UWE Bristol ‘Child & Family Wishes’ for end of life care: a multi-service case notes review of end of life planning for children with life-limiting conditions.

UWE Bristol

‘Child & Family Wishes’ for end of life care:a multi-service case notes review of end of life planning for children with life-limiting conditions

Dr. Antonia BeringerSenior Research Fellow, University of the West of England, Bristol.

Dr. Emma HeckfordSpR Paediatric Palliative Medicine, University Hospital Wales, Cardiff.

Background

• Planning for end of life (EoL) is a sensitive and important part of providing comprehensive and individualised palliative care – reflected in ACT standards

• Least well achieved of the pathway standards • Bristol based project group developed ‘Child &

Family Wishes document’ guidance to support EoL planning (Fraser et al 2010)

Aims

• To review documentary evidence of planning against the ACT key standards for EoL care across hospital and community health service and voluntary sector children’s palliative care providers.

• To measure the impact of the ‘Child & Family Wishes’ document on EoL care planning.

Method

• a manual, retrospective, case notes review• children with a diagnosed life-limiting condition• died between October 2008 and March 2010• identified from Child Death Overview Panel

review data• defined geographical area• ethical and individual service permissions

Sample

• Source: 114 sets of notes from NHS hospital, NHS community, hospice and home based voluntary services

• 48 children/young people: 24 girls, 24 boys

ACT category n=

I 19

II 0

III 18

IV 11

Lead specialty

Lead specialty: Number of children

Oncology 16Neurology 11Neonatology 5Respiratory 5Cardiology 3Intensivists 3Community paediatrics 3Endocrinology 1General paediatrics 1

Age at death (n=48)

ACT standards for EoL careStandard

1 Professionals should be open and honest with families when the approach to end of life is recognised

2 Joint planning with families and relevant professionals should take place as soon as possible

3 A written plan of care should be agreed including decisions about methods of resuscitation; emergency services should be informed

4 Care plans should be reviewed and altered to take account of changes

5 There should be 24 hour access to pain and symptom control including access to medication

6 Emotional and spiritual support should be available to the child and carers

7 Children and families should be supported in their choices and goals for quality of life to the end

Standard 1: Professionals should be open and honest with families when the approach to end of life is recognised

Open discussion

• Discussion documented in 35/48 cases• In 1/48 case young person had been present• Cases where siblings told but not affected child • Discussion about EoL plans sometimes resisted

by parents and postponed by staff.

Standard 2: Joint planning with families and relevant professionals should take place as soon as possible

Joint planningServices involved: min 3, max 22, mean 5.

Plans often made late in the child's life• delays related to diagnostic/prognostic uncertainty or

ongoing curative management• plans triggered by an acute life threatening event• timely and comprehensive planning more likely by

specialist palliative care services

Standard 3: A written plan of care should be agreed including decisions about resuscitation; emergency services should be informed*

Wishes at different stages of life

*Emergency services informed in 6/48 cases.

Yes No

During the child's life 30 18

If the child becomes more unwell 34 14

In event of acute life-threatening event 36 12

After the child's death 23 25

Standard 4: Care plans should be reviewed and altered to take account of changes

Care plan review

• 29/48 had been regularly reviewed and updated• Plans often buried with narrative of the notes• ‘Wishes’ document not used – services ‘own’

forms preferred

Standard 5: there should be 24 hour access to pain and symptom control including access to medication

24/7 access

Standard 6: Emotional and spiritual support should be available to the child and carers

Bereavement support

• 8/48 cases - support not documented (all NHS services)• Non-NHS services - detail of support offered and taken

up.• Extended periods of post-bereavement support reported

by community based services.• Parent-led support group established.

Standard 7: Children and families should be supported in their choices and goals for quality of life to the end

Place of care Preferred place of care

Preferred place of death

Actual placeof death

Home 14 9 11

Hospice 4 12 16

Hospice or home 6 6 -

Hospital 3 1 19

Not stated 21 20 -

Ambulance 1

College 1

Key points

Wide variation between and within services in level to which ACT End of Life care standards are being met.

EoL care information buried within narrative of notes making it hard to find and act upon.

Multi-service nature and uncertain trajectory of end of life care creates challenges for services and families.

What will help?

• Awareness raising

• Training & support

• Accessible documents

• Prompts – verbal, electronic, written

• Deeper cultural shift...

Closing thoughtsWhat holds us back from 100% achievement

of EoL care standards ?

“Death denial and our own personal struggle with mortality...impacts on care delivery”

(Camilla Zimmermann, 2007)

“We must be aware of our own existential standpoints [to do this work]”

(Paul Moon, 2008)