This commissioned working paper was discussed at
the Council's December 2004
meeting. The views expressed here do not represent the official views
of the Council or of the United States Government. |
for Dementia Patients: The Search for Normative Boundaries
Issues Summary for
The President's Council on Bioethics
Because scholars and officials have focused on advance directives
to resolve future treatment questions, they have neglected the majority
of actual treatment dilemmas. Relatively few patients have directives.
Most of the directives that do exist simply name a preferred proxy
decision-maker. Directives with instructions are usually quite
general, supplying little guidance to those at the bedside. Yet
the standards that should govern care of patients without clear
directives remain relatively undeveloped.
When advance directives are absent or imprecise, two standards
guide patient care. One is called the substituted judgment standard.2
This standard instructs physicians and families to make the treatment
decision that the patient would make if “miraculously lucid for
an interval (not altering the existing prognosis of the condition
to which she would soon return) and perceptive of her irreversible
condition.”3 Because there
is no clear advance directive, however, the patient’s general values,
religious beliefs, and attitudes toward medical care become the
evidentiary basis for the treatment decision.
Critics argue that the substituted judgment standard is malleable
enough to allow relatives and others to advance their own values
and concerns in the guise of a decision that purports to be what
the patient would want. To protect the patient, they say, the scope
of decisions based on this standard should be limited: “the inherently
speculative nature of substituted judgment, along with the vulnerable
position of the incompetent, require that substituted judgment may
not be used to justify a course of action that serves the interests
of others at the expense of the ward’s basic interests.”4 According to this view, incompetent
patients retain a core set of interests that should not be compromised.
To protect these interests, there must be an inquiry into the patient’s
current situation and the benefits and burdens that would accompany
various treatment decisions. This requires observers to apply the
so-called objective approach to treatment decisions for incompetent
The objective approach is usually referred to as the best interests
standard. It is also known as the benefit-burden or reasonable
person standard. Objective standards are applied when evidence
of the patient’s past values and preferences is ambiguous or nonexistent.
Instead of attempting to determine the decision most consistent
with the patient’s subjective beliefs and values, the objective
approach relies on community norms. It rests on “a societal consensus,
or the perspective of ‘a reasonable person,’ choosing as most people
would choose for themselves.”5
Applying objective standards involves weighing and balancing the
benefits and burdens that an incompetent patient would experience
if treatment were administered or forgone. Examples of benefits
and burdens are pain, distress, pleasure, and enjoyment.6 Objective judgments
require decision-makers to evaluate whether treatment interventions
would confer on an incompetent patient sufficient benefit to justify
the risks and burdens the interventions would impose.
Objective standards are controversial because they require healthy
individuals to make quality-of-life judgments for vulnerable, impaired
patients. Critics fear that objective standards will incorporate
social worth and economic considerations. These fears lead most scholars
and legal authorities to regard the objective approach as the least
preferred treatment standard, the absolute last resort when no other
standard will work.
A desire to escape the dangers accompanying objective standards
contributes to the general enthusiasm for advance directives. If
treatment decisions appear to come from patients themselves, there
is less cause to worry about inappropriate quality-of-life evaluations.
At the same time, the scarcity of directives and the deficiencies
of the directives that exist leave patients exposed to the same
risks. And because decisions based on advance directives and substituted
judgment are portrayed as choices coming from the patients themselves,
social worth and economic considerations affecting those decisions
may go undetected.7
In sum, the dearth of advance directives and the shortcomings
of the substituted judgment standard make the objective approach
central to most real cases. Because they have been preoccupied
with advance directives, however, scholars and policy officials
have neglected this approach. As a result, it lacks precision and
The task is to clarify the scope of permissible treatment alternatives
for relatives and other surrogates deciding on behalf of incompetent
patients. The growing population of dementia patients increases
the need for scholars and legal authorities to develop an objective
standard that provides adequate protection to incompetent patients,
but gives due regard to family concerns and values, as well as competing
demands for limited social resources.
All objective treatment standards share the same central difficulty.
To apply objective standards, there must be agreement about what
should count as benefits and burdens to patients and what combination
of benefits and burdens permits a specific treatment choice. But
people have different views on the appropriate content and application
of the objective approach. Should the approach permit withholding
or withdrawing interventions that appear to impose discomfort on
dementia patients? Should it permit forgoing treatment in advanced
dementia patients who appear comfortable but hardly aware of their
surroundings? In a diverse society, complete consensus on these
and similar issues seems out of reach.
Nevertheless, courts and legislatures do take normative positions
on the above questions. For example, in In re Conroy, the New Jersey
Supreme Court set forth an objective standard for cases in which
there is no trustworthy evidence of the patient's former treatment
preferences. In such cases, treatment may be forgone if the "net
burdens of the patient's life clearly and markedly outweigh
the benefits that the patient derives from life [and] the recurring,
unavoidable and severe pain of the patient's life [is] such
that the effect of administering life-sustaining treatment would
be inhumane."8 Burdens to be considered include pain and suffering,
while benefits are "physical pleasure, emotional enjoyment,
or intellectual satisfaction."
Yet Conroy's formulation of the objective test has been criticized
as too narrow to encompass all of the situations in which nontreatment
might be defensible. Justice Handler, in his partial dissent in
Conroy, criticized the majority opinion’s focus on pain. Although
the opinion refers to other factors, such as the patient’s level
of cognitive function, humiliation, dependence, and loss of dignity,
in the end, Handler wrote, "[t]he presence of significant pain
becomes the sole measure of such a person's best interests."9 Another New Jersey judge complained that the narrowness
of Conroy’s objective test means that "large numbers of people
will be thoughtlessly and automatically compelled to continue lives
of intolerable bleakness."10 These judges think that the objective
approach should permit families and clinicians to withhold or withdraw
interventions in cases that fail to qualify as “inhumane treatment.”
One problem that the two judges and other critics have with the
Conroy test is that it rules out decisions to forgo treatment for
permanently unconscious patients, because such patients are incapable
of experiencing pain or suffering. Moreover, advanced dementia
patients, many of whom are "barely conscious" but not
in severe pain, must receive feeding tubes and other life-extending
interventions according to this test.
Concepts such as interests, benefits, and burdens are closely
tied to a patient's conscious awareness. How should objective
standards apply to patients whose awareness is permanently diminished
or absent? Courts and scholars take different positions on this
question. In the Cruzan case, the Missouri Supreme Court took the
position that prolonged life in an unconscious state constituted
a benefit to the patient that outweighed any possible treatment
burdens. In contrast, the Wisconsin Supreme Court held that forgoing
treatment in permanently unconscious patients is permissible under
an objective standard. The rationale for the latter position is
Patients who are permanently unconscious are unaware of benefits
and burdens. The only possible benefit to them of life-sustaining
treatment is the possibility that the diagnosis of irreversible
unconsciousness is wrong and they will regain consciousness. Accordingly,
the major considerations are whether a reasonable person in the
patient's circumstance would find that this benefit, as well
as the benefits to the patient's family and concerned friends
(such as satisfaction in caring for the patient and the meaningfulness
of the patient's continued survival) are outweighed by the
burdens on those loved ones (such as financial cost or emotional
Another conflict concerns what may count as burdens to the patient.
Some writers defend what is referred to as the "sanctity of
life" view, which holds that extended life should never be
regarded as a burden to the patient. According to this view, "burdensomeness
should be assessed by focusing on the pain or invasiveness caused
by the treatment itself, not by evaluating the quality of life that
such medical intervention may sustain."12
An alternative view considers it appropriate to include as possible
burdens and benefits the kind of life the patient will gain with
treatment. Thus, "discontinuing treatment, even if it leads
to the patient's death, is consistent with his or her best interests
when the treatment is hopeless and serves only to sustain biological
existence that is painful or of no benefit to the patient."13 Supporters of this view say that as long as the examination
remains focused on the value life holds for the individual patient,
as opposed to the value the patient's life holds for others,
the lives of disabled persons will be adequately protected:
The question is not whether the patient's quality of life
is below average, or worse than it used to be, or anything of
the sort. Instead, the proper quality of life judgment is only
whether the quality of the patient's life with the life-sustaining
treatment will be so poor as to be not worth living or worse than
no further life at all.14
Related to these debates is an argument about whether objective
standards should consider only burdens and benefits the patient
actually experiences, or should consider "reasonable person"
values and preferences, too. One view is that decision-makers should
consider factors such as pain, suffering, distress, pleasure, dignity,
privacy, and humiliation only if the patients themselves are consciously
experiencing these states. This version of the objective standard
is highly protective of individual patients and allows nontreatment
solely when the burdens of continued life with treatment outweigh
the benefits from the patient's own perspective. Yet this version
is criticized as overly restrictive, since it fails to permit nontreatment
when many people would choose this for themselves or their loved
The second and more expansive version of the objective standard
permits decision-makers to consider factors that a "reasonable
person" would consider relevant to treatment decision-making.
This view is described in the following statement:
In applying the "reasonable person" standard to the
patient with an illness or disabling condition that is severe
and irreversible and who lacks decision-making capacity, the major
consideration is the following: Would a reasonable person in
the patient's circumstances probably prefer the termination
of treatment because the patient's life is largely devoid
of opportunities to achieve satisfaction, or full of pain or suffering
with no corresponding benefits?15
This version of the objective approach allows nontreatment of
permanently unconscious patients, on grounds that a reasonable person
would find unconscious existence insufficiently worthwhile to insist
on its prolongation. Even though patients in this condition are
unaware of their circumstances, normative values such as preservation
of dignity and the importance of consciousness and relationships
to human life suggest that forgoing treatment is permissible.
But those supporting the expansive interpretation of the objective
approach must decide how expansive the approach should be. There
is concern that if the standard allows decisions to rest on concerns
such as preserving dignity, which many incompetent patients are
themselves unable to appreciate, vulnerable patients will go untreated.
The expansive approach could sanction, for example, nontreatment
of patients with mild or moderate dementia who appear comfortable
and content, but lead lives that many people see as humiliating
One way to restrict the scope of reasonable person judgments is
to require evidence that a substantial percentage of the public
agrees with them. For example, in several surveys of the general
public, at least 80 percent said that if they became irreversibly
unconscious they would want life support withheld at their families’
request.17 Decision-makers asked to apply reasonable person values
to cases involving patients in other circumstances, such as moderate
or severe dementia, might insist on evidence of a similar social
consensus regarding the permissibility of nontreatment.
Yet even if its scope is limited by public opinion, the reasonable
person approach permits relatively healthy people to evaluate the
lives of incompetent patients with various disabilities and illnesses.
Because healthy people have never personally experienced these disabilities
and illnesses, they may assign inappropriately low value to life
with such conditions. Two authors have attempted to ameliorate
this problem by shifting the locus of evaluation to a different
population. In their proposal, judgments on when nontreatment would
be permissible would come from a population of competent patients
who have personally experienced illness or injury. This approach
seeks to incorporate an element of subjectivity into the objective
standard, by adopting the viewpoint of a reasonable person with
a degree of personal insight into the patient's situation.18
Still another controversial issue is whether objective standards
should incorporate burdens experienced by others. According to
the President's Commission for the Study of Ethical Problems
in Medicine and Biomedical and Behavioral Research, "[t]he
impact of a decision on an incapacitated patient's loved ones
may be taken into account in determining someone's best interests,
for most people do have an important interest in the well-being
of their families or close associates."19 Another policy group criticized this
position, however, questioning whether such “imputed altruism” should
be part of the reasonable patient standard. According to this group,
the interests of others should influence treatment decisions only
if there is strong evidence that the average person would take such
interests into account in making medical choices.20
A related issue is whether a lack of adequate services and facilities
for the care of incompetent patients should influence treatment
decision-making according to an objective standard. For example,
"some would justify withholding life-sustaining treatment from
a severely demented elderly individual ... on the grounds that it
would not be in that individual's best interests to live in
an inadequately funded state institution ...." Buchanan and
Brock reject this view, arguing instead that the best interests
standard calls for remedying deficiencies in the care available
to such patients. Yet they concede that "neither the interests
of others nor the defects of existing institutions can be ignored
in determining what is in the incompetent's best interest."21
Factors such as family burdens and available care options are
likely to influence decisions at the bedside. The moral challenge
is to keep patient welfare at the forefront. Although most scholars
and officials agree that families should ordinarily be empowered
to make treatment decisions for their incompetent relatives, they
also support some limits on family decision-making.
These limits seek to guard against both overtreatment and undertreatment.
Overtreatment is possible because family decision-makers could request
invasive and burdensome interventions out of guilt, a desire to
avoid responsibility, or a desire to avoid the appearance of suspect
motivations. Undertreatment is also a concern, for empirical evidence
indicates that family members underestimate their elderly relatives'
quality of life and functional status. Because financial and other
burdens often accompany a decision to continue an incompetent patient's
life-sustaining treatment, some families could be too eager to stop
treatment to end their own ordeal.22
The above concerns point to the need to restrict the family's
discretion to continue or terminate an incompetent patient's
life-sustaining treatment. Some statutes and court decisions have
implicitly adopted such limits by permitting family surrogates to
decide only on behalf of permanently unconscious, terminally ill,
advanced dementia, or other seriously compromised patients whose
interests in continued life are regarded as comparatively small.23
Commentators have attempted to formulate more general limits.
Law professor Nancy Rhoden, for example, argued for a presumption
in favor of the family's choice to forgo treatment, unless that
choice is "unreasonable." She proposed that a decision
to forgo treatment should be classified as unreasonable if the incompetent
patient "can experience some of life's pleasures in a manner
not outweighed by the pain or limitations of her condition or medical
treatment or the patient's past preferences and statements show
she would want treatment continued under the circumstances."24 Other commentators speak in terms of permitting families
to decide "within the range of medically sound alternatives,
as determined by appropriate medical standards" or "a
range of plans of care [recognized] as generally acceptable by professional
and community standards."25
Additional guidance comes from the literature on parental decision-making
for children. In a recent article, for example, Michael and David
Benatar argue that parents should be allowed to decide whether boy
babies should be circumcised. These authors recognize that in light
of the available medical data, the procedure fails to advance the
child’s clear best interests.26 At the same time, they
say, the procedure is not so detrimental to the child’s welfare
that medical ethics and law should deem it unacceptable.
The Benatars propose that even though circumcision cannot be justified
under a strict interpretation of the best interests standard, the
intervention falls within the scope of permissible parental choice.
They contend that parental discretion should encompass decisions
that express religious and cultural values. At the same time, they
argue for limits on this discretion. For example, they say, parents
should not be permitted to demand circumcision without the application
of pain-relieving measures. In that situation, the parents’ values
should not be permitted to trump the child’s interests in being
kept comfortable during the procedure.
A similar analysis could support classifying certain dementia
treatment decisions as outside the limits of acceptable family choice.
One example is family refusal of oral antibiotics for a patient
with mild dementia who retains the ability to enjoy numerous activities
and relationships. A much closer case is family refusal of major
surgery or chemotherapy for a patient with moderate dementia. In
this situation, the patient may be unable to understand or remember
the reasons for the restrictions and physical discomfort the interventions
would impose. Some people would see this treatment question as
one that the family should be free to resolve. Others would disagree,
arguing that nontreatment would be too detrimental to the patient.
A third case is family refusal of tube feeding for “barely conscious”
advanced dementia patients. Although this option may not be covered
by a narrow concept of the patient’s best interests, it is often
defended as a reasonable choice in light of the questionable benefit
that tube feeding confers on such patients.27
Developing a robust objective approach to treatment decisions
for dementia patients will require public and professional debate
over cases such as these. It will require an understanding of how
different treatment interventions can affect dementia patients.
It will also require thoughtful deliberation about the complex moral
dimensions of these cases. People with dementia have a progressive
terminal illness, but many years can elapse before death becomes
inevitable. During much of this time, patients are aware and able
to interact with the world. They can be harmed or helped by the
medical decisions others make for them. The Council’s inquiry could
contribute to the search for defensible moral boundaries governing
1. This review consists of slightly edited material from three
prior publications: Dresser, Precommitment: A Misguided Strategy
for Securing Death With Dignity, 81 Tex. L. Rev. 1823 (2003);
Dresser, Standards for Family Decisions: Replacing Best Interests
With Harm Prevention, 3 Am. J. Bioethics 54 (2003); Shapiro,
Spece, Dresser & Clayton, Bioethics and Law: Cases, Materials
and Problems (St. Paul: West Group, 2003).
2. This standard is also known as the limited objective standard.
In re Conroy, 486 A.2d 1209, 1232 (N.J. 1985).
3. In re Quinlan, 355 A.2d 647, 663 (N.J. 1976).
4. Buchanan & Brock, Deciding for Others: The Ethics of
Surrogate Decision Making 117-18 (1989) .
5. New York State Task Force on Life and the Law, When
Others Must Choose 33 (1992).
6. See In re Conroy, 486 A.2d 1209, 1232 (N.J. 1985).
7. For example, empirical studies indicate that nursing homes
allow family members to sign “advance directives” for older adults
who lack decisional capacity. Molloy, Systematic Implementation
of an Advance Directive Program in Nursing Homes, 283 JAMA
1437 (2000); Elizabeth Bradley et al., Institutional Efforts to
Promote Advance Care Planning in Nursing Homes: Challenges and
Opportunities, 25 J. L. Med. & Ethics 150 (1997).
Although family decision-making is often appropriate, it is disingenuous
to categorize it as an advance directive. This is a clear demonstration
of how advance directives can be manipulated to justify decisions
that rest on considerations other than the patient’s former choice.
In such cases, the directives “may not represent the informed
[nursing home] resident’s wishes but rather what the surrogate
deems to be in the resident’s best interests, or, potentially,
in the surrogate’s best interests.” Bradley et al., supra,
8. Conroy, 486 A.2d at 1232.
9. Conroy, 486 A.2d at 1247, 1249.
10. In re Visbeck, 510 A.2d 125, 133 (N.J. Super. Ct. Ch. Div.
11. Hastings Center, Guidelines on the Termination of Life-Sustaining
Treatment and the Care of the Dying 29 (1987). See also
President's Commission for the Study of Ethical Problems in
Medicine and Biomedical and Behavioral Research, Deciding to
Forego Life-Sustaining Treatment 181-86 (1983) (remote possibility
that permanently unconscious patient was incorrectly diagnosed
is insufficient to give patient overriding interest in receiving
life-sustaining treatment); Quinn, The Best Interests of Incompetent
Patients: The Capacity for Interpersonal Relationships as a Standard
for Decisionmaking, 76 Calif. L. Rev. 897 (1988) (arguing
that nontreatment should be permissible for patients who have
irreversibly lost minimal capacity for social interaction).
12. New York State Task Force, When Others Must Choose,
14. Buchanan & Brock, Deciding for Others, at 124 (1989).
15 Hastings Center, Guidelines, at 28-29.
16. See Brock, Justice and the Severely Demented Elderly,
13 J. Med. Phil. 73, 93 (1988) ("significant numbers
of persons, though by no means all persons, find the continued
life of the moderately demented that is sometimes supported by
various kinds of life-sustaining treatment on balance no longer
a benefit or desirable in comparison with the alternative of an
17. Davis, Shifting the Burden of Proof, 31 Second Op.
18. See Emanuel & Emanuel, Decisions at the End of
Life: Guided by Communities of Patients, Hastings Center Rep.,
Sept.-Oct., 1993, at 6.
19. President's Commission, Deciding to Forego Life-Sustaining
Treatment, at 135 (footnote omitted). See also In
re Torres, 357 N.W.2d 332 (Minn. 1984) (patient's presumed
desire to avoid burdens on survivors is one reason treatment withdrawal
is in patient's best interests).
20. New York State Task Force, When Others Must Choose,
at 62-65, 109.
21. Buchanan & Brock, Deciding for Others, at 134.
22. Emanuel & Emanuel, Proxy Decisionmaking for Incompetent
Patients, 267 JAMA 2067 (1992).
23. Oregon Rev. Stat. § 127.635 (1997).
24. Rhoden, Litigating Life and Death, 102 Harv. L. Rev.
375, 442 (1988).
25. Buchanan & Brock, Deciding for Others, at 143;
Lynn, Procedures for Making Medical Decisions for Incompetent
Adults, 267 JAMA 2082 (1992).
26. Benatar & Benatar, Between Prophylaxis and Child Abuse:
The Ethics of Neonatal Male Circumcision, 3(2) Am. J. Bioethics
27. Gillick, Rethinking the Role of Tube Feeding in Patients with
Advanced Dementia, New Eng. J. Med. 1755 (2000); Finucane,
Christmas & Travis, Tube Feeding in Patients with Advanced Dementia,
282 JAMA 1365 (1999).