perspectives from northern ireland – development of bereavement care standards and bereavement...
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Perspectives from Northern Ireland –
Development of Bereavement Care
Standards and Bereavement
Coordinator Roles
~ The story so far…
HSC Trust Bereavement Coordinators
15th November 2016
Health and Social Care Trusts in NI
HSC Bereavement Network ~
Beginnings Key Recommendations: Better public information &
communication New legislation ~ Human Tissue Act April 2004 New PM Examination Guidance
& Consent Forms Improved Bereavement Care ~
HSC Bereavement Network March 2006 and new role created – Bereavement Coordinator
3
HSC Bereavement Network ~ Launch
“Providing help and support to bereaved people is clearly a very important aspect of health and social care services and one that may affect us all at some time. We do not always get this right, yet dealing sensitively and carefully with patients who die and with relatives and carers is vitally important. That is why we should work to provide sensitive and responsive services with all who need them”
Martin Bradley, Chief Nursing Officer and Network Chair 2006
Coordinator Role - main functions
Member of the network team
Develop standards for bereavement care
Embed standards, policies and procedures in our Trusts
Produce and/or source bereavement resources and information
Develop training on post mortem consent and bereavement and influence training programmes
Liaise with Coroners office, DOH, HSC Board, and other organisations as necessary to influence care and support
HSC Bereavement Network ~
Original Steering Group Membership
Chief Medical/Chief Nursing Officer
DHSSPS representatives from medical and secondary care
directorates
Primary Care
Coroners Service
Voluntary services e.g. Cruse, Hospice
Directors from all HSC Trusts
Bereavement coordinators
To build the capacity of all staff who have contact with dying and bereaved people so that they can respond in the most appropriate way according to their respective roles and the needs and preferences of those affected
HSC Bereavement Network ~ Aim
Death in Northern Ireland – where
people die - 2014
14,670 deaths
7/10 deaths occur in
hospital/nursing home
1/9 deaths are people
from outside NI
Source - General Registrars
Report 2016
HSC Bereavement Network ~
Standard Development Work-plan
Carry out a baseline audit 2007-2010 - Phase 1: Policies , Procedures and Practices in
hospital and hospice settings - Phase 2: The experiences of bereaved people and
those delivering primary care services Engage staff, people and organisations -‘World
Café’ & ‘Open Space’ Engagement Workshops held
HSC Services Strategy for Bereavement Care published in 2009
NI Audit: Dying, Death and Bereavement -
Phase 1: Policies, procedures & practices in
hospital & hospice settings (2009)
Quantitative/statistical analysis of profile of the 15,000 deaths each year in NI
Reviewed the policies, procedures & practices governing care & services available to support patients, relatives & staff at the time of death & bereavement in hospitals & hospices
Audit Phase 1 ~ Strands
Audit Strand
Sources of Information
(Numbers of site/teams participating & questionnaires returned)
Demographics
Hospitals (35) & hospices (5)
Organisational
Hospitals (35) & hospices (5)
Ward visits
Wards (140) & hospices (5)
Mortuary services
Staff in operational mortuaries (12)
Chaplaincy services
Chaplaincy teams in hospitals & hospices (33)
Palliative care
services
Palliative care teams in acute hospitals (11)
Porters & funeral
directors
Portering teams (15) & funeral directors with service level
agreements for portering & mortuary duties (5)
Staff questionnaires
Individual staff members across professions/disciplines (1,633)
Audit Phase 1 ~ Results
Policy/Procedure Area
Hospitals
Hospices Accessing translation services 94% 60%
Do not attempt resuscitation 94% 100%
Reporting cases to the coroner 91% 100%
Cultural and religious practices 88% 100%
Death certification 82% 100%
Breaking bad news 77% 100%
Care of the dying pathway 74% 100%
Care plan for women who experience a
miscarriage, stillbirth or neonatal death* 73%
Not applicable
Post mortem processes 71% 40%
Cremation 69% 80%
Memorandum of understanding 68% 100%
Information for relatives 62% 100%
Burial by hospital (if no next-of-kin) 61% 60%
Advance directives 51% 60%
Identification of the deceased 49% 60%
Bereavement care 46% 80%
Chaplaincy/Spiritual care 46% 100%
Sudden death protocols 42% 20%
Audit Recommendations
12 recommendations made;
Develop a strategy for bereavement care in NI
Requirement to have policy and guidance on aspects of statutory and supportive care before, at the time of and after death (e.g. standardised mortuary form)
Availability of written information on loss, grief, support in a range of circumstances
Induction/training that covers death and bereavement relevant to the staff/service concerned
System in place to obtain feedback and learn from the experience of bereaved individuals
Support for staff
Engagement exercise
Concurrent to the audit process, workshops were held involving statutory, voluntary / community services and bereaved individuals to:
Catalyse effective working conversations
Synthesise knowledge, views, experience and opinions
Identify key priorities for transformational change and encourage ‘whole systems working’
Generate key themes for the HSC Standards for Bereavement Care
‘World Café’ & ‘Open Space’ methods
www.theworldcafe.com www.openspaceworld.org
Phase 2: The experiences of bereaved
people and those delivering primary
care services (2010)
Methodology selection
“ While numbers are useful and can be objective
they are rarely persuasive by themselves as
they lack the rich context of anecdotal data.
While anecdotes can be persuasive they lack
objectivity and can be easily dismissed. What is
needed is an approach that combines the merits
of both ”
Angelina Seah, Cognitive Edge© 2010
Data Collection Data Analysis Audit tool developed with
Cognitive Edge
Audit publicised & online tool
“live”
Focus groups & individuals
approached
Community staff meetings
attended
Participation invited via
online or paper questionnaire
2 databases returned by
Cognitive Edge©
Personal n=167, Professional
n=93 stories
Stories analysed, mapped
against selected criteria, using
SenseMaker™ software
Seven emerging messages
identified
Recommendations developed
to address messages
Emotional intensity of stories told
Question: Describe your overall feeling about the story
Triad question example
How did this experience make you
feel at the time?
In Control
Helpless Frustrated
PERSONAL STORY
With responses to some filter questions
Title: Bad news broken brilliantly
Emotional intensity: Strongly positive
Reason for telling: Encourage/compliment
Key words: Compassion, professional, kind
How did you feel at the time? In control
How do you feel now? Accepting
Did the person know they were dying? Yes
PERSONAL STORY
With responses to some filter questions
Title: Desperation
Emotional intensity: Strongly negative
Reason for telling: For relief
Key words: Anger, sorrow, frustration
How did you feel at the time? Frustrated/helpless
How do you feel now? Angry
Did the person know they were dying? Yes
Messages and Recommendations
Phase 2 messages and recommendations;
Complemented the quantitative findings of the first
phase audit
Affirmed the areas that the standards in the HSC
Strategy for Bereavement Care would focus on
Are being addressed by the implementation of the
standards within Trusts
Strategy Development
These processes led to the development of 6 standards to influence bereavement care provision
The standards and the audit recommendations became central to the the HSC Services Strategy for Bereavement Care, released by the DHSSPS in June 2009
Raising awareness
Promoting safe & effective care
Communication / information & resources
Creating a supportive experience
Knowledge & skills
Working together
HSC Bereavement Care Strategy ~
Implementation
DHSSPS steering group stood down- September 2009 – ‘go be the oil in the machine!’
HSC Bereavement Network continues its work under the leadership of its chair- Dr Tony Stevens, Chief Executive, Northern Trust
The Bereavement Coordinators, their managers and representative from DOH form the Network
Meets 3-4 times per year
Coordinators given responsibility to implement strategy in Trusts - Team meeting monthly
Bereavement Forum established in each Trust - formed to support standard implementation and improvements
Strategy Implementation – Forums
role
The forum in each trust meets quarterly
They have a terms of reference to guide purpose
Membership is multidisciplinary and across
services and includes service user representatives
Time limited work streams undertake specific
projects
Chaired by a Director or Assistant Director
supported by TBC
HSC Bereavement Care Strategy ~
Implementation examples
Raising awareness
The development of an information leaflet on Grief
and Bereavement for health and social care staff.
The leaflet, created by the HSCBN, is distributed on
induction to new staff and at awareness raising
sessions facilitated by the Coordinators in all Trusts
HSC Bereavement Care Strategy ~
Implementation
Promoting safe & effective care
Policies and procedures that promote safe,
effective and sensitive practice have been
developed and introduced, some are regional
requirements implemented in all Trusts e.g.
standardised regional body transfer forms, post
mortem consent; and some specific to individual
Trusts e.g. local procedures for release of deceased
babies and children from hospital
HSC Bereavement Care Strategy ~
Implementation
Communication / information & resources
Improved availability of written information for relatives bereaved in a range of circumstances. Resources have been developed by Trust forums and the HSCBN or sourced from external organisations. They are available in hard copy and electronically for staff to use as part of their bereavement care support of relatives
Bereavement care information and policies/procedures available on Trust intranet and internet pages
HSC Bereavement Care Strategy ~
Implementation
Creating a supportive experience
Actions undertaken to meet all of these standards
for care contribute to creating a supportive
experience around the time of death for all
involved, patient, relatives and healthcare staff
Awareness of the impact of the environment has
led to refurbishment of facilities e.g. in mortuary
and viewing areas
Trust have invested in providing sensitive
handover bags for the return of a deceased
patients personal belongings
HSC Bereavement Care Strategy ~
Implementation
Knowledge & skills TBCs have developed and delivered training
packages linked to the clinical effectiveness and governance agendas of particular services e.g. seeking consent for hospital post mortem examination; awareness sessions on professional responsibilities relevant to death and bereavement care in various circumstances
The standards have been referenced and incorporated into education programmes offered by providers of pre and post registration professional training e.g. they have been included in the Ulster University and Queens University curriculum for nursing students.
HSC Bereavement Care Strategy ~
Implementation
Working together
Partnership working has been promoted by inter-Trust sharing of good practice initiatives and by networking with various agencies e.g. Coroners’ Service, voluntary sector providers of bereavement care and support - SANDS, CRUSE etc.
TBCs attend and contribute to actions directed by other strategies e.g. Morbidity and Mortality Review, Palliative Care, Protect Life – suicide strategy etc.
Standards have been adopted and incorporated into local policy and practice guidance for care around death in a range of settings
Links with Hospice Friendly Hospitals programme
Recent and Current Initiatives
HSCBN website
Seeking Consent for Hospital PM examination –
regional education programme with e-learning
module, face to face presentation and discussion
guides developed
Care of deceased patient and their family -
guidance for nurses in development
Re-audit completed and report published in
March 2016
Aim of re-audit
Document the extent to which Trusts have met the twelve recommendations from phase one of the ‘Northern Ireland Audit; Dying, Death and Bereavement: Policies, Procedures and Practices in Hospital Settings’
From the data collected make recommendations for further improvement or development
Results
All 5 Trusts participated, all recommendations
met or partially met
Staff survey responses;
Trust Number of respondents
Northern Health & Social Care Trust
(NHSCT) 419 (21.9%)
Western Health & Social Care Trust
(WHSCT) 169 (8.8%)
Belfast Health & Social Care Trust
(BHSCT) 765 (40%)
Southern Health & Social Care Trust
(SHSCT) 249 (13%)
South Eastern Health & Social Care Trust
(SEHSCT) 312 (16.3%)
Total 1,914 (100%)
Staff Responses
Staff comments on changes or initiatives in place:
Bereavement boxes
Bereavement information booklets
Visual cues that a patient has died
Training and awareness sessions
Introduction of special family handover bags
Bereavement coordinator
Improvements to documentation and guidelines
Body transfer forms introduced
Staff suggestions for improvement:
Additional bereavement training/updates (n=175)
Easy access to/ availability of information (n=35)
Easy access to debriefing (n=29)
Relatives rooms in wards (n=23)
Future Plans
Take forward re-audit recommendations including
updating/refreshing the strategy document,
exploring avenues for supporting staff resilience
etc.
Continue to provide support for teams needing
specific guidance and protocols for their role in
bereavement care e.g. school nurses, community
services, ED teams
10,000 Voices project to re-audit experience of
care after death in 2017
Ongoing commitment – to continue to be a
resource to our Trust and HSC colleagues
Lessons learned
On reflection… 10 years on…
We have learned…
Bereavement is “the entire experience of
family members and friends in the
anticipation, death and subsequent
adjustment to living following the death of a
loved one”
Christ et al (2003)
We have learned… The standards and the work to implement
them has been well received – because they can be applied to all deaths in any circumstance
Working within existing governance structures in Trusts is a benefit
There is value in using practice development and change management strategies to get bereavement onto agendas and support teams and services to do the best job at their point of contact/responsibility
We have learned…
Our focus is on enabling, not disabling, coping in bereavement – we promote a public health model of bereavement care e.g. Aoun et al 2014
Working with staff so they recognise their potential to provide care and support that helps people grieve is invaluable
There is always inexperience in the system – so we are always repeating the message!
And Finally…
Thank you for inviting us to meet with you today!
We wish you much success in your bereavement roles and thank you for helping with ours!
“Coming together is the beginning.
Keeping together is progress.
Working together is success.”
Henry Ford
References
HSC Bereavement Strategy-2009
Phase 1 Dying Death and Bereavement Audit 2009
Phase 2 Dying Death and Bereavement Audit 2010
Re-Audit report - Dying Death and Bereavement 2016
Pyramid of bereavement support – www.bereaved.ie
Article: Aoun SM, Breen LJ, Rumbold B, Howting D. (2014) Reported experience of bereavement support in Western Australia: a pilot study. Australian and New Zealand Journal of Public Health. 38 vol5 473-479
Bereavement Network Website
http://www.hscbereavementnetwork.hscni.net
Contact
Contact Email Address Telephone
Belfast Trust
Heather Russell
028 90633904
Northern Trust
Gwyneth Peden
028 94424992
South Eastern Trust
Paul McCloskey
028 90553282
Southern Trust
Anne Coyle
028 38613861
Western Trust
Carole McKeeman
[email protected] 028 7134 5171
Ext. 214184