Innovation in Palliative Care

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Innovation in Palliative Care

• Eve Richardson Lucy Sutton
• Chief Executive National Policy Lead

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What is the National Council?

• The umbrella body for palliative care
• Influences government policy
• Promotes the extension of palliative care for all
• Supports all sectors involved in providing,
  commissioning and using palliative care services
• Provides guidance on best practice

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Palliative Care is

• .the active holistic care of patients with
  advanced, progressive illness. Management of pain
  and other symptoms and provision of
  psychological, social and spiritual support is
  paramount. The goal of palliative care is
  achievement of the best quality of life for
  patients and their families. Many aspects of
  palliative care are also applicable earlier in
  the course of the illness in conjunction with
  other treatments. (NICE, 2004)
• EoLC

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• Sir Nigel Crisp March 03
• Our aim is that every person should be able to
  live well and die well in the place and in the
  manner of their choosing.

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Increasingly Important Why?

• Around 500,000 people die in England each year
• Some patients receive excellent care, others do
  not
• 54 of complaints in acute hospitals relate to
  care of the dying/bereavement care (Healthcare
  Commission 2007)
• Hospices have set a gold standard for care, but
  only deal with a minority of patients at the end
  of their lives

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Major mismatch between peoples preferences

• For where they should die and their actual place
  of death
• Most would probably like to die at home
• Only around 20 do so with a further
• 20 in care homes
• Acute hospitals accounting for gt50
• Around 4 in hospices
• Only around one third of general public have
  discussed death and dying

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Social and cultural taboos and the challenge for
awareness raising
The issue of better end of life carewill not be
resolved until health andcare staff learn to
embrace death as anormal part of life and until
we educatethe public about dying and what
theyshould and can expect.
Shirley Firth, Wider Horizons, 2001 Ethnicity,
Older People and Palliative Care
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A First End of Life Care Strategy

• Cover all conditions and settings
• Build on the experience of hospices and
  specialist palliative care services
• Build on the existing End of Life Care Programme
  (e.g. GSF, LCP and advance care planning)
• Build on Marie Curie Delivering Choice Programme
  and other innovative service models

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Steps End of Life Care Pathway

• Public awareness and discussion ? Discussion
  with patient as end of life approaches
  assessment care plan ? Coordination /-
  register ? Integrated service
  delivery(community, hospitals, care homes,
  hospices etc.) ? Review ? Last days of life
  ? Death ? Care after death

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EOL Care Pathway-Issues

• Initiating discussions about preferences for EOLC
• Patient and carer assessment of needs and
  preferences
• Planning care (and reviewing at intervals)
• Communication and co-ordination
• Service provision in different locations
• Physical environments
• Care in the dying phase of illness
• Support for carers and families and bereavement

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Causes of death
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Illness trajectories
A
Cancer
Organ failure
Dementia and decline
Sudden death
B
C
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Ageing Population

• Life expectancy is increasing. However, healthy
  life expectancy whilst rising, is not keeping
  track with that increase life expectancy and
  healthy life expectancy both increased between
  1981 and 2001, with life expectancy increasing at
  a faster rate than healthy life expectancy.
• Opportunity Age, WHO - Active Ageing Palliative
  Care The Solid Facts
• Baby Boomers/ Choice Agenda

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Death in Older Age

• Over 500,000 people died in 2005
• 84 over 65
• 51 over 80, an increase of 100 is predicted
  between 2005 and 2031 there was also a 100
  increase in deaths in this age group between 1981
  and 2001

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Death in Older Age

• A high proportion of 85 will die either in
  community hospitals or care homes, many do not
  wish to be a burden
• Increasing number of people with dementia- 1 in 5
  over 80 and 60 of care home population
• 66 need palliative care but many are excluded -
  through diagnosis and sector

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Headlines from Studies

• Dying is an unequal experience
• by age, by diagnosis
• by gender, by area
• over 85s especially disadvantaged
• More people now have dementia than cancer- some
  symptoms similar but new care models required
• few receive specialist palliative care compared
  to 56 of cancer patients

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How Older People Die

• Last months are living on thin ice
• general non-specific deterioration of health
• Dying older people not heard as individuals
• Under recognition of symptoms
• Lack of advance planning
• Backdrop of social isolation for many

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Older People views on end of life

• Diverse groups had similar issues
• being listened to about wishes at end of life
• control of pain and other symptoms
• comfort, dignity and peacefulness feature in
  accounts of good death
• perception that person-hood is removed many
  settings not conducive to individual care

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Living Alone

• ¼ European households live alone greatest in
  elderly with over 50 of 75 women living alone
• Being older and female ve association with death
  at home
• Co-morbidity increases risk of dying in hospital
• People do not want to die alone
• Carer burden increases with age family living
  within 10-15 miles decreasing

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NCPCs Focus on Care Homes

• Produced Palliative Care in Care Homes for Older
  People- shows innovation and good practice
• Work with the EolC Programme on rollout of the
  tools, LCP. GSF, PPC
• Produced Changing Gear-guidance for last days
• Produced guidance on understanding different
  cultures and faiths
• Working to support individual care homes/chains
  who subscribe to NCPC

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Guide to end of life care in care homes

• Launched June 2006
• Joint NCPC / EoLC publication
• Available free on line at www.endoflifecare.nhs.uk
  or by hard copy if you subscribe to NCPC
• 6th June 2007 event launch picking up EoLCP

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Dying Well

• 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.
• Neuberger, J. (1999)

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A Challenge

• A key target of all recent policy is reducing
  emergency admissions to hospitals from care homes
  in the last week of life
• And to see the care home as the persons own
  home
• What needs to be done to help you to address this?

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Developing NCPCs work

• Supporting the role out of the EOLC
• tools and what they offer care homes
• Focusing on new models of support
• Using our recent guidance to support care homes-
  Changing Gear
• Understanding the needs of people with Dementia

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• C1 Communication
• SC Register and Meetings, Pt info, PHR,
  Advanced care planning eg PPC
• C2 Co-ordinator
• Key Person, assessment toolls eg PEPSI COLA
• C3 Control of Symptoms
• Assessment, body chart, SPC ,ACP etc
• C4 Continuity Out of Hours
• Handover form OOH protocol
• C5 Continued Learning
• Learning about conditions on patients seen
• C6 Carer Support
• Practical, emotional, bereavement, National
  Carers Strategy
• C7 Care in dying phase- LCP / ICP for care in
  last few days

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GSF in Care Homes

• GSF aims to develop a practice-based system to
  improve the organisation and quality of care of
  patients in the last year of life in the
  community
• Successfully piloted in care homes rollout to
  100 underway

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PPC in Care Homes

• Tool to determine and record patient and carers
  wishes in relation to their care and ultimate
  place of death
• allows reviews at different points in their
  trajectory of care
• Patient held, for use in health and social care
  settings-highly suitable in care homes
• Build into advanced care plans-MCA

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The Liverpool Care Pathway (LCP)

• Provides an evidence-based framework for the
  delivery of care in the dying phase
• Provides demonstrable standards and outcomes of
  care for patients
• The framework has been recommended in the NICE
  Guidance for Supportive and Palliative Care
• Programme is based in the Marie Curie Palliative
  Care Institute Liverpool
• Rolled out to 60 of hospices and hospices
• Care homes taking this on- BUPA etc
• Formal research and evaluation programme

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• Goal 1 Current medication assessed and
  non-essentials discontinued
• Goal 2 As required subcutaneous drugs written up
  according to protocol (pain, nausea vomiting,
  agitation, respiratory tract secretions,)
• Goal 3 Discontinue inappropriate interventions
  (blood tests, antibiotics, IV fluids or drugs)
  document not for CPR
• Goal 3a Discontinue inappropriate nursing
  interventions
• Goal 3b Syringe Driver set up within 4 hours of
  Doctors order asssment of documentation and
  ongoing care
• Pain, agitation, respiratory tract secretions,
  nausea and vomiting
• Mouth care, micturition, medication given safely
  and accurately, syringe driver checked (where
  appropriate)
• bowels assessed 12 hourly

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LCP in Care Homes

• Developed to transfer the hospice model of care
  into other care settings focusing on the last few
  days of life
• A multi professional document which provides an
  evidence base framework for end of life care
• Empowers generalists in providing end care life
• Originally developed for acute hospitals and
  cancer but transfers to other settings
• Being adapted specifically for people with
  dementia

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The Importance of Dementia

• NCPCs recent findings

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The Older People Policy Group and Dementia
Estimated Numbers of People with Dementia in the
UK
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Prevalence of Dementia by Age
Between 50-60 of care home residents will have
dementia
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Making a Case for Palliative Care Need at an
Individual Level

• Patients with end stage dementia had a number
  of symptoms for which they did not receive
  effective palliative care analgesia was
  infrequently used, dying phase not recognised and
  some people given antibiotics inappropriately in
  last days of life. (Lloyd-Williams and Payne,
  2002)

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Main Difficulties

• 80 of people eating difficulties
• Artificial feeding neither reduces the risk of
  aspiration pneumonia, infections, pressure sores
  or malnutrition
• Incidence of depression high in advanced
  dementia. Psychosis in up to 40 Behaviour
  disturbance in up to 90

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• Uncertainty in Prognosis
• Difficult to assess when a person stops living
  with dementia and starts dying from it
• Important that services do not use expected
  length of life as part of their eligibility
  criteria if they are to meet the need of people
  with dementia
• Need better methods of predicting the approach of
  death to enable better planning of care,
  including good palliative care
• Recommend checklists of clinical indicators eg
  as in GSF

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• Communication Assessment
• Communication with people with late stage
  dementia will be a challenge but it is possible
• Research and experience demonstrate that it is
  possible and worthwhile to communicate with
  people in the later stages of dementia
• Communication may be in forms that are not verbal
  and/or difficult to interpret. The time and skill
  to interpret cues is key
• Crucial to understand that to the person with
  dementia what they are saying or communicating is
  true and is an expression of their feelings or
  experience
• It will be a challenge but it is essential to
  focus on the meaning behind the words

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• Supporting Relatives
• Carers of people with dementia experience greater
  strain, distress and higher levels of
  psychological morbidity than carers of other
  older people
• Early and ongoing discussions around end of life
  care between staff and family are essential
• Although uncertainty is a common feature of dying
  with dementia, not knowing is something carers
  find particularly hard to deal with
• Good palliative care relies on active listening
  to everyone involved and including family and
  carers in decisions about care
• Important that staff help carers to understand
  that while their views will be considered they do
  not have responsibility for end of life decisions
• Carers need access to-
• An information prescription signpost carers
  to sources of info and advice
• Short-term, home-based emergency respite care
• An expert carers programme

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Key Points

• All staff need to be aware of and be able to
  manage dementia as a significant co-morbidity in
  a range of conditions
• The incidence and prevalence of dementia is
  increasing with the ageing population so we need
  to address this now
• Unpaid carers deliver still deliver much of the
  care for people with dementia
• Palliative care models developed for people with
  cancer may well not be appropriate for those with
  dementia

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NCPC- Next Steps

• Understanding Co-morbidity and developing good
  practice- underway
• Care settings work and Primary Care Policy Group
• Identifying key triggers on the pathway
• Dementia project underway
• Scoping of current services
• User and Carer Views
• Forming new Partnerships
• Guidance and Learning Events
• Evaluating and recommending good practice

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Next steps for you ?

• How many of your residents die each year in your
  care?
• Do you undertake holistic assessments?
• Do all your residents have up to date care plans
  including end of life care?
• Can you and your staff identify the patients who
  are nearing the end of their lives?
• Do you and your staff talk with your residents
  about where they would like to live and die?
• What links do you have with other health and
  social care providers?

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Next steps for you?

• Are you using any of the end of life care tools ?
  Are others around you e.g. GP practices, acute
  trusts, community hospitals, hospices,other care
  homes?
• Do you know what the priorities of your
  commissioners are- is there a local end of life
  care strategy?
• How will you influence the emerging national end
  of life care strategy?
• Will you develop your organisations own action
  plan on this?

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To Know More

• Contact me at l.sutton_at_ncpc.org.uk
• Telephone [phone]
• Website www.ncpc.org.uk
• Sign up to E-News
• To receive all up to date Policy Guidance,
  subscribe to NCPC