Preferred Priorities for Care

1
Preferred Priorities for CareAn Advance
Statement of Preferences and Wishes
2
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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Preferred place of death in England

• Source What we know that we didnt know a year
  ago (2012)
• http//www.endoflifecare-intelligence.org.uk/resou
  rces/publications/what_we_know_now.aspx

4
The reality

• Source What we know that we didnt know a year
  ago (2012)
• http//www.endoflifecare-intelligence.org.uk/resou
  rces/publications/what_we_know_now.aspx

5
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 patients wishes can
  form the basis of care planning in MDTs and
  other services, minimizing inappropriate
  admissions interventions
• http//www.endoflifecareforadults.nhs.uk/publicati
  ons/end-of-life-care-national-audit-office-report

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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 didnt know a year
  ago (2012)
• http//www.endoflifecare-intelligence.org.uk/resou
  rces/publications/what_we_know_now.aspx

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How can we support more people to die in the
place of their choosing (where possible)?
8
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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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.endoflifecarefor
  adults.nhs.uk/publications/pubacpguide

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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

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ACP It all ADSE upA Ask

• ACP discussions may cover
• the persons 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 persons preferences for future care and/or
  treatments
• the persons concerns, fears, wishes, goals,
  values and beliefs, need for spiritual or
  religious support

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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.

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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

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Preferred Priorities for Care
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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

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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
  persons best interests when making decisions
  about their care.

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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).

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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       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       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       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 ... 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 ... 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 ... 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 Name of person initiating the document Designation Place of Work Date Contact No Name of person initiating the document Designation Place of Work Date Contact No 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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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

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Some benefits of using the PPC

• 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-stud
  ies/barnsley-preferred-priorities-for-care-pilot-s
  tudy-audit

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.

• West Essex Audit identified that 83of
  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/do
  wnloads/PPC_Evaluation_West_essex_Feb2010.pdf

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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 individuals

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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 cant breathe
• I have a brain tumour and I am really frightened
  

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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 dont want to go into hospital

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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 dont care

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• 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

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Examples of case studies highlighting the impact
of the PPC
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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 doesnt want to talk about it and has said
she doesnt 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. Bettys 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.
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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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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.
Peggys 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 Peggys 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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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.


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• 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

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Where to begin?ACP How to Guide
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PPC Resources
PPC Notification Form
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For more information on PPC

• Les Storey National Lead (PPC)
• lesstorey_at_gmail.com
• 07836799094
• National End of life Care Programme
• information_at_eolc.nhs.uk
• www.endoflifecareforadults.nhs.uk

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Selection of PPC Publications

• 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.