Breakout 4.4 Advance Care Planning: It all ADSE up - Les Storey Consultant Respiratory Physician, Whittington Health & NHS Islington Part of a set of presentations from NHS Improvement event: Better value, better outcomes held on Thursday 21 February 2013, Guoman Tower Hotel, London How to deliver quality and value in chronic care:sharing the learning from the respiratory programme

1. Ask
Document
Share
Evaluate
Advance Care Planning: It all ADSE up
Some background information…
• There are over 500,000 deaths in England
each year
• Around 28% are of those with a cancer
diagnosis
• Most are from those living with a LTC/life
limiting illness
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2. Preferred place of death in England
Source What we know that we didn’t know a year ago (2012)
http://www.endoflifecare-intelligence.org.uk/resources/publications/what_we_know_now.aspx
The reality …
Source What we know that we didn’t know a year ago (2012)
http://www.endoflifecare-intelligence.org.uk/resources/publications/what_we_know_now.aspx
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3. Figure 1: The three main trajectories of decline at the end of life
Murray, S. A et al. BMJ 2008;336:958-959
Copyright ©2008 BMJ Publishing Group Ltd.
Clinical Outcomes in End of Life Care
• Death
• Quality of death
• Place of death
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4. The view of Death in Society
• “In Scotland, where I was born, death
was seen as imminent. In Canada, where
I trained, it was thought inevitable. In
California, where I now live, it’s seen as
optional.”
• Ian Morrison, former president of the Institute for the Future
National Audit Office Survey on End of
Life Care 2008
• From a survey of 200 individuals, 40% who died in
hospital had no medical need to be there, and a
quarter of these had been in hospital for over 1 month
• 59% of admissions from Care Homes could have been
avoided
• The explicit recording of patient’s wishes can form the
basis of care planning in MDT’s and other services,
minimizing inappropriate admissions & interventions
http://www.endoflifecareforadults.nhs.uk/publications/end-of-life-care-national-audit-office-report
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5. More recent figures 2011…
• Across England people average around 2.1 admissions to hospital
in the last year of life-accounting for on average 30 bed days
• 89% of those who die in hospital do so after an emergency
admission
• 12% who die have been admitted from a care home
• Of people receiving hospice care who had an Advance care plan
(ACP) 10% died in hospital compared to 26% who did not have an
ACP
Source What we know that we didn’t know a year ago (2012)
http://www.endoflifecare-intelligence.org.uk/resources/publications/what_we_know_now.aspx
Its good to talk …
The Advance Care Planning process provides a means to
achieve this. Essentially ACP is about having conversations
which facilitates and enable individuals to think about the
care that they would like to receive - we often hear these
conversations referred to as ‘difficult’ – Think of them as
enabling and empowering conversations…
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6. What is ACP?
Advance care planning is a voluntary process of
discussion and review to help an individual who has
capacity to anticipate how their condition may affect them in
the future and, if they wish, set on record: choices about
their care and treatment and / or an advance decision to
refuse a treatment in specific circumstances, so that these
can be referred to by those responsible for their care or
treatment (whether professional staff or family carers) in the
event that they lose capacity to decide once their illness
progresses.
Source - Capacity, care planning and advance care planning in life limiting illness –
A guide for health and social care
http://www.endoflifecareforadults.nhs.uk/publications/pubacpguide
The SANE Approach to ACP
• This is a little story about four people named
Somebody, Anybody, Nobody and Everybody.
• There was an important job to be done and Everybody
was sure that Somebody would do it.
• Anybody could have done it, but Nobody did it.
• Somebody got angry about that because it was
Everybody's job.
• Everybody thought that Anybody could do it, but
Nobody realized that Everybody wouldn't do it.
• It ended up that Everybody blamed Somebody when
Nobody did what Anybody could have done
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7. ACP: It all ADSE up
• Ask: have the ACP discussion
• Document: the outcomes of the
conversation
• Share: the persons views with family and
professional carers
• Evaluate: and audit the outcomes of EOLC
to enable services to be reviewed and
revised by commissioners
Barriers to ACP
• About 1% of the population die each year yet
often it remains difficult to identify people
who are in their last year of life
• Reluctance to discuss “distressing” issues
• Lack of knowledge/skills/confidence
• Pressures of work
• Lack of good documentation
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8. Birth Plan Advance Care
Plan
Preferred Priorities for Care
ACP= It all ADSE up
A= Ask
ACP should discussions cover…
• the person’s understanding of their illness and prognosis
• the types of care and/or treatments that may be beneficial in
the future and their potential availability
• the person’s preferences for future care and/or treatments
• the person’s concerns, fears, wishes, goals, values and beliefs,
need for spiritual or religious support
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9. D= Document the outcomes of the
discussion
Under the terms of the Mental Capacity Act 2005 formalised
outcomes of the ACP may include one or more of the
following
• Advance statements to inform subsequent best interests
decisions – e.g. PPC of which this presentation is the
focus.
• Advance decisions to refuse treatment (ADTR) which
are legally binding if valid and applicable in the
circumstances at hand
• Appointment of Lasting Powers of Attorneys (LPA) for
health and welfare and/or property and affairs
Preferred Priorities for Care …
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10. Preferred Priorities for Care
What is it?
• It is an Advance Statement of preferences and
wishes as defined by the Mental Capacity
Act(2005)
Who is it for?
• Anyone who wants to record their thoughts about
end of life care
When should it be completed?
• As soon as appropriate, the document can be
reviewed whenever an individual changes their
mind
The PPC is a tool which essentially
serves three purposes…
1. It facilitates discussion/s around end of life care wishes
and preferences and from these discussions
2. The PPC can enable communication for care planning
and decisions across care providers
3. Should the person lose capacity to make a decision
about issues discussed, a previously completed PPC
acts as an advance statement. This means that that
information included within the PPC can used as part of
an assessment of a person’s best interests when making
decisions about their care.
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11. S= Share: the persons views with
family and professional carers
With the consent of the individual the content of
their ACP needs to be shared with those who will
enact their preferences including family and health
and social care professionals
Paper based e.g. PPC Notification process
(example to follow)
Electronically e.g. Summary care Records,
Adastra, Electronic palliative care co-ordination
systems (EPaCCS).
Preferred Priorities for Care (PPC)
NOTIFICATION/AUDIT FORM
Dear Colleague NHS Number:
Our patient: DOB:
Address: Telephone No:
Diagnosis: GP:
Practice
Address:
Has completed the above document and has stated a preference to be cared for at:
HOME/ CARE HOME/ HOSPICE/ HOSPITAL (Acute/Community)
(circle as applicable)
Other priorities/preferences for care are:
I give consent for the information contained above to be shared with the professionals identified below YES/NO (please circle as appropriate)
If NO has been circled I have had the possible impact of this explained to me YES/NO
I give consent for the information in this document to be used for audit purposes anonymously YES/NO (please circle as appropriate)
I confirm that the information contained within the PPC is a true record of my wishes at this time.
Signed…………………………………………………………………………(please print and sign)
Date …………………………...
Name of person initiating the document:
Designation: Place of Work:
Date: Contact No:
Notification to: Please tick Fax Number Date
General Practitioner
District Nurses
District Nurses Out of Hours
Specialist Nurse
Community Macmillan Nurses
Out of Hours GP service
Hospice
Hospital (name)
Ambulance Service
Social Care Worker
Other relevant professional(name)
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12. E= Evaluate
Evaluate: and audit the outcomes of End of life Care
to enable services to be reviewed and revised by
commissioners
Local evaluations highlight the effectiveness of ACP
and how this can enhance choice for individuals
as end of life approaches
ACP can reduce bed stay days, minimise
inappropriate hospital admissions and more
importantly help to meet an individuals wishes
Planning for a wedding and a death
Peggy* was a centenarian who had been living in her care home for four years after suffering a
stroke.
Over the last year of her life she suffered recurrent chest infections, resulting in two hospital
admissions. The second admission had been quite traumatic as she had become confused and
disorientated and did not want to return.
Her care home had recently introduced the PPC, Peggy was one of the first residents to
complete a PPC with her son involved in the process.
One of her chief priorities related to how she would be dressed in the final days of life. When
“the time came” she did not want to be wearing some “horrid brushed cotton affair”. Fashion
had played a big part in her life and it was important she should be wearing something fitting -
“a silk or satin nightgown, with a good bit of lace”!
As an ardent royalist her other priority was to watch the royal
wedding of Will and Kate. She would be “ready to die once they
were safely married” and wanted no further admissions to hospital.
A week before the wedding Peggy suffered another infection. This
time, in accordance with her PPC, she remained at the home.
Because the staff and family had discussed and were aware of her
wishes they felt reassured they were doing the right thing.
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13. Peggy rallied for the wedding, watching from her armchair, surrounded by royal paraphernalia.
The home organised decorations and a wedding breakfast. An exhausted Peggy was thrilled with
the proceedings and went to bed content
A few days later her condition deteriorated and she entered the dying phase. The staff ensured
she was always dressed in the prettiest nightgowns. She died in a beautiful peachy satin number
with lace edging, a large wedding photo of Will and Kate decorating the wall opposite her bed.
Peggy‘s death was peaceful and pain free. She was where she wanted to be, surrounded by the
people and things that were important to her and wearing what she wanted.
The opportunity to have these discussions meant that Peggy’s wishes were defined, her care
planned and family involved. It also helped her to feel she was in control. Without this
discussion her wishes would not have been known.
Jill Chapman, End of Life Care Pathway Facilitator- Care Homes, End of Life Care Team, Bletchley Community Hospital
.
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