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 chapter provides information for training
and for evaluation of end-of-life care.
Continue with Chapter 2: Advance Planning: Legal,
Medical and Administrative