Advance Care Plans for children and young people with life-threatening and life-limiting conditions: Developing an evidence based strategy for improvement

Our vision

Your help

ADVANCED CARE PLANS (and difficult conversations)

in a paediatric NHS Trust

Dr Karen L Shaw [email protected]

OVERVIEW

1. Interventions

2. Challenges

3. Our approach

4. Progress and next steps

Advance Care Plan (ACP) Magnolia House

INTERVENTIONS

• Family held document

• Developed in 2011

• Rapid uptake at BCH

• New facility for ‘difficult conversations’

• Completion due in November 2015

• Part of BCH, but physically separate

1. Central to BCH improvement strategy

2. Designed to improve quality of care through:

Effective communication between staff and families

Shared decision-making

Anticipatory planning

3. Family-centred approach

Respond to needs identified by parents and young people

Promote ‘humanised values’ (choice, dignity, control, support, etc)

4. Complex interventions

Wide applicability

Elaborate implementation processes

INTERVENTIONS (cont.)

Complex interventions

Lack definition

Lack of control (underway and changing)

Sample (small & heterogeneous)

Ethical issues

Paediatric Palliative Care is relatively new

CHALLENGES

Definitive evaluation of effectiveness is premature

MRC guidance

Realist inquiry

how

Formative evaluations:

Clarify aims of intervention (implementation, outcomes)

Identify conditions that lead to better (or worse) outcomes

Inform service development

Inform subsequent research design

ATTEMPTED SOLUTION

Does it work?

What works, for whom, in what circumstances, in

what respects, and how

SOLUTION

Network of expertise

PPI involvement (young people and parents)

National endorsement: Together for Short Lives

Advance Care Plan

1. Health Foundation ( themed cal l )

2. NIHR Health Services and Delivery Research (Open cal l )

Final Round (n=15) Ambitious, realist inquiry, not

longitudinal

3. NIHR Research for Patient Benefit ( themed cal l )

Waiting to hear

Magnolia House

1. BCH Foundation

2. Health Foundation: Innovating for Improvement Waiting to hear

FUNDING

The assessors were impressed with overall

quality of the submission, identifying that the

methodology was robust, and noted the

impressive expertise of the research team.

Consequently the proposal was classified as

potentially of interest in the future

This is not research, merely a

process to monitor a new

service with the aim of

improving it

Query why additional funding for this

evaluation is needed when it should

have been set up in the plans

It seems late to evaluate the impact of a

facility after funding has been secured and it

has been built. What would be more suitable

is assessing different models of care to

identify the most efficient or effective.

A plan

for life

ADVANCED CARE PLAN

To help children and young people live as well as

possible, for as long as possible and to choose

the care they want in the places they want it

WHAT IS THE ACP?

A tool to support families and professionals to ( i) discuss,

(ii) document, and (ii) agree plans to manage:

1) Illnesses or declines (expected to be reversible)

2) Emergency and end of life care

3) Family wishes

Completion: Anyone who knows the family well

Discussed over an extended period

Shared with professionals

Reviewed regularly

Belongs to family

Designed to be used in all environments that the child encounters

In the UK: 49,000 children and young people with life -

limiting or life-threatening conditions (Fraser 2012)

1. Curative treatment may be feasible but can fail (e .g . cancer, some

organ fa i lures) - access to pal l iat ive/emergency care may be necessar y when

t reatment fa i ls or dur ing acute c r ises .

2. Premature death is inevitable (e .g . cyst ic f ibros is , Duchenne muscular

dystrophy) - may be long per iods of intense t reatment a imed at pro longing l i fe

and par t ic ipat ion in normal l i fe

3. Progressive without curative treatment options (e .g . Bat ten d isease) -

t reatment is exc lus ive ly pal l iat ive and may extend over many years

4. Irreversible but non-progressive - causing severe d isabi l i ty, leading to

suscept ibi l i ty to heal th complicat ions and l ike l ihood of premature death (e .g .

severe cerebral palsy, mult ip le d isabi l i t ies such as fo l lowing bra in or sp inal core

in jur y )

WHO IS THE ACP FOR?

WHAT IS THE EVIDENCE-BASE?

RATIONALE National agenda (DH 2008)

Care is suboptimal and crisis driven (DH 2008)

Discussions happen too late (Brook 2008)

Lack of recognition/support puts parents at risk (Rosenberg et a l , 2012)

Rising national prevalence (Fraser 2012)

75% die in hospital (DH,2007)

EVIDENCE Recent systematic review identified only 13 relevant articles (Lotz et al, 2013)

3 paediatric ACP programmes

1 evaluation

OUR PLAN

Aim: To undertake a formative realist evaluation of the ACP

Recognises interventions can work dif ferently in dif ferent situations and

circumstances.

Star ts and ends with theory:

How the ACP leads to its ef fects and in what condit ions it should do so

Method-neutral

Involves generate, test and refine Context–Mechanism-Outcome-Configurations (CMOCs)

Encapsulate what we understand about the relationship between the type and nature of approaches to ACP (mechanisms), within the dif ferent

sett ings/situat ions that they are used ( context ) and the impacts of this on children, families, staf f , practice and organisat ions ( outcomes).

ACP CONTEXT

Mechanisms Underlying social/psychological

drivers that trigger the

reasoning/behaviour of actors

Context The conditions relevant to

triggering the mechanism

Outcome Patterns The effects resulting from the

activation of different

mechanisms in different contexts

Increased application of

knowledge

Young person’s capacity Care aligning to wishes

Improved communication

skills/practices

Timing of introduction Better symptom control

Genuine opportunities for

shared decision-making

Environment Increased satisfaction

with care

Information sharing

across boundaries

Professional status More co-ordinated care

Aim Develop candidate theories (conjectured CMOC)

Methods: Evidence review

Scoping review

Audit of existing ACPs (n>300)

Analysis: Realist synthesis (Pawson et a l , 2005 )

• Identify patterns of outcome

• Mechanisms generating those outcomes

• The contexts in which particular mechanisms may or may not ‘fire’

The ACP, in this context, triggers this particular mechanism for these actors, generating these outcomes

GENERATING THE THEORIES –

STEP 1: ‘LAUNCH PAD’

Aim: To refine our thinking and generate statements to test with participants

Methods: Focus groups with stakeholders (Networks, PPI)

Which conjectured CMOCs offers the most robust and plausible explanation of the observed pattern of outcomes .

Validity

Prioritising

Grouping

User fr iendly

GENERATING THE THEORIES –

STEP 2: INTERROGATION

1. Present our theories to families and staff

2. Extent to which they reflect experience (Likert scale)

3. Confirm, disprove and refine theories (qualitative data)

Case-linked ‘realist interviews’

Purposively sampled

Specialists to support involvement

Youth-based approaches

Eligibility (appropriate to approach & have support)

TESTING THE THEORIES

Children/Parents Staff who

complete ACPs Staff to whom ACP is copied

TESTING THE THEORIES (cont.)

Confidential private blog (secure website) All families (n>300)

Support inclusivity & sub-group analysis

Optimising response Anonymous message board & Freepost postcard

Analysis Thematic framework analysis

Corpus linguistics: Uses computational and statistical tools to look

for recurring patterns of language use.

Iterative process to develop ‘actual CMOCs’

Follow threads, seeking disconfirming evidence, cross-case comparison

1. Improve quality in emergency & palliative care

2. Beneficial outcomes for children, young people & families

By informing:

Redesign of the ACP and its supporting guidance

Workforce education and development

Effective and sustainable approaches to evaluation

Funding:

Prioritising work,

Redesign ACP,

Dissemination

Celebration event

TRANSLATED INTO PRACTICE

MAGNOLIA HOUSE

To improve:

1. the quality and confidentiality of

conversations with families

2. access to practical and emotional support

3. feedback mechanisms for families and staff

to evaluate how well BCH demonstrates

compassion and caring

MAGNOLIA HOUSE

at Birmingham Children’s Hospital

Co-designed with users

Private spaces

Contemplative communal spaces

Support

Educational opportunities

A response to: Local need

Evidence

Policy

Aim:

To examine how and in what contexts Magnolia House works (i .e.

supports better communication and outcomes) or can be amended to

work, and with what impact.

Methods:

( i ) Pre-post occupancy survey with BCH specialit ies to:

Describe pre-occupancy practice (in reference to best practice) and satisfaction with

care

Examine uptake

Assess change in practice & satisfaction with care

MAGNOLIA HOUSE

Post-occupancy survey: To explore the extent to which Magnol ia House does/does not :

offer a physical space that contributes to comfort, well -being and health,

facilitate best practice in communicating bad/signif icant news

improve experience and satisfaction with care

support learning

support better outcomes (e.g. decision -making, care-planning)

have unanticipated outcomes/risks

Post-occupancy interviews Complex interplay between set t ing, exper ience, and behav iour, par t ic ipants

Al l users inv i ted to par t ic ipate inter v iews about thei r exper iences of us ing Magnol ia House and the meanings at tached to those.

Data analysis/synthesis Qual i tat ive : Phenomenological/framework (Heal ing P laces ’ and ‘Humanisat ion of

Heal thcare ’ )

Improvement f rameworks (RE - A IM, K i rkpatr ick 's evaluat ion of learning models) to examine change at ind iv idual and organisat ional levels

MAGNOLIA HOUSE

Suggestions

welcome! THE WAY FORWARD

ADDRESS REVIEWERS COMMENTS

Realist inquiry (strengthen team)

Reduce uncertainty Collect prel iminary data to t ighten focus (aims, outcomes, context)

1.Audit Evidence that families are offered opportunities to discuss wishes

documented with sufficient clarity to allow implementation

Degree of reach (e.g. any underrepresented groups)?

Fidelity (e.g. is completion influenced by condition/setting)

Risk (e.g. potential for error, missing data)

2. Scoping review to identify CMOCs

3. Baseline survey of current practice in delivering bad/sensitive news

Challenge our status quo bias (do something dif ferent)