Communication experiences of Deaf and hard-of-hearing people facing the death of a loved one

Communication barriers prevent Deaf and hard-of-hearing individuals from participating in the dying process with their loved ones. Using arts-based research, this enquiry examined end-of-life communication, situations of death, and rituals for closure by capturing video-taped narratives in American Sign Language. Deaf and hard-of-hearing participants provided candid and moving portraits of their experiences with health care workers, extended family, and funeral and memorial events. Their narratives formed the basis for a fully accessible American Sign Language, sound, music, voice, and captioned documentary film entitled, Talkable. Excluding Deaf and hard-of-hearing people from participating in end-of-life processes with those they love has a serious impact on their ability to process their grief and integrate their loss. The research found Deaf and hard-of-hearing mourners need specific resources surrounding death and loss to prevent further trauma or wounding. In particular, they need access to health care and funeral industry professionals who are familiar and sensitive to the social and cultural issues affecting end-of-life issues. Hiring American Sign Language interpreters for anyone facing the death of a loved one or facing death themselves is essential for receiving adequate information and communication. Deaf, deafened, and hard-of-hearing individuals need accessible services whether they are the receivers of care or family members of those receiving care. Ideally, training Deaf and hard-of-hearing support workers in end-of-life processes and palliative and hospice services would provide the necessary linguistic and cultural components that hearing individuals accessing health care receive.