Death With Dignity or Life With Health Care Rationing
Patricia Illingworth
Northeastern University
Harold Bursztajn
Harvard Medical School
Patricia Illingworth, Department of Philosophy and Religion, Northeastern
University; Harold Bursztajn, Department of Psychiatry, Harvard Medical
School.
Correspondence concerning this article should be addressed to Patricia
Illingworth, 361 Holmes Hall, Northeastern University, Boston, Massachusetts
02115-5000.
Psychology, Public Policy, and Law
2000, Vol. 6, No. 2, 314-321
The observations made of Oregon's Death with Dignity Act are
reassuring to the extent that they accurately state that patients who
seek relief under the Act view it as a mechanism to further their autonomy.
But, given the nature of social data gathering, including the potential
for response bias and self-validation, and the degree to which the concept
of "autonomy" is open to a broad or narrow interpretation,
one has to be careful not to accept this rinding at face value. It is
also reassuring to read that contrary to what some people have supposed,
the presence of an option to hasten death has not had a chilling effect
on the prescription of pain medication. At the same time, however, the
authors believe that it is important to ensure that these expressions
of autonomy-based reasoning are indeed valid and authentic.
In this commentary, we argue that in view of what is reported in "Observations
on the First Year of Oregon's Death With Dignity Act," it is reasonable
to conclude that Oregon's Death with Dignity Act has the potential to
serve the autonomy interests of the terminally ill by enriching opportunities
for choice for those who choose to hasten death and those who decide
not to do so. Nonetheless, in order for this potential to be fulfilled
in the current health-care context, those who implement the Act need
to ensure that the terminally ill understand how their choices are influenced
by economic, psychological, and social factors. To this end, we identify
three conditions that need to be met in order for true informed decisionmaking
to take place and suggest areas that need to be monitored if the choices
of the terminally ill are to be truly autonomous.
Before Jumping to Conclusions
The report (Coombs Lee & Werth, 2000) [l] stated that
there were many more inquiries about physician-assisted suicide (PAS)
than just those from people who opted to hasten their deaths under the
Act. Some callers did not qualify for reasons having to do with their
illness, and others took different courses of action. Apparently, for
some callers a consultation with Compassion in Dying is a component of
a deliberation process. Not all people have made up their minds in advance,
and Compassion seems to be facilitating dialogue and a thoughtful approach.
Nonetheless, because depressed and frightened people often have difficulty
changing their minds because of cognitive constriction and rigidity,
we are still concerned that the subgroup of callers who opt for PAS may
suffer from masked depression where a desperate cry for help and overwhelming
fear of death comes to be expressed as a giving up or as a counter phobic
cry for assisted suicide. [2]
According to "Observations," all 10 patients who committed suicide
took their medications at home, in the company of family, physicians,
clergy, and Compassion's volunteers and hospice staff. Coombs Lee and
Worth underscored that no patient died alone. It is worth noting, however,
that most had lived alone. The ability to provide patients with control
over the timing of their death, to enable them to surround themselves
with their loved ones, and to ensure that they are with others at the
time of death, are surely among the strengths of the Act. Still, the
troubling thought arises that perhaps at least for some, the only way
to secure the company of others when suffering is to arrange for a presuicide
family-and-friends party.
Autonomy and Choice in the Shadow of a Terminal Illness
Concerns about autonomy and self-determination figure importantly among
the reasons that patients gave for their decision to hasten death, especially
when these terms are construed broadly. Under "elements of suffering," patients
are reported to have identified "physical discomfort other than
pain," "dependence on others for personal care," "restriction
to bed or wheelchair," "loss of control over bodily function," "loss
of control," "severe pain," and "loss of autonomy" as
their primary reasons for seeking PAS. On a broad understanding of "autonomy" and
"self determination," concerns about dependence, independence,
and loss of control are really just different ways of talking about autonomy
and self-determination. It is both understandable and sad that these
autonomy issues figure so importantly in a list of "elements of
suffering."
To learn from the report that many of those who seek PAS give autonomybased
reasons for their choice confirms much of the moral raison d'Stre behind
the policy giving people the option to choose PAS. But the desire to
hasten death in order to protect one's autonomy and sense of control
is surely ironic. Because desires and preferences are not writ in stone,
one has to wonder if it is not possible to help people feel more at peace
with their fear of loss of control as well as with actual loss of control.
Nonetheless, unlike White and Callahan, we are not disturbed because only
a few people express this particular concern. First, although only a
subset of people appear sufficiently concerned with control to make use
of the Act, it would seem to be a mistake to stigmatize them for this.
The world consists of a diverse group of people with varying needs for
control. For many, an excessive concern for control would qualify as
a neurotic wish. But as Woody Allen has made clear in movie after movie,
and Sigmund Freud before him, neurosis is more the rule than the exception.
Surely we do not want to be in a position of choosing among neuroses.
In principle, Oregon's Death with Dignity Act simply leaves the options
open to those who choose to avail themselves of it.
Moreover, the people who choose to die under the Act are not the only
ones to benefit from it. As Batavia underscores in his concluding remarks, "every
person dying from a terminal illness in Oregon benefited from the law." [3]
The value of choice per se should not be underestimated. One does not
have to choose an option in order to benefit from having it. Human beings
thrive on choice. [4] John Stuart Mill, philosopher
and psychologist, understood this point. Consider the following: [5]
The human faculties of perception, judgment, discriminative
feeling, mental activity, and even moral preference are exercised only
in making a choice . . . He who lets the world choose his plan of life
for him has no need of any other faculty from the ape-like one of imitation.
He who chooses his plan for himself employs all his faculties. He must
use observation to see, reasoning and judgment to foresee,... and when
he has decided, firmness and self-control to hold to his deliberate decision.
Mill's point is relevant to the case at hand. In the face of a choice
about whether to die with assistance (by way of the Act) or to die without
assistance, the terminally ill must now think about what best suits them
as individuals; what, in the parlance of "autonomy," is authentic.
Thus, the Act will benefit both those who choose to die with assistance
as well as those who choose to die without it because it enables both
groups to make a choice. People who choose not to die with physician
assistance may feel greater comfort with their decision because they
have made a choice. As Victor Frankl, in his "Man's Search for Meaning," [6]
reiterates: even in the face of almost certain death, choice is possible,
and where there is choice, there can be meaning and hope.
Second, although only a small number of people chose to die under the
Act and specifically identified "control" as the reason for
doing so, it cannot be presumed that their wish to do so is necessarily
excessive. As the decision to control the time of death becomes easier
for people to make, the group that makes it may become larger. Whether
a desire is viewed as excessive or not is relative to the size of the
class of people who make it. We can not really tell what the size of
that class will be until the possibility of choosing PAS is widely available,
public, and stigma free.
Concerns about autonomy surfaced again with respect to the four patients
who indicated that an element of their suffering was the burden they
would cause to others during an extended dying process. It is unclear
how much weight should be given to patients' desires to protect their
loved ones from the burden of caring for them, especially once their
loved ones have indicated that they do not consider such care a burden.
Arguably, the wish to protect others in this way is often consistent
with people's overall conception of themselves and in this way is authentic.
Parents, for example, may have always been the caretaker and may find
that having their children care for them is inconsistent with their conception
of self. But it can also indicate a depressive and even paranoid view
of what one's dying will mean to others. Self-centered parents, accustomed
to "being boss" and dominating their children, may, when depressed,
fear that they will be treated as badly as they have cared for their
children.
Physicians who fail to be fully open and honest about their beliefs and
values concerning hastened death, and who either blindly refuse to participate
or conversely encourage suicide can add to the patient's distress. The
authors tell us of a case in which the patient had requested assisted
death, had been refused, and had been promised a quiet and peaceful death
but had been seriously disappointed. Although we are not given enough
information to do much but speculate about what was going through the
physician's mind, it is likely that the physician actually believed that
he or she could manage the patient's symptoms. The question is, "did
he allow his values and moral beliefs to lead the doctor into self-deception
about what exactly the probabilities were that the physician could supply
an easy death and that there was no alternative?" This is an area
that is ripe for self-deception in both directions. Physicians who are
overburdened and busy, frightened of running afoul of state or federal
drug enforcement agencies, or favor PAS and are overly concerned about
scarce-medical-resource use at the end of life, may be more prone to
read their preferences into patients' wishes. The Act does have some
built-in monitoring mechanisms to ensure that the physician's wish to
hasten death is not determinative. This is important because overall
we are concerned that nonreversible decisions that affect the patient
are not made without the patient's full consent. Of course, physicians
who object to PAS may find that they are more likely to be overly optimistic
about their ability to provide a comfortable life before death. Because
people only die once, there is a very real sense that whatever is done
is always irreversible.
The requirement of a mental health evaluation can be a mechanism to ensure
autonomy, but if applied mechanically, or in a perfunctory manner, it
can also be an invasion or a neglect of individual autonomy, at a time
when patients are sensitive to issues of autonomy and loss of control.
Any requirement that ultimately makes psychiatrists gatekeepers is problematic
because for many people, including some psychiatrists and psychologists,
the decision to hasten the end of life can be prima facie evidence of
a mental impairment. Moreover, it is questionable whether psychologists
and psychiatrists have the requisite knowledge to detect subtle but significant
sleep deprivation, medication, or metabolic compromises of mental function.
Without a comprehensive capacity evaluation, however, many primary care
or attending physicians will be insensitive to such subtle, but significant,
impairments of capacity and will never suspect that a forensic consultation
is needed or will be too concerned that managed care will not approve
a forensic consultation. Rather than face rejection, they simply will
not ask for such a consultation.
Given the evidence, it is too early to conclude that vulnerable members
of the community—the socioeconomically disadvantaged, racial minorities,
the disabled, and women—will not be disproportionately represented. For
example, many of the concerns related to the disabled involve long-term
effects of internalizing certain attitudes about the disabled. [7]
One year is not enough time for any of these social attitudes to have
been internalized and, in turn, have a visible effect. Moreover, one
wonders about the definition of "disability" and whether it
may not be too restricted. [8]
The fact that the overwhelming numbers of those requesting suicide assistance
were living alone raises the question as to why they were alone. Certainly
social impairment and withdrawal are among the early signs of disabling
depression.
What ought to be made of the fact that palliative care improved after
a request for assisted death had been made? First of all, one wonders
what the evidence for this is. Is it simply patient avowals? Second,
although the natural assumption is that once a request for hastened death
has been made, caretakers feel freer to use pain medications that put
life at risk, there may be other explanations for the change. In the
extreme, it is also possible that caretakers, annoyed that patients are
not making use of the option for hastened death, are less than fully
helpful. A more benign explanation is that the request for assisted suicide
drops the veil of denial and ignorance from the often all-too-busy health
care providers and leads to more attention and effective response to
patients' suffering (i.e., "the squeaky wheel gets the grease").
By the same token, given the climate of physician intimidation by state
and federal bureaucracy regarding the prescription of controlled substances,
a patient's request for medication to hasten death may embolden otherwise
frightened physicians to prescribe needed medication for anxiety and
panic relief.
We have a deep wish to share the optimism proffered by proponents of the
Oregon assisted-suicide model. However, given what is at stake here,
the initial data collected by the proponents is to be viewed with a critical
eye. Our concern is not simply that the case numbers are small and pose
a potential selection bias. The finding that fear of loss of control
is the avowed reason for considering hastened death by terminally ill
patients is ambiguous. It raises the question of whether many patients'
stated preference for assistance in suicide is actually a cry for help.
In other words, to the extent that this request takes the form of help
in hastening death, an important corollary is whether such a solution
is the result of subtle but significant impairment and restriction due
to psychiatric disorders, social conditions, and managed-care influence
on clinical practice.
Even in everyday life, relatively healthy individuals may manifest in
some contexts an overvalued and fixed belief bordering on delusions such
as perfectionism, omnipotence, or invulnerability. [9]
With serious medical illness, both depressive and posttraumatic disorders
are common and share as hallmark symptoms helplessness and fear of loss
of control. [10] Whatever the external and bodily function
reality, there are often biopsychosocial solutions to such fears of which
patients are unaware, either because they have not been informed or because
they are prevented from integrating such information by the restrictions
on their own ability to communicate as well as the helplessness and shame
they are experiencing. We are concerned that Compassion is unaware of
these issues and therefore unable to include such information in the
dialogue with patients. In the absence of social support, and with cost-based
restrictions on meaningful doctorpatient communication ranging from time
crunches to preapproval for forensic consultation, real but treatable
helplessness, silent fear, and shame become all too often overlooked
and overwhelming.
Moreover, PAS represents a certain outcome. It may be irresistible to
people when they are faced with a painful and terminal, yet uncertain,
death. The more certain dying patients can be that they will be assisted
by their physicians in facing death by being comforted and will not be
abandoned by a profit-seeking medical system, the less they may have
to rely on the certainty associated with PAS. Thus autonomy and a sense
a control can be achieved for some people in other ways—namely, by ensuring
certainty through other mechanisms. It may be fruitful to explore the
psychological connection between sharing uncertainty and autonomy. Perhaps
the need to control death through PAS is greatest where uncertainty is
high and the patient is alone to bear it. [11]
The Informed Consent Process in the Era of Managed Care
When confronted with the uncertainty of life's finitude and helplessness,
and facing the certainty of death, many patients do not want to be alone.
The sharing of life's uncertainty in a mutually respectful and supportive
relationship may be an antidote to an otherwise unbearable aloneness.
The informed consent process for terminal patients can be of some help
in establishing a trusting and supportive frame for exploration. [12]
In order for such a process to work, it has to include three elements.
First, there must be a competent decisionmaker. Given the high prevalence
of persons living alone among those requesting assisted suicide, together
with the difficulty of detecting depression in terminal-care medical
settings, there is a likelihood that this subset of patients are covertly
depressed. The masking of depressive and panic symptoms, which can subtly,
but significantly, impair cognitive faculties (such as the ability to
consider alternatives and to weigh the risks and benefits of being able
to extend meaningful life) is well-recognized. This masking of depressive
symptoms can occur because of the withdrawal and dissociation that often
accompanies trauma and depression itself, because of undertreated pain
and fear that often accompanies terminal illness, or because of the euphoric
or dulling side-effects of pain medications. Such patient denial and
dissociation of affect when frightened, alone, and facing death is increasingly
likely to be experienced, unrecognized, and untreated when patients are
offered relatively short-term primary care doctor-patient relationships
with little or no access to psychodynamically informed psychiatric consultation.
Moreover, caregiver reactions in terminal care are inherently vulnerable
to unrecognized, but significant, perceptual biases such as an overidentification
with a patient's occult depressive states extending to overwhelming yet
hidden dread and horror. Such overidentification can take the form of
glib rationalization in the form of largely rhetorical questions such
as "is it not natural to feel depressed if you are alone and dying," [13]
and lead to a premature resignation from the responsibility of caring
for the patient by providing meaningful biopsychosocial support.
Second, there must be an informed decisionmaker. The above considerations,
together with a variety of cost-based restrictions on care and cost and
governmental restrictions on prescribing practices; intimidation of health-care
providers and institutions by economic credentialing and deselecting
of those individuals and institutional providers who engage in burdensome
and often futile appeals; as well as governmental prosecution of physicians
prescribing anxiety and painrelieving substances, result in physicians
developing the habit of abandoning suffering patients. Because consistency
and habit guide practice all the more in an increasingly time-squeezed
clinical milieu, it is today likely that even when a patient has traditional
fee-for-service insurance, the attitudes and habits fostered by managed
care will restrict the clinician in what treatment alternatives are communicated
to the patient. A deceptive and demoralizing silence, a kind of de facto "gag
clause" as to relevant alternatives, is most often unrecognized,
or defensively rationalized as "not wanting to disappoint the patient" or "hanging
crepe." By the same token, once some physicians feel there is nothing
more they can do to ease the patient's suffering, a kind of self-fulfilling
prophesy of helplessness together with the difficulty of obtaining managed-care
approval for consultation can prevent meaningful psychiatric referral.
Rather, it takes a patient wanting to commit suicide to bring up a too
little and too late referral.
Third, there must .be a free decisionmaker. Patients who are ill and alone
are vulnerable to undue influence and coercion. In the managed-care era,
where the patient's interest in extending meaningful life may clash with
social and institutional provider interests, the "no exit" ambiance
of ignored suffering may lead patients to feel that the only relief is
a final exit in compliance with their caregivers unstated but reasonably
inferred wishes. Such a preference, a variation of the "Stockholm
Syndrome," often seen in de facto captive situations involves desperate
patients overidentifying with the preferences of those on whom their
lives depend rather than acting on their own authentic values. Under
such conditions, combined with the covert coercion by psychically and
financially pressured caregivers and families, the decision to hasten
death cannot be said to be a voluntary or free choice.
Concluding Questions
Each of the above conditions for meaningful informed consent in providing
an assisted-suicide alternative for terminally ill patients is, in principle,
realizable. [14] A minimum assessment of patients requesting
assistance with suicide needs to include an independent psychodynamically
informed assessment of capacity untainted by potential economic conflicts
of interest and value bias for or against hastening death. Such an assessment
must also be extended to include economicinformed consent of the patient
as to material provider and institutional conflicts of interests, and
an ethically and legally informed assessment of the caring context to
rule out undue managed-care-based provider or institutional influence.
In the event that patients are adamantly against being initially seen
by a psychologist or a psychiatrist, meeting with a psychodynamically
informed attorney or bioethicist may also be helpful. Trained to be impartial
and neutral With respect to their own values and with a psychodynamically
informed mental health consultant for support, an attorney or bioethicist
may also be able to make contact with a frightened, shame sensitive,
and defensively depressed or illness-traumatized patient.
Finally, in the name of autonomy, self-determination, and respect for
persons, the language associated with hastening death should be free
from all spin. [15] To identify PAS as "Death
with Dignity" can be interpreted to imply that other kinds of death
(slow, painful, and uncertain) are undignified. Surely, what makes death
dignified is not the presence or absence of control over death, but the
attitudes of the patients themselves in both situations. Some patients,
regardless of controlling the time and manner of their death, will be
bitter, angry, and resentful that they are dying, whereas other patients,
with little external control over time and manner, may experience internal
control and end with grace. In view of the potential for economic gain
from PAS, it is important that any language associated with it be impartial
and neutral, thus helping the patient to make a truly autonomous decision.
Such decisions begin not with the conclusion, but with questions such
as "What does it mean to make an autonomous decision here and how?"
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