Ethics and Clinical Practice Guided by the Family Health Care ...

IMPLEMENTING THE FAMILY HEALTH CARE DECISIONS ACT
What follows are some ethical principles and precepts
that can be used to guide physicians and other
health care professionals as they care for patients at the
end of life. These ethical discussions are based upon the
legal standards set forth in the FHCDA. It is our hope
that these principles will help physicians and other
health care providers to link the law with good clinical
practice.
1. The Family Health Care Decisions Act [FHCDA] Is
a Platform for Clinicians and Medical Care Teams
to Provide Better Care for Patients by Respecting
Their Values and Supporting Their Family
Members and Loved Ones
1.1 The FHCDA empowers family members and
others close to the patients, who know the
patient’s values, to make medical decisions
when incapacity intervenes.
The FHCDA recognizes the stark and well-documented
reality that patients, by design or by inadvertence,
often fail to designate a health care proxy or to
leave explicit directions about their wishes for medical
care if they become incapacitated. Responding to this
fact, the act enables family members and others close
to the patients to make medical decisions in accordance
with the patient’s wishes. If the patient’s explicit wishes
are not known, the FHCDA directs the surrogate to make
decisions in accordance with the patient’s values and
past patterns of behavior including the patient’s religious
and moral beliefs. 2 The surrogate has all the powers an
individual patient would have to make his or her own
medical decisions, including the decision (under most
circumstances) to withhold or withdraw life-sustaining
treatment. 3
1.2 The FHCDA empowers surrogates [family
members, loved ones and domestic partners]
but, by implication, imposes enhanced
obligations on physicians to communicate
sympathetically and effectively, to evaluate
medical data and state the prognosis honestly,
and to be truly open to the discussion of patient
values even when these may conflict with
medical culture.
Physicians must:
• Utilize “shared decision making” with the
surrogate;
• Discuss medical condition and prognosis clearly,
honestly and humanely;
• Recognize that family members and loved ones
may be overwhelmed by feelings of responsibility
and uncertainty;
• Understand that surrogate fears and family dynamics
may act as barriers to clear consideration of
options;
• Be aware that central to supporting surrogate decision
makers is reminding them that they are making
decisions to the best of their ability in accordance
with the patient’s wishes. This perspective
requires framing questions to the surrogate in terms
of what the surrogate believes the patient would
want or not want done, rather than merely asking
the surrogate what to do.
1.3 Surrogates, legally appointed under the
FHCDA, have thrust upon them the awesome
responsibility of deciding for others and require
communication, compassion and support from
the care team to carry out their responsibilities.
The fact that many surrogates will be appointed by
the law rather than selected by their loved one demands
that they be informed, supported and protected as they
confront this arduous duty of deciding for others. The law
also requires such communication. 4 For many surrogates,
the process will pose extraordinary and unfamiliar burdens.
Medical care providers daily confront decisions that
may result in pain, suffering, and even death for a patient.
They do so because, in their judgment, the route chosen
offers the best hope for the patient’s return to a prior state
of robust health and functioning. The burden of care and
the pain and suffering that may accompany the interventions
are morally justified by the expectation of benefit.
This is the calculus that providers and patients make
together during the process of informed consent nested in
a structure of shared decision making.
Legally appointed surrogates must be brought, as
the patient would be, through this thicket of issues and
considerations that comprise medical decision making.
They must be helped to identify the values of the patient
as the basis for the choice, and when that search fails, be
helped to understand what is in the best interest of the
patient. The notion that what is best for the patient may
be to provide comfort care and not to contest the process
of dying will pose a cognitive and emotional chasm for
some surrogates. Discussion of the prognosis in light
of the patient’s patterns of life and personal values and
a focus on palliative care may help to vault this divide
between the understandings of the team and the position
of the surrogate.
76 NYSBA Health Law Journal | Spring 2011 | Vol. 16 | No. 1