End of Life Care Planning and Preferred Priorities of Care

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End of Life Care Planningand Preferred
Priorities of Care
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End of Life Care Key Issues

• 1 of the population dies each year (for
  Sheffield this means circa 5000 deaths pa)
• 17 increase in deaths from 2012
• 40 of deaths in hospital could have occurred
  elsewhere (NAO)
• Most people would probably like to die at home
• Only around 18 do so with a further 17 in care
  homes
• Acute hospitals account for 58 of deaths
• Around 4 patients die in hospice

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Need to improve End of Life Care

• The Health Care Commission, 2007 (UK)
• 54 of complaints about hospital treatment were
  about communication and preparation for death
• http//www.northmid.nhs.uk/assets/20070101_Jan_com
  plaints_PR_0-5.pdf

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End of Life Care Strategy 2008

• All people approaching the end of life need to
  have their needs assessed, their wishes and
  preferences discussed and an agreed set of
  actions reflecting the choices they make about
  their care, recorded in a care plan.
• In some cases, people may want to make an
  advanced decision to refuse treatment should they
  lack capacity to make such a decision in the
  future.
• Others may want to set out more general wishes
  and preferences about how they are cared for and
  where they would wish to die.

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Death, Dying and Society

• As a society we do not talk about death and dying
  this contributes to its low profile in health
  and social care
• Most people do not discuss their own preferences
  for end of life care with their partner/family,
  hampering individual planning
• Only around one third of the general public have
  discussed death and dying with anyone

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End of Life Care Planning

• Advance Care Planning (ACP)
• Statement of wishes and preferences
• Advanced Decision to Refuse Treatment
• Preferred Priorities of Care (PPC)
• Lasting Power of Attorney (LPA)
• Do Not Attempt Resuscitation (DNAR)
• Gold Standards Framework (GSF)
• End of Life Care Pathway (EoLCP)

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Advanced Care Planning (ACP)

• Voluntary
• It is a process of discussion between an
  individual and their care provider which may or
  may not include family and friends.
• Makes clear a persons wishes if their condition
  deteriorates and they lose mental capacity or
  ability to communicate wishes to others

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ACP Discussions

• Documented
• Reviewed regularly
• Communicated to people involved in their care
• May involve the family
• No set format for making a record

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ACP can lead to-

• Statement of wishes and preferences reflecting
  an individuals preferences and wishes in
  relation to future treatment and care
• Medical and non-medical issues
• NOT legally binding
• Used to determine a persons best interest should
  they lose mental capacity

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ACP can lead to-

• Advanced Decisionto refuse treatment
• Relates to refusal to specific treatment in
  specified circumstances
• Comes into effect when individual has lost
  capacity to give or refuse consent to treatment
• Assessment of the validity and applicability of
  an advanced decision is essential
• Legally binding

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Birth Plan Advance Care Plan

• Preferred Priorities for Care

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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.
• PPC has been identified within the End of Life
  Care Programme as an example of an Advance Care
  Plan

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Identifying and Recording Preferences

• 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?

• 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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Potential triggers to introduce PPC

• Following life changing event
• Following diagnosis of a life limiting illness
• During assessment of a persons need
• Following a significant shift in treatment
• In conjunction with prognostic indicators
• Multiple hospital admissions
• Admission to a care home

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PPC as an Advance Care Plan

• Enables initiation of End of Life Care decisions
• Facilitates recording of Preferences and
  Priorities
• May identify potential need for Advance Decisions
  to Refuse Treatment to be initiated
• Accessible Version enables Best Interest Process
  to be followed
• Under MCA preferences SHOULD be taken into
  account

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Communication skills being prepared

• P Prepare for Discussion
• R Relate to the person
• E Elicit patient and carers preferences
• P Provide information
• A Acknowledge emotions and concerns
• R Realistic hope
• E Encourage questions
• D Document
• Cited by Keri Thomas (2007)

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Examples of Questions?

• Can you tell me about your current illness and
  how you are feeling?
• Could you tell me what the most important things
  are to you at the moment?
• What fears or worries, if any, do you have about
  the future?
• In thinking about the future, have you thought
  about where you would like to be cared for if
  your illness gets worse?
• What would give you most comfort when your life
  draws to a close?

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When to do it

• Part of routine clinical practice
• Initiated in patients with long term conditions
  or receiving end of life care
• depending on prognosis and pattern of disease
  progression
• Helps to avoid stress and anxiety regarding the
  future

Clinical Medicine 2009 9(1) 76-79
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Where

• In primary care or OPD before patient too unwell
• Admission to a care home
• Making or changing a will

Clinical Medicine 2009 9(1) 76-79
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Who

• Appropriate trained person who has rapport with
  the patient e.g. GP, nurse
• Individual encouraged to choose who they want to
  include in the discussion
• Does not necessarily need to be a health care
  professional

Clinical Medicine 2009 9(1) 76-79
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Skills required - Recording

• Medical records to contain specific section for
  ACP
• Register created which stores details about an
  individual's ACP document and should be readily
  accessible

Clinical Medicine 2009 9(1) 76-79
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8.4 of GPs in UK are addressing ACP

• Palliative Med 2010 24(1) 68-78

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Summary
Statement of wishes and preferences Wish to
happen Not legally binding
Advanced care Planning ACP
Advanced Decision DO NOT wish to happen Legally
binding
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Lasting Power of Attorney (LPA)

• Statutory form of power of attorney
• Patient chooses a person to take decisions on
  their behalf if they lose capacity
• Personal and financial welfare
• Register with Office of Public Guardian

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Benefits of LPA

• Manage affairs while still able
• Ensuring that wishes are met
• Peace of mind
• Decreasing burden on loved ones
• Keeping peace within the family

• J Am Geriat Soc 2009 57(9) 1547 1555

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Barriers to LPA ACP

• Too difficult to think about dying
• Lack of knowledge
• Planning not necessary because family know what
  to do
• Future in Gods hands suffering necessary
• Doctor will make decisions
• No medical choices to be made
• No one available to be surrogate decision maker
• Fear treatment withdrawn too soon
• Family feel unable to discuss ACP

• J Am Geriat Soc 2009 57(9) 1547 1555

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Do Not Attempt Resuscitation (DNAR)

• Cardio pulmonary resuscitation (CPR) is
  undertaken unless a DNAR order exists
• For the vast majority of patients receiving care
  in hospital no advance decision is made unless
  CPR is thought to be futile

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When is DNAR appropriate?

• Where CPR is contrary to the competent patients
  wishes
• Where attempting CPR will not restart the
  patients heart and breathing
• Where there is no benefit in restarting the
  patients heart and breathing
• Where the expected benefit is out weighed by the
  burdens

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Should patients be involved DNAR decisions?

• People have ethical and legal rights to be
  involved in decisions that relate to them
• Where patients are at foreseeable risk of
  cardiopulmonary arrest, or have a terminal
  illness, there should be a sensitive exploration
  of their views regarding CPR
• Discussion should be part of general discussions
  about that persons care

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What if patients dont wish to be informed re
DNAR decisions?

• If patients indicate that they do not wish to
  discuss resuscitation this should be respected
• Although their views have no legal status, it is
  good practice to involve people close to patients
  in decisions
• Doctors may disclose confidential information to
  people close to the patient where this is
  necessary to discuss the patients care and is
  not contrary to the patients interests

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Difficult Discussions Re ACP and DNAR

• I still find this area very difficult. Patients
  feel abandoned when told there is no further
  active treatment
• The subject didnt crop up
• The patient or family didnt ask

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The Gold Standards Framework

• A framework to deliver a gold standard of care
  for all people approaching the end of their lives
• It is not disease specific
• A systematic approach to optimising the care
  delivered by healthcare professionals
• Developed from primary care for primary care
• On National Agenda and GPs can claim QOF points

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Principles of GSF - The Seven Cs

• 1 Communication
• 2 Co-ordination
• 3 Control of symptoms
• 4 Continuity out of hours
• 5 Continued learning
• 6 Carer support
• 7 Care of the dying

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7 key tasks and step by step implementation of GSF

• Level 1 Supportive Care Register and PHCT
  meeting C1 and identified co-ordinator C2
• Level 2 Assessment tools C3, Out of Hours
  handover C4, education, audit and reflective
  practice C5
• Level 3 Carer/family support, bereavement plan
  C6 and protocol for final days (Sheffield End of
  Life Care Pathway) C7
• Level 4 Sustain and build on developments,
  practice protocol, extend

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End of Life Care Pathway (EoLCP)

• Originates from the Liverpool Care Pathway
• EoLCP facilitator appointed to Sheffield Teaching
  Hospital (STH) 2007
• Rolling programme to implement EoLCP throughout
  STH
• St Lukes STH EoLCP documentation
• Next Phase STH EoLCP documentation to be
  implemented in Primary Care

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References

• End of Life Care Strategy. Professor Mike
  Richards (Chair) Department of Health. July 2008
• Improving Supportive and Palliative Care for
  Adults with Cancer. Nice, 2004
• www.endoflifecareforadults.nhs.uk
• www.resus.org.uk/pages/dnar.pdf
• www.ncpc.org.uk/publications
• www.dca.gov.uk/legal-policy/mental-capacity/public
  ations.htm
• www.publicguardian.gov.uk/mca/code-of-practice.htm
  

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Robert

• 19 year old had osteo-sarcoma,
• He knew he was dying, he wanted to be at home
• The Friday night crisis
• OOH Service contacted GP contacted Paramedics
• Roberts mum, Julie confronted them and forced
  them to read what Robert had written on the PPC.
  
• Paramedics requested that the doctor revisit, and
  a
• Different doctor then called and 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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PPC in Renal Failure
B a long term dialysis patient over twenty years
on treatment. He had a transplant which failed,
Dialysed at home, lost a limb due to long term
effects of Renal failure and had a false eye. He
did not want to be resuscitated if he went off
and that if he became too ill to continue
dialysis he wanted to die at home or in a
hospice. He was referred to Dr to discuss
resuscitation status B was admitted to another
hospital having deteriorated over a matter of
weeks. He was diagnosed with a chest infection
but his condition was very poor. Renal Unit
staff contacted ward to discuss PPC, the nurse
had not seen one before but had read it and then
discussed Bs options and prognosis with him and
his family. B died in the hospital although not
his first place of choice he and his family were
satisfied as the staff had ensured privacy and
dignity and the appropriate level of support