End-of-Life Care: A guide for supporting older people with intellectual
disabilities and their families.
Published 2000, NYSARC, Inc.
Programs, interventions, and services for supporting staff, individuals
and families dealing with loss and grief.
Our quality of life can be improved by understanding that changes may occur
in our lives due to the death of friends, loved ones and carers, by learning
how to express our losses and by getting support from others. Some of the
strategies that may help accomplish these goals are:
- Education about the End of Life
- Advance Directives
- How Can Staff Ensure Inclusion and Support When an Individual Experiences
- Staff education and training programs
- Crisis teams
- Certified end-of-life training
- End-of-life and Ethics committees
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Education about the End of Life
Educating people about death is as essential as educating them about transportation,
sexuality or money management. Death education may be community-based instruction
emphasizing experiential learning within the natural environment. An experiential
death education curriculum includes field trips to area funeral homes, cemeteries
and houses of worship and can be augmented by guest presentations from morticians,
physicians and clergy. Behavior rehearsal allows people to practice public
and private displays of grief, such as prayer or meditation, conduct at
funeral services, and offering condolences to the next of kin. Learning
of these bereavement behaviors can be enhanced if adults have the opportunity
to practice within the natural environment of a house of worship, funeral
home and cemetery.
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Discussing advance directives with the family and the individual at planning
meetings provides opportunities not only for advance planning but also for
death education. Reviewing the individual’s and the family’s
funeral and burial preferences, health care proxies and wills can promote
participation and communication between the family, individual and staff
in preparing and planning for the inevitable separation. This can be especially
important for people with Down syndrome and Alzheimer’s disease, where
their participation in planning must be obtained while they are able to
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Staff, clergy and families can assist individuals in participating fully
in the grief and mourning process and in all the social rituals and support
that society offers when someone dies. The importance of inclusion is illustrated
in this vignette:
ML was in her late twenties and carried herself with a direct bearing
and rough swagger that on any given day fully displayed all her anger,
confusion or frustration. In between, she also displayed all her joy,
wonder and gratitude. When a worker at her group home died, a woman to
whom she was very attached, it opened a rush of old memories and unhealed
wounds regarding the death of her father eighteen years prior.
ML recalled being excluded by her mother from his funeral and burial
because her parents were estranged at the time. Now she was preoccupied
by her intense desire to visit his grave in order to say “good-bye”
in person. A visit was scheduled. She dressed in her nicest clothes and
brought a small bouquet paid for with her own money. When ML and the staff
arrived they checked with the office and were directed to an older portion
of the cemetery. They easily found the gravesite. ML refused to believe
that was where her father was buried. There was no headstone or grave
marker on the plot, in sharp contrast to all the other graves nearby.
To her, no headstone meant no grave and she refused to leave the flowers
on the plot.
The key to helping ML work through her bereavement was arranging a way
for her to buy a simple grave marker with her own funds. ML took an active
role in the selection process and helped compose the inscription for the
grave site plaque. Once the marker was installed, another visit was scheduled.
Again ML put on her best clothes and brought flowers. Upon seeing it
she beamed at the plaque with her father’s name and was openly proud
of her act of caring for him in his death. She laid her flowers on the
plot, told him her “good-bye” and offered her own prayers.
We took a picture of her kneeling with the flowers next to the marker.
She went home content, consoled, knowing that she could always visit her
Staff in this situation demonstrated sensitive grief work that was essential
to this individual’s resolving and accepting the death of her father.
How Can Staff Ensure Inclusion and Support When an Individual Experiences
- Seek out nonverbal rituals, which are particularly helpful to someone
who may not find comfort in verbal rituals.
- Respect both the avoidance and the choice of photos and mementos which
can be helpful in dealing with loss.
- Minimize major changes for at least a year.
- Postpone assessment of skills and behaviors.
- Assist appropriate searching behavior to support emotional recovery.
- Support formal observance of anniversaries.
- Seek consultation with specialists in bereavement if behavioral changes
occur, such as aggression, depression, regression, mutism, self-injury,
wandering and tearfulness.
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Grief Counseling, Bereavement Services and Support Groups
Counseling for individuals, families and groups is a supportive response
to their loss and grief. Grief counseling may be:
- An anticipatory approach to help prepare an individual, family, staff
or other group (residents of a group home) for a long term illness.
- To help them to deal with the shock and denial that follow a sudden
- To support them in the grief, mourning and bereavement process afterwards.
Counseling may be provided by an agency team, by individuals who are trained
and assigned to do grief counseling (e.g., social workers, clergy, volunteers),
or by staff of agencies that provide end-of-life care (e.g., hospice care
or trained hospital staff).
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If staff are unprepared to deal with terminal illness and death, they will
not permit grieving among the people in their care. Some of the goals of
death education for staff are to:
- Train staff in the dying and bereavement processes.
- Increase skills and competence in talking with individuals and families
about dying and bereavement.
- Increase staff’s knowledge and sensitivity to cultural and religious
- Introduce staff to bereavement resources for support of individuals,
families and themselves.
- Know the value and roles of other community agencies and staff who may
be collaborating in the care of the individual and family.
In addition to learning how to help individuals and families deal with
these issues, staff often find that as a result of death education, they
are better able to deal with their own issues of death, grief and bereavement.
People who have not healed from a previous loss are hesitant to risk another.
Support groups for staff working with terminally ill individuals or grieving
for an individual with whom they may have had a long established relationship
are essential in preventing the emotional, psychological and spiritual numbness
that result from being over stressed by frequent or unresolved losses. One
of the ground rules of such a support group must be that staff are supported
in grieving openly. These goals of such groups are to help people learn
about the bereavement process, reinforce positive coping skills, to encourage
expression of grief and to assess the need for additional support. The goals
of such groups are to help people learn about the bereavement process, to
reinforce positive coping skills, to encourage expression of grief and to
assess the need for additional support.
The Links and Resources Section identifies many
resources for developing staff orientation, education and support programs.
Community resources for staff in-services include hospices, mental health
departments, houses of worship, funeral homes, local colleges and Employee
Assistance Programs (EAPs). There are also many educational films on dying,
grief and bereavement, which are available through colleges, state film
libraries or local mental health departments.
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Other Programs and Services
Some agencies have developed and implemented creative approaches to support
individuals, families and staff:
- Mobile crisis teams: A trained group of staff designated to respond
with support to the individual, carers, friends and others during end-of-life
care, death and grief.
- An agency bereavement service: An agency-based service designed to support
the staff, families and individuals supported by the agency.
- Training programs to certify staff in end-of-life care.
- Contracts or collaborative arrangements with hospitals, hospices, home
care agencies, volunteer carers and other community providers to make
explicit their roles and responsibilities in providing end-of-life care
to individuals supported by the agency.
- Ethics committees or end-of-life committees that review individual cases
to assist in decision-making and care planning.
- Agency self-study: Review and evaluation of agency policies, practices
and procedures to:
- Promote greater agency and network flexibility for meeting individual,
family and staff needs.
- Clarify and support staff roles and responsibilities in end-of-life
planning and care.
- Advocate for adequate funding at agency and network levels for the
care requirements of staff and individuals dealing with death and
- Develop and support program and staff to meet the needs of this
To deal humanely with end-of-life issues, agencies need to initiate staff
training and evaluation of policies, procedures, practices, rules, regulations
and funding that impact end-of-life care. Such evaluation should serve as
a starting point for agencies to institute workable, respectful practices
to fulfill their mission of supporting individuals with developmental disabilities
and their families. The following chapters provide information for training
and for evaluation of end-of-life care.
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Advance Planning: Legal, Medical and Administrative
While information in this chapter is specific to New York, it could apply
to other states/locales. The reader must obtain state-specific information.
Helping people to prepare for practical matters related to the end of one’s
life is an act of care and compassion. However, one needs to work within
the legal and regulatory guidelines as planning progresses. The following
information has been compiled to help individuals, their families, and carers
make informed decisions and personalized preparations. In this chapter is
a wide range of information on preplanning, concerns of advance directives
and DNR’s, organ donation procedures, burial rituals, funeral rites
and financial concerns surrounding death and dying.
The intent of this information is to assist individuals in making informed
preparations, while integrating the concerns of the individual, family and
system of care. The material is general in nature. Please consult with an
attorney and/or financial planner, and your medical care provider, before
completing documents specific to your family circumstances.
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The process of making plans for the end of a life may begin at any point
in the person’s life cycle. Apart from the stresses of an impending
death, there are advantages to making preparations when a person is young
or healthy. In fact, personal and practical matters alike may be addressed
long before an individual becomes elderly or seriously ill. Examples of
- Form of burial: Does the individual or family prefer that the body be
prepared for burial by embalming? Is there a preference for cremation?
- Distribution of personnel belongings. Does the person have a will?
- Burial plot: Has the individual’s family made arrangements for
where the burial is to be? If not, does the family intend to do so? If
not are there alternative plans?
- Funeral director: Has the individual’s family made arrangements
with a funeral director? If not, does the family intend to do so?
- Are there particular traditions or customs, particularly religious or
These are all questions that can be explored at any point in a person’s
life. The preplanning process not only consists of exploring with the person
their wishes, but may also entail legal issues such as advance directives,
including living wills, Health Care Proxies and Do-Not-Resuscitate (DNR)
orders. In fact, a person can have all three, a living will, Health Care
Proxy and DNR order. The elements of the living will can be included in
the Health Care Proxy.
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Supplemental Needs Trusts
Supplemental Needs Trusts (SNT) are an important part of planning for the
current and future needs of individuals with developmental disabilities.
They allow the person with the disability, referred to as the “beneficiary”
of the trust, to purchase additional support and services that are not available
through government programs. If the trust is created carefully and according
to law, the funds therein can be accessed for those services without interrupting
benefit programs. Inappropriate trusts, can, however effect an individual’s
eligibility for Medicaid.
There are three basic forms of Supplemental Needs Trusts (SNT):
- A Third Party or Escher Trust is a trust set up or funded by a parent
or other person who has no legal obligation or duty to support the individual
with a disability. It is often set up through the will of a parent or
other caring relative. If the funds flow from the estate of the deceased
person directly into the trust, they will not affect the individual’s
eligibility for SSI or Medicaid. If, however, the funds are first received
by the individual, they will be considered income to the individual and
in the creation of some other type of a trust to “shelter,”
that income will have to be considered. Such a trust, if directed by a
parent, must be created after the person with a disability has reached
21 years of age. If created before age 21, and the person creating the
trust is a parent, he or she has a legal obligation to support the individual
and the trust will not be considered “sheltered” from affecting
SSI or Medicaid.
- The second type of trust is an OBRA ‘93 Payback SNT, created by
the Omnibus Budget Reconciliation Act of 1993. At the death of the beneficiary
any funds remaining in the trust go to “pay back” Medicaid
for services provided during the life of the beneficiary. This type of
trust can be created by a parent, legal guardian or the court and is funded
with the assets of the beneficiary when the beneficiary under the age
of 65. These types of trusts are often set up where the individual receives
a lump sum such as an inheritance or the proceeds from a lawsuit.
- A Pooled Trust is created and administered by a not-for-profit organization.
Individual accounts are set up in the trust and funds are deposited in
a similar fashion to those of the OBRA ered” from affecting SSI
- The second type of trust is an OBRA 93 Payback Trust. During the lifetime
of the beneficiary, the funds in the trust do not effect the eligibility
of the individual for Medicaid or SSI. Upon the death of the individual
the agency administering the trust may keep all or some of the remainder
in the trust depending upon the provisions in the trust document. Any
funds not retained by the agency are then available to Medicaid to pay
for services provided to the individual.
Each of these types of trusts has its particular legal requirements and
skilled legal assistance should be sought before creating a trust or depositing
funds in one. However, they provide a valuable tool in assisting families
to provide additional services, beyond those provided by Medicaid and SSI,
to a loved one with a disability. As such they are a vital part of any future
care planning for such an individual.
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Advance directives (except living wills), are legal documents which allow
a person to leave orders about his/her health care in case s/he becomes
unable to do so for his/herself. They are designed to help a person exercise
his/her rights to make health care and medical decisions.
A person must be at least 18 years of age to complete an advance directive.
An advance directive provides physicians, family members and friends with
information on how a person feels about treatments such as, but not limited
to, cardiopulmonary resuscitation (CPR), ventilators (breathing machines)
and artificial feeding (tubes). Whether or not an advance directive is completed
by a person is a person’s decision. It may not be pleasant to think
about a serious illness or injury. However, with current medical technology,
advance directives are more important than ever.
Health Care Proxy
In New York State, the best way to protect a person’s treatment wishes
is to designate someone you trust to make these decisions on your behalf.
The Health Care Proxy is codified in Public Health Law, Article 29C. The
Health Care Proxy form is available from your health care provider. (See
accompanying Resource Supplement). It must have the following: identification
of the person writing the Health Care Proxy, identification of the person
by name and a clear statement that the principal wants this person to make
decisions for him or her. Health Care Proxies may state an expiration date.
An individual writing a Health Care Proxy may include statements in the
proxy form itself, or in a living will regarding the medical treatment she
or he may want or not want. Such statements are guidance for both the health
care agent and health care provider. The Health Care Proxy needs two witnesses.
What is a Do Not Resuscitate (DNR) Order?
This is a statement that the individual does not want to be revived by
cardiopulmonary resuscitation (CPR) if she or he stops breathing or if his
or her heart stops beating. It only applies to CPR, not nutrition, hydration
or other medical procedures. There are two kinds of DNR’s: hospital
DNR orders, including orders in nursing facilities and developmental centers;
and community DNR orders, when the individual live in a residence in the
community. It is necessary to complete a community order on a specific NYS
Department of the Health form. DNR orders are commonly written for persons
with life-threatening illnesses in a hospital or nursing facility, or if
she or he is still able to live at his or her residence or at home. A DNR
order can be requested by any capacitated person for him or herself.
The physician has to review the propriety of the order and keep assessing
whether the person is capable of discussing the issue of CPR. If it is a
community DNR order, the community physician must review the order at least
every 90 days. If the person is in a hospital or developmental center, the
physician must review the order at least every 7 days. If the person is
in or transferring from a developmental center or an OMRDD licensed or operated
facility, the director gets notice of the DNR order.
If the physician believes that the person is incapacitated to make a decision
regarding CPR, based upon their developmental disability, a second opinion
is needed regarding the developmental disability. The physician or psychologist
giving the second opinion must have special training in the mental retardation
/ developmental disability field. This training may be found in the Public
Health Law (Article 29B or OMRDD regulation, 14 NYCRR Part 633.18. If the
individual is incapacitated, a surrogate can consent to a DNR order. A surrogate
may consent to a DNR order if the treating physician has found that the
incapacitated individual has one of four medical conditions:
- The person is permanently unconscious, or
- The person is terminally ill, or
- Cardiopulmonary Resuscitation (CPR) would be medically futile, or
- CPR would pose an extraordinary burden in light of the person’s
medical condition and the expected outcome of CPR. A developmental
disability by itself is not an extraordinary burden.
The surrogate can be the health care agent, a guardian, an adult son or
daughter, a parent, a spouse, an adult sibling or a close friend. Having
a DNR order does not mean that a person will not receive other medical and/or
supportive care. The DNR order merely means that CPR will not be used.
If a health care agent is chosen to make medical decisions, the appointed
agent must talk to the treating physicians and make decisions that they
believe are what the individual would have wanted or that are in his or
her best interest. If the person appoints an agent and also leaves instructions
regarding CPR, the agent selected must use these instructions as guidance
DNR orders and specific information may be written as a living will. For
persons residing in OMRDD operated or licensed facilities, one witness must
be a psychologist or psychiatrist familiar with developmental disabilities
and the other witness must have no relationship to the residential facility.
Under state and federal law, individuals have the right to make health
care decisions, including decisions regarding life-sustaining treatment.
This means that people have the right to:
- Request treatment
- Refuse treatment before it is started
- To have treatment stopped after it has started
However, sometimes because of illness or injury people are not able to
decide about treatment for themselves. At times, in fact, a surrogate will
need to be appointed. In New York State the authority of a surrogate to
make such decisions is supported by both statutory and case law.
What is a living will?
If there is no one to appoint as a health care agent or to make decisions
for a person, specific instructions can be left in what is referred to as
a Living Will. (See accompanying Resource Supplement). Instructions in a
living will, even if written, may not be honored by a health care provider.
The living will only indicates a person’s preferences; it does not
name an agent to act on his or her behalf. A living will is a document that
provides specific instructions about health care treatment. Generally, it
is used to declare a person’s wishes to refuse life-sustaining treatment
in certain instances. The individual should state specifically the kind
of treatment they do not want, such as a respirator and the condition/s
when he or she would refuse other types of treatment. The living will is
intended to provide “clear and convincing proof” of the individual’s
wishes. It may be challenged in court.
What is Surrogate Decision-Making
When a person has been determined not to be able to make health care decisions
for himself or herself (a determination of “incapacity”), then
another individual must make any necessary health care decisions for him
or her. In New York State the authority of a surrogate to make such decisions
is prosecuted by both statutory and case law. Usually, it is up to the treating
physician to determine whether treatment requires informed consent. Informed
consent means that the person being treated gets information from the treating
physician about the risks and benefits of the treatment, possible alternatives
to the treatment, and the medical consequences of consenting to/rejecting
the treatment, in a manner that allows the person to make a decision without
coercion or duress. If the person is not capable of understanding all of
the information needed to make an informed decision, then a surrogate decision-maker
must be found who can make such an informed decision regarding the proposed
medical care. If the individual lacks capacity to make health care decisions,
then the surrogate acts in the person’s best interest.
The Public Health Law states that a parent is a surrogate decision-maker
for a minor child. A legally appointed guardian may also be a surrogate
decision-maker for an individual in a New York State Office of Mental Retardation
and Developmentally Disabilities(OMRDD) operated or licensed facility. OMRDD
regulations provide a list of individuals who are looked to as decision-makers
if the individual does not have capacity for decision-making. These are:
- A legally appointed guardian
- An actively involved parent
- An actively involved spouse
- An actively involved adult child
- A surrogate decision-making committee pursuant to Article 80 of the
Mental Hygiene Law
- A court of competent jurisdiction
However, physicians in hospitals are not governed by OMRDD regulations
and may rely on narrow authority of the Public Health Law. An incapacitated
person may not have any of the above described individuals as surrogate
decision-makers. In this case the health care providers may look to others
to make decisions on behalf of the person; for example, other family members
such as siblings, grandparents, aunts and uncles. Although they do not have
legal authority at the present time to give informed consent on behalf for
an incapacitated person, the surrogate decision-makers are often looked
to by community health care providers to make medical decisions.
In New York State the “Best Interest” standard is the standard
by which a surrogate decision-maker determines how to make decisions on
behalf of an incapacitated consumer. The surrogate decision-maker considers
such matters as the relief of suffering, the enhancement of the quality
of life and the preservation of life. The courts have always considered
the preservation of life to be in a person’s best interest. Therefore,
no surrogate decision-maker (unless appointed as a health care agent pursuant
to a Health Care Proxy drafted by the individual while capacitated), may
make a decision to withhold or withdraw life support from the incapacitated
Questions about Advance Directives
Can an Employee of an OMRDD Licensed or Operated Facility Be a Health
Care Agent for a Resident of That Facility with Mental Retardation/Developmental
An employee of an OMRDD licensed or operated facility cannot be an agent
for someone who resides at the facility where the employee works. The employee
may be an agent if he or she works for the same agency at a different site.
No one may be appointed as an agent for more than ten persons.
When Does a Health Care Agent Begin to Make Treatment Decisions for a
A health care agent would begin to make treatment decisions after physicians
decide that the person is not able to do so. The person will have the right
to do so, as long as he or she is capable of making treatment decisions.
What Decisions Can a Health Care Agent Make?
The agent is able to make any health care decision that the person could
have made if he or she was able to decide by him or herself. An agent can
agree that the individual should receive health care or specific treatments
and decide on specific measures that should not be provided, according to
the individual’s wishes. However, if a health care agent is not aware
of a person’s wishes about artificial nutrition and hydration (nourishment
and water provided by feeding tubes), she or he is not able to refuse these
health care measures.
How Can a Health Care Agent Make Decisions?
Instructions can be written on the health care proxy form. An agent must
follow the person’s oral and written instructions, as well as religious
beliefs, if known. If an agent does not know a person’s wishes or
beliefs, the agent is legally required to act in his or her best interests.
The agent also has the right to look at medical records and discuss the
individual’s condition with any treating physician.
Who Should Be Paying Attention to the Health Care Agent?
All hospitals, physicians and other health care providers are legally required
to honor the decisions of an Agent appointed pursuant to a Health Care Proxy.
If a hospital or other facility would object to a decision made by an agent,
such as refusing a specific treatment, they must inform the individual or
agent in advance.
The individual can change the health care agent or instructions in a Health
Care Proxy by just filling out a new form. A person can also have a Health
Care Proxy that expires on a certain date. Otherwise, the Health Care Proxy
is valid indefinitely. The Health Care Proxy stops being effective if the
principal [person who completed the Proxy] refutes the Proxy. In such cases,
someone else has to consent or go to court for consent, if no surrogate
What Are Some Questions for a Person and His or Her Loved Ones to Consider
Before an Advance Directive Is Created?
- What are the individual’s religious and moral beliefs about death
and dying, and how might these influence his or her health care decisions?
- What are the person’s feelings about the use of artificial life
support? Does the person want everything possible to be done to prolong
his or her life?
- What if the person was in a coma with very little chance of regaining
consciousness? Then the person needs to consider how she or he would like
to be cared for if she or he is unconscious or has brain damage.
- The individual should discuss any decisions regarding advance health
care directives with his or her families or loved ones. The individual
or the surrogate should receive all information necessary for them to
make an informed choice regarding medical care. This information should
come primarily from the treating physician.
Ethics and Medical Concerns
Some agencies and DDSOs have developed a standing committee to advise their
director concerning medical decisions, such as do not resuscitate orders
and other advance directives as needed. This standard makes it possible
for each case to be considered individually. The following is a sample of
one voluntary agency’s Ethics Committee, that of the Fulton County
Chapter, NYSARC, Inc. (Lexington Center).
Lexington Center Ethics Committee
Composition of the Committee
- Committee members are appointed by the Executive Director.
- Voting Members of the committee are:
- Chairman - Assistant Executive Director or designee
- Social Worker
- Medical representative(s)
- Other committee members as assigned
- Committee members are asked to serve for three year terms, with a total
of two consecutive terms being allowed (In the event of difficulty replacing
a member, the executive director can extend a length of service if agreed
upon by the member.)
Process of the Committee
The medical coordinator serves as an ad hoc advisor to the committee for
the interpretation of OMRDD Regulations and can consult with the Capital
District DDSO or OMRDD as needed. Following is a summary of steps taken
during this process:
- The physician in charge of the case will generally be the party referring
a matter to the Ethics Committee for discussion, however any interested
party can make the referral.
- The referral request will be made to the medical coordinator, who in
turn will schedule the meeting and notify committee members.
- Representatives of the individual will be asked to attend the meeting
including involved family, the RN for the individual, the program coordinator
or case manager, residence manager or staff; CAB if applicable and Capital
District case manager.
- Representatives of any other institutions involved (e.g. acute care
hospital) would be invited to also attend.
- The “case” will be presented by the physician or nursing
representative, including pertinent medical history.
- After hearing the case and asking questions as needed, the committee
will discuss the case (in private if needed). In most cases a recommendation
would be made at that time for the course of action. If further information
is needed before making a decision, this would be expedited so that a
quick recommendation is possible. (e.g. request for input from OMRDD legal
- A formal “vote” would be taken, with a majority rules standard
being used. Decisions would be placed in writing in the person’s
record by the program coordinator.
- Minutes are kept of committee meetings and are available to members
and governing bodies as indicated.
- Immunity: No criminal or civil prosecution will be taken for reasonable
actions taken in good faith.
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Organ and Tissue Donation
Legal Considerations Concerning Consent for Organ and Tissue Donations
for Persons with Disabilities
Individuals may wish to consider the option of donating organs and tissues
upon their death. Discussion about this issue should be approached in a
sensitive manner and in a way that is understandable to the individual.
Each state throughout the country has adopted with some modifications,
the Uniform Anatomical Gift Act which encourages organ and tissue donations.
How Can Organs and Tissues be Donated?
In New York State, persons who may make an anatomical gift are separated
into two categories by Section 4301 of the Public Health Law which was enacted
in 1993. Either the individual may donate all or part of his or her own
organs prior to death or a person on behalf of a decedent (deceased person)
may authorize an anatomical gift for all or any part of the decedent’s
How Can a Person Make an Anatomical Gift Prior to Death?
If an individual wishes to donate his or her own organs, that person must
be considered of sound mind and eighteen years of age or older. The gift
may be made several ways: 1) a person can either; fill out and sign an organ
donor card (including the portion on a driver’s license for organ
donation) which also needs to be witnessed, or 2) a person can donate this
gift in a will. The person making a gift can either identify the person
or organization which the gift is intended for or the donation can be made
without specifying a recipient or donee. It is important to note here that
a person, and not someone on his or her behalf, can authorize donation of
his or her own organs or tissues through a will. There are times family
members, when making their own advanced planning, may attempt to donate
the organs of their children in their will; this is not legally possible.
All adults in New York State have the right to request, consent to, or
refuse medical treatment, including life sustaining treatment. All persons
who are capable should be encouraged to make plans in advance about how
they wish to live their lives, including end-of-life decisions, and whether
they would like to donate their organs or tissues after they are deceased.
In either case, the gift takes effect immediately upon the person’s
death. At the time of the individual’s death, the family, if available,
should be notified about the wishes of the deceased person to donate his
or her organs or tissue and to whom they may be intended.
Although New York law does not mention any restrictions applying to persons
with mental retardation and/or other developmental disabilities, certain
precautions may be appropriate to consider. The courts have stated that
there is no correlation between institutionalization and the capacity needed
to make certain personal decisions. Therefore, it seems that persons with
disabilities, like anyone else are presumed to have the capacity needed
to make certain personal decisions on their own behalf, unless determined
otherwise. To ensure that the individual has the capacity to donate his
or her organs, it may be advisable to obtain a statement from a psychologist
and/or the consent of a family member of the individual with the disability
in addition to the consent of the individual.
Can Someone Give Permission to Donate Another Person’s Organs and
If an anatomical gift has not been made by the deceased individual with
mental retardation and/or other developmental disabilities, it can be donated
at the time of death by another person who is authorized according to Public
Certain persons are designated by law in order of priority to make a donation
on behalf of the person who is now deceased. A donation may only be authorized
when there is no evidence to the contrary that the deceased person would
have wanted his or her organs or tissue to be donated; or and no one on
the priority list of authorized persons expresses opposition to making such
a gift. Such gifts may not be donated when there has been any reason to
believe that the gift is made contrary to the deceased individuals religious
or moral beliefs.
The following is the order of priority for persons who are authorized to
make anatomical gifts on behalf of the person who is deceased:
- the spouse
- a son or daughter eighteen years of age or older
- either parent
- a brother or sister eighteen years of age or older
- a guardian of the person of the deceased person at the time of his or
- any other person authorized or under the obligation to dispose of the
Who Can Receive the Organ and Tissue Donations?
Public Health law identifies the following as persons who can receive gifts
or organ donations for the specified purposes:
- Any hospital doctor or surgeon for medical or dental education, research,
advancement of medical or dental science, therapy or transplantation;
- Any accredited medical or dental school, college or university for education,
research, advancement of medical or dental science, or therapy; or
- Any bank or storage facility, for medical or dental education, research,
advancement of medical or dental science, therapy or transplantation;
- Any bank or storage facility, for medical or dental education, research,
advancement of medical or dental science, therapy or transplantation;
- Any specific donee (or recipient) for therapy or transplantation needed
by him or her;
- An organ procurement organization meeting the requirements of the Public
Who is Responsible for Requesting an Anatomical Gift?
Hospitals are required by a law commonly referred to as “the required
request law” to request anatomical gifts from surviving family concerning
all suitable candidates.
When it has been determined that a person is a suitable candidate for organ
or tissue donation, the person in charge of the hospital or a representative
at the time of death requests any of the authorized persons, in order of
priority stated earlier, to consent to the donation of organs or tissues.
Who Can Order an Autopsy to be Performed?
An autopsy may be ordered by the coroner or medical examiner where required
by law to determine the cause of death. Public Health law requires the performance
of an autopsy when it is a necessary part of an investigation, or upon written
request of the district attorney, sheriff, chief of police or superintendent
of state police, and when authorized by the deceased person’s spouse
or next of kin.
Performance of an autopsy may also be ordered by the director of a hospital
after notice of death has been given to the next of kin. An autopsy for
reasons other than to determine the cause of death may be authorized by
the next of kin through a written consent, specifying the purpose and extent
of the dissection. This right to authorize an autopsy can only be honored
if the deceased person did not carry an identification card indicating his
or her objection to this procedure.
Who Can Object to an Autopsy?
The deceased person may object to an autopsy by carrying an identification
card which must be signed, dated and notarized and which states opposition
to the procedure.
A surviving friend or relative of the deceased person may object to the
autopsy based on the religious beliefs of the deceased person, or where
there is a reason to believe the procedure would be contrary to the person’s
religious beliefs. However, if the medical examiner or coroner decides it
is necessary to perform the autopsy over an objection, a special proceeding
may be commenced in Supreme Court or County Court for an order authorizing
the procedure. Furthermore, an objection will be disregarded where a “compelling
public necessity” for the procedure has been documented. A “compelling
public necessity” means that an autopsy is essential to a criminal
investigation or homicide of which the deceased person is the victim, or
that a substantial threat to public health requires the discovery of the
deceased person’s cause of death.
Are There Special Procedures When a Person was a Resident of a Mental
When the deceased person was residing in a residence operated or licensed
by the Office of Mental Retardation and Developmental Disabilities (OMRDD),
the Medical Hygiene Medical Review Board is responsible for determining
whether the death resulted from natural causes or is unusual and warrants
This Medical Review Board, which is administered by the New York State
Commission on Quality of Care for the Mentally Disabled, has the authority
to request an autopsy when the procedure is necessary to determine the cause
of death. The request for an autopsy can be made irrespective of whether
such an examination or autopsy was already performed. A report will then
be completed after reviewing the cause of and circumstances surrounding
the death of the person and the report, including the board’s findings
and recommendations, will be submitted to the Commissioner of OMRDD as well
as the director of the facility.
What are OMRDD Death-Regulatory Requirements?
The following are OMRDD’s regulatory requirements for reporting deaths.
All loss of life is considered a reportable incident. The Commission on
Quality of Care for the Mentally Disabled (CQC) requires that the QCC 100
There are required procedures and specific forms for reporting of deaths
of individuals with developmental disabilities, which are per Part 624,
NYSCRR Title 14. All deaths must be reported on the QCC 100 form and sent
to the Commission on Quality of Care within 72 hours of the person’s
death. Mental Health Legal Services must also be notified within 72 hours
in cases where death was caused by abuse. For people residing in a state
operated facility, the Board of Visitors must be notified within three working
Form 147I is used to report a “serious reportable” incident
that was the result of injuries. The 147I is to be sent to the DDSO incident
review coordinator (varies within DDSOs) who receives this form within 24
hours of the death.
The 147A form is used for cases of abuse. The 147A must be sent within
24 hours of the person’s death. A death due to abuse of a person under
the age of 18 must be reported to the Child Abuse Hotline. In the case of
a suspicious death (other than natural), the Commission on Quality of Care
is notified; and the county or city coroner or the medical examiner and
the police are notified. Both of the 147 forms are tracked locally by the
DDSO, and by Quality Assurance at the time of survey.
Parents, guardians, correspondents or advocates and the Willowbrook Class
case manager should be notified within 24 hours of the individual’s
death. For people not in the Willowbrook Class, case managers and day program
staff should also be notified. Some type of “post mortem” or
investigative review for any death, is usually carried out as well.
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When a death has occurred, there are procedures and guidelines that need
to be addressed during this emotional time. Typical concerns at this time
- Did someone contact the family or next of kin. If there are no interested
family members to contact, contact the house staff.
- Prior to death, did the consumer make it known what his or her wishes
were in regard to funeral arrangements (a will/living will/word of mouth)?
- If contact was made with family, did the family express any opinions
regarding funeral arrangements?
- Does the family intend to make the funeral arrangements themselves?
- If no, whoever contacts the funeral director should have the necessary
- Name of deceased (be sure of correct spelling)
- Date of death
- Location of death (hospital, residence, etc.)
- Name, Address, Social Security Number
- Mother’s (Maiden) Name
- Father’s Name (have the deceased individual’s birth
The Following Checklist Can be Useful as a Guide
|Has the funeral been pre-paid?
|Is there a burial account?
|Is there a trust account?
|Is the deceased to be buried in-ground? (Name the Cemetery)
|Is there a family burial plot available? (Name the Cemetery)
|Is there a pre-paid burial plot available? (Name the Cemetery)
|Is there a pre-paid agency burial plot available? (Name the Cemetery)
|Is there a pre-paid donated burial plot available? (Name the Cemetery)
|Was the deceased employed?
|Is there to be a viewing?
|Is there to be more than one viewing?
|Is the casket to be open?
|Is there to be a religious service?
|Is the religious service to be at the funeral home?
| Is the religious service to be at the deceased’s place of worship?
(Name the place of worship)
|Is the religious service to be at the grave site?
If there have been no prior arrangements made for a burial plot, the funeral
director will advise you to contact one of the Cemetery Associations and
arrange for the purchase of a plot, or he will advise you that he can do
this (for a fee). When you have completed the arrangements for the burial
plot, you will advise the funeral director of its location. The funeral
director will discuss the cost of the various options available. If there
is to be a funeral service at a place of worship, the funeral director may
offer to make such arrangements; if not, you will contact the place of worship
and make the arrangements. Contact all interested persons and advise them
of the arrangements you have made including:
- Deceased individual’s family and friends
- Deceased individual’s residential staff
- All departments of the agency
- The deceased’s other contacts: organizations to which the consumer
belonged, such as Senior Citizens, Bowling League, etc. Ask for assistance
if you need it, even if it is only for moral support.
Beyond the procedural aspects of arranging for a funeral, there is also
a financial component. The following information can be helpful in addressing
Facility Burial Account
When the DDSO director is the representative payee for a consumer, a burial
account may be established as part of the Client Cash System. These funds
must be separately identifiable from the person’s other accounts.
Additions may be made to the original principal up to the amount of $1500.
Burial Space Items/Non-Burial Space Items
Burial space items include items such as a plot, headstone, engraving,
crypt, mausoleum, vault, urn and/or other repositories. Local department
of social services will consider as non-burial space items all items not
determined by the Department of Health to be burial space items.
Irrevocable Pre-Need Burial Agreements/Contracts
An irrevocable pre-need agreement is a contract in which money is paid
to a funeral firm, undertaker or cemetery in return for furnishing specified
services/merchandise upon the death of the person to whom the agreement
pertains. There is no limit on the dollar amount of the burial space and
non-burial space items contained in the irrevocable burial contract. Effective
January 1, 1997, all new pre-need burial agreements must be irrevocable
in order to be considered exempt for Medicaid and SSI eligibility purposes.
Revocable Burial Agreements
For SSI eligible individuals, any portion of a revocable pre-need agreement
that represents non-burial space items up to $1500 should be disregarded
as a burial fund after first applying toward the burial fund any life insurance
policies with a combined face value of $1500 or less.
Local department of social services districts are required to pay the burial
expenses for persons in receipt of Aid to Dependent Children [ADC] at the
time of death or for persons who would have been eligible for ADC at the
time of death. If the deceased individual was not in receipt of ADC at the
time of death, an ADC application must be made on behalf of the deceased
Revenue Support Responsibilities
If families/carers are not aware that the revenue field operation staff
are available, they may be told of the revenue agents’ role. There
are specialized responsibilities of Revenue Support Field Office Staff that
can aid family, carers and staff in obtaining the necessary fiscal support
during Hospice care and at the end of life for burial arrangements. Field
Staff are located in each DDSO. (See accompanying Resource Supplement).
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Funerals and Memorial Services: A Planning Process for Rituals
of Remembrance and Bereavement
Within our society a variety of procedures and rituals are used to pay
respect to someone’s life. In death, funerals and memorial services
are long-established cultural practices through which we remember and celebrate
the person who has died, and through which we offer and receive comfort
and consolation in our loss. These services, however much they vary by custom
or circumstance, always present opportunities to support the family and
friends, peers, staff, and others whose relationships were significant in
the life of the individual who has died. The structured nature of these
rituals can help us move through complex emotions and difficult events while
honoring the memory of the person in whose name we gather.
These principles apply to situations both before the death of an individual
occurs and also following a death. Our first responsibility in either circumstance
is to respect the personhood of that individual. Rather than trying to work
from a fixed checklist, these planning principles acknowledge that we are
in a dynamic process of interactions between people. Care, respect, and
communication are critical to this approach. Discussing these three key
factors helps us to identify who should be consulted and what the involved
parties’ desires and needs are. Some of the basic questions are:
What Is/Was the Role of the Individual in the Planning Process?
Were there any advance decisions and plans about funeral or memorial service
arrangements, e.g. selecting music or scripture or readings? If nothing
formal was written, were there discussions or statements or other clues
as to what the person would want?
What Is/Will be the Role of the Family in the Planning Process?
Under New York State law, the next of kin has the formal right and authority
to decide the disposition of the body upon death. Who speaks for the family
is influenced by factors of age, geographic proximity and marital status.
A family’s financial resources may be relevant to the decision-making.
Family customs may be relevant also, e.g. the use of a particular funeral
director or burial in a family plot.
What Is/Will be the Role of Other People Significant in the Life of the
Advocates, guardians, friends, peers, volunteers, staff; the possibilities
for the involvement of non-family members are as rich as the range of relationships
in the life of the individual. Some will be comfortable taking an active
part, and others will defer. We note that some group homes have developed
their own customs to observe the death of an individual, for example, a
tree or shrub planting, or a balloon-release ceremony.
What Is/Was the Person’s Religious or Spiritual Affiliation or Heritage,
and Is/Will it be a Significant Factor?
Is there a religious community in which the person has been actively involved?
Is the person known in that community? Or is the affiliation more a matter
of birth and family record? Are there particular practices or customs that
should be observed? For example, we note the prohibition against cremation
of the body in Judaism; the difference between Reform and Orthodox Judaism;
and the preference for certain funeral prayers in Roman Catholicism and
Greek orthodoxy. Are there identified religious leaders who could assist
in the planning? Is there a religious building or site that would be appropriate
to accommodate people at a service? Will that religious community supply
NOTE: Observing a person’s religious affiliation or
heritage is a way to honor the uniqueness of the individual, respect diversity,
and fulfill one of the commitments in the Bill of Rights promised to people
served by NYS OMRDD.
Flowing from who is/should be involved in the planning process, a series
of basic and interrelated decisions typically are to be addressed:
Where Will the Funeral or Memorial Service be Held?
At a group home? At the site of an agency’s facilities? At the facilities
of a religious group, like a church, or a synagogue? Will there be an interment
at a cemetery following the service, or will it come at a later date, or
will it be private? Is the site architecturally accessible, and are the
staff at the site sensitive to the needs of persons who will attend? Will
there be calling or viewing hours prior to the service, or will the service
the first opportunity for people to gather?
When Will it be Held?
Can it be scheduled at a time convenient for the greater number of people?
How does this affect work and program schedules? What transportation and staff
arrangements must be made? How will variables related to weather be taken
into account? Who will communicate the place/date arrangements, and to whom?
Will there be a death notice in a newspaper? Will there be a designated recipient
of memorial gifts, and who will decide, and how will this be communicated?
Will there be refreshments, a meal, or a reception following the service,
and where; and who will organize it? A series of other questions that don’t
relate directly to the service are likely to be addressed as part of this
process. For example, if the body is to be viewed during calling hours at
a funeral home, there is an opportunity to select clothes for the individual.
All these decision-making points are both opportunities for demonstrating
care and respect for the person, and also are potential points of conflict
between involved parties. The process now carries to planning of the service
itself. The integrity and effectiveness of the planning process ensures the
integrity of the service. Three simple goals help organize the components
of the service:
- To remember and celebrate the life of the person in whose name we gather;
- To comfort and strengthen one another in a time of grief; and
- To respect the religious or spiritual heritage of the individual. The
components of the service are opportunities for the inclusion of people
who gather for the service and are means by which people can express their
thoughts and feelings. The following list of components for a service
is not exhaustive, but suggest the range of possibilities:
- Candles v. Flowers
- Cloths to drape or cover a table used as a focal point.
- Pictures of the person: displayed collage, scrapbook, or portrait,
and projected slides and videotapes
- Readings: from scriptures and other sources, like poetry.
- Music: instrumental or vocal, individual or group, live or recorded.
- Religious symbols: e.g. a cross.
- Objects that were special to, or symbolic of, the person.
- Printed program: could include a biography.
- Prayers: could be led by one person or recited by all, assisted
by use of a program.
- Opportunities for participants to speak openly.
These components can function as a means-to-the-end of inclusion and expression.
For example, flowers could be brought forward at the beginning by a representative
of the family and a representative of a group home to acknowledge the multiple
communities of the person. The program could be illustrated with original
artwork completed in memory of the person, or with the person’s own
artwork. One who prefers not to speak before a group may write a poem or
select a verse from scripture and ask another to read it. A person who is
nonverbal may be included in a variety of ways that contribute to the service;
it could be as simple as holding an object while another described why it
was chosen for the service.
The greater the planners are at being comfortable with that which is genuinely
uncomfortable, the greater the comfort level of everyone else. Not all will
want to participate in a service, and some will choose not to, but all should
be encouraged and supported. Everyone’s needs, will not be met by
this or any process, and that is understandable. The planners and facilitators
will learn from each experience.
Composing and Publishing an Obituary or Death Notice
In our culture, it is common practice to announce the death of a relative
by publishing an obituary or death notice in the local newspaper. However,
widespread the custom, many of us have never had the responsibility of writing
a person’s obituary. If we have been through the experience, it was
most likely for a member of our family. Few of us have written a death notice
in the context of our work responsibilities.
Thinking about writing an obituary for someone we have worked with and
cared for in our jobs is a task that some of us would welcome as a way to
express love and show respect for that individual. Others of us will be
uncomfortable even discussing this and prefer that someone else handle this.
Our reactions to the task will vary based on our working relationship with
that individual, the circumstances of the person’s death, the involvement
of others in the person’s life, our prior involvement in similar work
situations, and our personal experiences.
Recognizing both the opportunity and the challenge that writing an obituary
presents, the following are offered as basic items to consider:
Whose right is it to publish an obituary?
- Remember that under New York law, the legal right of the disposition
of a person’s body belongs to the immediate family. Funeral directors
will respect that right, including the right of the family to choose to
publish an obituary or not.
- There is no obligation to publish a notice of death, and there is no
requirement to do so within a certain time following the death.
What function does a death notice serve?
- A published notification of death is a primary way to inform the public
that the individual has died.
- In situations in which no surviving family members are known to exist,
it may elicit identification of distant relatives. We know of instances
in which the listing of parents in a death notice allowed others in the
family to trace their kinship to the individual who died.
- It is a way to announce visitation/calling hours or a funeral/memorial
service that is not private, or a burial that is not private. It is a
way to inform people as to where expressions of condolence may be directed
or where memorial gifts may be sent.
- Symbolically, an obituary creates a non-official public record for the
individual, demonstrates to others that the person continues to be treated
with respect, and provides the survivors a tangible way to care for the
person one last time.
How is the content of a death notice composed?
- While one person may be assigned to write the death notice, consider
inviting others who knew the person to contribute their suggestions. It
is a way to gather information and also encourages the expression of memories,
thoughts, and feelings, all of which help us begin to cope with our grief.
- Consult the local newspaper to assess the typical format in the community.
A funeral director may also be consulted.
- Consider whether the obituary will be one that is simple and biographical
or more personal. A biographical death notice is organized around facts
like the full name, date of death, relatives, place of residence, and
additional items of that nature. One that is more personal may include
a nickname, adjectives to describe the person, a list of favorite activities,
and identification of special relationships in the person’s life.
The important decision is to choose the style which most honors the person
who died and addresses the needs of the survivors.
- Remember that if the more factual, impersonal style is chosen, there
are other opportunities, like a memorial service, at which people can
remember the individual in personal ways.
- There may be circumstances when it is important to announce the person’s
death before all the funeral arrangements are complete. Two notices are
preferable under these conditions. In the first notice, a simple line
can be added that informs people that arrangements, or the funeral service,
will be announced at a future date. When the necessary information is
obtained, a second notice can run with the full details.
How does an obituary get published?
- In many communities, publishing an obituary in the local paper is a
paid service, like a classified ad, the cost of which is incurred by those
placing the notice. Costs usually vary according to length, the number
of times the notice will appear, and the inclusion of graphic images.
- Typically, a funeral director acts as the intermediary between those
placing the notice and the newspaper. Oftentimes, the fee for the notice
is included in the funeral director’s invoice.
- Remember that newspapers have production timelines and that if you desire
that a notice be published quickly, you must meet the schedule of the
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The better the preparation that has been done with the individual, the
more personalized the approach is during the dying process and during the
burial and funeral procedures. If completed ahead of time, the individual
can determine significant factors such as whom they want as their health
care agent, to whom they wish to leave their belongings, what type of funeral
service they wish to have and where they wish to be buried. Preplanning
also aids family and carers at a very difficult time. Whether death sudden
or follows a protracted illness, advance preparation assists the survivors
and eases some of their pain.