her concurrent intentions over the longest period of
time, qualified by reference to the intensity of the desires and the severity
of the conflict. This justification is
diachronic and prospective, rather than synchronic and retrospective[iv]”
Thus far in our consideration of
PADs, we have focused on the value of patient autonomy and seen how this value
may be compromised when the directives of PADs are too easily overruled by
others or by the patient him/herself. An
additional goal of the use of PADs is the positive contribution they can make
in supporting the mental health improvement and recovery of the patient. When used in time of crises, PADs have the
potential not only to direct and inform the crises service, but to shift the
role of the patient to that of expert regarding his/her own care, thereby
increasing both self-determination and respect.
Kim reports from a qualitative study of individuals who had created PADs
the experience of one individual upon presenting his/her PAD at the hospital:
“The doctor didn’t treat me like a nut case because some hospitals do. You know
what the doctor said to me? [He said,] ‘You’ve got rights and it’s great that
you know you have them’” (Scheyett, 2007).
The very act of creating a PAD has
the potential of supporting recovery by building alliances between individuals
and their case managers, thus increasing perceptions of the patient that
treatment needs were being met, and by creating a sense of control over one’s
treatment thus increasing understanding of and compliance with treatment plans
National Consensus Conference on Mental Health Recovery and Mental Health
System Transformation identifies many ways in which PADs support the
fundamental components of recovery. PADs
are tailored to the specific needs of individual; they provide individuals with
an opportunity to take responsibility for their own care during crises; they
use past crises as an opportunity for learning, helping the patient to identify
preventive actions, coping skills and self-management techniques to be used in
the future; they empower the individual while decreasing the authority of the
traditional provider role. They focus on
respect, hope, peer support and responsibility, all essential components of
mental health recovery (Center for Mental Health Services, 2006). PADs also support better medication adherence
and thus effectiveness, fewer and shorter hospitalizations, less undesired
treatment, early recognition of a crisis, and the availability of surrogate
decision-making by a trusted person. In
addition to the benefits for the patient, PADs provide a patient’s family with
knowledge and awareness of the patient’s own wishes and therefore a greater
ability to support recovery (Swanson, 2000).
To increase the likelihood that care
will be consistent with advance directives and thus promote recovery, having a
surrogate decision maker is desirable.
Only about half the persons who complete PADs appoint a surrogate
decision maker and surrogates are involved in only about 31% of crisis events
in which directives are accessed (Srebnik, 2007). There is no data available that provides an
insight into this lack of involvement of surrogates. Perhaps it is a desire on the part of the
patient to maintain control or perhaps a hesitation on the part of the
potential surrogate to involve himself in circumstances that could become tense
and friends are generally the best choice for substitute agents, but in their
absence, local support groups often have trained advocates to assist in this
capacity. Adherence to a patient’s
treatment wishes is more likely when a PAD is made available to care-givers and
it is more likely to be made available when a surrogate is involved (Srebnik,
The use of advance directives and
the underlying premise of the Hargrave v. Vermont case are about the rights of
individuals to care for themselves and to exercise free will in the direction
of that process. As noted in the
introduction, advance care directives are the efforts of individuals to take
good or proper care of themselves both in living and in dying. General health care advance directives which
are more commonly known and invoked than psychiatric advance directives
represent the efforts of individuals to assure that their existence and
well-being will unfold according to their most deeply held beliefs about life,
beyond the time when they are competent to direct this unfolding and as they
approach the end of life. Psychiatric
advance directives usually take the insights and wisdom surrounding and gained
from painful, often dehumanizing experiences when the individual is powerless
to control the situation, applying them to promote a better quality of handling
these life experiences should they recur.
And so, individuals record their desires and ask others to implement
their desires for them and we have objects known as living wills, advance
directives and durable powers of attorney for healthcare.
In this paper we have returned quite
frequently to the concept of autonomy or self determination as a value and a
goal. In caring for oneself physically
and psychologically, there are all manner of challenges to autonomy and
self-determination and there are legitimate boundaries to them – I cannot do
anything I want, whenever I want without respect for the rights of others.
the case of Hargrave v. Vermont, Nancy Hargrave’s legitimate right to refuse
medication was honored once by virtue of the determination that she was
competent to decide for herself, but in a second instance, medication was
forced upon her because her autonomy was overruled by her mental
incompetence. Legitimate authority of
the state stepped in and attempted to choose her best interests for her – we
would hope with great respect for the dignity of her person and only to protect
her from her own potentially poor choices in her state of diminished capacity.
to the mental health hospitalizations, Nancy executes a DPOA in which she
refuses all anti-psychotic, neuroleptic, psychotropic or psychoactive
medications as well as electroconvulsive therapy in her future mental health
care and she appoints a guardian to act on her behalf. She then legally challenges a recent law that
would add a third mechanism to two existing provisions for overriding DPOAs. The court ruled in her favor thus restoring a
more restrictive protocol for superseding a person’s advance directive in
Vermont, one of the most restrictive in the country. he
decision of the state of Vermont establishes
strict standards, respectful of the dignity and autonomy of the individual, for
supporting the right of self-determination in general and mental health
care. It would seem that the existing
statutes are sufficiently broad to protect both the individual and society in
general from harm that could occur.
Additionally, the statute in question, Act 114, was directed towards a
rather small, restricted class, which made it discriminatory to those in the
class – those who were committed by virtue of mental illness.
the right to make one’s own health care decisions is a form of self-preservation,
a natural inclination of man. The
boundaries towards which this right must be held responsible are harm to self
and harm to others. In some of the
subsequent material in this paper, the individual’s autonomy and self
determination seem to be in jeopardy. In
the survey of the North Carolina physicians, it is alarming to me that those
surveyed were split almost evenly on whether to follow the directives of a PAD
to refuse medication and hospitalization for a non-violent psychotic patient in
the emergency room.
support for the completion of PADs among mental health consumers in a recent
survey – 66% to 77% – is strong. PADs are promoted as a means to preserve
autonomy and self-determination in the event of mental health incapacity. hese
directives have value in their composition as well as in their
application. Even if the owner of a PAD
never had to invoke this document, the very process of creating one has
advantages; these would include collaboration with clinicians in determining
future care choices and involvement of family in care evaluation and planning
to name two.
general health care directives are often created with the help of an attorney,
psychiatric advance directives are very often completed in collaboration with
health care clinicians and often with family members as well. The participation of all these parties
towards the responsible treatment planning for the subject of the PAD promotes
the individual’s autonomy and empowerment in managing treatment to progressing
towards recovery. If mental health
consumers thought that mental health providers were willing to set aside the
provisions of the advance directives lightly – as there is evidence that some
do – perhaps this valuable tool would receive less support.
Brock and Swanson, McCrary et al. provide a clear and instructive analysis of
situations in which advance directives might be “trumped.” This type of thorough analysis is what would
be hoped to ensue in any consideration of the override of advance
directives. Finally, Davis’ analysis and
conclusions in the consideration of
Ulysses Contracts is an excellent example of seeking the best interest
of the patient when confronted with an ethically challenging situation that
might call for setting aside an individual’s advance directives to actually
promote not only his/her best interests but his/her prospective desires.
advance directives have the potential to promote mental health consumers’
self-determination and autonomy. They
are valuable tools for assisting mental health professionals in providing
effective, informed, acceptable and appropriate treatment to persons with
serious mental illness. While their use
is presently somewhat limited, their application could expand if they are
viewed with respect by all who will handle them within the mental health care
community. These advance directives need
to be respected as extensions of the persons who created them. They should not
be easily overturned, nor should they be legalistically applied without regard
for the wishes and hopes of the person who created them and the community in
which they interact. As PADs become
better understood, more commonly promoted and more widely used, a hope of many
is that their directives would be seriously implemented and only cautiously
abrogated, and that they could serve to promote the dignity of all persons to a
positive degree beyond which their subjects might hope or imagine
[i] A recent study found that physician
decisions were inconsistent with advance directive instructions 65% of the
time. Findings also showed that only 50%
of physicians accurately reported patients’ DNR instructions (Srebnik, 2007).
[ii] Nancy Hargrave was not hospitalized
on May 14, 1999, when she executed her DPOA.
Nothing suggests that she did not meet Vermont’s statutory requirements
for the valid execution of a DPOA.
[iii] In 1991, when Dan Brock offered
these three scenarios, PADs had been proposed but not implemented on a large
scale. The examples given by Brock deal
mostly with medical situations.
[iv] Davis believes that “we respect an
agent’s autonomy either by not interfering with his or her efforts to shape
those circumstances over time or by assisting those efforts.” We should “respect the agent’s autonomy not retrospectively – by reference to what
he or she used to want – but prospectively
– by reference to whether the outcome will be consistent with the agent’s
autonomous choice – and not merely synchronically
– whether the agent gets what he or she wants at the time one acts or refrains from acting – but diachronically – whether what happens to the agent over time
is consistent with what that agent wants during
that time” (Davis 2008).
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