1. - a realistic approach to emergency anticipatory care planning
Dr Juliet Spiller
Consultant in Palliative Medicine
Marie Curie Hospice Edinburgh
@JASpiller

2. What is ReSPECT?
Where ReSPECT come from and why?
Forth Valley experience
Supporting realistic patient choice – explaining prognostic uncertainty, risk benefit balance,

3. What is ?

4. What is ?
ReSPECT is a process, it is not a form

5. What is ?
THE PROCESS prompts and supports person-centred, individualised conversations and planning (aka Realistic Medicine) about anticipated emergency care and treatment.
THE PROCESS is about respecting patient choice and respecting clinical judgment.
THE FORM simply communicates a summary of agreed realistic choices to guide clinical decision-making in a crisis.
THE FORM is what makes shared decision-making work for the patient in a crisis, in any care setting, when they cannot express their wishes.

6. What is ? ReSPECT is a process which…
supports and aligns with any ACP process or tool (including ‘myACP’, Living Will, ADRT, CYPACP, TEPs, TELPs etc)
Can be used in all specialties, all care settings and with all ages
ReSPECT is NOT….
Just about end of life care
Just a new DNACPR form

7. - Where did it come from? NCEPOD (2012)– Time to Intervene?
Lack of appropriate advance decision-making
CPR attempted in 52patients with DNACPR decisions and 7 on end-of-life care pathways
CIPOLD (2013)
42% premature deaths (n=238)
“inappropriate or poorly documented DNACPR orders” contributed to premature unexpected death

8. - Where did it come from? Court of Appeal – Tracey 2014
“...presumption in favour of patient involvement... preserving Human Right to information”
Winspear v Sunderland NHS FT
Where a patient lacks capacity:
Involve someone who knows them as long as it is ‘practicable and appropriate’

9. - Where did it come from?
UK-wide awareness that explicit focus on DNACPR decisions has been unhelpful / harmful
Wide variation in practice
Public mistrust, misunderstanding and frustration
Health and social care misunderstanding, communication failures and dislike of the conversation
Ongoing inappropriate CPR attempts and evidence of poor care and inappropriate escalation of care at times of crisis.
_____________________________________________________________________________________________________________________
UK-wide awareness that conversations about ‘realistic’ treatment and care choices must be
prompted and supported
communicated seamlessly and robustly at times of crisis
able to flex and evolve with the patient’s changing condition

10. - Where did it come from?
2015 Working group set up by RC(UK), BMA, GMC, RCN
Representatives from 37 patient and clinical organisations
Sponsored by Resuscitation Council UK
Additional funding from RCN, Macmillan and Scottish Government for specific workstreams
Public and stakeholder consultation
Early usability Pilots (acute, care home, hospice, paeds)
Early adopter evaluation (Acute) funded by NIHR
Design input from Helix

11. is not (just) a form its a process
“We didn’t redesign a form.
We redesigned a relationship”
Ivor Williams – Helix centre
Designing the form to support the process
‘Designing in’ the conversation(s)
Clarifies outcomes patients wish for and those they fear
Clarifies realistic treatment options
Summarises person-centred and realistic patient wishes for emergency care and treatment
What types of studies have been undertaken (designs used/characteristics of the study populations).

12. What types of studies have been undertaken (designs used/characteristics of the study populations).

13. “A clinician can’t get past this section without actually having a conversation with the patient saying – what would you prefer?”
What types of studies have been undertaken (designs used/characteristics of the study populations).
Explaining this section is what starts the conversation about values-based and realistic shared-decision making

14. Adoption in the UK. Launched for use in Feb 2017
6 early adopter sites (Warwickshire/Coventry was first)
Currently 7 CCGs, 14 Acute/Foundation Trusts, 1 Community Health Service/ 1 Health Board (Forth Valley)
Planned for 2019, 31 Acute Trusts & CCGs, and NHS Borders

15. Benefit themes from Adopter Sites
Improved conversations with patients & families
Enables relatives to see what care and treatment their relative does/does not want
Used in all specialties and all care settings
Increased conversations with patients that are not at the end of their life
Preferred by patients and relatives
Increase in compliance with documentation
Clear plan for care and treatment across all services
Reduction in complaints
Improved communication between primary and secondary care and more joined up working

16. Forth Valley experience
Pilot started in September 2017
Small test of change in 4 areas (older adult ward, mental health ward, day hospice, primary care)
Pilot preparation
ReSPECT Steering Group with Executive Sponsor
Wider education
Quality Improvement Support- Measurement Framework
Utilise existing electronic systems
Establish address for correspondence
Use alongside DNACPR documentation where appropriate
Remove pre-existing HACP

18. Overall Aims of ReSPECT Pilot
To test the ReSPECT process
Emergency Care Planning
Up to Date
Useful
Easily accessible
Earlier conversations
Person Centred Care
Shared decision making
Increase person centredness and shared decision making
Measure this with patient outcomes and qualitative feedback

19. Forth Valley experience
Main Pilot Ward
Identification at MDT or ward round
Sticker as prompt
Conversation (initially consultants only)
Complete form, scan and to
Communicated in IDL and GP to update KiS

20. Forth Valley experience
Naturally the process widened beyond initial pilot area
Education - App
- Drop in Sessions/Hospital/Departmental Meetings
- Staff Intranet/
ReSPECT nurse (1 day per week)
Challenges
staff turnover,
process evolving
keeping up to date
fast moving snowball effect
resistance to change
refine electronic process
overlap with KIS

21. Measurement Framework
Emphasis on Qualitative Feedback
Patient/Relatives
Carers Forum
Staff
Form Analysis
Qualitative/Quantitative
Outcomes
KIS updated within 1 month discharge
Time at home
Place of death

22. Forth Valley experience
70% patients screened should be prioritised for ReSPECT

23. Forth Valley experience
70% patients screened should be prioritised for ReSPECT

24. Forth Valley experience
70% asked about priorities of care

25. Forth Valley experience
70% asked about priorities of care

26. Forth Valley experience
100% involved in discussions
Improved communication in IDL needed
KiS not always updated (70% at 1 month)
70% asked about priorities of care

27. Qualitative feedback: ReSPECT experience
Adapted from National Health and Wellbeing Outcomes. Scottish Government.

28. Patient/Relative experience

29. “Should be extended nationally”
“Dad has always been clear regarding his end of life plans and the fact that medical professionals now have a document to show this is ideal”
“Open, honest and informative. We were included and our views sought appropriately ”
“Should be extended nationally”
“Gave me a sense of control in the planning of my future care”
“We liked that this is person centred”

30. Carer engagement group feedback
Overwhelmingly positive (excellent or good)
“Its a good thing...will be tremendously helpful at the end of life. It will take stress out of a situation. It gives everyone a voice and a choice”
“Excellent idea provided the health professionals adhere to it”
Similarly positive
“The sliding scale is a bit vague, would like it broken up more”
“Assists a necessary conversation”

31. “ Helps me to know how far to escalate the person’s treatment”
Staff Feedback
94% felt that ReSPECT involved the patient and/or family in decision making
88% felt ReSPECT would help them deliver the most appropriate care
“ Helps me to know how far to escalate the person’s treatment”
“ ..Most have been very receptive…..some people are not ready to talk about anticipatory care and this is respected”
“It is gentler than DNACPR where the focus is on NOT doing something rather than what we can do with ReSPECT”

32. Community Rollout 2 small pilots done
Community Rollout 2 small pilots done - patients with capacity living in their own home - patients without capacity in a care home
Positives
Challenges
-Easy to complete -Facilitates shared decision making & person centred care -Well received by families and patients -Carers felt empowered -Storage within care home was easy -Fit in easily with other discussions such as acp/ dnacpr/awi
-Some issues getting in touch with carers and setting up meeting/telephone -Some carers worried about them making the decision -More difficult on phone than face to face -Quite complicated process re scanning and getting on clinical portal
The plan can be unrealistic. Keen to have one form- not DNACPR too. Importance of electronic version.

33. Early Outcome Data

34. Excluding Deaths. Not about reducing appropriate admissions.

35. Forth Valley experience

36. Forth Valley experience
7% this was in an acute hospital setting

37. Forth Valley experience
Patient Preference
Person Centred
Provides a standardised approach cf. KIS
Summary
Stays with patient
More clinicians can create plans
Positive Feedback
Facilitates involvement of the person and those close to them
Accessible to more people to view
Collaboration
Outcomes
Maintaining the integrity of the Process is key in project management!

38. Currently..
Currently being rolled out across hospital, primary care, hospice
Intranet page
Education and engagement events
Integrated in WSW and Nursing Home L.E.S
Integrated into existing electronic systems
Share good practice in other areas
Supporting good communication
WE NEED YOU!!

39. Next Steps
ReSPECT as a stand alone document
Improve electronic systems
Adapt to ‘paper light’ system
Increase project management
Promotional video

40. Follow Our Progress
@lynseyfielden1

41. Patient Story 69 year old man Transferred from another Health Board
Parkinsonian
Bulbar dysfunction
Vertical Gaze Palsy
Falls

42. Progressive Supranuclear palsy
Neurodegenerative disorder ‘Parkinson’s Plus’
Tauopathy
Marked Bulbar Dysfunction
Falls
Vertical gaze palsy
Doesn’t respond well to usual treatment
Cognition usually intact

43. Hospital admission The first encounter is as an acute admission
Awaiting OP clinic
Aspiration pneumonia
Bulbar dysfunction
Communication challenging

44. How do we embark on ACP? Appropriate for ACP? Timing?
Who do we need to involve

45. Prepare
Clarify the persons capacity (remember it is decision-specific)
What is important to them? What would matter in an emergency?
“What outcomes would you value/ What outcomes would you fear?”
Who is important to them?
What other clinical information is required?
Consider from a clinicians perspective what would be important to discuss
What tools are you going to use to support this?
Are there any religious or cultural beliefs to consider?

46. Context Weight loss SLT involved Felt to have capacity
Clinical Context
Context
Weight loss
SLT involved
Felt to have capacity
Involve nutrition team
Practically easy to insert PEG but withdrawal…..
Fiercely independent
Prioritises life over any discomfort
Humour important to him
Recent move to a care home- less trust from family in care
Wife and daughters strong advocates (PoA)

47. What happens next Conversation Shared decision making/ ACP completed
PEG tube inserted
Delirium post-procedure
Discharged to care home
Attending Strathcarron Day Hospice

48. Natural progression Further complexity Natural Course Readmissions
Related to bulbar dysfunction
Deteriorating capacity
Honest and Sensitive Conversations
Transferred to hospice
Challenging
Suctioning
Agitation
The previous plan is changed with PoA- consider no further antibiotics even oral
Discharged back to care home
Comfort and dignity a priority

49. Key Points to record Capture ‘what’s important to you’
Capture ‘who is important to you’
Previous preferences if incapacity
Capture how decision was made - patient preference?
Consider likeliest cause of deterioration/anticipated emergency
Include hospital admission preference e.g. if care home resident
Include important exceptions even where palliative e.g. Fracture
May become more specific towards the end of life
Preferred place of death if end of life
Version and location
Lead clinician sign off
In parallel with any palliative care review, CGA, wider ACP etc

50. Q&A
When I know CPR won’t work for a patient how can I say I am giving them a choice?
Don’t start with CPR - find out what really matters to them
“I want to live as long as possible – I’m not ready to die, don’t talk to me about dying!”
“Supporting you to live as long as possible in the way that matters to you is exactly what we are talking about”
We will do everything we can to keep you alive – what do you mean by ‘living’ – heart beating? Able to talk to family? Able to be independent? Is there a type of ’living’ that you fear?
In a crisis these would be the treatments that might help……
These would be the treatments that would not get you what you want and might risk what you fear….

51. Q&A
When a frail patient comes in as an emergency I don’t have time to have the conversation – I have 40 people to see on my post-take ward round.
Do they know how ill you think they are?
Do they know how big a risk there is that they might die during this admission?
Do they know they have any choices?

52. Q&A
“Its all well and good to talk about preferred place of care and patient choice but at 3am when the patient is distressed and agitated what am I supposed to do with them if I don’t take them to hospital?”
Realistic choices must prompt consideration of emergency plan detail
- Emergency contacts
- Anticipatory prescribing
- Crisis nursing/social care plan

53. Practise Pointers
Timing is important- process may be started in an emergency (not ideal!)
The form prompts (rather than replaces) the conversation
Involve key individuals
Context
Need to be explicit in communication at times
Check understanding – “teachback”
Individualised – Shared decision-making (Team talk / Options talk / Decision talk)
Need to be competent in assessing capacity (document it fully)
Need to understand risks/benefits of potential intervention
Important to review in context of scenario
Form summarises conversation(s) - it doesn’t replace full documentation
Consider the practicalities of delivering on preferences e.g. to stay at home
Advise patient/relatives how information will be shared with other agencies

54. Key Points ReSPECT and ACP are complementary processes
ReSPECT is not just about end of life care
ReSPECT links realistic emergency care options /choices with what is of value to the patient
Significant Health Literacy and communication skills & culture challenges need to be addressed
KIS can be optimised to communicate ReSPECT information but system-wide openEHR integration is essential to make planning work for the patient in the crisis

55. For more information;
ReSPECT clinical lead;
Website;
Scottish ReSPECT collaborative;