END OF LIFE CARE

1
END OF LIFE CARE
GP and consultant workshopGreat Oaks
Hospice25th April 2007
2
Thank you to our sponsors.

• Roche Products Ltd

3
A G E N D A
4
23rd January Event

• Choose and Book
• Looked at problems and solutions
• Recognise still problems
• We are working hard to identify blocks and put
  them right where we can

5
AIMS FOR THIS EVENING

• To identify the key interface issues between
  primary and secondary care in relation to end of
  life care
• To challenge current thinking and views for the
  better
• To understand and to receive an update on the
  Gloucestershire Palliative Care Review
• To identify gaps and issues in current pathways
  and service
• Identify solutions and action to make improvement

6
A PATIENTS STORY

• Paul Baker

7
Liz and Pauls cancer journey

• Case history of Liz (DOB 23/11/45)
• Diagnosed with ? cerebellar tumour on MRI at
  Hereford County Hospital 24/05/04
• Transferred to neurosurgery at QEH and had a
  complete surgical resection of tumour on
  03/06/04 confirmed as a Glioblastoma Multiforme
  (Grade IV Astrocytoma) on discharge home
• Commenced radiotherapy at CGH Oncology, receiving
  30 fractions over 6 weeks, from July-August 04

8
Liz and Pauls cancer journey

• Regular follow up by Oncology Consultant in
  outpatients with 3 monthly MRIs
• Clinical deterioration March 05 with poor
  balance, proximal weakness, mild episodes of
  temporal lobe epilepsy and cognitive dysfunction
  (memory problems)
• Repeat MRI revealed tumour had spread to temporal
  frontal lobes
• Commenced temozolomide as part of MRC trial April
  05
• Received regular physio. visited St Michaels
  Day Hospice regularly for respite

9
Liz and Pauls cancer journey

• 3 monthly MRIs showed some improvement on
  temozolomide, neurologically stable for 8 months
• Admitted to CGH Oncology 19/12/05 with
  haemorrhage into cerebellar tumour and associated
  hydrocephalus causing fluctuating consciousness
• Some improvement clinically, but now bed-bound
  and requiring full nursing care moved to St
  Michaels Hospice 30/12/05 for symptom control
  (vomiting)
• Discharged home 13/02/06 with QDS package of care
  (2 carers), district nurse and Marie Curie input
• Progressive deterioration (after fathers
  funeral), drifting in out of consciousness, on
  syringe driver
• Died peacefully on 26th Feb 06 at home, family
  present

10
Liz and Pauls cancer journey

• Areas for improvement in continuity of care
  identified (23 separate services involved).
  Considered under 3 headings-
• 1) Communication
• 2) Technical knowledge, expertise attitude
• 3) Access to availability of support -
• Emotional, physical
• Financial

11
Communication

• Relating to the importance of continuity of care
  for the patient and support to the family
• Making services patient/family centred rather
  than service provision centred
• Achieved by collaborative working to provide a
  seamless service provision as experienced by the
  patient/family
• When faced with a serious/terminal diagnosis,
  patients and families have difficulty
  understanding and taking information in.
  Communicating bad news requires considerable care
  sensitivity, explaining at the same time the
  support that is available and how to access it

12
Communication between primary and secondary care

• GP Practices
• Early diagnosis is critical to outcome
• Organise early referral to support services e.g.
  Macmillan Nurse, Social Services, OT, Physio etc.
• Hospital to Hospital
• Liaison between Hospitals (QEH,CGH,Hereford
  Hospital)
• Hospital to GP Surgery
• Ensuring GP Surgeries not missed out of
  communication loop or given inadequate
  information upon discharge from hospital
• Home Care Service
• Ensure HCAs turn up at allotted time, in number
  required to carry out service plan, with adequate
  training experience

13
Technical Knowledge/Expertise/Attitude

• General Practioners
• In Lizs case her presenting symptoms were
  non-specific (dizziness and vomiting) and this
  contributed to a delay in diagnosis. Could a
  red flag system help with early diagnosis in
  cases that arent clear cut?
• Signposting patients to appropriate services eg.
  Macmillan Nurses
• Home Care Services
• Underpinning knowledge practical experience of
  dealing with terminally ill patients
• Communication with patients with limited
  understanding
• Sharing patient care plans with District Nurses
  ( vice versa)
• Ambulance Service
• Ambulance staff being permitted to carry out more
  extensive moving and handling manoeuvres
• Is patient taken to Oncology Centre when unwell
  if out-of-county?

14
Access to availability of support

• Emotional / Physical Support
• Emotional support, not only of patient, but also
  family/carers is essential
• It is required throughout the cancer journey,
  especially at points of crisis and the terminal
  stages
• Continuing support for family/carers after the
  death of the patient is important

15
Access to availability of support

• Financial Support
• Perhaps the most difficult to source
• Depending on individual/family situation can be a
  major stressor. Where illness is protracted this
  is particularly important
• Large volume of information available, but it is
  knowing where it is hidden and how to access it
  (long complex forms to complete)
• PCT Funding for continuing care. Post code
  lottery?

16
Patient/Carers Suggestions for Improvement

• Improved Communication/Support
• Appointment of Key Worker (Care
• Co-ordinator), (under NICE Guidelines ..the
  fulcrum or linchpin in the care process)
• A Care Plan Patient Pathway (Single Assessment
  and Care Records)
• More accessible information (sign posting) on
  sources of help support
• Being put in contact with sources of support

17
Patient/Carers Suggestions for Improvements

• Improved Knowledge and Awareness
• Home Care Service. More qualified experienced
  in handling terminally ill patients, allocated
  more precisely to match needs
• Ambulance Service. Staff permitted to carry out
  more extensive patient moving and handling
• GPs. (with patients consent) offer introduction
  to Macmillan services at early stage. Also
  signpost to Cancer Backup http//www.cancerbackup.
  org.uk/Home
• Equipment Suppliers. Prioritise supplies check
  equipment before dispatch

18
Patient/Carers Suggestions for Improvements

• Improved Collaborative Working
• Become Patient (also Family/Carer) focussed.
  Provide what we want, which may not be what is
  thought is needed
• Work towards a seamless service provision, with
  continuity of service delivery (see Key Worker
  and Patient Care Plan approach)
• Close working of primary and secondary care
  services (Hospitals GP other services)
• Common patient data base, with controlled levels
  of access

19
And Finally!

• Having recognised where we (patient/family/carers)
  are on the cancer journey, it is down to the
  Quality of Life for all concerned
• It is often the (simple?) practical, physical,
  emotional, empathetic care and support that means
  to much to us, which mostly means just Better
  Communication

20
Developing a Commissioning Framework for
Specialist Palliative Care in Gloucestershire

• Jackie Huck
• Gloucestershire PCT

21
A collaborative Project Gloucestershire
Hospitals NHS Foundation Trust, Sue Ryder Care,
Cotswold Care Hospice and Gloucestershire PCT
22
The Gloucestershire Strategy

• Lack of specialist support to community
• No clear definition of meaning of specialist
  and the impact this has on bed provision
• Lack of clarity over provider roles and
  responsibilities, leading to inequity and
  fragmentation of provision
• A provider led service that lacks a clear
  commissioning framework

23
Project Structure
24
Project Timescales

• First SOG workshop February 14th 2007
• Final SOG workshop end May 2007
• Presentation to Executive Steering Group 25th
  June 2007

25
Workshops

• Outcome To establish an agreed model,
  implementation plan and evaluation framework
• Service scope
• core specification
• relationship with other services
• inter-related working
• patient pathway
• specialist advice
• roles
• referral criteria
• access

26
Integrated Model

• Single point of access
• 24 hour advice
• Therapeutic day care
• Specialist hospice beds
• Hospice in a hospital bed
• Family support
• Training and education
• Enabling/disabling factors eg. IT, employment
  issues

27
END OF LIFE CARE

• Collette Reid Palliative Care Consultant
• Pippa Medcalf Elderly Care Consultant

28
The principles of geriatric medicine

• Few sick old people are suffering from old age

29
The principles of geriatric medicine

• Many ill old people who present to geriatricians
  do so in a non-specific way.
• Common presentations are
• Falls
• Reduced mobility
• Confusion
• Incontinence

30
The principles of geriatric medicine

• These are not social problems they are
  medical problems in disguise.
• It can take much skill and experience to
  elucidate the underlying causes of these
  problems.

31
The principles of geriatric medicine

• Every ill old person deserves a diagnosis.

32
The principles of geriatric medicine

• In some cases, the diagnosis should be made
  urgently, before the person deteriorates or
  develops complications.

33
The principles of geriatric medicine

• Rehabilitation, optimising function and
  wellbeing, is of central importance and many
  aspects have a strong evidence base.
• In most cases it should begin on day one of an
  illness.
• New medical problems may arise and further
  geriatric input may be needed.
• It is therefore important to maintain and
  perhaps expand rehabilitation services in acute
  units and ensure that rehabilitation teams have
  ready access to a geriatrician.
• Separating acute care from rehabilitation is not
  always in the patients interests.

34
The principles of geriatric medicine

• The key to successful management of older people
  is Comprehensive Geriatric Assessment (CGA).
• This requires a skilled inter-disciplinary team
  who work with patient and family to assess
  physical, psychological, functional, social and
  other aspects in order to improve health,
  function and well-being.

35
Care elements of service for people with terminal
disease

• Assessment and diagnosis
• Control disease progression and prevention of
  complications
• Management of symptoms, eg pain, depression,
  breathlessness etc
• Provision of therapy, spasticity management etc
• Provision of aids, equipment, eg aids to daily
  living, environmental control systems

36
Care elements of service for people with terminal
disease

• Practical coordination of support services
  including NHS, voluntary, social services etc
• Social and psychological support
• Spiritual support
• Management of death
• Aftercare and bereavement support

37
PPC Factors influencing achieving death at home

• Functional status (death predicted)
• Expressed preference
• Home care availability and frequency
• Living with relatives
• Being able to count on extended family
• Gomes and Higginson BMJ 2006 332 515-521

38
PPC Does everyone want to die at home?

• Older peoples views about home as a place of
  care at the end of life
• Gott and colleagues Pall Med 2004 18 460-7
• Place of death preferences among cancer patients
  and their carers
• Thomas and colleagues Soc Sci Med 2004 58(12)
  2431-44

39
If we cant ensure a home death, what can we
offer as options?

• General hospital?
• Community hospital?
• Nursing home?
• Hospice?

40
Shouldnt our aim be to ensure good deaths in
all care settings?

• Home
• General hospital
• Community hospital
• Nursing home
• Hospice

• ?GSF, ?ICP
• ?ICP, ?PCT
• ?ICP, ? use elderly care model of joint working
• Education, ?ICP, ?community PCT
• ?ICP

41

• Recognising dying (the surprise question)
• Communication
• Advanced planning (proactive vs. reactive)
• Symptom control
• Education
• Use of audit, critical incident analysis,
  complaints and research to make sure we are
  getting it right

42
End of life care a GP viewDr Simon Silver

• Working without a crystal ball

43
GROUP DISCUSSIONPathways, blocks and gaps
44
SUMMING UP AND CLOSE
45
Let us know what you think about our web site and
what information you would find helpful
Irwin.Wilson_at_glos.nhs.uk
46
NEXT EVENTTuesday 17th July 6.30 for 7
pmVenue tbcTop topics? Let us know on
evaluation forms please