Preferred Place of Care Preferred Priorities for Care at the End of Life

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Preferred Place of Care Preferred Priorities
for Care at the End of Life

• Les Storey
• National Lead, End of Life Care Programme
• Principal Lecturer, University of Central
  Lancashire

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Neuberger, J. (1999) Dying Well. A Guide to
enabling a Good Death.Hochland Hochland Hale.

• We will only achieve a real change, allowing
  ourselves to express our fears and hopes and
  desires if we are able and prepared to face the
  issue of how best to meet our end, and the end of
  those we love and respect, by discussing,
  talking, arguing, planning and by resolving what
  is still a very patchy situation in this country,
  where we only get the chance of a good death by
  battling against the odds.

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• Originally Developed at Lancashire and South
  Cumbria Cancer Services Network
• by
• Les Storey, Chris Pemberton and Anne Howard

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Introduction

• The PPC is a tool to determine and record patient
  and carers wishes in relation to their care and
  ultimate place of death.
• A nationally recognised tool for all palliative
  care patients.

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• The time has now come for the next stage
  the introduction of palliative care into
  mainstream medicine to give relief but also
  choice to each individual and family.
• Dame Cicely Saunders WHO 2004 Palliative Care
  The Solid Facts
• We were actually trying to offer a service to
  an area rather than a little bit of heaven for a
  few
• Richard Hillier, cited in Clark et al 2005

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National Initiatives

• Choice, Responsiveness and Equity Document.
• NICE Guidance on Supportive and Palliative Care
  for Adults with Cancer
• Building on the best end of life initiative

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Building on the Best- End of Life Initiative

• The success of the initiative reaching non-cancer
  patients will depend on increasing the use of
  LCP, GSF and PPC in DGH, Primary Care and Care
  Homes resulting in
• Greater choice for patients in where they wish to
  live and die
• Decrease in number of emergency admissions of
  patients who wish to die at home
• Decrease in the number of older people
  transferred from a care home to a DGH in the last
  week of life

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Hospital deaths in Wolverhampton in 2003

• Cancer
• 46 are dead within 1 week of admission
• 67 are dead within 2 weeks of admission

• Heart Failure
• 53 are dead within 1 week of admission
• 67 are dead within 2 weeks of admission

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Comparing Costs

• Hospital Care 4,200 per week
• Community Care 2,500 per week
• Dispatches Channel 4 18th July 2005

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Patient Pathway
GSF/PPC
LCP
supportive and palliative care
deterioration
death/bereavement
Preferred Place of Care (PPC) Gold Standards
Framework (GSF) Liverpool Care Pathway (LCP)
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NICE Supportive Palliative Care Guidelines
24.03.04

• Patients with palliative needs are identified and
  a management plan discussed with MDT.
• Needs and preferences should be noted, planned
  for and addressed.
• Preferred place of care and place of death are
  discussed, noted and measures taken to comply
  where possible.
• Providers should ensure systems are in place to
  obtain rapid and safe discharge for those who
  wish to die at home.
• Carers are educated, enabled and supported.

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Why do patients not die in their Place of Choice?

• Inadequate assessment of patient needs and
  preferences.
• Poor coordination of care.
• Poor face to face communication.
• Lack of Information.
• Lack of 24 hour 7 days a week D. Nursing.
• Inadequate communication between day and out of
  hours medical services.
• Inadequate equipment.
• Aging carers or poor family support.

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A survey by the Commission for Health
Improvement/Audit Commission (2002)

• Have access to high quality information materials
  in a variety of media, such as leaflets,
  booklets, videos, and the Internet
• Undergo only those interventions for which they
  have given informed consent
• Die in the place of their choice, if possible
• Be assured that their carers will be supported
  throughout the illness and in bereavement.

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The intention at the outset was that the
Preferred place of care would- record patient
choice, would allow reviews at different points
in their trajectory of care, in a variety of
differing health and social care settings .
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The Preferred Place of Care Document

• Guidance notes
• Demographic Data
• Family Profile
• Carers Needs

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Identifying and Recording Preferences

• In relation to your illness what has been
  happening to you?
• Have you had any particular thoughts about your
  care? What would you like or not like to happen?
• Place of Care - Choices

• The explicit recording of patients/carers wishes
  can form the basis of care planning in
  multi-disciplinary teams and other services,
  minimizing inappropriate admissions and
  interventions.

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Services

• The PPC also records
• services available,
• services being accessed
• reasons for changes in the planned care.
• It is important that patients have a choice in
  the care they receive and where they receive it,
  although on occasions circumstances will change
  which will make the preferred choice
  unachievable. This should be discussed in
  advance.

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Benefits of Using the PPC.

• Patients and family have choices.
• Choices and Changes recorded.
• Care trajectory is monitored.
• Resource implications for services can be
  determined and used to plan future provision.
• Education needs of patients, carers and
  professionals can be identified and met.
• Meets many NICE recommendations.

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Feedback from other organisations using PPC

• Potentially the most important development in
  services for people with MND
• Nurses have increased their levels of confidence
  in their communication with dying patients and
  relatives
• As a result of this project, difficult, complex
  discussions are managed at an earlier stage of
  the patients illness
• Collaboration between primary healthcare teams
  has improved
• Patients have confirmed their wish to remain
  involved and to be included in any discussion
  around the planning of care at the end of their
  lives

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Issues for Implementing PPC

• Timing
• Resources
• Confidence of practitioner

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Maintaining Hope until Death.

• If choices and control foster hope, then we have
  a duty to facilitate this through-
• Discussions with patients and their carers
• Documentation of choices and preferences.
• Multiprofessional working to meet the goals.

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• Robert, aged 19 had osteo-sarcoma, later
  developed secondaries
• He had declined specialist input
• He had stated that when his time to die came, he
  wanted to be at home he was offered a PPC
• one Friday evening his condition deteriorated,
  his parents called the OOH hours nursing staff
  who were reluctant to administer the anticipatory
  drugs.
• OOH GP contacted who visited and said he would
  have to be admitted to hospital, and contacted
  Paramedics
• However, when they arrived, Roberts mum, Julie
  met them at the door, and forced them to read
  what Robert had written on the PPC.
• The paramedics requested that the doctor revisit,
  and a different doctor then called who set up
  syringe driver.
• Robert settled after this he was lucid and calm,
  with no complaints other than the dyspnoea .
• Robert died at home, as he wished, with all his
  family and friends in the room, his dog under the
  bed, and his beloved mobile phone still in his
  hand.

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Current Activities/Discussions

• Care Home Pilot Care of elderly
• Sue Ryder Neurology Care Homes including
  neurological homes and Hospices
• Lancashire Motor Neurone Disease Care Centre
• South Essex, Cheshire and Mersey, Sunderland
• Learning Disability developing user friendly
  version
• Ambulance awareness and flagging patients
• Developing evaluation strategy with International
  End of Life Observatory

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For more information on PPC

• www.cancerlancashire.org.uk
• www.cancercumbria.org.uk
• End of life Care Programme
• www.endoflifecare.nhs.uk

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Contact details
Claire Henry Programme Director Mobile 07768
145952 Sally Cook Programme Administrator Office
Tel [phone] Fax [phone] Mobile
07770 544899 www.modern.nhs.uk/cancer/endoflife En
d of Life Care Programme St Johns House, 3rd
Floor East Street Leicester LE1 6NB
Keri Thomas, National Clinical Lead Gold
Standards Framework (GSF) Helen Meehan, Lead
Nurse Office Contact Katherine Jarvis Tel 0121
465 2029 Email info_at_goldstandardsframework.co.uk
John Ellershaw, National Clinical Lead Liverpool
Care Pathway (LCP) Deborah Murphy, Lead
Nurse Office contact Carole Eaton Tel [phone]
1490 Email lcp_at_mariecurie.org.uk Les Storey
National Lead Preferred Place of Care
(PPC) Mobile [phone] Email
lstorey_at_uclan.ac.uk