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

IMPLEMENTING THE FAMILY HEALTH CARE DECISIONS ACT
1.4 In health care, making decisions for others may
be more stressful for the agent or surrogate than
making decisions for oneself.
When the patient herself is making a decision she
can:
• Balance the identified risks and suggested benefits
of care in the context of the diagnosis and
prognosis,
• Measure these against her own history, values and
religious preferences,
• Assess a willingness to take risks against the possibilities
and probabilities of a particular outcome,
• Evaluate the ability to withstand pain and suffering
for a future possible benefit,
• Review the costs of the intervention and consider
the possible effects of this expenditure on others,
• Consider all of these issues in the context of the
moment and for the future,
• Confront whether the intervention, in a life-threatening
situation, is preferable or whether, given
all of the circumstances, acceptance of comfort
care and the inevitability of death seems more in
concert with a life lived. While ambivalence about
death is understandable, some choices seem worse
than a medically supported end to suffering.
Doctors and patients have struggled with these difficult
decisions for decades. The core of the doctor-patient
relationship is the ability of the physician to focus the
attention of the patient on these personal, morally and
intellectually complex issues. The process of “informed
consent” is the process in which the patient learns about
the risks, benefits, and alternatives for different interventions,
the risk of non-intervention, and the likelihood of
death. The patient can then mix and measure these medical
data in the personal cauldron of a life-lived, to reach
a decision that can be communicated to the physician as
she provides guidance to the care team regarding future
treatments.
It may be, however, that this personal calculus for
another is more stressful than considering the issues for
oneself. If it is the patient who is experiencing the suffering
then she can weigh the alternatives with some personal
surety that the balance reflects her position. But if it
is a surrogate weighing pain and suffering second hand,
in the abstract for the patient, consider how significant is
the matter of a mistake. This awesome responsibility may
be thrust, unanticipated and unwelcome, on a relative
or loved one of the patient, for which sympathy, support
and compassion must be the response of care providers.
1.5 The doctor-health care agent and doctorsurrogate
relationship has not received
the attention accorded the doctor-patient
relationship but it is central to the fair and just
implementation of the FHCDA.
The health care proxy is a known feature of NYS law.
Agents under a proxy have been appointed by patients
for decades to explain and extend their wishes and
desires and to protect their rights and interests when incapacity
intervenes. Even though NYS law does not require
a patient to inform a person who is appointed as a proxy,
most patients do so as a way of advancing their personal
preferences. But deciding for others is a profound and
taxing burden, even for a person who has been prepared
for the task by discussions over time with the patient. The
proxy can never be certain that what she advocates for
would reflect the wishes of the patient. When the burdens
are overwhelming and the benefits slim, the decision to
choose hospice and permit death is one that can never be
easily or comfortably confronted for another.
In the world of surrogate choice it is the obligation
of the physician and the health care team to support the
surrogate, to provide information, and to offer solace and
consolation when the choices are limited.
1.6 Shared decision making is central to the
implementation of the FHCDA. The art of the
doctor-surrogate relationship is for the physician
to share with the surrogate all information that
she would share with the patient if the patient
were capable of making health care decisions,
and in addition, to bear the burden of hard
decisions without disempowering the surrogate.
The true art of medicine is to present the data,
discuss how the data intersect with the life, or possible
death, of the patient and bear the burden of the choice
that accepts death while yet permitting the surrogate to
feel empowered. Medical staff deals with the death of
patients daily; family members and loved ones do not.
Personal values determine choice but only from the menu
of options realistically available to this patient. Surrogates
must not be made to feel that the patient’s death
was their “fault;” death is the inevitable end of existence.
Care, comfort and dignity are the focus at the end-of-life
and the surrogate must be permitted to share in benefit of
these assistances and not in the burden of the death itself.
NYSBA Health Law Journal | Spring 2011 | Vol. 16 | No. 1 77