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:

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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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Advance Directives

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 participate.

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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 father.

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 a Death?

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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:

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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Staff Education

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:

Know yourself.

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:

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