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Preference/Choice/Decision:
A Model for Limited Guardianship
This
model was developed by Peggy Dervitz, M.S.W., Shashi Jain, Ph.D., and
Joan Kakascik, Ed.D. from their work
with individuals with mild to moderate mental retardation. The
model offers a comprehensive and consistent approach toward evaluating
competency, drafting consent judgments and developing goals to
increase self-direction.
Assessing
Capacity for People with Developmental Disabilities: Implementing the
Model for Limited Guardianship
The authors, Peggy
Dervitz, M.S.W., Shashi Jain, Ph.D., and
Joan Kakascik, Ed.D., continue to explore the nature of decision
making, discuss the implementation of the regulatory changes related
to the assessment process and explore the possibility of less
restrictive alternatives to limited guardianship. Their efforts
to improve the process of assessing capacity have been widely
recognized locally, nationally, and internationally. A thorough
and accurate assessment is the cornerstone of preserving individual
rights to the maximum extent possible.
Copies of each
publication are available
for $7.95. To order contact GANJI at:
GANJI
P.O. Box 546
Chester, NJ 07930
1-877-GUARDNJ
(487-7365)
GANJI Pamphlet
Series on Guardianship Issues
No.
1 January 2004: Enhancing Communication with Non-Verbal or
Communication Impaired People
By
Donna-Marie Whelan, MA
Speech/Hearing
Specialist I
NJ
Division of Developmental Disabilities
Private
Practice in Bergen, Hudson and Passaic Counties
No.
2 October 2006: Power of Attorney for People with Developmental
Disabilities-Sample
Documents and Frequently Asked Questions
Developed
by:
Peggy
Dervitz, MSW
Shashi
Jain, Ph.D.
Daniel
Jurkovic, Esq.
Joan
Kakascik, Ed.D.
In
collaboration with:
The
Community Health Law Project
David
Popiel, Esq., Senior Managing Attorney
Elizabeth
Livingstone, Esq., Senior Staff Attorney
Selected articles:
THE ETHICAL COMPONENTS OF A CAPACITY HEARING
THE JOE M CASE
By
Peggy
Dervitz, MSW
Daniel
Jurkovic, Esq.
Joan
Kakascik, Ed.D.
This
article examines the case of Joe M who is a 50 year old man with mild
retardation who lives in a NJ licensed group home. Joe's sister had
retained an attorney to petition the court for guardianship of
Joe. She had plans to move from NJ with Joe to a new
location. Joe did not want to go and so the case went to court.
Follow
this link to learn more about this case:
The
Joe M Case
From "The Guardian", the quarterly Newsletter of GANJI
Selected
Article from Volume VII, Number 1, Spring 2001
GUARDIANS' HEALTH CARE DECISION MAKING
POWERS USING DO NOT RESUSCITATE (DNR) AND DO NOT HOSPITALIZE (DNH) ORDERS
By Sharon Rivenson Mark, Esq.
A guardian of an incapacitated person is often called upon to make
critical medical decisions for her ward.
A guardian may be asked to sign a "Do Not Resuscitate
Order" or may decide that a "Do Not Hospitalize Order" is
appropriate. Fortunately,
there are guidelines available to the guardian when faced with these
difficult decisions.
An individual who has been declared to be an incapacitated person
no longer has the capacity to make decisions regarding medical treatment.
That incapacitated person's guardian must make these decisions
based upon competent medical advise.
An individual may have executed an advance directive for health
care. If so, the guardian
must respect the individual's instructions as long as the advance
directive was executed before the person became incapacitated - when she
was able to understand the nature of the document executed as an advance
directive.
A guardian of an incapacitated person has broad powers over the
person and property of the incapacitated person.
N.J.S.A. 3B:12-57(c) provides that a guardian may give any consents
or approvals that may be necessary to enable the ward to receive medical
or other professional care, counsel, treatment or service, except to the
extent that this authority has been modified by order of the court.
The extent and exercise of this authority has been the subject of
some debate. This is
particularly critical when a guardian is faced with a request by a
hospital or health care provider to execute a do not resuscitate order (DNR)
or a do not hospitalize order (DNH) for a person lacking the capacity to
make a health care decision.
The capacity to make a health care decision encompasses the ability
to understand and appreciate the nature and consequences of a health care
decision, including the resident's diagnosis and prognosis, the benefits
and risks associated with the decision and alternatives to the decision,
and having the ability to voluntarily reason and make judgments about the
information.
Do Not Resuscitate Orders (DNR's) can be appropriately utilized in
the long-term care settings. There
currently exists no regulation or law prohibiting their use.
Guidelines were issued by the State of New Jersey, Office of the
Ombudsman for the Institutionalized Elderly for the use of do not
resuscitate orders (DNR's) in long-term care facilities.
These guidelines are as follows:
-
A resident, responsible family member and/or surrogate
decision-maker can request that a DNR order be written and placed on a
chart.
-
Prior to writing a DNR order, the attending physician must:
a. Discuss the circumstances and consequences surrounding his/her
decision to pose such an order with the resident and/or the patient's
surrogate decision-maker.
b. If a resident has a court appointed guardian, that guardian
must be
contacted before the DNR order is written.
c.
Document the above referenced
discussion(s).
d. Document the patient's medical history, diagnosis and prognosis as
it related to the DNR order.
-
The DNR order itself should be clear and precise.
It should include an appropriate plan or care
for comfort measures.
-
If a resident has the capacity to make health care decisions, and
requests that the attending physician place a DNR order on his/her chart,
the attending physician must make sure that the resident is fully informed
(aware of his/her diagnosis, prognosis, risks, benefits and any available
alternatives), that this is in fact the resident's wish and there is no
coercion.
-
If a resident is transferred from an acute care to a
long term care setting with a DNR order, that order must be
thoroughly reviewed and re-written by the facility attending physician in
order to be valid.
-
If a resident has executed a Do Not Resuscitate clause as part of
an advance directive, for that clause to be honored by the facility staff,
it should be accompanied by a supporting written order from the attending
physician.
Do
Not Hospitalize Orders (DNH's) can be appropriately utilized in long-term
care settings. There currently exists no regulation or law prohibiting
their use. Guidelines have
been also issued by the Office of the Ombudsman for the Institutionalized
Elderly for the use of do not hospitalize orders (DNH's) in long-term care
facilities. These guidelines
are as follows:
1. A resident, responsible family member and/or surrogate
decision-maker can request that a DNH order be written and placed on a
chart.
2. Prior to writing a DNH order, the attending physician must:
a. Discuss the circumstances and consequences surrounding his/her
decision to pose such an order with the resident and/or the patient's
surrogate decision-maker.
b. If a resident has a court appointed guardian, that guardian must be
contacted before the DNH order is written.
c. Document the above referenced
discussion(s).
d. Document the patient's medical history, diagnosis and prognosis as
it related to the DNH order.
3. The DNH order itself should be clear and precise.
It should include an appropriate plan or care for comfort measures.
4. It is recommended
that the DNH order be countersigned by the patient, surrogate decision-maker and/or responsible family member.
5. If a resident has the capacity to make health care decisions, and
requests that the attending physician place a DNH order on his/her chart,
the attending physician must make sure that the resident is fully informed
(aware of his/her diagnosis, prognosis, risks, benefits and any available
alternatives), that this is in fact the resident's wish and there is no
coercion.
6. The utilization of a DNH order (or clause in an Advance Directive)
does not prohibit a facility from sending a resident to the hospital in
appropriate instances. For
example, for sutures in case of a laceration or for an x-ray after a fall.
7. The appropriateness of sending a resident with a DNH order to the
hospital must be evaluated and determined by the health care professionals
in light of the presenting problem and the resident's overall medical
condition. For example, for
someone who is terminally ill and in the end stages of a disease process,
it may be inappropriate to send an individual out for IV antibiotics to
treat sepsis. The benefits
versus burdens of the proposed hospitalization must be evaluated.
8. If a resident is transferred from an acute to a long term care
setting with a DNR order, that order must be thoroughly reviewed and
rewritten by the facility attending physician in order to be valid.
9. If a resident has executed a Do Not Hospitalize clause as part of
an advance directive, for that clause to be honored by the facility staff,
it should be accompanied by a supporting written order from the attending
physician.
The
New Jersey Administrative Code [N.J.A.C.] also details the procedures
required prior to the withholding or withdrawing of life sustaining
treatment from elderly, institutionalized residents.
N.J.A.C. 8:90-2.3 specifies a duty to report to the Office of the
Ombudsman, instances where a person believes that withholding or
withdrawing life-sustaining treatment from an elderly, incompetent nursing
home resident would effectuate the resident's wishes or would be in the
resident's best interests, or would be an abuse of that resident.
These reporting procedures do not apply when:
1. The resident is under age 60 or
2. The resident, being fully informed and having the capacity to make
a health care decision, chooses to withhold or withdraw life-sustaining
treatment. Two non-attending
physicians shall make the determination of whether the resident is fully
informed and has the capacity to make a health care decision.
The physicians' determinations shall be based on the physicians'
reasonable medical judgments and shall be documented on the resident's
chart; or
3. The resident has a fully executed and valid Advance Directive
("Living Will") or Proxy Directive ("Durable Power of
Attorney for Health Care"); or
4. The life-sustaining treatment is not medically indicated for the
resident. The resident's
attending physician shall make this determination.
Such determination shall be based on the physician's reasonable
medical judgment and shall be documented on the resident's chart; or
5. The proposal to withhold or withdraw life-sustaining treatment is
being reviewed by, or has been reviewed favorably by, a court of competent
jurisdiction.
N.J.A.C.
8:90-2.4 details the procedure for residents who are incapable of making
healthcare decisions, and who are in a persistent vegetative state.
These procedures require notice to the Office of the Ombudsman and
an inquiry by that office.
N.J.A.C. 8:90-2.5 details the procedure to be followed for long
term care residents who are incapable of making healthcare decisions, and
who are not in a persistent vegetative state.
These procedures also require notice to the Office of the Ombudsman
and an inquiry by that office.
The purpose of these New Jersey Administrative Code procedures are,
according to N.J.A.C. 8:90-2.1, to clarify the role of the Office of the
Ombudsman in circumstances involving proposals to withhold or to withdraw
life-sustaining treatment from nursing home patients, pursuant to
guidelines set forth by the New Jersey Supreme Court in the cases of Matter
of Farrell, 108 N.J. 335 (1987), Matter of Peter, 108 N.J. 365
(1987) and Matter of Conroy,
98 N.J. 321 (1985), and the New Jersey Advance Directives for Health Care
Act [N.J.S.A. 26:2H-53 et seq.].
Sharon Rivenson Mark, Esq. is a member of
the law firm of Mark & Santiago, P.C. located in Jersey City, NJ.
She is certified as an elder law attorney by the American Bar
Association approved National Elder Law Foundation.
She is past secretary and current newsletter co-editor of the Elder
Law Section of the New Jersey State Bar Association. She is a member of
the National Academy of Elder Law Attorneys.
She is on the Board of Directors of the Guardianship Association of
New Jersey and is a member of the National Guardianship Association.
She is also co-chairperson of the Elder Law Committee of the Hudson
County Bar Association.
THE ETHICAL GUARDIAN
By
Peggy Dervitz, M.S.W.
A
Guardian is someone who is legally authorized to make decisions on behalf
of another person--an awesome responsibility.
But a good guardian, an ethical guardian, is more than that.
An ethical guardian is a decision maker, a teacher, a counselor, an advocate and a facilitator of rights.
The ethical guardian is constantly trying to achieve the proper
balance between maximizing individual autonomy and protecting the
individual from harm.
We live in a culture that has at its core a fundamental belief in
individual autonomy. Every day, we read in newspapers and magazines how the social
order is changing--how future generations will have to take
ever-increasing responsibility for their career development, financial
future and retirement planning, that government agencies will provide
fewer guaranteed protections than they had in the past.
In fact, the buzzword for the 1990s, as we "cross the
bridge" to the 21st century is personal responsibility.
How do we prepare all of our citizens, including those with
disabilities, for a world in which more will be expected of them?
The journey toward independence for people with developmental
disabilities has been a slow but steady one with gains made in education,
training and habilitation. Helping people achieve a greater sense of personal freedom is
the next step in that journey. The
ethical guardian can and should take the lead by recognizing and creating
opportunities that maximize the ward's self-determination and
self-direction.
In the name of benevolence, we have developed systems of care for
those less fortunate in which "we" know what is best for
"them," thus creating a culture of dominance and dependence that
we are still struggling to overcome. Often we don't realize that such a system dehumanizes both
the care receiver by locking each into well-defined roles--the powerful
and the powerless. We think
that people with developmental disabilities are more independent because
they live in the community and have mastered more habilitative skills, but
so long as "we" continue to define "their reality, we
delude ourselves about what independence really means.
The ethical guardian works in partnership with the ward paying
careful attention to his expressed needs, desires and preferences and
advocates for opportunities in which he can express his autonomy and will.
Limited guardianship is a legal instrument in which the powers of
the guardian are limited to only those areas that are absolutely necessary
to protect the ward from harm. All
other areas of decision making are retained by the individual.
New Jersey has just begun its efforts at defining and implementing
limited guardianship. However,
whether guardianship is plenary or limited, the ethical guardian always
practices limited guardianship.
The case of Eva illustrates how a limited guardianship helped Eva
define her own reality and thus transform herself and her environment.
Eva, now 34 years old, spent fourteen years in a developmental
center before moving to a group home eight years ago.
Since Eva was 18 years old, the state has been her guardian. Recently, Eva was reevaluated regarding her continued need
for a guardian. It was
concluded that Eva could benefit from a limited guardianship.
The consent judgement granted the guardian authority to make
decisions regarding serious medical problems and type of residential
placement. Eva retained
authority to make decisions regarding vocational training as well as
choices pertaining to her daily life, such as daily schedule, leisure-time
activities, friends, food and clothing.
Although the staff at the group home never denied Eva decision
making in these areas, they never encouraged her either, and Eva did not
realize that she was allowed to think for herself and decide for herself
in these domains. Instead, Eva would express her will by refusing to perform
her daily routines if she doesn't want to, but she chooses to.
It's her decision. As a consequence, power struggles are now a thing of the
past. Eva is no longer
considered "noncompliant" and staff do not have to
"manage" her. Limited
guardianship provided validation of Eva's autonomy.
She feels a sense of freedom and free will that she never
experienced before, and the staff give her greater respect.
The culture of dominance and dependence has been transformed to one
in which Eva and the staff learn from each other and create a new and
different reality for both.
Eva teaches us that she suffered by feeling alienated from her own
decision making. Eva wanted to act responsibly and did once her autonomy was
affirmed. For each of us,
life's journey is to become more fully human--to define our own potential
and to work toward making it a reality.
That journey is no different for a person with a developmental
disability. The job of the
ethical guardian is to help the ward create his own reality, one in which
opportunities for the expression of freedom are
maximized.
Peggy Dervitz, MSW, is one of GANJI's founding
trustees, and held the office of Treasurer.
Peggy, with others created "The Model for Limited
Guardianship" which was most recently presented at the New Jersey
Judicial College this past November.
As Regional Director for The Bureau of Guardianship Services she
implements daily "The Model" and works to insure that the
highest ethical standards are upheld in guardianship.
NEW JERSEY APPELLATE COURT APPROVES MEDICAID
PLANNING AND ESTATE PLANNING BY GUARDIANS
By:
Shirley Berger Whitnack, Esq.
Gary
Mazart, Esq.
Copyright
1998 Hannoch Weisman
On July 21,
1998, the Appellate Division of the Superior Court of New Jersey handed
down an opinion approved for publication holding that guardians can employ
the same Medicaid and estate planning techniques for the benefit of their
wards that competent individuals can use.
In the Matter of Manuel L. Labis, an Alleged Mental Incompetent, A-863-97T1,
(App. Div. 1998). In Labis,
a 63 year old man suffered a stroke resulting in permanent brain damage.
He was treated at a facility at a cost of $10,000 a month for over
a year until his wife temporarily brought him home. Subsequently, it was determined that nursing home placement
would be medically appropriate since Mr. Labis required constant care.
Since the marital estate exclusive of the marital home totaled
about $100,000, Mr. Labis and his wife likely would have insufficient
assets to pay for his long-term care assuming he continues to live through
his normal life expectancy. Therefore,
it is probable that he would need Medicaid assistance to pay for the cost
of his care.
His wife
filed a petition to be appointed his guardian and sought authority to
engage in Medicaid estate planning on behalf of her husband, including the
transfer of the marital home to her.
The lower court denied the request on the grounds that the proposed
transfer was contrary to public policy, despite Federal and state Medicaid
law authorizing interspousal transfers of marital homes serving as the
principal residence of the spouse who will remain in the
"community." The
court reasoned on the basis of public policy that if the home was
transferred to the wife and she later predeceased her husband, the house
would pass to the couple's adult children rather than be available to
cover the costs of the husband's care or to reimburse the public who would
otherwise subsidize the husband's care through Medicaid.
The
Appellate Division rejected the lower court's public policy concerns,
finding that the husband would be able to effectuate the transfer as a
spousal protection technique if he were competent and observed that such
transfers are common Medicaid and estate planning techniques authorized by
Federal and state laws. In so
doing, the appellate court employed the doctrine of substituted judgment,
which encompasses the concept that a court has inherent power to treat the
estate of an incapacitated person in the same manner as the incapacitated
person would if he or she was able to make decisions.
The court also relied on the doctrine of "best
interests," which is encompassed in the New Jersey statutes
permitting transfers of property and gifts that are in the best interests
of the ward and are consistent with the actions that the ward might have
been expected to take. The
appellate court concluded that equal protection and inherent fairness
require that an incapacitated person should be given the same opportunity
to employ Medicaid and estate planning techniques as others who are
competent.
The Labis
decision is an important victory for incapacitated individuals who may
require long-term care. Guardians
and competent individuals contemplating asset transfers to quality for
public long-term care benefits should remember, however, that certain
transfers can result in a period of Medicaid ineligibility.
In addition, although there currently is a preliminary injunction
restraining the enforcement of a Federal statute making it a crime to
counsel or assist in the transfer of assets that result in a period of
Medicaid ineligibility, financial planners, accountants, lawyers and other
professionals should remember that the statute has not been repealed.
Therefore, it is strongly advisable to consult with an experienced
elder law attorney before engaging in asset transfers or counseling or
assisting with such transfers for the purpose of qualifying for Medicaid.
Shirley
Berger Whitenack, Esq. and Gary Mazart, Esq. are partners in the firm
Hannoch Weisman, located in Roseland, New Jersey.
This article was reprinted with permission from Hannoch Weisman
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