The Changing Face of Hospice. An International Perspective. David Praill

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2 The Changing Face of Hospice An International Perspective David Praill

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5 Global overview Trends that will impact UK and Kerala, India Community Participation ehospice sharing our stories

6 Global overview Trends that will impact UK and Kerala, India Community Participation ehospice sharing our stories

7 The increasing burden of chronic noncommunicable diseases: Source: Lopez AD, Mathers CD, Ezzati M, Jamison DT, Murray CJL, eds. Global Burden of Disease and Risk Factors. Washington, DC: The World Bank Group,

8 The Future of Death Guy Brown University of Cambridge 8

9 PAST DIGITAL ACUTE EVENT FUTURE ANALOGUE CHRONIC PROCESS Guy Brown, The Future of Death

10 Acute Death Chronic disease Heart attack Heart failure Stroke Vascular dementia Diabetic death Diabetic life HIV death HIV life Guy Brown: The Future of Death University of Cambridge

11 Function High Function High Low Months or years Death Low Death Weeks, months, years Organ failure GP has 20 deaths per list of 2000 patients per year Acute Cancer Dementia, frailty Function High Low Many years Death and decline Murray SA, Kendall M, Boyd K, Sheikh A. Illness trajectories and palliative care. BMJ. 2005; 330:

12 BANGLADESH January 2011 President Zillur Rahman has called upon the authorities concerned to expand palliative care services across the country. BDNEWS24.COM

13 "I strongly feel it necessary that palliative care centres should be set up at every medical college and district hospital to offer comfort to all terminally ill patients," he said "It will help poor people who cannot afford costly treatment and provide strength to those who break down when they come to know that the disease is incurable. BDNEWS24.COM

14 "It's indeed praiseworthy that you (palliative caregivers) bring comfort to them in such distressed moment." Citing statistics, he said over half a million people could benefit from the palliative care services. "The number will increase day by day with rising number of ageing population who suffer from various incurable illnesses." BDNEWS24.COM

15 Treatments Realities for Cancer: Western Countries Treatment Realities for Cancer: African Countries CURE THERAPY PC CURE THERAPY PC Treatment Realities for HIV/AIDS: Western Countries Treatment Realities for HIV/AIDS: African Countries CURE ARVs PC CURE ARVs PC Dr Lydia Mpanga Sebuyira

16 There are numerous barriers to the provision of hospice and palliative care: lack of funding lack of trained health professionals neglect of hospice and palliative care in policy at the global and national level poor access to medications, particularly opioids.

17 The Public Health Model of Palliative Care Development Stjernsward J, Gómez Batiste X. (2008 )

18 Pain is a more terrible lord of mankind than even death itself Albert Schweitzer ( )

19 Pain 80% of world population has no or inadequate Access to opioids Australia, Canada, New Zealand, the United States, and several European countries accounted for more than 90% of the global consumption of opioid analgesics (INCB, 2010).

20 Worldwide Opioid use in mg per capita (minus methadone use) (Both Sexes: 2008) Opioid use (minus methadone) mg. /capita < 1 1 to 5 5 to to 100 >100 Not applicable Data not available The boundaries and names shown and the designations used on this map do not imply the expression of any opinion whatsoever on the part of the WPCA concerning the legal status of any country, territory, city or area or of its authorities, or concerning the delimitation of its frontiers or boundaries. Dotted lines on maps represent approximate border lines for which there may not yet be full agreement. WPCA All rights reserved.

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22 WPCA World Hospice & Palliative Care Day

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24 "I realize that there are hundreds of people in pain and misery with incurable illness around me. I pledge to do everything in my capacity to support them. We are all with them"

25 Global overview Trends that will impact UK and Kerala, India Community Participation ehospice sharing our stories

26 What does the future look like? Dr Heather Richardson

27 There is a clear consensus that the future now emerging will be extremely different from anything we have ever known in the past. It is a difference not of degree but of kind. There is no prior period of change that remotely resembles what humanity is about to experience.nor have we ever experienced so many revolutionary changes unfolding simultaneously and converging with one another. Al Gore: The Future six drivers of global change ; Publ Random House, p.xv

28 (Alvin Toffler) agreed that no other period in human history could match the present one in the sheer scale, speed, and global complexity of the changes and challenges that we face. Ken Robinson & Lou Aronica, The Element: How Finding Your Passion Changes Everything. p19

29 Trends that will impact Technology Aging

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31 Jan Stjernsward

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33 Tim Harford

34 Tim Harford

35 Tim Harford The Undercover Enonomist Bournemouth 2011

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37 Building an open access Encyclopedia

38 Building an open access Encyclopedia Driverless Cars

39 Building an open access Encyclopedia Driverless Cars Dr. Watson I presume

40 Dr. Watson IBM style Only 20% of knowledge physicians use to make diagnosis and treatment decisions today is evidence based. 1 in 5 diagnoses are incorrect or incomplete 1.5 million medication errors in the USA every year The amount of medical information available is doubling every 5 years 81% physicians report that they spend <5 hours/month reading journals

41 Dr. Watson IBM style Watson = a cognitive system that is not simply programmed but is trained to learn, based on interactions and outcomes 16/02/2011 Watson won a challenge against two human champions of USA TV quiz show Jeopardy March 2012 Sloane-Kettering Cancer Center is teaching Watson about oncology diagnosis and treatment options

42 Dr. Watson IBM style Get ready to rethink how you use data, build knowledge, and make decisions. 90% of the worlds data has been created in the past 2 years and 80% of that data is unstructured Watson can read 65 million pages of text a minute and retain it for future use how fast are you? How good is your memory?

43 I want that which is in your heart and in your mind

44 I want that which is in your heart and in your mind.so long as your mind has been checked with Dr. Watson

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46 technology shaped by observation and experience and developed around human needs, can have a major impact on people s lives. It can also contribute substantially to reinforcing behaviors that lead to a healthier lifestyle and assisting in the long-term care of chronic conditions. Intel-GE Care Innovations TM Guide

47 Population ageing is unprecedented, a process without parallel in the history of humanity World Population Aging 2009; UN 47

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51 Our Aging World We are aging not just as individuals or communities but as a world. In 2000, over 600 million people worldwide were 60 and older triple the number in By 2009, that total had surpassed 700 million. By 2050, 2 billion older persons are projected to be alive meaning that there number will have trippled again in 50 years 51

52 Our Aging World The speed of our aging is significantly faster in less developed countries The Oldest Old are the fastest growing population growth of 1.2%; over 60 is 2.6% and over 80 is 4% Changing population profiles Increasing life expectancies More women! 66 million more over

53 Young Children and Older People as a Percentage of Global population Since the beginning of recorded human history, young children have outnumbered older people. Very soon this will change. For the first time in history, people age 65 and over will outnumber children under age 5. This trend is emerging around the globe. 53

54 Young children and older people as percentage of Global Population Source: United Nations Department of Economic and Social Affairs, Population Division. World Population Prospects. The 2004 Revision. New York: United Nations,

55 How is society going to support this silver tsunami? There ll be a population of demented very old people,.,stinking out the restaurants and cafes and shops. I can imagine a sort of civil war between the old and the young in 10 or 15 years time. Martin Amis Sunday Times Magazine,

56 From Prof Jane Seymour presentation: How do we protect the needs of the frail older person in palliative care

57 Professor Jane Seymour, Nottingham University

58 The Future of Death? Death is diverse. Death is slowing down. Death is increasingly old. Death is merging into ageing. Death used to be acute - now it is chronic. 25% die with dementia. May increase to 50%. Death is increasingly accompanied by multiple morbidities, disabilities and dysfunctions. Guy Brown 58

59 The Future of Death Challenges for Hospices When is the end-of-life? If it extends over 1-10 years, what is the role of hospices? Will the very old benefit from hospices? How will hospices cope with multiple morbidities? Will demented/ci people benefit from hospices? How will hospices cope with the cognitively impaired? How will hospices cope with people who want to die more quickly? (Guy Brown) 59

60 Global overview Trends that will impact UK and Kerala, India Community Participation ehospice sharing our stories

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62 Be innovative Prepare for new groups of users Plan to care for them much earlier in their trajectories Think about caring for them in alternative settings and in new ways Shift the focus of your care to a different set of needs Change your workforce Sell hospice as a solution

63 What does the future look like?

64 Investment in volunteers

65 Consider new partnerships

66 This is not a time for complacency, no matter how valued and valuable hospices are in their communities. The challenges are severe, the needs for leadership and innovation have never been greater, and the dangers of resting on one s laurels, of not learning from each other and of not adapting to rapidly changing circumstances threaten both hospices and those they serve. It is a time for self-assessment, clear thinking and strategic planning and action if hospices care is to continue to improve the experience of those approaching the end of life. (Commission into the future of hospice care Sept 2012)

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68 This new model advocates the hospice as a dynamic community hub combining social experiences and activities which, together, support the delivery of high quality, cost effective, and evaluated care and service innovation

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73 73 APM Calicut 04/0 4/20 13

74 Palliative Care in the Community 74 International Workshop Cochin 2013 Dr Suresh Kumar 04/0 4/20 13

75 Meaningful Palliative Care 75 Meaningful palliative care requires a combination of socio-economic, cultural, and medical solutions. All three must be addressed. Not purely a medical issue, the cultural and socioeconomic factors determine what kind of death we face. Today s overemphasis on medical approaches can be balanced only by the people taking ownership Dr Jan Stjernsward (Dr Suresh Kumar, Kerala 2013) 04/0 4/20 13

76 Role of community Many of the problems in advanced diseases are of a non medical nature; the community has a major role to play in addressing these Problems (Dr Suresh Kumar, Cochin 2013) Spiritual Physical Financial Loss of role Social Psychological 76

77 NNPC - Objectives Empowerment of the local community to look after the bed-ridden patients in their area To develop a costeffective method for the provision of palliative care in LMI setting International Workshop Cochin 2013 Dr Suresh Kumar 77

78 NNPC -Structure Network of trained volunteers in the community Support system by trained professionals, institutions and organisations Palliative care institutions as nodal centers International Workshop Cochin 2013 Dr Suresh Kumar 78

79 79 Community Programs in Palliative Care- Rationale Patients with advanced diseases require continuous care and attention for the rest of their lives They are also in need of regular social, psychological and spiritual support in addition to the medical and nursing care Care should be readily accessible and available as close to home as possible There is enough social capital available to build a safety net' in the community around these patients International Workshop Cochin 2013 Dr Suresh Kumar 04/0 4/20 13

80 80 Volunteers Anyone who wants to contribute in the efforts to reduce the suffering of people living with advanced diseases Structured training given and trained volunteers encouraged to spend at least two hours per week helping incurably ill, bed ridden and dying people in the neighborhood. International Workshop Cochin 2013 Dr Suresh Kumar 04/0 4/20 13

81 Volunteers play the major role in total care 81 Regular continuous emotional support for the patients and family Social support to the patients Wound care, bedsore prevention, mobility Spread the idea of palliative care in the society Fight social stigmas to cancer, AIDS etc. Organization & administration of palliative care services International Workshop Cochin 2013 Dr Suresh Kumar 04/0 4/20 13

82 NNPC: Community Participation in Palliative Care Capacity building in the community Education and training Professional staff Community leaders Community volunteers International Workshop Cochin 2013 Dr Suresh Kumar 82

83 83 Characteristics of Neighbourhood Network in Palliative Care A collective rather than individual approach to health Going beyond the bio medical model: social rather than medical model of health and diseases Participation of community members in health care decisions International Workshop Cochin 2013 Dr Suresh Kumar 04/0 4/20 13

84 84 Community action: Impact on the community Sense of togetherness Improves social relationships Acquiring more knowledge, skills and confidence Creates self reliance: Tendency for dependence on external experts less in future Empowerment Enhanced social capital International Workshop Cochin Suresh 04/0 4/20 13

85 85 Community action: Advantages for the project Can reach inaccessible populations through informal community networks Ability to tailor the intervention to the needs and resources of the community Use local resources, knowledge, expertise Create conditions in which people can become empowered Can be a cost effective strategy for community outreach Can maximize social pressure and encourage structural changes such as policy and service reorientation International Workshop Cochin 2013 Dr Suresh Kumar 04/0 4/20 13

86 86 Timeline of Development of Palliative Care Services in Kerala Confined to a small community Start of Community Involvement Involvement of Local Self Government Institutions NGO at Medical College Calicut 30 projects started by Neighbourhood network in Northern Kerala 04/0 4/20 13

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88 Lessons from Kerala: Dying is a social issue that requires a medical input not a medical issue that requires a social input Communities are capable of much more than we give them credit for Volunteers can be under 50 and they can carry real ownership and responsibility Community based leadership is essential from lead clinicians as well as activists It is a journey worth taking but we have to dare to take our own journey and not try to copy someone elses

89 Hospices and Community Engagement: theory, practice and emerging models Sally Paul Social Worker/Researcher, Strathcarron Hospice, Stirlingshire PhD student, University of Edinburgh Dr Libby Sallnow Research Fellow, St Joseph s Hospice, London PhD student, University of Edinburgh Volunteering Advisor, Help the Hospices libbysallnow@gmail.com

90 Numerous terms and meanings Community engagement, development, participation, involvement Public health approaches New public health approaches Health promotion Compassionate communities

91 Development of the terms A reflection of wider social changes in 20th century Top-down policies not working New perspectives on development Recognition that bio-medicine did not have all the answers Principles moved into health with support of the World Health Organisation

92 Are social approaches to death and dying a priority for your service currently? Percent of services identifying if social approaches to death and dying are a priority (n 146)

93 Range of projects undertaken (n 146)

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95 Core Service Provide multi-disciplinary support for patients and their families referred for direct service provision. Includes: raising awareness of service; education on end of life care and promoting philosophy of hospice care. Inform The hospice provides the community with balanced and objective information on end of life care issues such as: hospice care, serious illness, advance care planning and bereavement. Empower Collaborate Involve Consult Inform Core Service Empower Final decision making about end of life care is placed with the community. The hospice transfers professional knowledge and enables community members to make their own decisions about service needs. Collaborate The hospice works in partnership with the community to make decisions about end of life care. This includes developing alternative approaches and identifying preferred solutions. Consult The hospice encourages community feedback about its practice. This includes concerns, aspirations, evaluation and analysis. This information informs service delivery. Involve The hospice works with the community to encourage feedback and ensure it is being understood and reflected in service delivery. Community assesses effectiveness of service delivery.

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102 Global overview Trends that will impact UK and Kerala, India Community Participation ehospice sharing our stories

103 Palliative care news, views and inspiration from around the world 103

104 Editions Africa African Palliative Care Association Australia Palliative Care Australia Canada Canadian Hospice Palliative Care Association India Indian Palliative Care Association International Worldwide Palliative Care Alliance International children s International Children s Palliative Care Network Kenya Kenya Hospices and Palliative Care Association Latin America (coming soon) South Africa Hospice Palliative Care Association of South Africa US National Hospice and Palliative Care Organization (coming soon) UK Help the Hospices 104

105 What you will find on ehospice Latest palliative care news, commentary and analysis Intelligence and examples of good practice/innovation Feature articles and thought pieces Details of: current research findings developments in clinical practice funding, scholarship and research opportunities policy developments Coverage of major meetings and conferences Updates from organisations within the palliative care field 105

106 What you will find on ehospice Inspirational stories ( Be inspired button) Photo/image galleries and videos Jobs and events listings Directory of hospice and palliative care worldwide via interactive globe In short, access to the expertise and experience of the global hospice and palliative care community 106

107 How can ehospice benefit you? One place where you can access all the latest hospice, palliative and end of life care news Great opportunity to circulate your own news and information to a local, national and even global audience Share expertise and knowledge with colleagues throughout your country and around the world Advertise jobs and events Highlight the exceptional work you do to funders and commissioners Raise your profile nationally and internationally 107

108 ehospice is a huge benefit to the many hospices around the world and to all the citizens of the planet who are interested in hospice and palliative care. Don Schumacher, Chief Executive, National Hospice and Palliative Care Organization, USA 108

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116 How to access ehospice Online: itunes: ipad app available now Coming soon: iphone app and mobile website launching in February 116

117 Summary: 1. There is still a very long way to go global coverage and access to pain control 2. The world is changing faster than ever and in non-linear and complex interacting ways. 3. Shift from Strategic Planning to Scenario Planning 4. We have to find models for supporting frail elderly 5. Community engagement models to be encouraged 6. We have much to learn from each other ehospice will help!

118 ehospice be inspired 26/3/13

119 Thank You