Palliative Care for the Hearing Disabled
– Dr. Priti R. Sanghavi, Ahmedabad
3rd march is celebrated globally as ‘World Hearing Day’ by the World Health Organisation (WHO) since 2007. The theme for this year (2022) is ‘To hear for life, listen with care’, which urges people to focus on the importance of safe listening to maintain good hearing across one’s life.
The WHO estimates that globally,hearing loss affects 538 million people; while in India, an approximate 63 million people are affected by moderate to severe hearing impairment with an estimated prevalence of 6.3%. The NSSO survey reports that 291 persons per one lakh population are currently suffering from severe to profound hearing loss (NSSO, 2001). The prevalence of hearing loss increases with the age with most elderly people experiencing it.
Hearing deficiency may be congenital or acquired. Types of hearing loss are sensory neural, conductive and mixed; most common being sensory neural. Irrespective of types and etiology, hearing loss is a chronic impairment of one of the special senses (vision, smell, touch, hearing, taste). Hearing impairment not only affects the day-to-day life of that particular individual, but also affects their families / caretakers who face difficulties while taking care of such patients. These individuals, irrespective of their age and their suffering from their other existing associated illnesses, require long term and specialized care.
Palliative care specialists / generalists, therefore have a significant role towards improving the quality of life of those patients suffering from chronic illnesses, along with extending care for their families and caregivers, as both symptom management and improving the quality of life of patients come right under the ambit of palliative care. Palliative care uses a team approach to offer a support system to help families / caregivers cope during their loved one’s illness, and help address the needs of these patients’ and their families / caregivers by well integrating the principles of psychosocial and spiritual aspects of care into the mainstream patient care. It also creates an ecosystem to help patients’ live as actively as possible along with ongoing disease modifying therapies. As Palliative Medicine is a newer specialty, its application, acceptance and utilization in clinical set-ups, is limited to very few chronic illnesses.
Practical integration of palliative care for children having hearing loss can be done by establishing alternate means of communication, coordinating with health care teams, becoming familiar with the child’s environment at home, assessing and addressing the child’s current and future functional status, enquiring about the family’s financial burden, extend support towards enrolling the child in special schools and offering assistance from social services to procure hearing aids or towards any other anticipated needs.
It is also noted that cancer patients irrespective of age who are receiving long term chemotherapy, patients who are on Ototoxic drugs for long periods, individuals’ working in noisy environments are at a greater risk of developing hearing loss. The early identification, assessment and relative management of such patients’ is also a part of the multidisciplinary approach of palliative care.
A study from the United States of America reports that 80% of people above the age of 80, have mild to moderate hearing loss. The most common reason being sensory neural defects. Such patients are often mistakenly diagnosed for dementia or cause immense confusions to their families /caretakers, which ultimately leaves the patient feeling helpless and lonely.
Timely identification, accurate diagnosis, a thorough understanding of their needs, appropriate usage of the relevant devices and thereafter ensuring their integration with a palliative care team for patients like these (via. the annual audiometric assessment), from old age homes, geriatric care services and hospice centers will not only help the patient to improve his / her quality of life, but also help them have effective communications by narrowing the gaps in their communication with their loved ones.
The limitation in having effective communication by the palliative care teams may initially present itself as one of the biggest barriers to delivering quality palliative care to such patients’ who are unable to hear what is being offered as communication is one of the most important pathways to deliver quality palliative care. In such scenarios, facilitating and ensuring the constant, active and consistent participation of the family members / caretakers along with the members of the palliative care team (palliative care physician, counselor, social worker, occupational therapist, and trained nursing staff) can make communication effective.
I leave you with a few pointers to be borne in mind while interacting with hearing impaired patients:
- Ensure that you are facing them, are seated either close to the patient or directly opposite to them, and not speak into their ear as almost every hearing impaired patient relies on visual information or lip reading for their communication
- Ensure that the room is as quite as possible with the doors shut and the television switched off so that geriatric patients may use his / her maximum ability to hear
- Talking with low volumes / low pitch, encouraging the use of hearing aids and rephrasing using other words may make hearing easy for these patients
- Avoid communicating with only the patients’ families or their caregivers to prevent issues of patient isolation
- Most importantly, have patience and always wear a smile
About the Author: Dr. Priti Sanghavi is the In-charge Deputy Director, and the Professor and Head, Department of Palliative Medicine, at Gujarat Cancer and Research Institute, Ahmedabad. She is also the Nodal Officer, at the Saurashtra Cancer Care & Research Institute, Rajkot, and the President of the Indian Association of Palliative Care – Gujarat Chapter.