Developing hospice bereavement programs for deaf patients and families

Deaf Community and Its Need for Hospice Service

For many people, being deaf or hard of hearing is a foreign concept. But for many others, being deaf means being a part of a close-knit community with a lifestyle, culture, and language all its own. It is this gap between the hearing public and the deaf community where communications can falter and challenges arise.

One significant challenge is the need to support deaf individuals in a medical environment, specifically hospice. According to the National Cancer Institute Website, a hospice is defined as "a concept of care that involves health professionals and volunteers who provide medical, psychological, and spiritual support to terminally ill patients and their loved ones. Hospice stresses quality of life -- peace, comfort, and dignity. Hospice services are available to persons who can no longer benefit from curative treatment; the typical hospice patient has a life expectancy of 6 months or less." This level of care requires extra sensitivity and compassion for the patients and their families, to not only ensure that the patients are comfortable and pain-free but that both the patients and family members have the tools they need to cope with the grieving process. In this situation, if the medical staff members are unable to communicate with their deaf patients and/or their families, it can complicate an already distressing situation and cause further emotional pain.

"Do Deaf people have an opportunity to convey their emotional turmoil to loved ones and friends around them? Many do not. And the fact of the inability of many hearing people to understand the communication of Deaf people alters the grieving process by making it more difficult for Deaf people to express what is inside" (Zieziula, 1998, p. 193).

All individuals, regardless of their hearing capacity, deserve to not only be treated fairly and with dignity while ill, but deserve clear communication in a language they understand. For this reason, it is essential to create a comprehensive bereavement program designed to address the needs of deaf individuals in hospice care. This paper will address what it means to be deaf, the need for this type of program and what it intends to accomplish, as well as how it will be marketed, funded, and evaluated.

Deaf defined

Outside of the deaf community, deafness may be perceived or defined as a "condition." But for many deaf people, the term "disabled" does not apply, as their hearing status is not a disability, but rather a key part of who they are. These distinctions may confuse the hearing community; however, the deaf community is very specific about how they define themselves and how they would like to be defined by society. As stated on the D.E.A.F., Inc. Website, individuals may identify themselves in the following ways:

Deaf: Typically indicates hearing loss is severe and occurred before the learning of formal language; primary communication mode is visual or tactile (for Deaf-Blind persons with little or no residual vision.) Strongly identify with core values of Deaf community.

deaf: Same as above, but without strong identification with core values of Deaf community.

Hard of Hearing: Indicates the presence of some residual hearing that may enable an individual to use spoken English with amplification. Hard of Hearing persons may also use a manual form of communication, and may or may not identify with core values of Deaf community.

Late-Deafened: Indicates the onset of hearing loss occurred after spoken language competence is fully developed. May or may not identify with core values of Deaf community.

Just as there are a number of ways a deaf individual may identify his/herself, communication style may also be highly individualized. Each person's educational experiences, peer influences, and cultural/linguistic identity of family of origin may play a part in his/her unique communication style. Furthermore, individuals might display characteristics from more than one of the above groups (D.E.A.F. Inc. Website.)

For those deaf people who use manual language, American Sign Language (ASL), is the preferential choice. ASL has its own distinct grammar and syntax. Also, other people may use a manually coded form of English. In formal situations, manual language users tend to communicate with non-signing persons through the use of qualified interpreters (D.E.A.F. Inc. Website.)

Additional communication methods include the use of assistive technologies such as speech and speech reading. Plus, for those individuals who choose to use their residual hearing by communicating orally, amplifying devices such as Computer Aided Real-time Transcription (CART) may be used.

Deaf individuals may also communicate via an interpreter. An interpreter is a certified professional who mediates between two cultures and languages, yet does not participate in the interaction. It is critical that an interpreter adhere to a strict professional Code of Ethics and that he/she treat each conversation as neutral and confidential (D.E.A.F. Inc. Website.)

The program: breaking down barriers

The purpose of this program is to meet the challenges stated above by providing hospice services that cater to the unique needs of deaf individuals. This will be accomplished through the use of educational classes and workshops provided in churches and community centers. Deaf persons skilled in ASL will be trained as volunteers and must be available on call when a deaf patient is admitted to the facility. Only those individuals with a high level of signing skills will be accepted. The volunteers will also be asked to accompany the patient to doctor visits as well as make needed home or hospital visits. However, volunteers will not replace certified interpreters who accompany the patient on office and doctor visits. Grief counselors will also be interviewed and possess ASL skills, and may include pastors, ministers, priests, and other religious clergy who serve the Deaf community.

Another vital part of this program will be to generate program awareness throughout the local deaf community by providing advertising and educational materials and possibly a Website.

Community outreach classes will also be a vital component of the program. These classes will help promote program awareness among medical facilities and staff and will also provide a resource for those patients needing deaf services.

In addition, deaf bible study groups and support groups will be offered to assist with the grieving and healing processes. It will be encouraged that family members of deaf patients be included in these classes to help provide the support their deaf family member and/or friends need.

Program staffing

Educated individuals, grief counselors, and religious clergy will make up the program staff. Volunteers will be taught by the core staff members with hopes that these individuals will comprise an extension of the staff. Additional volunteers may include current and retired medical staff as well as volunteers from schools, non-profit organizations, churches, etc. The intention is to find enough volunteers to help keep costs to a minimum.

Program funding

The program will be funded through a variety of efforts. Local churches and churches aware of Deaf needs will be solicited for donations and to perform community fundraisers. Donations from foundations, Deaf organizations, and private organizations will also be sought. Program staff will communicate with the overall Deaf community to generate other fundraisers such as bowling tournaments, sports events, craft and bake sales. Additionally, significant time will be dedicated to grant research. Some of these research resources will include:

Grants for Mental Health, Addictions, and Crisis Services: A published resource that provides information on more than 6,300 grants from 880 foundations for a variety of facilities, including support groups and bereavement counseling.

Grants for People with Disabilities: A publication that offers more than 8,200 grants made by approximately 940 foundations including a range of needs from blindness and deafness to family counseling and general care.

The Complete Directory for People with Disabilities: A Comprehensive Source Book for Individuals and Professionals. This directory includes information about national and state agencies and associations, foundations, camps and exchange programs, living centers and facilities, conference and trade shows and more.

Directory of Grants for Organizations Serving People with Disabilities: A Reference Directory Identifying Grants Available to Nonprofit Organizations: Short entries are provided that describe foundations that provide funding for accessibility, blind, deaf, developmentally disabled, and elderly programs and services (to name a few).

Program marketing: getting the word out

The key to success for any program is effective marketing. To generate interest and promote this program, advertisements will be placed in Deaf bulletins and monthly newsletters, Websites, newspapers, and agencies for the Deaf. Since word of mouth is very popular among the deaf community, additional advertising will also be pursued at local funeral homes, churches, universities and community colleges, community centers and clubs, police and fire departments, city hall, and the chamber of commerce. Along with advertisements, educational literature such as informative brochures and fact sheets will also be displayed where appropriate.

Educational opportunities will also be offered to not only promote the program, but to teach sign language to the interested public and potential volunteers. These educational workshops will be taught by ASL interpreters and/or Deaf people who are affluent in the language. Other workshops will be designed to educate about bereavement, provided by religious clergy, grief counselors, and professional teachers.

To further market the program, staff members and volunteers would be encouraged to participate in events such as Deaf Awareness Week. Also known as the International Week of the Deaf, Deaf Awareness Week is the last full week in September is Deaf Awareness Week. The About.com Website describes this increasingly popular event, "The purpose of Deaf Awareness Week is to draw attention to deaf people, their accomplishments and their issues. During this week, many deaf organizations hold activities to celebrate and conduct public information campaigns to educate people about deafness. Companies and agencies often mark the event, and schools, colleges, and universities hold awareness events."

If funding allows, a program Website will also be created. The Website will include the above items and more, such as information on the program mission and contacts, training, publications, newsletters, and upcoming events. The intention of the Website is to provide a central resource that will allow program staff to connect and communicate with the deaf, as well as provide volunteers and medical staff with essential program information. One example of a similar existing Website is the Rochester Medical Center Website, part of the National Center for Deaf Health Research, located at: http://www.urmc.rochester.edu/ncdhr.

Assessing program effectiveness

Evaluating a program's effectiveness is just as critical as all the other program elements. Without proper feedback and input, it is nearly impossible to understand what necessary improvements must take place. Therefore, it is our goal to provide a program that incorporates the feedback of the deaf community by providing surveys and evaluation questionnaires to deaf individuals as well as churches and local organizations. Focus groups will also be organized to determine program effectiveness across different aspects of care.

Positive momentum

This program recognizes that there are numerous challenges facing the deaf community today. Add to that major communication and language barriers and lack of consistent, statistical knowledge of the deaf population, and it can be a tricky landscape to navigate, especially when implementing new programs related to hospice services. But the good news is that positive momentum is building, and with programs like the one being proposed, opportunities to connect with and support deaf individuals are on the rise. State and federal programs, although rudimentary at this point, are being embraced across the United States.

One such program, known as The Deaf Community Health Worker Initiative, is based in Minnesota and exemplifies how an organization can break down the communication barriers between deaf individuals and health professionals. In a recent study, program feedback was provided from family members, patients, providers, and interpreters, indicating that they are on the right track by increasing patient understanding, trust and empowerment, improving adherence to recommended care, and helping providers better understand the barriers facing Deaf patients ("Deaf Community Health Workers Provide Education and Support to Deaf Patients," 2005).

In addition, Gallaudet University, the only institution of higher learning for the deaf in America, continues to be a positive example of deaf education and empowerment. Also, the Jacob Perlow Hospice, serving the Bronx, Queens, Brooklyn, and Manhattan in New York, is paving the way for other organizations by establishing the first major U.S. hospice program for the deaf and hard of hearing community. With a $75,000 grant provided by the Open Society and its Project on Death in America, the Jacob Perlow Hospice-Deaf Service Project supplies specialized care to terminal patients as well as assists deaf patients with deaf family members, deaf patients with hearing families, and hearing patients with deaf family members. Licensed and certified in 1988, the Jacob Perlow Hospice has since served more than 3,900 patients and family units.

There's no doubt that a communication gap exists between the hearing and the deaf community. But with through the proper structure, education, staff, volunteers, and marketing provided by this program, we can get one step closer to supporting a misunderstood population during their most sensitive and crucial time of need.