1. Health Promotion at the End of Life: A symposium IUHPE Geneva 2010 Steve Conway, Andy Hy Ho, Bruce Rumbold

2. Values and principles of health promotion for end-of-life Steve Conway

3. Some thoughts relevant to health promotion at the end of life The philosophers have merely interpreted the world, the point is to change it. One death is a tragedy, a million is simply a statistic.

4. The shameful death Social change brought the professionalisation of death Also brought the decline of social support and collective responsibility General failure to make a good and well organised death possible

5. The shameful death Early deaths through poverty, inequality and lack of services Massive gap in lifespan between the rich and poor within and between countries

6. The shameful death professional power, poor quality services and lack of community involvement There is a climate of fear and secrecy [which] paradoxically shrouds practice in terminal care. Jessica Corner, Director of Nursing, Royal Marsden Cancer hospital Hansard 2007

7. Dirty dying: the gap between rhetoric and reality Julia Lawton, Research Fellow, University of Cambridge, book entitled The Dying Process: We cannot assume that the modern hospice movement has had the radical effects that its pioneers intended. … We can no longer afford to regard the movement's commitment as self-evident, non-controversial and in need of little explicit analysis and examination. On the contrary, there is an urgent need for a more rigorous analysis... A somewhat romanticised conception of dying patients resting comfortably in bed, mentally alert, calm and reassured is all too prevalent within [palliative care] literature.

8. The shameful death Resident may have been dead for six days, November 2009; Elderly tenant lay dead for days, September 2009; Woman, 85, lay dead in her flat for FIVE YEARS before anyone noticed, July 2009 Source: (Dead and Undiscovered http://deadandundiscovered.com/). William Hunter lain dead in his Ross-shire flat for around 14 months, Feb 2009 Helena Pugh lay dead in Bristol for an estimated 18 months Isabella Purves's body was found in her Edinburgh flat where it is believed she had lain for five years...other deaths of people undiscovered for between five weeks and two years - in Cardiff, Bury, Brighton, Lancashire and east London. Each case was revealed within the past 12 months. Few of those people made the national news. Source: Face the Facts: A Death Unnoticed, BBC Radio 4, 27 July, 2009.

9. The shameful death The idea that ones neighbour could be a stranger would have been unthinkable in traditional societies. Yet this is often the reality of modern social orders based upon individualism, consumption and service cultures. The freedoms of anonymity and the boundaries of a private self and life severely inhibit the creation and fostering of community

10. Discourse of individualism privatises death and brings a decline in the use of supporting institutions and communities –churches, neighbourhoods, friends, colleagues, etc However death is a great equalizer – a general equivalence. Also evidence that individual responsibility imperative being challenged and defied

11. Community

14. What is community?

15. The shameful death Lack of social and spiritual support Privileging of cancer care Disadvantaged dying Historical lack of community involvement Emphasis upon symptom control and individual psychological care Neglect of care issues away from the bedside

16. The reform model Consists of improving existing professional services Raising awareness amongst professionals and the public alike – social marketing

17. The reorientation model Health promotion approach geared towards social change draws upon synthesis of new public health and the core principles of palliative care, as set out by its pioneers Works at the levels of environment, community, education and policy About bearing witness and face-to-face contact Emphasis upon social and spiritual support Empowerment: services to be reoriented to the community

18. Values and principles of reorientation model Social justice and democracy A good death Overall focus of approaches to enhance and strengthen community engagement and support

19. Neighbourhood Network in Palliative Care, Kerala, India

20. St Christopher's Schools project

22. Bruce Rumbold Palliative Care Unit, School of Public Health, La Trobe University, Victoria Strengthening palliative care through health promotion

23. Health Promoting Palliative Care Kellehear, A. (1999) Health Promoting Palliative Care. Melbourne, Oxford University Press. Ottawa Charter 1.Enable, mediate, advocate in pursuit of healthy public policies and practices; 2.Create supportive environments; 3.Strengthen community action; 4.Develop personal skills; 5.Reorient health services. HPPC 1.Provide education and information for health, dying and death; 2.Provide social support, both personal & communal 3.Encourage interpersonal reorientation; 4.Encourage reorientation of palliative care services; 5.Create policies that do not separate dying from living

24. Consortium logo The questions were asking.. How can we develop and support flexible ideas of a good death and minimise the negative impact of death and dying? How can the wealth of knowledge that has been accumulated by palliative care programs become more available to the community? How can end-of life issues become more a part of life (than just the end)?

25. The tiered approach Fitch, M. (2000) Supportive care for cancer patients, Hospital Quarterly 3: 39-46 ALL PEOPLE MANY SOME FEW The step-up approach with increasing specialisation or intensity for more complex needs Respectful and dignity conserving care Good communication and information Screening for need. Link with self-help and peer support programs Access practical assistance Participate in psycho-educational groups Behavioural interventions eg relaxation. Specialist care for identified issues eg depression, anxiety, relationship problems and more complex physical or social issues. Intensive or comprehensive care for acute or complex and multi-factorial psychological and social problems.

26. Public Health & Palliative Care Public health approaches: – Health promoting palliative care – Compassionate communities Need health promoting palliative care services to facilitate and contribute to compassionate communities Need to locate end of life care outside the health services for genuine and sustainable community change to take place.

27. Community café conversations on death, dying, loss and care Café to Go Could holding a café in your community be a possibility?

28. Consortium logo Strengthening Palliative Care in Victoria through Health Promotion Examples of successful implementation that encourage community conversations Book and journal club discussions on publications like Tuesdays with Morrie or The Spare Room Café Conversations in local communities Movie nights that address death and dying with discussion afterwards such as The Bucket List or Tulip Consortium logoStrengthening Palliative Care in Victoria through Health Promotion

29. Do you belong to other groups in your community? Be brave and look for opportunities to use ideas such as these as a way to encourage people to talk about life and loss Multicultural club

30. Key components of project Coordination/leadership – A designated, appropriately-skilled person/group accountable to palliative care services and community Consultation – A resource group of interested people from various community sectors Support – Local expertise in health promotion, La Trobe University PCU Established strategies and resources

31. Terms of the partnership: The checklist Require at least one of 1-4, all of 5-7 1.Prevention 2.Harm-minimisation 3.Early interventions 4.Changing settings or environment 5.Participatory/partnership 6.Sustainable 7.Evaluated

32. What else could be done? Partners have organised: Plant a Tree and Remember Mum on Mothers Day event Plant a Tree and Remember Mum on Mothers Day event A Community Christmas Tree of Remembrance A Community Christmas Tree of Remembrance Community information sessions Community information sessions EG: Coping with Christmas Living with grief Living with Life threatening illness How to Care, What to Say …………the list goes on www.treesformum.com Invite community kitchen facilitators, physical fitness group leaders, school peer support leaders, youth group leaders….

33. What else could be done? Reflective place at the cemetery Reflective place at the cemetery Support program for carers Support program for carers Death education in schools Death education in schools Strategies include: Café conversations Visiting an elderly friend in aged care program Loss and grief art show Memory boxes

34. DECISION STRATEGIES: Evaluative Life reviews combined with ACP discussion Combining ACP discussion in an evaluative life review can assist people to consider their life in focus and identify key values, trusted decision makers and express future care wishes.

35. DECISION MAKING: GP letters Letters to GPs with the wishes expressed as part of the ELR/ACP process Volunteers organise for the person and their trusted decision maker to meet with a health professional or lawyer to complete a legal document.

36. Project findings to date LEADERSHIP ROLE for palliative care services in initiating end of life discussions in local communities NON- THREATENING approach that draws on peoples experiences and questions is effective in initiating end of life discussions DIVERSE rewarding community PARTNERSHIPS Requires a LONG TERM COMMITMENT; continuing attention rather than occasional promotions VOLUNTEERS are key AMBASSADORS in linking palliative care services with local community structures and needs.

37. Research & Evaluation Community capacity can be measured: but the link between interventions carried out and capacity produced are not simple. Network analysis to identify pathways by which interventions contribute to capacity. Comparative case studies to identify key enabler of and barriers to systemic change. Action research to lead decision making through the layers that link general awareness with specific formalised end of life plans, policy change, etc.

39. Liberating Dying Persons & Bereaved Families from the Oppression of Death and Loss in Chinese Societies Andy H.Y. HO, Andy H.Y. HO, B.A, M.Soc.Sc., M.F.T., C.T. Research Officer, Centre on Behavioral Health; Honorary Lecturer, Department of Social Work and Social Administration, HKU. Cecilia L.W. CHAN, Cecilia L.W. CHAN, B.Soc.Sc., M.Soc.Sc., Ph.D., R.S.W., J.P. Si Yuan Professor in Health and Social Work; Director, Centre on Behavioral Health; Professor, Department of Social Work and Social Administration, HKU.

40. Oppression of Death & Loss in Chinese Societies Death has become an imposing taboo leading to fear, anxiety and avoidance; whilst elaborative mourning rituals for honoring the dead consist of unspoken agendas that in reality further reinforce these taboos, producing tensions between social control and empowerment. Thou should not listen Thou should not talk Thou should not see

41. Oppression of Death & Loss in Chinese Societies Death Taboos – Not talking about death; no contact with the sick and dying and their family members; euphemisms of death are avoided. Death Pollution – Mortuary rites are unclean, unlucky, and contaminated by the spirit of the death; bereaved individuals are isolated and prevented from social contact. Unnatural Death – Immature deaths such as the death of children and young people are seen as punishment for ones own wrongdoings or the sins of ancestors. Death Rituals – Protect traditional moral values; safeguard family hierarchy and social status; demanding formalities and repression of emotions leaving behind unfinished business and causing family conflicts.

42. Study on the Perception of Death & Loss in Hong Kong A cross-sectional study on Transgenerational death attitudes with 792 Hong Kong Chinese residents was conducted in 2007 with the aim to better understand the current state of death perception and its relations to the oppression of death and loss across three generation groups: Young adults (aged 18-29; N=327) Middle-aged adults (aged 30-59; N=247) Older adults (aged 60 and above; N=191) Participants were either asked to complete a standardized questionnaire package by self-administration or through a face-to- face interviewing format. Measures include: Death Attitude Profile-Revised (DAP-R; Wong et al., 1994) Chinese Version of the Death Anxiety Scale (Templar, 1970; DAS) 8 items on Traditional Chinese Death Beliefs.

43. Perception of Death across Three Generations Findings reveals that both young and middle-age adults are significantly more afraid of death compared to older adults; they are also much more likely to avoid the topic of death and experience greater sense of death anxiety. Conversely, older adults are much more open in talking about death-related issues and feel less threaten by the idea of death. Older adults are more likely to accept death as a natural process of life compared to young and middle- aged adults. This intergenerational disparity inevitably impedes communication between adult children and elderly parents and prevents adequate preparation as one approaches death and sickness. * * ** * * * *

44. Perception of Death across Three Generations Chinese death taboos such as death brings bad luck, bereaved families should not be socially active and talking about death with a dying person will hasten death has been transmitted across generations and are still prominent in contemporary Hong Kong. These taboos limit communication and open exchanges on death- related issues between dying patients and their families, limiting social support for bereaved individuals, and ultimately lead to greater misunderstanding, disharmony and resentments. Traditional Death BeliefsDisagreeAgree Thinking or talking about death can bring bad luck89.0%11.0% Seeing a dead body or a coffin can bring misfortune82.4%17.6% A painful or early death is a result of past misdeeds83.5%16.5% Bereaved families should not be socially active61.7%38.3% Visiting the home of the deceased can bring misfortune83.8%16.2% Parents should never attend his or her childrens funeral78.7%21.3% Talking about death in the presence of a dying person would hasten death76.8%23.2% Dying without a son is losing face86.5%13.5%

45. Perception of Death across Three Generations Chinese death taboos are positively associated with higher levels Fear of Death, Death Avoidance and Death Anxiety, while negatively associated with Neutral Acceptance of Death. These taboos prevent the exploration of life meanings and life reviews on the part of the dying patients, both of which are critical for individuals to achieve ego integrity, the last developmental task at end-of-life. Fear of Death Death Avoidance Death Anxiety Neutral Acceptance Young Adults T. Chinese Death Beliefs 0.29***0.23***0.12*-0.28*** Middle-aged Adults T. Chinese Death Beliefs 0.31***0.27***0.24***-0.24*** Elderly Adults T. Chinese Death Beliefs 0.30***0.25***0.20***-0.25*** *p<.05, **p<.01, ***p<.001

46. Effects on Dying persons & Bereaved families Chinese people often feel powerless and demoralized in the face of mortality and loss: Families prefer non-disclosure to elderly patients with terminal illness (Fielding & Hung, 1996) Dying persons and their families relies heavily on health authorities for making choices in the end-of-life (Chan & Pang, 2007) Bereaved families when planning for burial and rituals often falls victims to spiritual expert with a hidden profit agenda (Cheung, et al., 2006). Health care and Allied health care professionals finds themselves ill-equipped to support and assist those facing death and loss: Palliative care trainings are heavily medically-oriented Lack of formal death education for frontline workers Inadequate to carry out psycho-social-spiritual care

47. Palliative Care Development in Hong Kong Through 30 years of rapid development, palliative care has become an integral part of the Hong Kong public health care system: Hospital Authority is providing comprehensive palliative care to terminally-ill patients through an integrated multi-specialties multidisciplinary service approach that aims at rendering holistic care to patients and families. 10 palliative care centers and 6 oncology centre under HA to provide palliative care, which includes in-patient service, out-patient service, hospice palliative day care services, home care service and bereavement counseling. Hong Kong was ranked the top 35 places with the most developed palliative care system among the 234 places assessed (Clark & Wright, 2007).

48. However, service delivery is largely dedicated to patients with incurable cancer and provided through specialist palliative teams: Service outside the mainstream healthcare system is fairly limited, and community support is scarce. Individuals with other incurable illnesses and older persons with multiple chronic illnesses have little or no access to palliative care. These is great reluctance amongst cancer patients themselves in seeking formal palliative services (Chan, Siu, & Leong, 2003): Only 60% of all patients with incurable cancer actually received palliative services Over 99% of all hospital deaths occurred in acute hospital beds with less than 1% occurring in palliative beds These statistics reflect the apprehension and misconception brought about by the social stigma of death and dying Palliative Care Development in Hong Kong

49. Liberating the Dying and the Bereaved from the Oppression of Death and Loss in Hong Kong The widespread negativity surrounding death + The prominence of traditional Chinese death taboos + The gaps in palliative care provision + The paucity of community support = The need for a community empowerment programme to liberate dying people and bereaved famines from the oppression of death and loss in Hong Kong.

50. Public Health Strategy Health promoting palliative care translates the hospices ideals of whole person care into broader public health language and practices related to prevention, harm reduction, support, education and community action (Kellehear & OConner, 2008): To facilitate interdisciplinary partnership to expand service beyond the limits of medicine and institutional individualized care To incorporate palliative care ideals into the contexts of community care, family services and all relevant human service sectors To advocate social and policy changes using both a bottom-up approach from the community level and a top-down approach from the public policy level to consistently interact, inform and educate policy makers, healthcare and human services workers and the general public about concepts on death, dying, hospice and palliative care.

51. The ENABLE Project The Empowerment Network for Adjustment to Bereavement and Loss in the End-of-Life: 1.Promote public awareness on death, dying and bereavement 2.Facilitate older adults as well as individuals with terminal illnesses and their family members to better prepare for death, dying and bereavement; 3.To develop and enhance the overall professional competence in palliative, end-of-life and bereavement care; 4.To established a community networking model to push forth a social movement for integrating end of life care into all levels of societies.

52. Evidence-based Death Education and Community Organizing becomes the main impetus of the ENABLE project for: Enhancing autonomy and active participations amongst individuals and groups in facing mortality Create a communal platform for people to assess and reflect on their own perceived needs at the end-of-life and develop strategies to address them Fostering greater community involvement in the governance of death and loss in Hong Kong. The ENABLE Project

53. A Model for Death Education The ENABLE 8A Model of Death Education (Chan et al., 2010)

54. Formation of the ENABLE Alliance To create a sense of ownership within the community that embraces existing social support networks and health care system to ensure the projects sustainability. A community networking model was established to integrate death education into all level of society. Emphasizing bilateral strategies and involvements: 1)One-day workshop on death education for over 40 Directors & Chief of Staff of leading hospital groups, elderly care & family service units, social service agencies and NGOs, to encourage dialogue and cross-agency partnership (Top-Down) 2)Multiple one-day workshop for over 200 frontline health care and human service workers, represented by the Directors and CoS in the previous events, to facilitate intellectual exchanges and commitment (Bottom-Up) Community Organizing

55. Workshop for Agency Directors and CoS Sharing Session ENABLE Alliance Workshop for Frontline Workers

56. The ENABLE Alliance With over 40 members, the ENABLE alliance is to build and strengthen the connection and cooperation between organizations, and to facilitate better strategic development between the profession and academia. Each allied organization will pass on the knowledge of bereavement, life, and death in the community to increase public awareness, and to empower and support the dying and the bereaved when they are preparing for death and loss. Notable members include: Social Service Division of the HKSAR Government The Hong Kong Society for Rehabilitation Tong Wah Group of Hospital & Caritas Medical Centre The Salvation Army of Hong Kong and Macau YMCA & YWCA of Hong Kong Li Ka Shing Foundation Hospice Service Program

57. The Primary ENABLING Programme Death Education to increase awareness and facilitate death preparation among the general public through a Train-the-trainer approach Basic training were provided for 2,000 frontline workers whom delivered death education workshop to more than 74,000 members of the general public All PEP trainees received continuous support upon graduation: Standard teaching protocol and booklets Updates on related services and developments, Research findings in death and dying Further training and consultation Online audio-visual resources Use of Death Education Library

58. Death Education Workshop Sightseeing at Funeral Parlors Active Participation Life Review Workgroup

59. The Secondary ENABLING Programme Specialized and Comprehensive Training to Enhance Professional Competence in the field of palliative, end-of- life and bereavement care Specialized training were provided for over 300 healthcare and human service workers in relevant fields, which aimed at increasing 3 levels of professional competences including: Emotional + Knowledge + Practical competence The SEP provided a platform for greater intellectual exchanges between professionals while strengthening inter-sector participation. The SEP also sparked off a series of collaborative empirical research on death and dying including: Dignity at the End-of-Life (with CMC & Dr H. Chochinov) Psycho-social-spiritual needs of dying patients (with LKS Foundation & Dr. R. Neimeyer)

60. ENABLE Website, Publications & Publicities The ENABLE Website (www.enable.hk) The First Ever Online Interactive Platform on Life Planning & Bereavement Support Received the 2010 Best Communicator Award from the International Academy of Visual Arts Publication of multiple self-help books including, In Celebration of Life: A Self-help journey on preparing a good death and living with loss and bereavement were widely disturbed in the community ENABLE Symposiums on death and dying, press conferences, mass media programming including radio, newspaper and TV as well as other publicity campaigns were also carried out to raise public awareness

61. ENABLE Symposium 2007 - Death and Bereavement ENABLE Symposium 2010 – Living a Legacy ENABLE Press Conference ENABLE Symposium 2008 - Community Partnership

62. Evaluation of the ENABLE Project Efficacy evaluation of the PEP and SEP shows that ENABLE death education and professional training models are successful in: Reducing participants fear of death and death avoidance Enhancing their death-related knowledge and competence Facilitating more open communication on death-related issues Elevating trainees perceived level of self-efficacy in conducting life and death education workshops with the general public Qualitative assessment based on written comments and dialogue exchanges between ENABLE trainees shows that: The programme material and all related books, manuals and publications are informative and intellectually stimulating The training contents are rich and vigorously address the general publics needs and concerns related to death and dying Experiential activities and multimedia teaching materials are innovative with great practicability to facilitate interactive learning

63. The ENABLE Alliance has received the unwavering support from 46 leading hospitals, community service agencies and NGOs: They have worked collaboratively and in harmony to promote death education in Hong Kong Some have begin to develop and implement their own collaborative programmes in death education Smaller social service agencies that are not part of the ENABLE Alliance have also developed their own unique end- of-life care planning activities to serve specific target groups (i.e. field trips to cemeteries and crematories for elders) New community self-help and volunteer groups have been established to provide various kinds of death preparation services to the public (i.e. family portrait for elders and patients with terminal illness) Evaluation of the ENABLE Project

64. Cultural Changes brought by ENABLE The ENABLE team again conducted a Transgenerational death attitude study with 683 Hong Kong Chinese residents in 2010, using the same assessment tools of those from the 2007 study. Data collected from of 192 young adults, 359 middle aged adults and 132 elderly adults (N=683), were compared to those collected in 2007 (N=792). This prospective cohort study reveals very encouraging results that show positive attitude, behavioral and social changes on death and dying amongst the general public of Hong Kong.

65. Results of 3-year Prospective Cohort Study Death avoidance amongst young and middle-aged adults showed a significant dropped between 2007 and 2010. All 2010 respondents, regardless of age, showed a significant reduction in their anxiety level towards death when compared to the 2007 respondents.

66. Results of 3-year Prospective Cohort Study Fear of death amongst young and middle-aged adults showed a significant dropped within a three year timeframe. Neutral Acceptance of death amongst middle-aged and elderly adults have significantly increased between 2007 and 2010.

67. Also, study found that more middle-aged and older adults had engaged in death preparation such as purchasing life insurance, setting up a will, making plans for burial arrangement and organ donation. In general, the people of Hong Kong has endorsed a more positive outlook when dealing with death related issues, while death has become less of a cultural taboo in Hong Kong. 20072010 Traditional Death BeliefsDisagree Thinking or talking about death can bring bad luck89.0%92.0% Seeing a dead body or a coffin can bring misfortune82.4% 88.4% A painful or early death is a result of past misdeeds83.5% 78.2% Bereaved families should not be socially active61.7% 68.4% Visiting the home of the deceased can bring misfortune83.8% 89.0% Parents should never attend his or her childrens funeral78.7% 80.6% Talking about death in the presence of a dying person would hasten death76.8% 82.1% Dying without a son is losing face86.5% 93.0% Results of 3-year Prospective Cohort Study

68. The Way Forward To eradicate a long-standing death avoiding death fearing culture and to push forth the concept of health promoting palliative care in Chinese Societies relies not on a uni-dimensional strategy, but a comprehensive community empowerment programme guided by a public health agenda that emphasise prevention, harm-reduction and early intervention. Such agenda also needs to recognise that public education, professional training, interdisciplinary partnership, community ownership, research and policy advocacy, are all essential elements in determining programme success and sustainability. The ENABLE project offers a viable and practical framework to integrate the ideals of health promoting palliative care into a broad spectrum of society.

69. The Way Forward Our experience illuminate the vital significance of applying a public health approach in such undertaking; one that encompass : 1.Empirical research in amplifying the voices and identifying the needs of dying people and bereaved families 2.Development of evidence-based public death education and specialist training that enhance personal autonomy and professional competency in the face of mortality, 3.A social networking regime to facilitate community involvement, empowerment and participation in the governance of death and dying.

71. Thank you. For more information, please contact: andyho@hku.hk Or visit: www.enable.hk ACKNOWLEDGEMENTS This volume of work was supported by funding from: The Hong Kong Jockey Club Charities Trust; The Hong Kong Jockey Club Charities Trust; The Si Yuen Professorship in Social Work and Social Administration; The Si Yuen Professorship in Social Work and Social Administration; The General Research Fund, Research Grant Council, Hong Kong SAR Government (GRF Ref no. 740909).

72. Plenary discussion Were interested in whatever you want to discuss, but in particular: Your knowledge of any health promotion or community development projects in end of life in your country Your advice about further strategies to employ Your advice about evaluation and research methodologies

74. Dr Suresh Kumar, Institute of Palliative Medicine, India

75. Pubhealth Pallcare 2009 Looks after more than 8000 patients at any point of time- all the services are free More than 7000 community volunteers offer their services with out any remuneration All the expenses for delivery of care (including salaries, cost of medicines, food for the family, educational support for the children) raised locally

76. Pubhealth Pallcare 2009 Empowerment of the local community to look after the bed- ridden patients in their area To develop a cost- effective method for the provision of palliative care

77. Pubhealth Pallcare 2009 Community volunteers do Regular, continuous emotional support for the patients and family Data collection/ needs assessment Social support to the patients Wound care, bedsore prevention, mobility Organisation & administration of palliative care services including fund raising

78. Pubhealth Pallcare 2009 Anyone who wants to contribute in the efforts to reduce the suffering of people living with advanced diseases Structured training given to those who are willing to spend at least two hours per week for the work

79. Pubhealth Pallcare 2009 Training as part of generation and dissemination of knowledge 16 hours of theory 4 days of practical work

80. Pubhealth Pallcare 2009 Network of trained volunteers in the community Support system by trained professionals, institutions and organisations Palliative care institutions as nodal centers

81. Pubhealth Pallcare 2009 >90% of the total money raised locally 30% from the local government The rest from the community >75% of this as donations of less than 25 cents

82. Pubhealth Pallcare 2009 Specialists have a definite but small role Primary care physician in the periphery to be involved Massive involvement from the local community

83. Pubhealth Pallcare 2009 The volunteers identify people in need of care in their area (panchayath). They identify the needs and plan the services that can be offered Seek the help of health care professionals for addressing medical and nursing issues Existing NNPC groups gives the support for initiation of these services As the service grows the local support increases and other NNPC groups gradually withdraws from the facilitator role

84. Pubhealth Pallcare 2009 Can reach inaccessible populations through informal community networks Ability to tailor the intervention to the needs and resources of the community Can maximize social pressure and encourage structural changes such as policy and service reorientation Use local resources, knowledge, expertise Create conditions in which people can become empowered Can be a cost effective strategy for community outreach

85. First government in Asia to have a palliative care policy Drafted in consultation with existing palliative care groups Emphasises community based home care Gives guidelines for the development of services with community participation Aims to integrate the existing services with the main stream health care and Local Self Government Institutions Pubhealth Pallcare 2009

86. Building Awareness General public Health care professionals LSGI members Capacity building Health care professionals General community Demonstration projects linked to Local Self Government Institutions Establishing Training centers Establishing a Resource and Co ordination center Pubhealth Pallcare 2009

87. Population 13.5 m people Less than 20 trained professionals PC is not part of the health care education PC services density : 0,02 x 100.000 No national PC plan National Association created in October 2008 No PC networking Multiple barriers in access to opioid analgesics 87 Patricia Granja Hernández MD-MPH - patricia.granja@paliativosecuador.org

88. A gap : the needs of the population – the services offered - perception of professionals. The academic training model deepens the gap Domiciliary care is an urgent demand Inequality is high. 88 Patricia Granja Hernández MD-MPH - patricia.granja@paliativosecuador.org

89. Palliative care is not pre death attention, but a strategy for diminishing peoples suffering. 89 Patricia Granja Hernández MD-MPH - patricia.granja@paliativosecuador.org

90. Thinking of palliative care as a social need Develop a social support model that aim to diminish collective suffering and dependency Transforming our medical training system from the technology paradigm to the person focus paradigm 90 Patricia Granja Hernández MD-MPH - patricia.granja@paliativosecuador.org

91. Hurdles to negotiate Health services or public health approaches? Palliative care, or end of life? Integration or absorption of palliative care? Working the boundaries: – Opportunity or risk; health services or community control Evidence based policy: – Genuine choice; right options for the right people; preserve social identity and contribution