Person-centred care for clients at the end of life

A team of learning disability nurses has created an end of life care package for clients that is helping them have a good death while supporting them to live their lives to the full.

How end of life care package Doing It My Way supports having a good death while living life to the full

Learning and development adviser Nicky Lyall presents the Doing It My Way programme
 Picture: John Houlihan

A team of learning disability nurses has created an end of life care package for clients that is helping them have a good death while supporting them to live their lives to the full.

Doing It My Way, a teaching and support planning programme developed by the team at St Anne’s Community Services, is designed for people with learning disabilities.

Team member learning and development adviser Nicky Lyall says: ‘Clients were admitted to hospital with unrecognised conditions and cared for in unknown environments by carers who were not specifically trained for learning disability support.

‘There have been countless episodes of individuals with learning disabilities dying unnecessarily in acute settings where preferred methods of communication were missed. Some people died in pain with their symptoms poorly managed.’

Six months

Is the length of time given between medication reviews to spot deterioration

Nurses and support staff thought that they had let people down.

‘We wanted to support adults with learning disabilities in a residential nursing setting to achieve the best outcomes throughout their lives as well as at the end of their life,’ says Ms Lyall, who was commended in this year’s RCNi’s Learning Disability Practice Award.

The team gained Gold Standards Framework accreditation, but the nurses knew that their system of work was not a perfect fit for people with learning disabilities and began developing an alternative.

‘Doing It My Way is not as clinical [as other programmes],’ says lead nurse at Oakfield Court Marnie Walker. ‘Often, our clients are born with congenital abnormalities and [standard] terminology does not fit them. With Doing It My Way, the focus is on health, but also on life and enjoying it to the full. And it works.’

Stages of life

The team replaced the traditional end of life coding register with its own tool, Probabilities of Life Expectancy. This is intended to help carers determine the stages of life each person has reached, the kind of support they need and the other professionals who should be involved.

Ms Lyall explains: ‘Using our experience as learning disability nurses we identified five key areas: optimum health, congenital abnormalities that will affect life expectancy, life-threatening conditions that respond to treatment, progression of disease that no longer responds to treatment, caring at the end of life.

‘POLE encourages staff to be clear about what optimum health means for each individual they support, as this may not be within mainstream parameters, and identify the different stages of their lives. It enables us to anticipate and prepare as people’s needs change.’

Ms Walker adds: ‘With the optimum health section, Doing It My Way ensures we review medication every six months. It helps us to identify seizure patterns, for example, so we are ready and prepared for changes. Thinking in advance means that, when clients’ health deteriorates, staff are trained and know what to do so the clients can stay in their own home.’

Joanne Seed
Team member Joanne Seed (left) discusses using Doing It My Way for assessments
Picture: John Houlihan

Doing It My Way also includes is a step-by-step guide for what a carer should do at specific points of a person’s life. As carers move through the guide, they can build a network with other professionals, such as GPs.

Families and clients are involved from the start, and a strong, honest and trusting relationship is built with them.

Once a person has been admitted, there is a settling-in period when the team starts to build its relationship with the client and the family.

Training tool

Doing It My Way is introduced slowly. ‘It breaks down barriers,’ says Ms Walker. ‘Death is still a taboo subject. Nobody wants to talk about end of life, but we see death as a part of living.’

The team also designed a training tool, with Ms Walker and Ms Lyall delivering the training.

‘Training is important because it changes the culture of an organisation,’ says Ms Lyall.

‘We explore some of the difficulties about the language used and attitudes towards end of life care for people with a learning disability. This can make a real difference to the support that is given to the person and their family and friends.’

One consequence of the introduction of Doing It My Way has been a reduction in staff sickness following a death.

Five areas

of a person’s life can be assessed to indicate the stage it has reached

‘They are better prepared, and are provided with support through team discussions and individual supervisions,’ says Ms Lyall.

‘The pathway prepares families to cope with their grief and loss after a loved one has died.’

The team has also developed a local palliative support group for people with learning disabilities, and is working on a non-verbal pain tool, communication training and symptom management.

Ms Lyall says Doing It My Way is transferable to other settings.


Doing It My Way in practice

Mary Binns writes: My brother Emmanuel moved into Oakfield Court care home in April 2014. The family and I were glad that he went there. It was brilliant for him and the care was fantastic.

He had a close bond with the staff. They took to him and he took to them. He would laugh and joke with them when he first went there. He made them happy and they made him happy.

Emmanuel was born with Down’s syndrome, and towards the end of his life developed dementia and had symptoms of Parkinson’s disease. 

The last few years were hard for him. We had to change his care plans on several occasions.

Over the last two years he deteriorated with the onset of end-stage dementia. But the staff at Oakfield Court had got to know him, and could calm him down and make him feel at ease.

Changes in his care were always discussed with the family. We had numerous meetings with Marnie, the lead nurse, as well as therapists and doctors all the way through his care.

It was helpful for us to understand what Emmanuel was going through and we were part of his journey.​

When Emmanuel deteriorated it was upsetting, but because we had been warned beforehand about what would happen, it was not a shock and we coped.

As we were involved in the different stages of his care there was a close bond between the family and the team. Towards the end, we had every confidence in the staff.

I think all homes across the country should have Doing It My Way because it makes sure families get involved.

Emmanuel was 58 when he passed away in May. We did not want him to be in a hospital – it l would have been awful.

Instead, at the end, we stayed every night for a week with him. The staff could not have done any more for us.

Right up to the end, Emmanuel was happy, comfortable and content in his own home, in his own bed, with his family and the staff he knew and who knew him.

He had a happy death.

The Learning Disability Practice Award was sponsored by NHS England




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