From Jamie Berke,
Your Guide to Deafness.
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Why Have Services for Deaf in Hospice or Palliative Care?

Communication at the end of life is important for deaf patients, doctors, and deaf patients' families (or the deaf family members of a hearing patient). Recognizing the need for adequate communication services, hospices internationally have set up special programs for deaf and hard of hearing people. These programs usually have interpreters, and may have trained volunteers that work with the deaf people and families. The volunteers are important, especially if no interpreter is available when a deaf patient needs to communicate his needs.

Special Hospice Programs for Deaf People

UNITED STATES

Kentucky

In Danville, Kentucky, offers hospice services to deaf patients in their homes, along with volunteers.

New York

Continuum Hospice Care in New York City's Beth Israel Medical Center has a deaf and deafblind hospice services program. Support is provided by both interpreters, and trained volunteers. This program appears to be an outgrowth of the earlier Jacob Perlow Hospice-Deaf Services Project that was based at this facility.

CANADA

In Canada, the Canadian Association of the Deaf works with the Canadian Hospice and Palliative Care Association "to develop programs to train and provide Deaf support workers for Deaf clients in hospice and palliative care situations."

UNITED KINDGOM

In the United Kingdom, the charity BID has a Specialist Palliative Care Support Service.

Resources for and About Deaf People in Hospice

In Minnesota, the Deaf Hospice Education Project (DHEP) works to improve access by deaf people to hospice services. The DHEP acts as a liaison between deaf patients and hospice services, and between volunteers and hospice services. The Minnesota Association of Deaf Citizens (MADC) on deaf hospice has a brochure that explains the rights of deaf hospice patients, discusses health care directives (known as living wills), and gives examples of how health care directives work. The DHEP has a DVD, "Health Care Directives & Hospice Care," that is signed only (no captions). This DVD discusses the rights of deaf patients, and also teaches hospice staff about deafness.

One book that addresses hospice care for deaf people is Living with Grief: Who We Are, How We Grieve. Chapter 14 in this book, "The World of the Deaf Community," discusses how deafness affects the grieving process, and offers suggestions for hospice workers to improve their services to deaf people. In addition, journal articles addressing hospice care for deaf people are rare. But, two articles are:

• Allen B, Meyers N, Sullivan J, and Sullivan M. "American Sign Language and end-of-life care: research in the deaf community." HEC Forum 2002 Sep;14(3):197-208. (This article can be purchased at SpringerLink.)
• Salladay S, and San Agustin T. "Special needs of the deaf dying patient." Death Education 1984 Winter;8(4):257-69. According to the abstract, this article discusses how a caregiver unfamiliar with deafness may impact the care given to a deaf patient and family. Like the aforementioned book, this article has suggestions on how to meet the needs of deaf patients in hospice.

_Sources:

Healthcare for Deaf and Hard of Hearing Patients: Clinics and Special Services. Accessed May 7, 2008. http://www.cad.ca/en/issues/health_care.asp. Accessed May 7, 2008.

http://www.minndeaf.org/aboutdeafHospice.htm. Accessed May 7, 2008.

Doka, Kenneth J., Davidson, Joyce, and Hospice Foundation of America. Living with Grief: Who We Are, How We Grieve. 1998, Psychology Press.