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Personalised end of life care for people with learning disabilities is the gold standard

Learning disabilities research advocate Irene Tuffrey-Wijne uses her role to ‘shout about’ the need to involve service users in healthcare decisions that affect them

Leading learning disabilities research advocate Irene Tuffrey-Wijne uses her role to ‘shout about’ the need to involve service users in healthcare decisions that affect them

Image of learning disabilities research advocate Irene Tuffrey Wijne
Irene Tuffrey-Wijne

Irene Tuffrey-Wijne has made it her life’s mission to campaign on behalf of people with learning disabilities and autism when it comes to end of life care and bereavement.

Renowned worldwide for her studies on palliative care for learning disability service users, Professor Tuffrey-Wijne has fought to ensure that their needs, concerns and fears are heard and addressed effectively.

Ever since she was a young agency nurse at a large psychiatric hospital in the Netherlands – where she was instructed to insert a nasogastric tube to force-feed a woman with Down’s syndrome whom other staff were restraining – she has fought to ‘turn patients into people'.

3,400

The estimated number of people with learning disabilities who die each year

Source: Public Health England 2018

Setting European standards

By any standards Professor Tuffrey-Wijne is a remarkable woman. She led a European task force which set standards – adopted worldwide – for palliative care for people with learning disabilities, writing the influential European Association for Palliative Care white paper, Consensus Norms for Palliative Care of People with Intellectual Disabilites in Europe, while undergoing chemotherapy as part of her treatment for breast cancer.

Earlier this year she gave her inaugural lecture as chair of intellectual disability and palliative care at Kingston and St George’s University in London. She told the audience that during her five years as a nurse at Trinity Hospice in Clapham, London, she only cared for one patient with learning disabilities. Statistically she should have seen 25, and their absence was due to this group’s needs being ignored. It was this that led her into research.

‘If you’re not paying attention to how people end their lives then you’re saying people’s lives don’t matter. You only get one chance to achieve a “good death” for the individual and for those around them, so we need to start listening to people with learning disabilities. That sounds obvious, but it’s still not happening.’

Desperately needed improvements in end of life care

At a lecture in the House of Lords in June she said improvements in end of life care were ‘desperately needed.’ People with learning disabilities were not being educated about death or even informed someone close to them was dying.

62%

of people with learning disability die in hospital compared to 46% of the general population

Source: Learning Disability Mortalities Review Annual Report (2018)

‘People can’t be involved with decisions about their own life and care if they don’t know what’s going on. Carers and health and social workers need to address this and not shield people from the truth,’ she told the meeting

In August Professor Tuffrey-Wijne spoke at the International Association for the Scientific Study of Intellectual and Developmental Disabilities conference in Glasgow, Scotland, and highlighted findings from her Talking About Dying Survey 2019, conducted in 2017-18, of staff working with people who have learning disabilities in supported living and residential care.

Talk About Dying healthcare staff survey findings

The Talking About Dying study in 2017-18 included responses from 700 healthcare staff. Findings revealed that:

  • 152 had worked with someone who had died or was terminally ill
  • 50% said the terminally ill service user knew what was wrong with them
  • One in ten said the family did not want the service user to be told about their condition
  • One in five were not sure what, or how much, the terminally ill person had been told about their illness
  • One commented: ‘There was a best interests decision meeting, which concluded it was best not to tell him due to stress’
  • One third said a family member should be the one to discuss end of life decisions, while one quarter said it should be the doctor, and a few thought it should be themselves. But when family members and doctors were asked, they thought the onus should be on the healthcare staff 

 

For many staff, caring for a terminally ill person with learning disabilities will be a rare event, but the same cannot be said when it comes to bereavement. Yet all too often care home staff struggle to support residents, either from some misplaced attempt to protect people from harsh realities or possibly because of their own fears about dying.

50%

of healthcare staff working with a terminally ill client thought the individual did not realise they were dying

Source: Talking About Dying survey (2019)

Earlier this year Professor Tuffrey-Wijne had first-hand experience of this when she arrived at a nursing home the morning after the death of a friend with learning disabilities. She discovered none of the other residents had been informed as staff didn’t want to ‘upset’ them, and her friend’s body had been locked in a room.

Frightened healthcare staff

Image of the cover of the illustrative book Am I Going to Die?

‘The staff simply didn’t know what to do. They told me they couldn’t tell her best friend, who had Down’s syndrome, as “she’d be devastated”. I told them she was the first person who should be informed as she might want to say goodbye. It just showed how frightened the staff were. It’s a sensitive area, but we need to normalise these conversations.’

She is passionate about empowering people with learning disabilities and in 2009 she co-wrote Am I Going to Die?, part of the Beyond Words series of picture books.

In 2013 she worked with a co-researcher, Amanda Creswell, who has learning disabilities, to publish guidelines on how to break bad news. Ms Creswell was kept in the dark when her mother became ill so it was all the more of a shock when she was the first to discover her mother’s body.

Professor Tuffrey-Wijne has helped set up a group of people with learning disabilities called GRASSroots, who meet once a month and discuss death and bereavement.

‘People with learning disabilities are the canary in the coal mine. Get end of life care right for them and you’ll get it right for everyone’

‘People ask: “Where does your spirit go?”, “Do bodies feel it when they burn in the oven?”, “Do dead people know they are dead?” These are good questions,’ says Professor Tuffrey-Wijne.

She also ran an eight-week course for people with learning disabilities called Learning to do Research.

Focusing on people with learning disabilities is a way of acheiving the gold standard in care

Image shows learning disability campaigner Amanda Cresswell
Amanda Creswell

‘I was struck by how able people with learning disabilities think about difficult issues. They could be so useful for teaching others.’

As for the future, Professor Tuffrey-Wijne hopes to use her role as a platform to ‘shout about’ the need to involve people with learning disabilities in the decisions that affect them.

She believes the NHS Long Term Plan and its pledge to personalise end of life care is ‘an encouraging start’.

‘People with learning disabilities need the ultimate personalisation so focusing on them is one way to achieve a gold standard in care. Service users are the canary in the coal mine. Get end of life care right for them and you’ll get it right for everyone.’

What to say when talking about death and dying to terminally ill service users 

  • Be aware that someone is at the end of life and be prepared
  • Encourage healthcare staff to talk about death. Use illness and death in TV soaps to prompt conversations
  • Get to know your local palliative care team
  • Use plain language. Don’t say: ‘critically ill’ or ‘very poorly.’ Do say: ‘ill enough to die’
  • Avoid euphemisms such as ‘gone to a better place’

 

Janet Snell is a health writer


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