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Palliative%20Care%20-%20Highland

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Title: Palliative%20Care%20-%20Highland


1
  • Palliative Care - Highland
  • Jeremy Keen

2
Palliative Care
  • The hospice movement is too good to be
  • true and too small to be useful.
  • For three decades it has traded successfully
  • On voluntarism and the fear of dying badly.
  • Colin Douglas BMJ, 1992

3
Hospice / Palliative Care
  • Provision of palliative care has no opt-out
    clause Derek Doyle
  • Echoed by
  • NICE
  • SIGN
  • QIS
  • Cancer in Scotland Action for Change

4
Assessment of Future Requirements of Highland
Hospice
5
Average annual deaths (all ages) from cancer by
place of death in sub-districts of Highland
(1997-2001)
Note Percentages not adding up to 100 due to
rounding-up errors Local Government district
as per postcode of usual residence
Includes prison childrens homes or other
contracts with nursing homes
6
Average annual deaths (all ages) from
non-malignant causes by place of death in
sub-districts of Highland (1997-2001)
Note Percentages not adding up to 100 due to
rounding-up errors Local Government district as
per postcode of usual residence Includes
prison other contracts with nursing homes
7
Our area
8
Demography Todays problem not tomorrows
  • The most important policy issue facing European
    Governments over the next 50 years is how to cope
    with ageing populations For Scotland the future
    is nowIts population is ageing faster and dying
    quicker than any other industrialised nation.
  • The Scottish Report Scotland the Grave (2003)

9
Implications for Care
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12
Policy context
13
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14
Highland Hospice
  • Employs 100 staff
  • 600 volunteers
  • Needs to raise 42,000 per week in addition to
    NHS Highland funding
  • 10 In patient beds (LoS 13.5d Discharge rate
    57)
  • 12 Day hospice places three days a week
  • Out patient services
  • Carer support groups
  • Patient self help groups

15
Highland Hospice
  • 24 hour telephone for community and hospital
    based professionals
  • Remote and rural outreach, GP Partnership program
  • PCAS
  • Teaching
  • Multi professional partnership with MCCC
  • Medical
  • Registered by Care Commission rigorous
  • Inspections
  • Standards
  • NHS Quality Improvement Scotland standards

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26
Hospice / Palliative Care
  • A patient should be able to live until he dies,
    at his own maximum potential, performing to the
    limits of his physical and mental capabilities,
    with control and independence wherever possible.
  • Dame Cicely Saunders

27
New Dimensions in Highland
  • Quality of Life is measured by the extent to
    which relationships can be preserved.
  • Dignity is measured by the extent that
    personhood can be maintained within those
    relationships

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29
Aims of palliative care
Symptom Distress
Existential Distress
Maintaining Dignity
Death
Diagnosis
Social Support
Dependency
Peace of Mind
30
Aims of palliative care
  • Symptom Distress
  • Physically distressing symptoms
  • Feeling depressed
  • Feeling anxious
  • Feeling uncertain
  • Worried about future
  • Not being able to think clearly
  • Existential Distress
  • Feeling how you look has changed
  • Feeling no longer who I was
  • Not feeling worthwhile or valued
  • Not being able to carry out important roles
  • Feeling life no longer has meaning or purpose
  • Feeling a burden to others

Maintaining Dignity
Death
Diagnosis
  • Dependency
  • Not able to perform tasks of daily living
  • Not able to attend bodily functions
  • Reduced privacy
  • Social Support
  • Not feeling supported by friends and family
  • Not feeling supported by healthcare providers
  • Not being treated with respect
  • Peace of Mind
  • Feeling have not made meaningful contribution
  • Feeling of unfinished business
  • Concerns regarding spiritual life

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33
Provision of Palliative Care
34
Provision of Palliative Care
Palliative Care Pharmacist
Community Pharmacist
Hospice OTs, Artists, PT
Hospice Chaplain
Community OT / PT / Dietician
Local Cleric
GP
F
Hospice Family Support Workers
Patient
Hospice Family Support Workers
Social Services
Macmillan CAB
Family / Carer
Care Home Staff
Marie Curie Nursing
Community Health Nurse
Hospice Educators
Home Carers
Hospice Nurses
CNS (e.g. Macmillan, CHF MND / CPN / CHAS)
Researchers
Hospice Physicians
35
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36
Provision of Palliative Care
Palliative Care Pharmacist
Community Pharmacist
Hospice OTs, Artists, PT
Hospice Chaplain
Community OT / PT / Dietician
Local Cleric
GP
F
Hospice Family Support Workers
Patient
Hospice Family Support Workers
Social Services
Macmillan CAB
Family / Carer
Care Home Staff
Marie Curie Nursing
Community Health Nurse
Hospice Educators
Home Carers
Hospice Nurses
CNS (e.g. Macmillan, CHF MND / CPN / CHAS)
Researchers
Hospice Physicians
37
Patient referral to specialist palliative care
38
New Dimensions in Highland
  • The Essence of Hospice
  • Resource
  • Sanctuary Resilience
  • Inspiration Growth
  • Learning

39
Inspire Highland
  • End of life care resource centre
  • Partnerships
  • Outreach team
  • Care home support
  • Community based information points
  • Virtual hospice
  • Education
  • Research and development

40
The plan
  • Identification of patient and carer needs.
  • Access to 24 hour community nursing
  • E-health
  • Increase confidence though education and training
  • Partnership with care homes
  • Public discussion about death and dying

41
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42
Palliative Care
  • Whats New?
  • Breakthrough pain
  • Opioid antagonists
  • Bisphosphonates
  • Ketamine
  • Psychostimulants

43
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44
New Dimensions in Highland
  • Technological tools
  • Information resource websites e.g. CAPCIS,
    PIES, CVH
  • Telemedicine (telehospice) - several small
    studies based on videophone communication (e.g.
    University of Missouri)
  • Web-based message boards, chat rooms - peer
    support for patients, carers and professionals
    with little research evidence of benefit
  • Assistive technologies - e.g smart homes in the
    West Lothian project. Physiological monitoring
  • Creative projects - e.g. Rosetta Life online
    composition

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47
New Dimensions in Highland
  • Challenges (Demiris et al. 2005)
  • Privacy and confidentiality Low levels of
    public confidence
  • Accessible design particularly for the elderly
  • User acceptance perceived impact on traditional
    services
  • Independence vs Dependence potential to create
    dependence on technologies rather than foster
    independence
  • Governance

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49
New Dimensions in Highland
  • A despairing man should have the devotion of his
    friends..
  • Now you too have proved to be of no help you see
    something dreadful and are afraid.
  • Job 614 21

50
New Dimensions in Highland
  • A physician ought not to abandon a patient
    because the case is deemed incurable for his
    attendance may continue to be highly useful to
    the patient, and comforting to the relatives
    around him, even in the last period of fatal
    malady, by alleviating pain and other symptoms,
    and by soothing mental anguish AMA Code of
    Ethics, 1847

51
New Dimensions in Highland
  • My Lord, it is a great art to die well, and to
    be learnt by men in health, by them that can
    discourse and consider, by those whose
    understanding and act of reason are not abated
    with fear or pains

52
New Dimensions in Highland
  • ..and as the greatest part of death is passed
    by the preceeding years of our life, so also in
    those years are the greatest preparations to it
    and he that prepares not for death before his
    last sickness, is like him that begins to study
    philosophy when he is going to dispute publicly
    in the faculty.
  • Jeremy Taylor (1613-67) Holy Dying

53

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55
New Dimensions in Highland
  • Patient / carer concerns (Weibull, 2008 , CCRC
    report)
  • - Information, including anticipatory care and
    crises rituals
  • - Professional back-up 24/7
  • - Mutual confidence and respectful dialogue
    between patient, carer and professional
  • - Continuity of professional carers
  • - Respite
  • - Social contact including Day Hospice

56
New Dimensions in Highland
  • Potential Stakeholders
  • Patients / carers
  • Highland Hospice staff and volunteers
  • NHS Highland and Palliative Care Network
  • Alchemy Plus Business Solutions
  • Highlands and Islands Enterprise
  • Stirling University
  • Dundee University
  • UHI Millenium Institute
  • Distance Lab

57
New Dimensions in Highland
  • Resource
  • Information (Patients, carers, health
    professionals)
  • Patient records
  • Advice chat line
  • Chat rooms
  • Live consultations
  • Remote patient monitoring
  • Virtual ward

58
New Dimensions in Highland
  • Sanctuary
  • Meditations
  • Music and relaxation aids
  • Diary / Scrapbook
  • psychotherapy
  • Creative arts
  • Virtual family links

59
New Dimensions in Highland
  • Inspiration
  • Online galleries
  • Chat rooms
  • Virtual voyaging
  • Virtual volunteering

60
New Dimensions in Highland
  • Learning
  • Formal courses in collaboration with institutes
    of further education
  • Informal events or regular sessions for patients,
    carers, volunteers or professionals
  • Personal CPD profiles
  • Trainer / Student forums

61
New Dimensions in Highland
  • Related projects
  • -PAS
  • -Promotion of telephone advice service
  • -Something Special Rosetta Life
    Collaboration
  • -Remote symptom monitoring
  • -Video consultations via Internet
  • -Skype messaging advice
  • -Educational sessions via internet
  • -Distance learning modules
  • -(CAPCIS)

62
New Dimensions in Highland
  • Next Steps
  • -Consultation public and professional
  • -Strengthen links with Canadian team
  • -Security issues
  • -Local vs National programme

63
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64
New Dimensions in Highland
  • Further Reading
  • Demiris G. The diffusion of virtual communities
    in Health Care Concepts and challenges. Patient
    Education and Counselling 2006, 62178-188
  • Demiris G, et al. Use of technology as a support
    mechanism for caregivers of hospice patients.
    Journal of Palliative Care 2005, 21(4) 303-309
  • Chochinov HM and Stern A. The Canadian Virtual
    Hospice. Journal of Palliative Care 2004, 20(1)
    5-6
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