Why do we need deaf insight in palliative care?
What is deaf insight?
Deaf insight describes understanding the lived experiences of the diverse deaf community. It goes beyond simple awareness and includes insight into the wider psychosocial impacts of deafness, crucially both the positive and more challenging impacts of deafness.
I use deaf to describe any person with any level of hearing loss. This may be diagnosed, undiagnosed and sometimes even unrecognised. It is important to recognise a variety of preferences within the deaf community for different language choices around deafness, but I use deaf as the term to describe the entire community. I recognise there is more within the deaf community that unites us than divides us, but the community is also very diverse particularly in terms of communication styles and preferences. We follow the social model of disability and avoid impairment based language¹.
Why is deaf insight critical in palliative care?
In the UK 50,00 children are deaf², 1 in 4 adults in the UK and this rises to 80% of the over 70s³. Despite deafness being very common, there is no specific research or writing published in the UK around the challenges deaf people face in palliative care settings. Yet I am struck by the fact we are the speciality that need it the most.
Communication is key
In palliative care, nuanced and emotive topics are regularly explored, from advanced care planning, resuscitation, clinically assisted nutrition and hydration and many others. Empowering patients to be involved in their care requires inclusive and accessible communication.
One chance to get it right
As a speciality, we recognise early involvement confers benefits for the patient and those around them. However, sometimes the time we have with patients is short or rapidly changing. So, we often have one chance to get it right and understand and meet their needs. This means palliative care services need to be set up to meet the needs of deaf people, before the individual has even engaged in the service.
Wide ranging impact on the patient and those around them
Palliative care places the individual at the centre of every decision, but people are at the centre of their own network. The experiences of the individual within our service, will have a huge impact on those around them and particularly for how they live and grieve whilst their loved one is dying and after they have died. So, getting it right for everyone is crucial.
More likely to have deaf patients with complex communication needs
As a speciality, we are more likely to have deaf patients with complex communication needs. As deaf people who have been deaf prior to their palliative diagnosis deteriorate, they may find is harder to communicate using long developed communication skills. Speech reading becomes more challenging when you are more fatigued, or if someone loses motor function expressing yourself clearly in sign language will become harder. Rarely, some malignant conditions can directly damage cochlear implants by infiltration affecting their function.
Presbycusis is very common in the adult palliative care population. However, as individuals deteriorate, they may have other medical priorities so are less likely to attend their GP or audiology to have their hearing assessed. Also, they may be too unwell to engage with these services or others to manage simple reversible causes of hearing loss such ear wax services.
Many palliative conditions also put people at risk of new or sudden onset hearing loss. Sudden weight loss is common and can cause collapse of the eustachian tubes and related hearing loss⁴. Some drugs commonly used in treatment of infections or as anti-cancer treatment are known to be ototoxic and cause irreversible hearing loss. Additionally, direct effects of some cancers can cause acute hearing loss⁵.
For children and adults
It is well recognised that many adults experience hearing loss. But is crucial to understand the needs of the paediatric palliative care population. Many children and indeed their families who have palliative care needs, will be deaf and may have other communication needs, for example they may have sight loss, be neurodivergent or have a learning disability. It is crucial to ensure they have early access to inclusive support which recognises the impacts and intersectionality of deafness.
What needs to change?
Improve understanding and access for sign language users
When delivering advanced care planning training for deaf staff at a deaf support service many years ago, I first realised the diversity of language used in British Sign Language (BSL) around palliative care and hospices particularly. Since I have worked hundreds of deaf people and interpreters and spoken about my work in palliative medicine. The diversity in how hospice is signed ranges from “nursing home” to “hospital” to “hospital where people spend the last days of life”. This lack of clarity exists across language used in palliative care and also across other minoritised languages which don’t always have agreed ways to express palliative care or hospice.
Imagine, being a deaf BSL user and your doctor has given you a palliative diagnosis. You have years to live but your doctor thinks that you might benefit from a hospice admission for complex symptom control. But then what you understand through the interpreter is that the doctor thinks you should go to a nursing home or to a hospital where people spend the last days of life.
There is lots of excellent BSL glossary work being done and it is crucial this is done in palliative care to ensure deaf BSL users are supported to understand the meaning of palliative care and to avoid stigma and fear.
Additionally, BSL interpreters need this support and training to understand our practice but also ensure they have the right access to supervision when working in palliative care settings as these can be extremely emotionally challenging.
Upskill and improve confidence in staff
Deaf insight is a crucial skill for all staff working across palliative care, not just doctors and nurses, but the entire allied healthcare professional team and non-clinical staff who interact with patients and those around them. All staff need to understand how to recognise hearing loss, how to adapt their communication and be culturally sensitive.
If a doctor does not understand that there is no agreed BSL sign for hospice, how can they work collaboratively with deaf people and interpreters to have an inclusive conversation? Additionally, deaf accessible communication is crucial for all staff, particularly as many patients and those around them will have an undiagnosed or unrecognised hearing loss. We should practice deaf insightful communication for all; it will benefit those deaf patients but will have additional benefits for many individuals with other information or communication needs. This should be done through training informed by those with lived experience for all staff.
Develop management and support of reversible, undiagnosed and sudden hearing loss
As aforementioned, there is a complexity in the palliative care patient population as there are many people with reversible, undiagnosed or sudden onset hearing loss. Palliative care is in a powerful position to support these individuals with the right skills, equipment and preparation.
All patients should have an assessment of their hearing and communication needs on first assessment. This truly to me can be as rudimentary as asking their subjective experience of their hearing, an objective clinical opinion of their hearing and otoscopy. This takes very little time, should be a core part of a holistic assessment and can be transformative for rapport building, accessible communication and ongoing patient care.
This simple assessment may identify simple reversible causes of hearing loss such as ear infections or ear wax which can be easily treated. Removal of ear wax has in my own practice helped countless patients communicate with those important to them and improved other symptom burdens such as itching or sensation of blockage. Improving ear wax removal has been a core part of improving the experiences of deaf people. Unfortunately, most ear wax services are in the private sector, require outpatient review and NHS services have long waits- all of which can be very challenging for palliative care patients⁶. So, it is crucial for palliative care services to build this into their practice.
Many services will find once they build assessing hearing into their core practice, they are recognising many patients with hearing loss but are then stuck what to do next. This is especially challenging if a patient is too unwell to wait for an audiology assessment or can’t get to their local audiology centre. Improving access to community audiology and relationships between palliative care, ENT and audiology helps this, to ensure patients are seen quickly or if possible, in their own homes. Additionally, where time is short, especially when someone has a sudden onset hearing loss, services should invest in rudimentary personal amplifiers as a bridge to provide temporary hearing support. These won’t help everyone but have been used to very positive effect to allow people to hear the words of comfort and love from those important to them.
Wider improvement in health services
Palliative care does not exist in silos. We deliver the best care when we work collaboratively with other specialities and more so than others, our patients are likely to have been well known to other specialities for some time before meeting palliative care. Therefore, it is crucial these principles of deaf insight exist across all of the healthcare system to improve patient’s outcomes and experiences in all specialities and in turn this will improve their experiences in palliative care too.
This will also improve access to palliative care, as many deaf people misunderstand the purpose of a referral to palliative care due to poor communication or they are reluctant to engage in new services due to previous traumatic healthcare experiences with communication challenges.
Conclusion
Deaf insight is crucial for all healthcare services, but is critical in palliative care. We have one chance to get things right to allow deaf people to live and die safely and we cannot wait to make changes to make this happen.
References
1-BATOD. Let’s change the language culture around deafness; eradicating the use of ‘hearing impairment’ [Internet]. Available from: https://www.batod.org.uk/wp-content/uploads/2024/11/Positive-terminology-deafness-FINAL-Nov24.pdf
2-Deaf statistics | National Deaf Children’s Society [Internet]. Ndcs.org.uk. 2024 [cited 2026 July 10]. Available from: https://www.ndcs.org.uk/about-us/news-and-media/deaf-statistics
3-Prevalence of deafness and hearing loss - RNID [Internet]. RNID. 2024 [cited 2026 July 10]. Available from: https://rnid.org.uk/what-we-do/data-and-evidence/deafness-and-hearing-loss-prevalence/?gad_source=1&gad_campaignid=17858488263&gbraid=0aaaaad4mitds_bo4ysbdlkpq7unayi0sx&gclid=cj0kcqjwjvfsbhdparisaeiopssjkgqaunyzu129phrr3xqvbmkmp7qchriaxiw9ywng1u_cz31azfgaagapealw_wcb
4-Abreu C, Silva M, Weber R, Pignatari S, Stamm A, Pascoto G. The Impact of Acute Loss of Weight on Eustachian Tube Function. International Archives of Otorhinolaryngology. 2014 July 18;18(04):376–9.
5-Head and neck cancer | Hearing [Internet]. www.macmillan.org.uk. [cited 2026 July 10]. Available from: https://www.macmillan.org.uk/cancer-information-and-support/impacts-of-cancer/hearing-after-head-and-neck-cancer-treatment
6-Our ear wax removal campaign - RNID [Internet]. RNID. 2022 [cited 2026 July 20]. Available from: https://rnid.org.uk/get-involved/campaign-with-us/ear-wax-removal-crisis/