Dr Paulina Taboada
Profesor Centro de Bioetica
Pontificia Universidad Catolica de Chile
Alameda 340 Correo Central 1
Santiago, Chile
Caregivers experience an especially difficult barrier when caring for Deaf patients. Indeed, the difficulties in communication can have an impact on all aspects of end-of-life care and may even result in the patient's loss of self-control and dignity. Hence, caregivers have an ethical obligation to address barriers to communication in end-of-life care. The September 2002 number of the HealthCare Ethics Committee Forum brings an interesting article about issues regarding communication with the deaf at the end of life (Cf. Allen et. al.: American Sign Language and End-of-Life Care: Research in the Deaf Community, HEC Forum, 2002, 14 (3): 197 - 208). A community-based participatory research was performed to develop means of discussing end-of-life care needs of deaf seniors. The study describes the unique linguistic and cultural characteristics of this community and their implications for working with deaf individuals to provide information for making informed decisions about end-of-life care. The paper's conclusion is that the difficulty in accessing information in their own language is a clear barrier that affects the individual's ability to understand his illness and to make decisions about end-of-life care, including choosing a health care agent. Thus, the authors strongly stress the need to make information available in sign-language to deaf patients. A transcription of the following case-description may be the best way to motivate caregivers to read this interesting article:
" Carl, a Deaf person, had a brain tumor that affected his ability to use his hands, arms and body to sign clearly. Despite the tumor, Carl retained some ability to produce facial expressions of American Sign Language (ASL), enabling him to communicate in a limited way with family members. Carl's signs were most readily understood by those for whom ASL was their first language, as opposed to a hearing person who learned to sign. For Carl, a Deaf hospice volunteer made the difference - giving Carl a little enjoyment and lessening his isolation as the only Deaf person in the nursing home. One day (...) in the course of the conversation, Carl began making small gestures of barely legible signs. The deaf volunteer announced, "Carl needs to go to the bathroom!" Carl's hearing vistors (one of whom was an ASL interpreter of 20 years) had not recognized what Carl had signed. "Look at his hand", the Deaf volunteer said, directing their attention to nearly imperceptible movements by which Carl formed "T", the
ASL sign for "toilet". This experience brought home the stakes involved in carring for members of a linguistic and cultural minority at the end of their lives. If the native ASL signer had not understood what Carl was 'saying', Carl's caregivers might have concluded that Carl was incontinent. Diapers would have added to his loss of dignity and control." (Cf. Allen et. al.: HEC Forum,
2002, 14,3, p. 198)
The End-of-Life Care Education Project of the Minnesota Deaf Community is a three-year collabotarion of Deaf and hearing people. It has created programs to recruit and train Deaf hospice volunteers, to provide workshops on health care directives co-facilitated by Deaf people and hospice practioneers, and to develop and disseminate educational materials about end-of-life care topics. From experiences with patients like Carl, the Project team recognized the need for more reliable information about deaf people during end-of-life care.
Dr. Paulina Taboada, MD, PhD
Palliative Care and Bioethics
