Transcript Preferred Priorities for care

Preferred Priorities for Care…
An Advance Statement of Preferences
and Wishes
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
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
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
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
How can we support more people to die in the
place of their choosing (where possible)?
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…
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
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
ACP= It all ADSE up
A= Ask
ACP discussions may 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
Effective communication skills…………
• ACP relies on health and social care professionals being
able to recognise when someone wants to talk about
their future or end of life care.
• ACP relies on health and social care professionals having
the skills, confidence and competence to open the
discussion in a timely and sensitive way.
• ACP relies on health and social care professionals having
the skills to structure a person focused discussion with an
emotive content.
• ACP relies on health and social care professionals having
the skills to close the discussion leaving the person
feeling supported, listened to and more in control.
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 …
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.
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
Our patient:
NHS Number:
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:
Date:
Notification to:
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)
Place of Work:
Contact No:
Please tick
Fax Number
Date
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
Some benefits of using the PPC…
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Improved identification and registration of those with supportive, palliative
and end of life care needs
More people died in the PPC
Reduced inequality in place of death
Improved communications and coordination between professionals and
services
Care Homes received improved support to be able to respect residents
wishes
Reduction in emergency admissions and length of stay in acute care where
appropriate and in line with preference
(Barnsley and South West Yorkshire 2011)
http://www.endoflifecareforadults.nhs.uk/case-studies/barnsley-preferred-priorities-for-carepilot-study-audit
West Essex Audit identified that 83%
.
of individuals with a PPC died in their preferred place
PPC is an important tool in my end of life care toolkit. PPC provides the
opportunity to involve the only person that really matters’ District Nurse
The PPC has changed my practice as it has provided me with a tool
that allows health professionals to work together to achieve patients’
goals for their end of life care. In doing this it promotes collaborative
working within many aspects of care settings and health professions.
Most of all it empowers patients at a time when they and their family
are vulnerable. It promotes difficult conversation which enables sharing
of thoughts and fears for the future and the care they hope to receive. It
also provides the opportunity to discuss what is realistically achievable.
It empowers individuals to be independent with their decision making
process, and be supported by those professionals caring for them.”
District Nurse
Source West Essex Evaluation 2010
http://www.endoflifecareforadults.nhs.uk/assets/downloads/PPC_Evaluation_West_essex_Feb2010.pdf
Identifying and Recording Wishes and
Preferences
The key to the PPC is the use of 3 open questions
–
In relation to your health what has been happening to
you?
–
What are your preferences and priorities for your future
care?
–
Where would you like to be cared for in the future?
NB The open questions enable individuals to dictate the
content of the document rather than using a checklist
which becomes ‘our’ agenda rather than the
individual’s
In relation to your health what has been
happening to you?
• I have cancer and a slightly dodgy kidney
• I have had a wonderful life with a wonderful family. I
know I am dying
• Had a lot of pain and very afraid of how my chest is. I
am frightened when I can’t breathe
• I have a brain tumour and I am really frightened
What are your preferences &
priorities for future care?
• I do not want my sons to find me if I die.
• To maintain control & be involved in
decision making
• Like to die in a dignified manner & avoid a
post mortem
• No more treatment – I have had enough
• I don’t want to go into hospital
Where would you like to be cared for in the
future?
• I want to stay in my own home
• I would like to be in the Community Hospital
• Prefers to die in hospice if bed available
• I would like to be looked after at home, as
long as my family can cope
• I don’t care
People will have many differing responses to
the questions – what is important is to create
an environment of openness, honesty and
trust for people to think about and express
what it is that is important to them …
Examples of case studies highlighting
the impact of the PPC…
Betty and Margaret have lived together for a number of years, they have learning
disabilities and receive regular support to assist in their day-to-day activities.
Betty has lung cancer. The care team are convinced that she is aware of her
condition and that the prognosis is poor. She doesn’t want to talk about it and has
said she doesn’t want the doctor to tell her any more. The team talked to her about
her care and where she would like to be and she said she wanted to be at home.
This was documented in a PPC
The team know that Betty has a fear of hospitals and uniforms and have tried to
provide all her care needs at home, however Betty becomes more poorly and a
blood test reveals that her serum calcium level is 3.5 mmol/l, hypercalcaemia was
diagnosed. Betty’s doctor , respecting her wishes to remain at home did not take
any action. Her condition deteriorated and the team discussed with her the need to
go into hospital for a short time to treat the problem, Betty agreed.
She was admitted and treated but developed a chest infection and the hospital
doctors wanted her to stay in during the time she was having antibiotics, but Betty
was adamant that she wanted to go home and sat with the PPC on her lap insisting
on going home. Her discharge was arranged and her care needs were met at
home, Betty died at home a few days later.
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.
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
.
Mrs. E 58 year old lady with type II respiratory failure
Mrs. E was very passionate about her future plans and having the right to
choose her preferences and priorities for future care. A PPC was completed
within the acute hospital setting with a nurse specialist following an
exacerbation of her condition. Within the PPC Mrs. E recorded her wish to die
at home, to spend time at home with her grandchildren and to make peace with
her estranged son. Mrs. E was discharged home with her PPC to die in her
preferred place of care.
After three months Mrs. E was admitted back into hospital and the PPC was
brought in with her. The professional who instigated the PPC went to talk with
Mrs. E regarding her readmission and her preference to die at home. Mrs. E
was very frightened due to her deteriorating condition and was struggling to
breathe requiring considerable amounts of medication and reassurance. She
altered her PPC so that her preferred place of death was within the hospital, on
the hospital ward where she new the staff and where she could be provided
with the security of 24 hour care. However Mrs. E was at peace as she had
spent time at home with her son and grandchildren and felt she had fulfilled her
wishes. Mrs E died peacefully five days later with her family surrounding her on
the hospital ward.
The PPC is about more than just
completing a document – it is about
mutual trust, dignity and respect. It
provides a “wish list” for patients and lays
the groundwork for advance care
planning. The district nurses saw this as a
major benefit as it gave patients and
relatives an insight into what to expect
Tracey Reed, Nursing Times May 2011
Where to begin?
ACP How to Guide…
PPC Resources…
PPC Notification Form
For more information on PPC
Les Storey National Lead (PPC)
[email protected]
07836799094
National End of life Care Programme
[email protected]
www.endoflifecareforadults.nhs.uk
Selection of PPC Publications…
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Reynolds J, Croft S (2011) Applying the Preferred Priorities for Care document in practice. Nursing Standard, 25,
36,35-42
Reed T (2011) How effective is the preferred priorities of care document? Nursing Times; 107: 18, 8th May 2011
Greaves C, Bailey E, Storey L, & Nicholson A (2009) Implementing end of life care for patients with renal failure.
Nursing Standard, vol23 no52 pp35-41.
Storey L. (2008) End of life Care: what options are available to patients? British Journal of Heathcare Assistants.
Vol. 2 No. 3. pp 149-153. ISSN 1753-1586
Storey L (2007) Introduction to the Preferred Place (Priorities) of Care tool. End of Life Care Vol 1 no 2 pp68-73
Wood, J., Storey, L., and Clark, D. (2007). Preferred place of care: an analysis of the 'first 100' patient
assessments. Palliative Medicine. 21. 5. 449-450
Storey l, Callagher P. Mitchell D, Addison-Jones R & Bennett W (2006) Extending choice over where to receive
end-of-life care to motor neurone disease patients. British Journal of Neurological Nursing. Vol 2 No 10.
Foster J, Harrison T, Whalley H, Pemberton C & Storey L (2006) End of Life Care: Making Choices. Learning
Disability Practice Vol 9 No 7
Storey L, Wood J, & Clark D (2006) Developing an evaluation strategy for ‘Preferred Place of Care’. Progress in
Palliative Care: Vol 14 (3) pp 120-123.