Delivering a eulogy using voice design

Alexander O’Sullivan, speech and language therapy team lead at the Regional Hyper-Acute Rehabilitation Unit at Northwick Park Hospital, reflects on hearing a patient deliver her own eulogy using voice design.

J was 72-year-old lady we were seeing with a working diagnosis of myasthenia gravis, who was already experiencing moderate dysarthria. Both conditions cause muscle weakness which can affect speaking, swallowing and chewing.  Despite treatments her condition worsened rapidly, and she developed swallowing and breathing difficulties as well.

In many cases, there is sufficient time to prepare for the eventual loss of functional speech, allowing time for voice and message banking. However, by the time J received an updated diagnosis of progressive bulbar palsy it was too late for voice banking or repair given the severity of her dysarthria.

Voice banking involves the recording of a series of phrases over the course of half an hour which are sent to a private company that will produce a digital voice simulation of the person’s speaking voice.

In the interim, she was writing in a notebook and using emails and spelling for everyday communication. She told me she “loved a gadget” and was very keen to pursue voice design. J had been proud of her Received Pronunciation accent and it was important that her voice reflected her sense of self. So, we firstly trialled a simple text-to-speech system on her iPad.

Luckily, during the COVID-19 lockdowns, J had been recording her thoughts to send to friends using iPhone voice memos. These were still available on the phone, and we were able to find at least 20 minutes of recordings that preserved her pre-dysarthric speech.

Using Speak Unique’s Voice Design, generously funded by the MND Association, we were able to build a virtual voice that our team agreed sounded like the spitting image of her voice. Unfortunately, just as we were about to install it on her text-to-speech device, she rapidly deteriorated, was admitted to hospital and passed away.

J had an individual sense of humour, and her executors agreed that she would have supported the use of her voice “from beyond the grave”. We assisted her executors to use the designed voice to deliver her eulogy at her funeral, as written by her friends. Unsurprisingly, the Terms and Conditions of the voice banking did not cover this situation, beyond stating that artificial voices should be clearly identified as such. The law is also behind the times on how someone’s digital legacy should be regulated after their death. However, her friends and executors all agreed that it was very much in keeping with her character, as she had always displayed a morbid and playful sense of humour.

I had not attended a patient’s funeral before J’s, but given my long involvement over two years felt the need to attend to pay my respects. The funeral was a beautiful event, with musical performances, poetry readings, and the eulogy from J (or at least a computer representation of her voice). The mourners were transfixed by the sound of her voice reverberating around her local church and her friends agreed that the correct decision had been made to use J’s voice, saying:

“I felt totally positive about hearing Jane’s ‘contribution’. It certainly helped that the words were absolutely her. Thinking about it, I’m not sure why I have never heard a person’s voice at the funerals I’ve been to. Oddly, the closest parallel was some years ago when an identical twin (with identical voice) spoke – and I’ve never forgotten it. So yes, I thought that hearing J brought her very close.”

“I thought that it was lovely to hear her sounding like her, when she really hadn’t for much of her last year or two. I thought it was a lovely way to leave us remembering her as her, rather than with the more immediate memory of her sad and scary demise.”

I was struck by how far technology had taken our profession in the past ten years I have been working and wonder about what the next ten years will bring for augmenting the communication of the people I work with.