n engl j med
evidence of patient preference
When a patient lacks the capacity to make deci-sions, a single surrogate (usually defined in a statelaw according to a hierarchy) should make choiceson that patient’s behalf on the basis of availableevidence of the patient’s preferences and values.
These decisions may be based on previous state-ments (either oral or written) by the patient oron a surrogate’s knowledge of the patient. Thisstandard of surrogate decision making has been widely supported in the law
and among ethi-cists.
In some states, however, a patient’s ad- vance directive must include a statement that thepatient would not want ANH.
This higher stan-dard of evidence is inappropriate for two reasons.First, decisions about ANH should not be heldto a higher standard of evidence, because the bal-ance of risks and potential benefits is, in most situations, no different for ANH than for many other medical treatments. For many patients, suchas those with dementia, the balance may favorother interventions over ANH. Therefore, it is il-logical to require a higher level of evidence inorder to withhold or withdraw ANH than wouldbe required for other medical treatments or pro-cedures that offer a similar risk–benefit balance.Second, a higher standard that requires spe-cific evidence of a patient’s preferences regard-ing ANH is not realistic. Although in its decisionin the Cruzan case, the Supreme Court upheldthe constitutionality of requiring clear and con- vincing evidence of a patient’s preferences,
any higher standard has proved to be very difficult to satisfy. Despite moderate increases in theprevalence of advance directives as a result of thePatient Self-Determination Act, most adults havenot executed a written advance directive,
andeven those who have may not have specifiedtheir preferences about ANH. Therefore, a higherevidentiary standard makes it harder for surro-gates to make decisions that reflect a patient’sgoals and preferences. Furthermore, a higherstandard is illogical because it would permit cer-tain restraints on liberty — the imposition of ANH without consent — whereas impositions of other treatments are prohibited.
lack of advance directive
Although surrogates should make decisions onthe basis of a patient’s preferences, sometimes anadvance directive is not available. In this situation,the patient cannot be assumed to want ANH. In-deed, there are a variety of reasons why patientsdo not complete advance directives, including cul-tural concerns, lack of information, and reluctanceto initiate discussions about advance directives.
When a patient’s preferences are unknown, surro-gates must consider how a reasonable person witha cultural background, life experience, and world- view similar to the patient’s would weigh the risksand potential benefits of ANH. This “reasonableperson” standard often may be easier to apply than the related “best interest” standard, which re-quires surrogates to consider the difficult philo-sophical question of whether a decision that couldresult in death is in a patient’s best interest.Although only a minority of states explicitly permit the reasonable-person standard,
reason-able people often choose to forgo life-sustainingtreatment if its discomfort outweighs its bene-fits
or if those people perceive a health con-dition to be worse than death.
The balanceof risks and potential benefits for ANH may beless favorable than the balance for other treat-ments that surrogates refuse on a patient’s be-half. Therefore, states that allow surrogates tomake other health care decisions on the basis of a reasonable-person standard also should per-mit this standard for decisions about ANH.
provision of palliative care
Patients who forgo ANH may experience hungeror thirst. Although hunger typically resolves afterseveral days, thirst may persist.
Other symptomsattributable to the withholding or withdrawal of ANH include dry mouth, confusion and delirium,and diminished alertness.
Some of these symp-toms (in particular, altered mental status) are part of dying and may occur during any progressiveillness.
When ANH is withheld or withdrawn, physi-cians should reassure patients and families that most of the resulting discomfort can be managedeffectively.
Altered mental status can often beprevented by environmental modifications (suchas reducing noise at night and placing orientationcues in patients’ rooms), and delirium can betreated pharmacologically.
Thirst and mouthdryness can be alleviated with ice chips, a mouthrinse, or moistened swabs.
Evidence suggeststhat these and other interventions can help en-sure a comfortable death.
All patients who for-go ANH should be offered comprehensive palli-ative care, including hospice.
A comprehensivepalliative care or hospice plan should addressphysical and psychological symptoms and should
Copyright © 2005 Massachusetts Medical Society. All rights reserved.Downloaded from www.nejm.org by JENNIFER L. WEIL MD on January 7, 2008 .