Listening to those who cannot talk (Margaret Hook)

There is an old Yiddish proverb: “A wise man hears one word and understands two.” But what do we know when a patient cannot speak any words and how can we help?

In my practice at St Peter’s Hospice, there are frequently times when patients, many in the last few days of life, cannot express in words their thoughts, needs or concerns. Yet this information is crucial for making prescribing decisions. The site of their cancer might be the cause — tumours of the brain, head and neck leading to impaired cognitive function or physical changes affecting speech.

Co-existing learning difficulties or dementia can also affect communication. And, increasingly, hospices care for other terminal, non-cancer patients, such as those with motor neurone disease whose neurological deterioration affects speech.

For pharmacists, communication skills training tends to focus on clarity of instruction to patients about their medicines (perhaps considering Braille aids on dispensed containers and using interpreters for patients whose first language is not English) and how to advise on self-care. So my education did not prepare me well for non-verbal communication; but the wisdom of others and on-the-job learning (including improvisation) have been valuable in developing my understanding of what can be achieved.

Simple tools can support communication — alphabet boards; picture boards with diagrams of items of daily living (eg, cup, food, toilet, bed); and gradations of “smiley faces” to express the intensity of pain and the effectiveness of its relief.

A “lightwriter”, which converts typed words and codes into a synthesised voice, can help some with motor neurone disease, and local speech and language centres can offer expert support and solutions for complex cases.

As a patient becomes less well we always use his or her facial expression and response to movement as proxy measures of pain or anxiety. But people with dementia or learning difficulties may not identify that pain, or its origin, is the cause of their distress.

They reflect its intensity through non-verbal or physical indicators — shouting, pacing, withdrawal, hitting out, night-time distress, screaming, crying, eating difficulties, aggression or confusion. The Joseph Rowntree Foundation has produced guides for clinicians and care staff about recognising and managing pain for those with learning disabilities who also have dementia.

So what have I learnt — to be alert to the complex and diverse range of ways a person may be trying to communicate  and to respond, at times with ingenuity.

 

 

Margaret Hook is principal pharmacist for St Peter’s Hospice, Bristol