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For Michael Sallnow
(1949–1990)
Contents

List of illustrations ix
List of contributors x
Preface xii
Acknowledgements xiv

1 Public health and palliative care: an historical overview 1

A llan K ellehear and L ibby S allnow

2 “But we’re already doing it!”: examining conceptual blurring

between health promotion and palliative care 13
J ohn R osenberg

3 Illness trajectories and palliative care: implications for

holistic service provision for all in the last year of life 30
S cott A . M urray and P eter M c L oughlin

4 Public health approaches to palliative care in Australia 52

B ruce R umbold

5 Public health and palliative care: a perspective from Africa 69

J ulia D owning , L i z G wyther and
F aith M wangi-­P owell

6 Public health developments in palliative care services in the

UK 85
S teve C onway

7 Public health approaches to palliative care: the

Neighbourhood Network in Kerala 98
S uresh K umar
viii   Contents
8 A public health approach to palliative care in East London:
early developments, challenges and plans for the future 110
H eather R ichardson

9 The campaign to build a dementia-­friendly community 123

T he 1 0 0 - M ember C ommittee , J apan

10 Discovering options: an Australian initiative in the care of

the dying 139
H elen-­A nne M anion , G erard M anion and
K athleen D ansie

11 ‘Let’s talk about dying’: changing attitudes towards hospices

and the end of life 156
N igel H artley

12 Public health approaches to end of life in Ecuador: avoiding

suffering at the end of life – a health service issue? 172
P atricia G ranja H .

Appendix 1: Palliative care policy for Kerala 182

T he G overnment of K erala

Appendix 2: Charter for the normalisation of death, dying

and loss 192
I nternational W ork G roup on death , dying and
bereavement

Appendix 3: Practice guidelines for palliative care 197

A llan K ellehear , G ail B ateman and B ruce R umbold

Appendix 4: An action plan for the initiation of a palliative

care in the service in the community 201
the neighbourhood network in palliative care ,
K erala

Appendix 5: Model of Palliative Care, Lothian, Scotland  202

N H S L othian

Appendix 6: Survey questionnaire for HOME Hospice for

Chapter 10 203
H ome H ospice

Index 205
Illustrations

Figures
2.1 Integration of health pro­mo­tion com­pon­ents 22
3.1 The three main trajectories of decline at the end of life 31
3.2 When is the palli­at­ive care approach indicated? 37
3.3 Lung cancer: phys­ical, social, psychological and spiritual
trajectories 39
3.4 Heart failure: phys­ical, social, psychological and spiritual
trajectories 41
3.5 Trajectories of phys­ical, social, and psychological and
spiritual wellbeing in family carers of patients with lung
cancer, from dia­gnosis to death 46
3.6 Four cat­egor­ies of end of life de­velopments 48
4.1 Conceptual model of level of need within the popu­la­tion of
patients with a life limiting ill­ness 57
7.1 Palliative care in Kerala – the emerging model 106
10.1 HOME Hospice relationship model 140
10.2 Relationship of carers to patients 148
10.3 Age of carers 149
12.1 Health cover­age in Ecuador 174

Tables
2.1 Translating the Ottawa Charter to palli­at­ive care 24
4.1 Community de­velopment models used in health care 60
5.1 Cause of death, percentage of total deaths, 2002 70
5.2 Typology of hospice palli­at­ive care ser­vice de­velopment in
Africa 72
6.1 Frequency and percentage of deaths by place of occurrence in
England and Wales, 1999–2003 89
12.1 Estimate of people requiring palli­at­ive care in Ecuador, 2008 177
Contributors

100 Member Committee is a committee of approximately 100 organ­iza­tions

and indi­viduals, with Tsutomu Hotta, CEO of Sawayaka Welfare Founda­
tion, serving as its chairman, Japan.
Dr Steve Conway is Senior Lecturer – Research Methods, School of Health
and Social Care, Teesside University, Middlesbrough, UK.
Kathleen Dansie is Project Manager for South African HOME Hospice Project;
Teacher Librarian, Australia.
Dr Julia Downing is Honorary Professor of Palliative Medicine at Makerere
University, Uganda, and an International Palliative Care Consultant.
Dr Patricia Granja H. is Medical doctor and lecturer/researcher at the Institute
of Public Health, Pontifical University of Ecuador.
Dr Liz Gwyther is Executive Director, Hospice and Palliative Care Association
of South Africa.

Nigel Hartley is Director of Supportive Care, St Christopher’s Hospice

London.

Professor Allan Kellehear is Professor, School of Health Administration,

Dalhousie University, Halifax, Nova Scotia, Canada.

Dr Suresh Kumar is Director of the Institute of Palliative Medicine, Kerala,

India, WHO Collaborating Centre for Community Participation in Pallia­
tive Care and Long Term Care.

Gerard Manion, Medal of the Order of Australia (OAM), is Director Cancer

Care Program and Co-­founder HOME Hospice, Australia.

Dr Helen-­Anne Manion, OAM, is Palliative Care Physician and Co-­founder

HOME Hospice, Australia.

Peter McLoughlin is Strategic Programme Manager, Lothian NHS Board, Edin­

burgh, Scotland.
 Contributors   xi
Prof Scott A. Murray is St Columba’s Hospice Chair of Primary Palliative Care,
Primary Palliative Care Research Group, The University of Edinburgh, Scot­
land.
Dr Faith Mwangi-­Powell is Executive Director, African Palliative Care Associ­
ation, Uganda.
Dr Heather Richardson is Director of Strategy at St Joseph’s Hospice, London
and National Clinical Head at Help the Hospices, London.
Dr John Rosenberg is Director of the Calvary Centre for Palliative Care
Research in Canberra, Australia.
Dr Bruce Rumbold is Director of the Palliative Care Unit in the School of
Public Health, La Trobe University, Victoria, Australia.
Dr Libby Sallnow is a palli­at­ive medicine registrar at St Joseph’s Hospice,
London and research associate, WHO Collaborating Centre for Community
Participation in Palliative Care and Long Term Care, Kerala.
Preface

Over the past 40 years, palli­at­ive care has made great strides in improving care
for those with life-­limiting diseases. A combination of inter­na­tional asso­ci­
ations, reforms to opiate prescribing laws, active research and education pro­
grammes, and gov­ern­ment strategy and pol­icy have combined to render
palli­at­ive care an accepted part of mainstream health care in many coun­tries.
However, notwithstanding these achievements, palli­at­ive care still has a long
way to go. In order to solve the urgent issues of access and equity which con­
front low- and middle-­income coun­tries, and to address meaningful solutions to
‘whole person care’ of a dying person and their family, we must move beyond
the bedside. In order to achieve meaningful cover­age by ser­vices which truly
address both symptom needs and the social, spiritual and psychological, we must
em­brace the more pen­et­rating models of com­mun­ity engagement in end of life
care.
Professionally led inpatient units encounter ser­ious demographic, geographi­
cal, technical and fin­an­cial bar­riers when built in resource poor settings. They
are in­ad­equate to provide the care required for the large numbers who need it,
meaning ser­vices are access­ible only by the few. The only solution to achieve
meaningful care for the great majority of those with chronic and incurable ill­
nesses is to provide it in their com­munit­ies, on their doorsteps, where even the
poor and debilitated can access it. This model translates to affluent settings,
where inpatient units are often in­ad­equate to provide care that truly enhances
the quality of life of the dying person and their family. The dying person cannot
be viewed in isolation from their family, friends and com­mun­ity. Whilst
symptom control by doctors is essential, medical professionals can never address
the myriad of social and existential prob­lems that those facing death must
contend with.
To address these concerns, com­munit­ies must be engaged and empowered to
help find solutions to the prob­lems they face. This book ex­plores pro­jects
throughout the world that have endeavoured to do just that. Chapter 1 sets the
his­tor­ical con­text for the alli­ance of pub­lic health and palli­at­ive care, and
Chapter 2 ex­plores in more detail the conceptual congruence between the two
fields. Chapter 3 develops the concept of ‘illness trajectories’ to understand
people’s dynamic and evolving ex­peri­ences at the end of life. Chapters 4, 5, and
 Preface   xiii
6 provide overviews of a pub­lic health approach on a coun­try or continent-­wide
level. Different examples from Australia, the UK and Africa illus­trate the
diverse and innov­at­ive ways in which a pub­lic health approach can subtly and
overtly influence the de­velopment of the palli­at­ive care agenda. The subsequent
chapters provide practice examples from a diverse range of settings. Chapter 7
provides an account of the prolific spread of palli­at­ive care through the southern
Indian state of Kerala, due in large part to the embracing by local com­munit­ies
of concepts of locally delivered and comprehensive care for the needy. Chapter
8 looks at how the com­mun­ity can be engaged in the contrasting inner city
setting of east London, whilst Chapter 9 de­scribes an initiative in Japan, where
local schools, businesses and health and social care organ­iza­tions are working
together to create ‘dementia friendly com­munit­ies’ where those with dementia
can live safely in the com­mun­ity whilst continuing to con­trib­ute to the so­ci­ety
in which they live. Chapter 10 looks at the trans­ferability of a model from an
urban de­veloped world con­text to a rural de­veloping world setting. Chapter 11
assesses a longstanding initiative, run in part­ner­ship with St Christopher’s
Hospice in London, linking chil­dren from local schools with patients from the
hospice. There, using creative arts, myths around death, dying and the hospice
can be challenged. Finally, Chapter 12 looks at a nascent palli­at­ive care ser­vice
in the South Amer­ican coun­try of Ecuador, where it was recog­nized from the
outset that care must go beyond simply the pro­vi­sion of ser­vices. The pub­lic
health agenda has evolved alongside palli­at­ive care pro­vi­sion, leading to im­port­
ant de­velopments in pol­icy and legis­la­tion, in parallel with com­mun­ity
de­velopment and medical support.
This book is intended as a handbook and prac­tical guide for those wishing to
initiate models of palli­at­ive care which engage local com­munit­ies to improve
the pro­vi­sion of palli­at­ive care for patients and their fam­il­ies. The appendices
include resources and guidance about how to initiate ser­vices in a range of set­
tings and stages of de­velopment. They include in­forma­tion on how to begin
engaging with local com­mun­ity groups or to start a ser­vice, and an example of a
national pol­icy for a pub­lic health approach to palli­at­ive care.
By illustrating the many and diverse models of com­mun­ity engagement in
palli­at­ive care that exist around the world, this book hopes to inspire its readers
and to support new and innov­at­ive initiatives in the care of the dying and their
fam­il­ies, friends and communities.
LS, SK and AK
London, 2011
Acknowledgements

We would like to thank the numerous organ­iza­tions that have allowed us to

reproduce their mater­ial for the appendices: the Government of Kerala, the
Neighbourhood Network in Palliative Care, the 100 Member Committee, La
Trobe University Palliative Care Team and Palliative Care Australia. Appendix
2 is reproduced with per­mis­sion of the publisher (www.informaworld.com) from
‘Charter for the Normalisation of Dying, Death and Loss’ by E. Clark, J. Dawes,
L.A. DeSpelder, Allan Kellehear et al., Mortality, Vol. 10:2, pp. 157–161 (2005).
We would also like to extend our thanks to the parti­cip­ants of the First Interna­
tional Conference on Public Health and Palliative Care, held in Calicut, Kerala
in Janu­ary 2009.
1 Public health and palliative care
An historical overview
Allan Kellehear and Libby Sallnow

What is public health?

The twentieth century has seen dramatic improvements in mor­tal­ity rates and
life expectancy; an achievement widely attributed to ‘pub­lic health advances’
rather than to clinical medicine. But the ubiquitous use of the term ‘pub­lic
health’ can cause confusion, as much pub­lic health practised today bears little
resemb­lance to that practised by the founders of this movement in the mid-­
nineteenth century. Public health is concerned with the health of people on a
popu­la­tion level. It aims to reduce mor­tal­ity and morbidity and improve the
health of com­munit­ies, cities or nations. As pub­lic health focuses on major
killers or disease burdens, it must evolve as they change.
Health is influenced by more than just biomedical factors and thus pub­lic
health is linked to the pre­val­ent social, polit­ical and eco­nomic influences on
health. Public health is usually defined in terms of its aims: to reduce disease
and improve health. As pub­lic health does not adhere to a par­ticu­lar the­or­etical
framework or specific methodology, tensions can exist between different areas.
It is currently said to be facing a crossroads (Beaglehole and Bonita 2004) but,
in order to understand the current tensions, it is im­port­ant to ac­know­ledge the
his­tory of the movement, as the struggles and successes of the past inform many
of the current conflicts.

The history of public health

The im­port­ance of maintaining the health of a popu­la­tion has been recog­nized
by gov­ern­ments and doctors alike since the time of Hippocrates. Although some
changes implemented by the Romans and Greeks would now be classed as
pub­lic health meas­ures, the concerted study of pub­lic health as a dis­cip­line can
be traced to the time of the Industrial Revolution. Rapid urbanization and the
de­velopment of industry on a large scale presented sudden threats to health and
new disease burdens. In addition to this, the traditional means of coping with
ill­ness, injury and dying were stripped away as people left their rural com­
munities where strong support networks for the needy and vulnerable had been
built up.
2   A. Kellehear and L. Sallnow
Governments began to focus specifically on threats to health, prim­arily as
they were seen to have an influence on eco­nomic productivity and social order.
The first pub­lic health studies were broad demographic studies of mor­tal­ity rates
in different districts and from these an appreciation of the social and envir­on­
mental determinants of disease grew. In France, in 1821, a surgeon, Rene Louis
Villermé, examined the health im­plica­tions of a large study of mor­tal­ity rates
carried out in Paris.
Searching for a factor that correlated with the high rates seen in certain dis-
tricts, he found that the strongest by far was income (Porter 1999). In the UK,
at approximately the same time, people were becoming increasingly dissatisfied
with the Poor Laws, a set of meas­ures devised to support those who could not
work. It was felt they were an un­neces­sary expenditure and in 1834 a report was
commissioned into the causes of pov­erty and the need for the Poor Laws. This
enquiry was chaired by Edwin Chadwick, a committed follower of the emerging
school of thought of Utilitarianism. The link was made between pov­erty and ill
health but it was believed that disease caused pov­erty, rather than pov­erty influ­
en­cing disease (Hamlin 1994). It was felt that if you removed causes of disease,
res­olu­tion of pov­erty would follow. In accordance with the estab­lished theories
of disease, such as the theory of miasma, the idea that diseases are spread by the
gases emitted from rotting mat­ter, the re­com­mendations were narrow in scope
and reflected the pre­val­ent reductionist approach to health. New sewer systems
and waste disposal schemes were installed but no attempts were made to address
the other causes of pov­erty. The revolu­tion heralded by the germ theory later in
the nine­teenth century served only to compound this reductionist approach and
the remit of pub­lic health was narrowed further.
In 1847, a typhoid epidemic broke out in the Prussian province of Silesia.
The gov­ern­ment was concerned as it was impacting on the profits from the
mining industry and Rudolf Virchow, a young doctor, was sent to investigate
the causes. He had been influenced by the work of Chadwick and Villermé and
produced a report detailing the social causes for the outbreak and re­com­mending
better pay and working hours, housing and diet and a joint committee of lay
people and professionals to monitor and or­gan­ize the relief efforts (Waitzkin
2006). He was dismissed after his report was filed but the ex­peri­ence shaped Vir-
chow’s view of disease and he maintained that every disease has two causes: the
pathological and the political.
Public health in the eight­eenth and nine­teenth century is often referred to as
the ‘Golden Age’ of pub­lic health, when rapid improvements in mor­tal­ity rates
were made and control over many diseases was achieved. Sanitary reform and
legis­lat­ive action were the basis for pub­lic health meas­ures in the mid- to late
eight­eenth century, with dramatic improvements in mor­tal­ity rates seen in
many areas (Szreter 1988). The germ theory heralded a new era, which over-
shadowed the older, envir­on­mental approaches. A focus on transmission, isola-
tion and targeted antimicrobial therapies caused pub­lic health to become
col­on­ized with medical professionals and the social reformers were gradually
squeezed out. Public health slowly became a specialty allied to medicine. The
 Public health and palliative care   3
twentieth century posed a dramatically different set of challenges to pub­lic
health. The previous century had been dominated by con­ditions such as cholera,
tuberculosis and malaria exacting a high death toll. The epidemiological trans-
ition to non-­communicable diseases in the twentieth century in the de­veloped
world meant pub­lic health needed to find new methods to approach the health
prob­lems presented by these diseases. Aetiologies were not easily elucidated and
were multifactorial. A single biological factor was not respons­ible, meaning pre­
ven­tion strategies had to look outside the con­tempor­ary sci­ent­ific sphere.

The new public health

The broadening of the ‘host-­agent’ para­digm that had long dominated pub­lic
health prompted those in pub­lic health to again re-­examine the causes of disease.
In the UK, a report was commissioned in the 1970s to look at in­equal­it­ies in
health. The Black report, written by Sir Douglas Black, found that a gradient
favouring the higher socioeco­nomic classes existed in most health in­dic­ators.
This disparity persisted despite the National Health Service providing medical
care free at the point of delivery (Davey Smith et al. 2001). This and other sim­
ilar realizations around the world meant that the social determinants of disease
were once again con­sidered when looking at causes and pre­ven­tion of disease.
In Canada, this appreciation of the wider social determinants of disease was
formalized in 1974 with the ‘Health Field Concept’. The then health min­is­ter,
Marc Lalonde, argued that four elements were involved in determining health
outcomes: human biology, envir­on­ment, lifestyle and health ser­vices (Lalonde
1974). This prompted an examination of lifestyle and envir­on­mental factors
that indi­viduals could control that would then influence health. Although
useful in broadening the scope of pub­lic health, this was later criticized as creat-
ing a culture of ‘blaming the victim’, as many of these factors were in fact
beyond an indi­vidual’s control.
The Alma-­Ata Declaration of 1978 by the World Health Organization
(WHO) took this a step further. In order for comprehensive pri­mary care ser­
vices to be successful in improving the health of com­munit­ies, the ser­vices
needed to be appropriate and sus­tain­able. The key part of this was parti­cipa­tion
of the local com­mun­ity. Services should be de­veloped in part­ner­ship with local
people, meaning they would be able to ac­cur­ately address the needs of the
people they were serving. This suggestion of health inter­ven­tions being done
with people rather than on people is one of the central themes of the new pub­lic
health. The Alma-­Ata Declaration was followed in 1986 by the Ottawa Charter
for Health Promotion (see Box 1.1). This was again put forward by the WHO
and it proposed a new model for addressing health, defining it in a pos­it­ive way,
rather than simply the absence of disease. In addition to indi­vidual lifestyle
factors involved in determining health, there were other, more structural or eco­
lo­gical factors that also need to be tackled in order to see any real health gains.
For example, health education and empowerment needs to be followed by legis­
lat­ive action such as seatbelt laws or a ban on cigarette advertising.
4   A. Kellehear and L. Sallnow

Box 1.1 The Ottawa Charter

1 Building healthy public policy
2 Creating supportive environments
3 Strengthening community action
4 Developing personal skills
5 Re-­orientating health services
Source: adapted from WHO (1986)

The new dis­cip­line of health pro­mo­tion was built on the participatory notion
of health, namely that the very people whose health was affected often had the
answers about how to solve the prob­lems. The professional dominance of those
from outside assuming they knew best for a com­mun­ity was challenged and this
set the new pub­lic health apart from previous initiatives.

Hospices, poor houses and the development of palliative care

The adoption of the term ‘hospice’ by the early workers in palli­at­ive care in the
1960s both ac­know­ledged the his­tory of institutions caring for pilgrims, travel-
lers and the poor when sick, but also reflected a new philo­sophy. The significant
his­tor­ical, cultural and religious overtones contained in the word ‘hospice’ mean
it is not a neutral term and it has been used to de­scribe widely different, if not
contra­dict­ory, institutions over time. The his­tory of hospices through time
reflects the parallel de­velopments in sci­ent­ific, religious and polit­ical arenas.
In the early uses of the term, in the Middle Ages, ‘hospice’ was syn­onym­ous
with ‘hos­pital’, as places for the sick to reside. The lack of any formal medical
pres­ence meant the distinction between investigation and treatment or support-
ive care was not made. In the affluent classes, medical care was provided in the
home and thus the majority of the patients in the early hospices were the poor
and homeless. With the advent of the Crusades and religious pilgrimages, large
numbers of people were displaced from home. They required shelter and support
when they became unwell whilst travelling, and these were met by the early
religious hospices. Often run by monks or nuns, they were based on the Chris­
tian ethic of care for the needy and there was an emphasis on meeting spiritual
needs (Saunders and Ross 2001). With the Reformation, many of these religious
hospices were disbanded and, as the profession of medicine began to de­velop, a
distinction between hospices and hos­pitals de­veloped. Many hos­pitals instated a
pol­icy of not admitting incurable or dying patients, emphasizing that they were
places of cure (von Gunten 2005).
The Industrial Revolution caused great social upheaval. The large number of
people living in the newly created cities had left behind their com­munit­ies and
traditional means of support. When they became ill or homeless they needed to
look for new, al­tern­ative means of support. The workhouses provided the
employment for the majority of the new inhabitants of the cities. Living in
 Public health and palliative care   5
slums and working in dangerous con­ditions, the mor­tal­ity and morbidity rates
were high and traditional family roles changed as all were required to work in
the factories.
New pro­vi­sion was required to house the poor who could no longer work or
who were dying. The workhouse infirmaries or poor houses were the solution to
this prob­lem. Created simply to house this section of so­ci­ety, there was little
medical pro­vi­sion and no ethos of care of the indi­vidual. In Spain in the eight­
eenth century, the Royal Hospice in Madrid was said to act as both an alms
house and a jail. Legislative change aimed to contain pov­erty, and undesir­able
elements of so­ci­ety were sent to the hospice and kept there under armed guard.
These asso­ci­ations have been maintained, with the current meaning of a
hospice in-­patient, hospiciano, still denoting extreme pov­erty (Nunez Olarte
1999). Thus the old understanding of the term ‘hospice’ centred around ideas of
containment (Humphreys 2003) – containment of disease, undesir­able aspects
of so­ci­ety and pollution, as this was seen as syn­onym­ous with disease. This insti-
tutionalized view of end of life care – to view death and dying as polluting
ex­peri­ences to be ‘contained’ – reflected the pre­val­ent ideas in pub­lic health at
the time.
The theories of contagion and miasma suggested that pollution and pov­erty
should be kept away from the healthy, to protect them, and there was no con­
sidera­tion of more inclusive strategies to address the root causes and integrate
the different aspects of so­ci­ety. The de­velopment of the modern hospice move-
ment has its roots in this tradition – a commonly unac­know­ledged insight into
the sociology of health pol­icies for end of life care. Institutions were built to
house the dying, to set them apart from the com­mun­ity (Abel 1986). Although
they were intended to serve the terminally ill of the com­mun­ity, they were not
involved with it and this could also be seen as an effort to ‘contain’ the dying
from the wider so­ci­ety. The para­digm is now gradually being shifted to take a
broader view of the dying and terminally ill.
Influenced by the ideas of new pub­lic health and com­mun­ity empowerment,
the bound­ar­ies between institutions and com­munit­ies are being broken down
and a more participatory, interactive collaboration is being de­veloped: moving
away from the focus on disease to a more pos­it­ive understanding of health; away
from containment of pollution and pov­erty to emphasizing social and col­lect­ive
respons­ib­ility. A pub­lic health approach to palli­at­ive care today includes all
these elements and is part of the broader and global health pro­mo­tion
movement.

The emergence of community development in health

promotion
As mentioned earl­ier, in 1986 the WHO released the Ottawa Charter for
Health Promotion. This charter became a watershed of ideas for the ‘new’ pub­lic
health. Though new ideas of pub­lic health had already made the asso­ci­ation
between the idea of phys­ical settings and envir­on­ments to social settings and
6   A. Kellehear and L. Sallnow
envir­on­ments, the mode of working in these quite different ecologies was largely
unknown or unprecedented. There were many pub­lic health workers who
merely felt that social envir­on­ments – indi­viduals and groups going about their
every­day business of work, play or worship – should be ‘targeted’ and changed
with ‘inter­ven­tions’. The prob­lem of cancer, for example, like the prob­lem of
polluted drinking water or poor sanitation, should simply be subject to the same
inter­ests in surveillance, education and then appropriate health services.
The Ottawa Charter was among the first modern pub­lic health docu­ments
that challenged this didactic, professional dominance model. Its five prin­ciples
ad­voc­ated the building of pub­lic pol­icies that supported health (as opposed to
only disease inter­ven­tion) but it was clear that this meant the need to ‘create
supportive envir­on­ments’, to ‘strengthen com­mun­ity action’, as well as to
de­velop personal skills and re-­orient health ser­vices. In meeting these new and
somewhat radic­ally different goals, the new pub­lic health was to be ‘participa-
tory’. This was no set of pub­lic health initiatives that added to the list of things
that we, as professionals, do TO others. The new approach to pub­lic health was
that health and social care was a collection of changes to enhance health and
safety that we do WITH others.
In this subtle change of pol­icy language, a new and rather novel set of
as­sump­tions had crept in. It had long been as­sumed in the ‘old’ pub­lic health
model that professional health workers knew best. People who were not ‘trained’
in health know­ledge charac­ter­istic of aca­demic subjects such as medicine,
nursing or pub­lic health were ‘lay’ people. Lay people were largely ig­nor­ant of
their own health because their know­ledge about anatomy, biology, patho-­
physiology or clinical pharmacology were minimal or absent. The expertise, and
therefore the authority and respons­ib­ility for surveillance and change, must
emanate from professionals. It became rapidly apparent in the 1960s that there
were severe limits and constraints on this approach and these assumptions.
Furthermore, pub­lic health research in diverse areas from occupational
health and safety, sexual and mental health to cardiovas­cu­lar and gastrointesti-
nal medicine were uncovering the fact that many dimensions of an indi­vidual’s
health were not entirely under that indi­vidual’s control. Moreover, indi­viduals
and groups had extensive ex­peri­ence concerning the bar­riers that needed to be
overcome to access better health in their own work, family or sexual circles and
envir­on­ments. In other words, so-­called ‘lay’ popu­la­tions enjoyed their own
‘expertise’ because only they knew best HOW better health might be obtained
because they were often more know­ledge­able about what they were personally
up against to achieve this. People often recog­nized the bar­riers to their own
health goals, and were able to identi­fy the supports needed to help them give up
smoking, eat an improved diet or who to depend on in times of crisis or trauma.
Recognition of this social fact meant that a part­ner­ship between health ser­vices
and com­munit­ies became essential to health promotion.
In mat­ters to do with end of life care, the need to work with com­munit­ies in
designing their own ways to care for one another is an equally im­port­ant aspect
of a health promoting palli­at­ive care approach (Kellehear 1999, 2005). Within