VOL. CLXXXV– NO.
2 – INDEX 87
H EALTH C ARE L AW
End of Life Treatment
Negotiating the decision-making maze for institutionalized elderly
By Julie K. Assis
dministrators of New Jersey’s
A approximately 400 licensed long-
term care (LTC) facilities face
complicated challenges when caring for
elderly, institutionalized residents near-
ing the end of their lives, particularly
involving the provision of life-sustaining
treatment such as artificial feeding, ven-
tilators and dialysis. To protect elderly
individuals unable to communicate their
wishes, the New Jersey Department of
Health and Senior Services (DHSS) has
instituted a complex network of regula-
tory guidance on who should make these
decisions and the process by which they
should be made.
The players in the decision-making
process are numerous, including the res-
ident to the maximum extent possible,
family and loved ones, healthcare
providers, representatives and/or surro-
gate decision makers, and the Office of
the Ombudsman for the Institutionalized
Assis, a member of the Healthcare
Practice Group at Flaster/Greenberg of
Cherry Hill, focuses her practice on repre-
sentation of individual healthcare
providers and healthcare entities in a vari-
ety of regulatory, contractual, licensing
and organizational issues.
This article is reprinted with permission from the JULY 10, 2006 issue of the New Jersey Law Journal. ©2006 ALM Properties, Inc. Further duplication without permission is prohibited. All rights reserved.
JULY 10, 2006
Elderly (OOIE). The LTC facility admin-
istrator influences the way these deci-
sions are made by instituting facility
policies and procedures addressing these
issues and assuring that its staff complies
with the state’s regulations. To aid the
facility administrator in this task, this
article outlines the various players and
their roles in the decision-making
process.
The OOIE was established in 1977
to investigate and resolve complaints of
abuse, neglect and exploitation of people
60 years of age and older within state-
licensed LTC facilities, and regulations
were adopted in 1990 detailing the
OOIE’s role in the end-of-life process for
these residents.
An LTC facility must notify the
OOIE anytime a decision regarding life-
sustaining treatment arises, except when
(i) the resident is fully informed and
capable of making healthcare decisions,
(ii) a fully executed and valid advance
directive exists, (iii) the treatment is not
medically necessary, or (iv) the proposed
decision is being reviewed by a court or
a regional ethics committee. The OOIE
aids decision making in two main areas:
assessing the resident’s intent regarding
life-sustaining treatment and engaging
the services of two nonattending physi-
cians to determine the resident’s medical
ESTABLISHED 1878
condition. After completing an investiga-
tion, the OOIE decides whether the con-
ditions are satisfied to authorize with-
holding or withdrawing treatment.
An individual’s wishes regarding his
own care are of utmost importance in
any end of life decision. The New Jersey
Supreme Court recognized an individ-
ual’s right to reject life-sustaining treat-
ment, when the individual is capable of
making healthcare decisions, bases deci-
sions on a wish to be free from medical
intervention rather than a specific intent
to die and has an underlying medical
condition that ultimately results in death.
In the Matter of Conroy, 98 N.J. 321
(1985).
Under the OOIE regulations, an
elderly resident in a LTC facility may
choose to have life-sustaining treatment
withheld or withdrawn if he is fully
informed and has the capacity to make a
healthcare decision. Capacity means the
ability to understand and appreciate the
nature and consequences of a particular
healthcare decision, including the resi-
dent’s diagnosis and prognosis, the bur-
dens, benefits and risks associated with
the decision and alternatives to the deci-
sion, and the ability to voluntarily reason
and make judgments about that informa-
tion. If there is any doubt regarding
whether a resident is fully informed or
has capacity, two nonattending physi-
cians must assess the resident and docu-
ment their conclusions. N.J.A.C. 8:90-
2.3(d)(2). Capacity must be re-assessed
periodically as the resident’s medical
2 NEW JERSEY LAW JOURNAL, JULY 10, 2006
condition or prognosis changes.
An individual can also specify pref-
erences regarding life-sustaining treat-
ment through an advance directive. In
New Jersey, there are two forms of
advance directive. An instruction direc-
tive, also known as a “Living Will,” doc-
uments the resident’s wishes for health
care in the event that he subsequently
lacks capacity; while a proxy directive,
also known as a “Durable Power of
Attorney for Health Care,” designates a
health-care representative to make
health-care decisions on the resident’s
behalf in such event. N.J.S.A. 26:2H-55.
Under the recently enacted “New Jersey
Advanced Directives for Mental Health
Care Act,” an individual may also speci-
fy his wishes regarding mental health
care and designate a proxy mental
health-care representative. N.J.S.A.
26:2H-102 et seq. The advance directive
becomes operative only when it is given
to the attending physician or LTC facili-
ty and the patient is determined to lack
capacity. N.J.S.A. 26:2H-59.
The resident’s wishes regarding his
care remain paramount under an opera-
tive directive. The physician and repre-
sentative must still actively promote the
resident’s participation to the maximum
extent possible, and follow any prefer-
ence expressed in the resident’s instruc-
tion direction. Absent direct instruction,
the representative must base all deci-
sions on evidence of the resident’s val-
ues and wishes. Even if the resident is
incompetent, he may revoke an advance
directive by notifying any reliable wit-
ness or taking any action evidencing
intent to revoke the document. He can
suspend or reinstate the advance direc-
tive in the same way. N.J.S.A. 26:2H-57.
Attending and nonattending physi-
cians, nurses and other caregivers make
a number of medical decisions that influ-
ence what life-sustaining treatment will
be provided to, or withheld from, a resi-
dent.
Physicians have the responsibility of
assessing whether a resident has capaci-
ty to make health-care decisions and at
what point an advance directive
becomes operative. To effectuate an
advance directive, the attending physi-
cian must determine capacity, inform the
patient and his health-care representative
of such a decision and their right to con-
test it, and document this in the patient’s
chart. Unless the attending physician and
the representative agree that the patient’s
lack of decision-making capacity is
clearly apparent, one or more physicians
must confirm the attending’s determina-
tion. N.J.S.A. 26:2H-60. Confirmation
by a physician with specialized mental
health training is required if the attend-
ing or confirming physician determines
that a patient lacks capacity because of a
mental or psychological impairment or a
developmental disability.
The resident’s attending physician,
or an advanced practice nurse in collab-
oration with the attending physician, has
the primary responsibility for determin-
ing whether a particular treatment is
medically indicated. “Medically indicat-
ed” means treatment that will improve
the medical condition of, or is necessary
to provide palliative care to, the resident.
N.J.A.C. 8:90-2.2. This decision is criti-
cal because it changes the process by
which a facility must proceed. If the
treatment is not medically indicated, the
facility is not required to report to the
OOIE and follow the OOIE’s proce-
dures.
Before medically indicated life-sus-
taining treatment can be withheld or
withdrawn in accordance with an opera-
tive advance directive, the attending
physician and another physician must
determine that the resident is permanent-
ly unconscious, in a terminal condition
or has a serious irreversible illness or
condition and the burdens of medical
intervention outweigh the benefits.
N.J.S.A. 26:2H-67. If there is no
advance directive, two nonattending
physicians selected by the OOIE must
determine that the resident is permanent-
ly unconscious, in a persistent vegetative
state, or suffers severe and permanent
mental and physical impairments and
has less than one year to live before
treatment can be withheld or withdrawn.
N.J.A.C. 8:90-2.4.
A health-care provider has the right
185 N.J.L.J. 87
to decline from participating in with-
holding or withdrawing life-sustaining
treatment, in accordance with sincerely
held personal or professional convic-
tions. N.J.S.A. 26:2H-62(c). Should this
occur, the provider has the responsibility
to (i) inform the patient and health-care
representative, (ii) notify the appropriate
supervisor or designated facility official,
(iii) cooperate in a “respectful and time-
ly transfer of care,” and (iv) assure that
the patient is not abandoned or treated
disrespectfully.
The contribution of family, friends
and guardians to the decision-making
process is particularly important when a
resident lacks capacity, because these
individuals make decisions on behalf of
the resident and provide critical insight
into the resident’s wishes regarding end-
of-life care.
If a resident has effectuated a proxy
directive, he has formally designated a
“health-care representative” or a “mental
health representative” to make health-
care or mental health decisions upon a
determination that the resident lacks
capacity. The resident may also desig-
nate alternate health-care representa-
tives, in order of priority, in the event
that the primary representative is
unavailable. A health-care representative
may not be an operator, administrator or
employee of the facility at which the res-
ident is receiving care, unless related to
the resident. N.J.S.A. 26:2H-58.
If a resident has not designated a
representative through a proxy direc-
tive, a surrogate decision-maker will be
responsible for representing the resi-
dent’s interests. A surrogate decision-
maker may be a guardian, a close and
caring family member, or a person des-
ignated by the resident, who is willing
and able to make a decision to withhold
or withdraw life-sustaining treatment
on behalf of the resident. N.J.A.C.
8:90-2.2. If several family members
seek to become the resident’s surrogate
decision-maker, the order of priority is
the resident’s spouse, parents, children
and next of kin.
When these decision-makers are not
available or the resident has no identifi-
3 NEW JERSEY LAW JOURNAL, JULY 10, 2006
able friends or family to function in
these roles, the court may appoint a spe-
cial medical guardian to represent the
resident’s interests. R. 4:86-12.
In 1998, New Jersey established a
system of regional long-term care
ethics committees (the Network) as
part of the innovative New Jersey Stein
Ethics Education & Development (NJ
SEED) project. These committees —
composed of facility administrators,
social workers, nurses, physicians, and
clergy — provide ethics consultations
to LTC facilities. NJ SEED also pro-
vides ethics training, continuing educa-
tion units and peer support to LTC
facility personnel. A 2003 evaluation of
the project found that almost 60 per-
cent of New Jersey’s LTC facilities had
become members of the Network, and
of those, almost 70 percent had con-
sulted with one of the committees
regarding an ethical issue. C.M.
Weston, “The NJ SEED Project:
185 N.J.L.J. 87
Evaluation Of An Innovative Initiative
For Ethics Training In Nursing
Homes,” 6 J Am Med Dir Assoc. 68-75
(Jan-Feb 2005).
Participation in the Network bene-
fits an LTC facility, since it will be
exempt from reporting and following
oversight procedures by the OOIE if a
regional ethics committee has reviewed
an end-of-life decision and recom-
mended in favor of the facility’s pro-
posal. N.J.A.C. 8:90-2.3(d)(6). ■