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Applying a public health perspective to end-of-life care

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 Chapter 1

Applying a public health perspective

to end-of-life care
Joachim Cohen and Luc Deliens

Introduction
Guaranteeing a good ending to life for people with life-threatening illnesses requires impec-
cable assessment and evaluation of their own and their family’s needs and preferences and the
consequent delivery of adequate and patient-centred care. Traditionally, this aim has been
approached primarily from the perspective of the carer–patient relationship, or at best as
the interaction between patient, family, and caregivers. This is reflected in most textbooks
on palliative care (e.g. the Oxford Textbook on Palliative Nursing (1) and the Oxford Textbook
on Palliative Medicine (2)) which are mostly aimed at optimizing individual care relationships,
improving the understanding and honouring of the patient’s and family’s experiences near
the end of life, and addressing the physical, psychological, social, and moral distress that
impedes a peaceful dying. The needs of the dying person are the primary concern, but respon-
sibilities towards the family and the support network, such as bereavement support, grief
counselling, and social support, are also considered. Patients are viewed as individuals with
their own stories and histories.
Such an individual approach to the end of life may be sufficient, and in fact most
appropriate, to meet the needs of the dying person and all other actors involved, but it
may be inadequate to address the problems on a population level. This book will argue
for, and illustrate the need of, a public health approach to organizing and safeguarding good
end of life through impeccable assessment and evaluation of the needs and preferences of
dying people and their families, and through the delivery of patient-centred care.
In this introductory chapter we will first describe the essential features of palliative care
and of public health. By indicating how demographic, epidemiological, and societal
changes are affecting the circumstances of death and dying and creating societal chal-
lenges to its organization, we will illustrate how—from a societal perspective—the quality
of dying is an issue of health promotion that a society should increasingly consider as a
crucial aspect of population health, and will provide a sociological justification for adopting
a public health approach to end-of-life issues. Next, we will elaborate on what we think
this means by describing the concept of the ‘new public health’ and applying it to the end
of life. As such we want to narrow down the definition of a public health approach in end-
of-life care and explain why areas that are rather clinically oriented, that pertain to traditional
laboratory science, or that focus on individual instead of population health, will not be

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 4 APPLYING A PUBLIC HEALTH PERSPECTIVE TO END-OF-LIFE CARE

covered by the book. Subsequently we will try to identify the core end-of-life care domains
as approached from a new public health perspective.

Palliative care and public health: definitions

The World Health Organization (WHO) has defined palliative care as an approach that
improves the quality of life of patients and their families facing the problems associated with
life-threatening illness, through the prevention and relief of suffering by means of early iden-
tification and impeccable assessment and treatment of pain and other problems, physical,
psychosocial, and spiritual (3). The WHO definition further states that palliative care:
◆ provides relief from pain and other distressing symptoms
◆ affirms life and regards dying as a normal process
◆ intends neither to hasten nor postpone death
◆ integrates the psychological and spiritual aspects of patient care
◆ offers a support system to help patients live as actively as possible until death
◆ offers a support system to help the family cope during the patient’s illness and in their
own bereavement
◆ uses a team approach to address the needs of patients and their families, including
bereavement counselling, if indicated
◆ will enhance quality of life, and may also positively influence the course of illness; is
applicable early in the course of illness, in conjunction with other therapies that are
intended to prolong life such as chemotherapy or radiation therapy, and includes those
investigations needed to better understand and manage distressing clinical complications.
The WHO definition of palliative care applies not only to individual carer–patient–
family relationships but also implies that public health systems need to monitor the prob-
lems people with life-threatening illnesses are experiencing and create circumstances
favourable to tackling them in the best possible ways. While the WHO has recognized
palliative care as a major public health priority for all countries (4;5), it remains a theme
only sporadically dealt with within public health. The focus of public health has traditionally
been on preventing illness and premature death; preventing suffering and optimizing the
quality of dying has not been part of this paradigm. Conversely, a population health approach
is rarely deliberately applied within the end-of-life care field, where the individualistic
approach persists.
Public health can be broadly defined as one of the tools used by society to protect, promote,
and restore people’s health. It is the combination of sciences, skills, and beliefs that is
directed to the maintenance and improvement of health through collective or social
actions (6). The ‘promotion and restoration’ of health does not have to be seen only as a
curative approach illness; health can also be defined in a positive way as energy and vitality,
the ability to do things, a general feeling of well-being, being able to maintain social relation-
ships, or as psychosocial well-being (7). As such, health and well-being will be influenced
by circumstances such as tiredness, fear, anxiety, stress, and burdensome symptoms, and

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 APPLYING A PUBLIC HEALTH PERSPECTIVE TO END-OF-LIFE CARE 5

also by the physical and social environment. Hence, health promotion also includes
improving those circumstances for dying people.
The reference to ‘collective or social actions’ suggests that public health could be
regarded as a collective counterpart of individual patient care (6); rather than the health
of an individual patient and their family it is focused on the health of the population.

Applying a public health perspective to end-of-life care

Important demographic and social changes have occurred, and continue to occur, in
most developed countries, progressively increasing the importance of good supportive
and end-of-life care, increasingly confronting societies with the challenges of the care
needs of old age and death, and of dying as part of societal life.

Increase in life expectancy

As a result of public health measures, most developed countries have experienced a strong
increase in life expectancy over the previous century. Figure 1.1 shows that in Sweden
(a country with very early mortality data) a rise in life expectancy at birth occurred particu-
larly in the twentieth century, largely as a result of the public health policy approach
towards population health in that period. After the Second World War life expectancy
rose almost linearly with around one season increase per year.
Not all countries have mortality data going back as far as Sweden does, but it can safely
be assumed that most countries which industrialized early experienced similar shifts in

2007: 81.08
90.00

80.00

70.00

60.00

50.00

40.00

30.00

20.00

10.00
1751 1767 1783 1799 1815 1831 1847 1863 1879 1895 1911 1927 1943 1959 1975 1991 2007

Fig. 1.1 Change in life expectancy in Sweden 1751–2007.

Source: graph made by the authors based on data obtained through the Human Mortality
Database, www.mortality.org (8).

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 6 APPLYING A PUBLIC HEALTH PERSPECTIVE TO END-OF-LIFE CARE

life expectancy. In most of these countries a sharp increase in life expectancy at birth can
be observed from 1950 onwards, and several counties now have an average life expectancy
(men and women together) of over 80 (8). Moreover, life expectancy keeps increasing,
and it should be borne in mind that the life expectancy at birth in a particular year (e.g. 2007)
is actually based on observed mortality and hence mostly on that of people born several
decades previously. With a progressively increasing life expectancy, the cohorts that
are young now or even middle-aged, and the very large baby-boom generation (i.e. the
generation born in the years after the Second World War) can be expected to die at an
even older age.

An aging population
This increase in life expectancy contributes to an aging population, especially as it coin-
cides with a dramatic drop in the fertility rate after the generation born in the years after
the Second World War. The implications for the structure of the population are obvious
in Figure 1.2. At the end of the nineteenth century (see the example of the Netherlands)
or even shortly before the Second World War (see the example of the USA) the population
structure in most developed countries had was shaped like a pyramid, with every generation,
generally, more numerous than the previous one. The period roughly between 1946 and
the early 1960s was characterized by a high birth rate, giving life to the so-called baby-
boom generation. In the age pyramids of around 1955 this large generation can already be
observed in the bottom age categories. Today this generation is aged around 50–65, and
we can see how its size, the aging of the population, and the low birth rate has impacted
on population structure.
With this situation, it can be expected that the number and proportion of older people
will increase sharply in the coming years. In the European Union (27 member states)
the proportion of people aged 65 years or over in the total population is projected to
increase from 17.1% in 2008 to 30.0% in 2060 with the number rising from 84.6 million
to 151.5 million. Similarly, the number of people aged 80 years or over is projected almost to
triple from 21.8 million (4.4%) in 2008 to 61.4 million (12.1%) by 2060 (9). According to pro-
jections by the UN, the number of people aged 80 years and over worldwide will rise from
102 million in 2009 to 395 million in 2050 (10). Needless to say, this will increasingly con-
front societies with the challenge of taking care of frail and older people and guaranteeing
them a good quality of life. Moreover, even if the life expectancy free of disabilities or
health problems increases, the period people will live with disabilities or health problems
will still increase as the total lifespan increases (6). This will also increase the period in
which people will need care.

Increasing the informal care burden

This expected and increasing burden will moreover have to be borne by a relatively, and
increasingly, smaller group. The old age dependency ratio, expressed as the level of support
of those aged 65 years or over by those aged between 15 and 64, may be indicative of the
care burden within society. The old age dependency ratio is expected to rise substantially

01 Cohen Ch 01.indd 6 12/20/2011 10:05:20 AM

 Population before WW II Population shortly after WW2 the Netherlands Population nowadays
1881 90+ 1955 90+ 2009

01 Cohen Ch 01.indd 7
80–84 80–84 85–89
Men Women
70–74 70–74 75–79
Men 60–64 Women Men 60–64 Women 65–69
50–54 50–54 55–59
40–44 40–44 45–49
30–34 30–34 35–39
20–24 20–24 25–29
10–14 10–14 15–19
0–4 0–4 5–9
−40 −30 −20 −10 0 10 20 30 40 −70 −50 −30 −10 10 30 50 70 −100 −50 0 50 100

USA
1933 90+ 1955 90+ 2008 90+
80–84 80–84 80–84
Men Women
70–74 70–74 70–74
Men 60–64 Women Men 60–64 Women 60–64
50–54 50–54 50–54
40–44 40–44 40–44
30–34 30–34 30–34
20–24 20–24 20–24
10–14 10–14 10–14
0–4 0–4 0–4
−1000 −500 0 500 1000 −1000 −500 0 500 1000 −1200 −700 −200 300 800
(West) Germany
1956 90+ 2009 90+
80–84 Men 80–84 Women
Men 70–74 Women 70–74
60–64 60–64
50–54 50–54
No data available 40–44 40–44
30–34 30–34
20–24 20–24
10–14 10–14
0–4 0–4
−300 −200 −100 0 100 200 300 −300 −200 −100 0 100 200 300

Fig. 1.2 Age pyramids in the Netherlands, USA, and Germany.

Source: graphs made by the authors based on data obtained through the Human Mortality Database, www.mortality.org (8)
APPLYING A PUBLIC HEALTH PERSPECTIVE TO END-OF-LIFE CARE

Population numbers* 10000 dark grey squares roughly represent the baby-boom generation.
7

12/20/2011 10:05:20 AM
 8 APPLYING A PUBLIC HEALTH PERSPECTIVE TO END-OF-LIFE CARE

70

60

50

40

30
2008
20 2060

10

0
Germany
Italy
Greece
Sweden
Portugal
Belgium
Austria
Estonia
France
Finland
United Kingdom
Switzerland
Spain
Denmark
Hungary
Norway
Netherlands
Czech Republic
Poland
Slovakia
Ireland
Fig. 1.3 Old age dependency ratio in Europe, 2008 and 2060.*
*Old age dependency ratio = population aged 65 and over/population aged 15–64. Figures for
2060 based on population projections (graph made by the authors based on data obtained
through Eurostat).

in the European Union from its current levels of 25.4% to 53.5% in 2060, with variable
figures for the different member states (Figure 1.3) (9).

Increasing death rates

As a result of this population ageing, the number of deaths has also begun to increase
(Figure 1.4). While most developed countries still have higher birth than death rates
(e.g. USA), some (e.g. Germany, Japan) have already entered the stage of higher death
than birth rates, sometimes referred to as the fifth stage in the demographic transition
(11;12). From 2015 onwards deaths are expected to outnumber births within the European
Union. Most developed countries will at some point experience similar shifts. Projections
made by Statistics Canada for instance show that, depending on how optimistic a scenario
for the evolution in life expectancy is assumed, that the number of deaths in 2055 will be
about double, or more, that of deaths currently taking place (13).
Moreover, it has been estimated that each death potentially affects the lives of on average
five other people in terms of caregiving and grieving; it is estimated that currently about
290 million people worldwide are affected each year by death and dying and that this
number will increase sharply in the near future (14). By 2030 there will be an estimated
74 million deaths per year, which will increase the number of people affected by death
and dying per year to 370 million (14). Obviously death and dying will become a major
issue for the health of populations.

01 Cohen Ch 01.indd 8 12/20/2011 10:05:20 AM

 APPLYING A PUBLIC HEALTH PERSPECTIVE TO END-OF-LIFE CARE 9

USA
4500000
- births
4000000

3500000

3000000

2500000 - deaths

2000000

1500000

1000000
1933 1970 2007

Japan
2900000

2400000

1900000

1400000
- deaths
- births
900000

400000
1933 1970 2007

Italy
1100000

1000000

900000

800000

700000

600000 - deaths
- births
500000

400000
1933 1970 2007
Fig. 1.4 Evolution of births and deaths in USA, Germany, and Japan.*
*Graphs made by the authors based on data obtained through the Human Mortality Database,
www.mortality.org (8).

01 Cohen Ch 01.indd 9 12/20/2011 10:05:20 AM

 10 APPLYING A PUBLIC HEALTH PERSPECTIVE TO END-OF-LIFE CARE

Epidemiological transition
Along with the ageing of the population and the subsequent increase in the number of
deaths, there is also an ongoing shift in the predominant causes of death (15;16;17).
People increasingly die from chronic diseases like cancer and chronic heart disease and
growing old is increasingly typified by a slow degenerative dying process rather than by a
sudden or quick death. Even among those dying at an old age the causes have changed
dramatically, and dying is increasingly related to circulatory diseases such as congestive
heart failure, neurological diseases like dementia, or cancer in old age.
Currently it is estimated on the basis of the conditions leading to death in developed
countries that at least about 40% of all deaths could benefit from some form of palliative
care or care with an end-of-life focus (5;18). With the ongoing changes in the predominant
causes of death this proportion can be expected to increase in the future.

Cultural changes in society

Apart from these demographic and epidemiological changes, a number of cultural and
attitudinal changes have occurred (e.g. increased intolerance of pain and suffering,
increasing value put on personal autonomy, individualism, and right to self-determination,
and changed medical aspirations) which have changed our concerns about and expectations
of the circumstances in which death and dying take place (19–21). One could say that
gaining some form of planning over one’s death and achieving a ‘good death’ have become
more important in the minds of people in many developed countries. With the ‘empowered’
post-war generation reaching old age it can be expected that even stronger demands regarding
the circumstances of and care at the end of life will be made in the near future.

In short, there have been and will continue to be a number of demographic, epidemio-
logical, and societal changes that increasingly confront societies with challenges regarding
the organization of end-of-life care and of death and dying. Rising life expectancy and
dropping birth rates have, in developed countries, contributed to aged populations and
are soon to result in a relatively large group of older people. As this shift is also associated
with an increase in older people living with certain health problems or care needs, it will
confront societies with the public health challenge of organizing long term and end-of-life
care for older patients. With a much smaller group of younger people to take care of older
relatives the burden on informal caregivers will have an important influence on popula-
tion health and will need to be balanced against the costs of organizing formal care to
support end-of-life care needs. The number of deaths is on the rise and is, as a result of
the large generation born in the years after the Second World War, expected to increase
in the coming decades. Additionally, the proportion dying from or with conditions for
which some type of palliative care is beneficial also increases, which means that palliative
care or care with an end-of-life focus will need to become public health priorities in order
to guarantee a good quality of end of life. The so-called ‘baby-boom generation’, culturally
different from its predecessors, may pose stronger demands as to the quality of end-of-life
care and even increase the public health demand for a ‘good enough’ death. If we also take

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 A ‘NEW PUBLIC HEALTH’ APPROACH TO END-OF-LIFE CARE 11

into account that several other people are affected by each death in terms of informal
caregiving and grieving the public health challenge to protect the health and well-being of
the population directly or indirectly involved with death and dying is even more obvious.

A ‘new public health’ approach to end-of-life care

The term ‘public health’ has described different things over time and its field of application
has periodically changed. Wile there is variation between different countries (for instance
also between the United Kingdom and the European continent), we could conveniently date
the origins of public health to the beginning of the nineteenth century, when governments
were putting considerable public effort into controlling disease and creating healthier living
environments, mainly as a response to health problems (in particular cholera and typhoid)
emanating from industrialization and urbanization (7). Public health legislation and
sanitary reforms were the main spheres of action. Some of the most important population
health successes were made in this period, mainly through non-medical intervention. The
economic affluence of the 1950s to 1970s inspired a strong public health focus on improving
the quality of life and on developments in clinical medicine, driven by the mounting
Enlightenment belief that medicine would be able to conquer disease and premature
death. This led to an individualistic approach to public health with a strong focus on
clinically-oriented health care interventions. From the 1970s onwards a focus developed
on the effects of affluence on chronic diseases, focusing strongly on individual behaviour
and lifestyle, and the first large-scale post-war economic crisis led to a rationing of health
care spending. This era paved the way for the ‘new public health’ which from the mid-
1980s developed as a reaction to the public health approach that had been dominant since
the 1950s, in which too much focus had been placed on the medical profession or on
the prevention and cure of disease. The new public health criticized this approach and
formulated a number of new directions in public health. It put less emphasis on the
biomedical approach and more on social and economic aspects and aimed to focus more
on equity and on attempting to break down barriers between professional groups and lay
people. It essentially put population health in the foreground instead of individual health
such as clinical interventions. Regarding methodology, the new public health recognized
the usefulness of methodologies other than epidemiological research.
For this book on end-of-life care from a public health perspective, we use the concept of
‘the new public health’ as the most useful approach in narrowing the scope of the book (7).
In applying it we want to make a distinction between the public health approach, primarily
concerned with population health and hence the quality of end-of-life care on a population
level, and the medical patient–caregiver approach that focuses on clinical interventions or
other aspects of individual quality of end-of-life care and quality of the end of life. As such,
we could describe the field of public health at the end of life as the efforts organized by
society to optimize the circumstances of the dying and all those involved through collective
or social actions. From a public health perspective, we are concerned with the quality of
end-of-life care of populations, not just the individuals within them. This implies a much
wider view than the strictly medical or paramedical, and in fact requires input and insights

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 12 APPLYING A PUBLIC HEALTH PERSPECTIVE TO END-OF-LIFE CARE

from different scientific disciplines (e.g. medical, paramedical, sociological, psychological,

anthropological, health economics) acquired through different research methodologies.
The reader will notice this variation in scientific disciplines in the selection of the authors
of the separate chapters discussing findings based on various research methodologies.

End-of-life care foci from a new public health approach

(outline of the book)
Good end-of-life care is amenable to population-based and public sector interventions
and has the potential to improve the circumstances of dying on a population scale (22).
Hence, end of life care is an important public health issue. Applying a new public health
approach to end-of-life care may make little difference to the quality of care for individual
patients, but the relevance is that with the growing proportion of people benefiting from
it, these small differences can make a big difference on a population level.
In the next paragraph we delineate possible issues of concern with a new public health
for the end of life approach, both from a public health policy perspective and a public
health research perspective. These issues will be dealt with in the subsequent chapters.
In order to inform a public health policy debate, it is first necessary to gather population-
based data on the manner and circumstances in which people die; before public policies
try to impact on these circumstances, and improve the quality of the end of life, it is first
necessary to be aware of existing problems and concerns. While the causes of mortality
and morbidity have been extensively described, there has not been a systematic public
health interest in the other circumstances of death and dying. Part II of the book will
describe the clinical and social context of death and dying in our societies.
First, Chapter 2 by Tang and Chen will describe where people die in various European,
Asian, and North-American countries, and which factors influence place of death. Generally,
terminal patients and their informal caregivers prefer death to occur at home (23), and there
is ample evidence that dying at home can contribute to a better death compared with dying
in an institution (24;25). In reality, however, only a minority of people eventually die at
home (26). Knowing which people die where and which factors influence this is essential
in developing rational and appropriate public health policies that support the preference
of many to die at home. The systematic description and cross-national comparison in the
chapter by Tang and Chen is instructive in this context as it allows the identification of
factors (e.g. the organization of care provision) facilitating home death.
Chapter 3, by Irene Higginson, will look beyond where people die to the circumstances in
which they die, including symptoms, physical, psychological, social and spiritual concerns,
the quality of life and of dying, and the experiences of caregivers. Hitherto little has been
known about the circumstances of dying and death on a population level, with most studies
being limited to patients with certain terminal diagnoses or those making use of certain
forms of care. The few population-based studies that do provide important information
in this respect unequivocally suggest unmet care needs for many of the dying and a rather
unattractive picture of the care of dying people, with many experiencing severe pain,
a high number of transitions among health care settings in the last weeks before death,

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 END-OF-LIFE CARE FOCI FROM A NEW PUBLIC HEALTH APPROACH (OUTLINE OF THE BOOK) 13

a high average number of days spent in an ICU, and many unmet care needs (27–34). The
chapter by Higginson discusses the findings of some of those and other studies regarding
the experiences of patients and families towards the end of life and the circumstances of
death and dying.
Within the context of an ageing population and a growing tension between medical-
therapeutic possibilities on the one hand, and demands for more patient-centred and
comfort-oriented approaches at the end of life on the other, end-of-life care decisions are
also becoming an increasingly important issue in medicine and public health (21;34–37).
Chapter 4 by Agnes van der Heide and Judith Rietjens describes the empirical population-
based evidence worldwide on how often and in which ways these decisions are made and
thereby provides important information to facilitate interventions to improve the quality
of end-of-life care and to safeguard good end-of-life practice.
Another way in which the type of care one receives influences circumstances at the end
of life is through its financial implications, both for society and for patients and families.
The costs of medical care seem increasingly to be a burden on society and therefore
are becoming an economic health policy issue. The costs of medical care sharply increase
towards the end of life (38). Studies in the USA indicate that about 80% of medical care
expenditure occurs in the last year of life, 40% in the last month (38). In the UK, about
12% of total health care costs (39) and in the USA about a quarter of total Medicare
expenditure (40) is spent on the end of life (40). Hence end-of-life is a major public
health concern, leading to the need to look for efficient distribution of means and rational
and cost-effective ways of providing good end-of-life care. In Chapter 5, Konrad
Fassbender and Lindsey Sutherland present evidence of the costs of the final stage of life
and particularly of the economic implications for families providing care for their dying
relatives themselves and the costs of this for society as a whole.
Public health is essentially concerned with good access to appropriate health care and
equity in that access. In terms of end-of-life care this implies that public health policy
needs to be concerned with what type of health care people are accessing or receiving at
the end of life and why they are or are not accessing or receiving it. It also implies that people
with equal needs at the end of life should have the same access to the same end-of-life
care. Part III of the book deals with the issues of access and use of end-of-life care services,
and the barriers thereto. The first chapter of this section (Chapter 6), by Kirsten Wentlandt
and Camilla Zimmermann, addresses the issue of how the end of life is characterized for
a majority of patients by an aggressive care approach, with an overuse of certain aggressive
treatments and acute care services (eg chemotherapy, emergency department visits, intensive
care unit admission) very near to death, and by an under-utilization of palliative care/hospice.
Reasons for this pattern of health service use are discussed, as are implications for the quality
of life of patients and their families.
Such overly aggressive treatment and under-use of palliative care services may be the
consequence of patients accessing palliative care too late or not at all (36). Gunn Grande,
in Chapter 7, presents empirical data on which patients access palliative care and which do
not, and indicates a number of barriers to access and a number of reasons why access is often
missed or happens rather late in the dying process.

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 14 APPLYING A PUBLIC HEALTH PERSPECTIVE TO END-OF-LIFE CARE

One major public health policy option through which undesired over-treatment at
the end of life can be avoided, access to palliative care stimulated, and a good quality of
end-of-life care safeguarded is through the stimulation of good communication between
professional caregivers, patients, and families. In Chapter 8 Linda Emanuel documents
some of the difficulties with communication at the end of life, identifies communication
issues of importance, and reviews some of the mechanisms involved in processing and
managing them. The chapter outlines a number of approaches for health policy-makers,
for professional caregivers, and for patients and families to consider which may optimize
communication near the end of life.
Public health end-of-life policy should always focus on care at the end of life and the
proper evaluation of existing and new care models is crucial. Part IV of the book describes
palliative care services developed in different care settings. Three chapters on, respec-
tively, palliative care in primary care, in nursing homes, and in hospitals, will address the
organization of services, different models emerging in different countries, benefits and
disadvantages of the models, and challenges in the organization of care; home, hospital, and
increasingly nursing homes will continue to be important settings of end-of-life care (41),
and the setting also influences the organizational characteristics and caregiving provided (42).
In Chapter 9 Lieve Van den Block focuses on palliative care delivered in the home, outlines
different models of primary palliative care organization, and in particular focuses on the
Gold Standard Framework used as a means of referral to palliative care in primary care in
the UK.
In Chapter 10 the challenges and needs in the development of new care models for long-
term care settings are addressed by Jenny van der Steen et al. These settings are likely to
become the most important places for end-of-life care in the near future. The specific
models developed in the USA and the Netherlands (with its unique and specific nursing
home physicians and a relatively high proportion of deaths occurring in care homes (43))
are discussed and serve as illustrations of how to address important challenges.
Chapter 11, by Amy Kelley, Daniel Fischberg, and Sean Morrison, discusses hospital-
based palliative care programmes. There are rapid advances in medical therapies and, partly
as a result, meeting the care needs of patients in palliative care is becoming increasingly
complex and technical. Palliative care (or palliative medicine) is increasingly becoming a
medical specialty and hospital-based palliative care programmes have, as a result, become
more important. The organization of palliative care services in hospitals, with a particular
focus on the USA, and its impact on patient outcomes and health care costs, is discussed, as
are the challenges hospital palliative care programmes may face in the future.
The pursuit of equity is a core feature of a new public health approach. The public
health focus on the pursuit of equity was particularly stimulated by the publication in
1980 of the Black Report in the UK and similar reports in other countries, which clearly
demonstrated that, despite universal access to health care and progressive social security
systems, in many European countries considerable differences in health and access to
health care persist between different social groups (44;45). Substantial social inequalities
in prevalence of and mortality from cancer, cardiovascular diseases, and other diseases
exist (46;47), and are also partly the result of social inequalities in secondary prevention

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 END-OF-LIFE CARE FOCI FROM A NEW PUBLIC HEALTH APPROACH (OUTLINE OF THE BOOK) 15

(i.e. screening and early detection) (47). Social inequalities also exist in the use of and
access to various treatments and health care services in general (48) as well as in the quality
of care received (47).
While social inequalities have been a major research issue within public health and
medicine in general (49), much less attention has been paid to social inequalities in the
way people die and are cared for at the end of life. A number of publications, however,
have drawn attention to the ‘disadvantaged dying’ (50;51) and the WHO has also demanded
better palliative care and better access to palliative care for all (4). To provide effective
end-of-life care for all, inequalities in the access of high-quality care need to be identified.
This book aims to make a contribution in that respect and tries to put social inequalities
in end-of-life care on the public health agenda. Several chapters address different social
groups and discuss how these groups are locked out of access to the best possible care
or circumstances at the end of life by virtue of their primary disease, their age, their intel-
lectual abilities, where they live, or some related form of discrimination, prejudice, or
social exclusion. Julia Addington-Hall and Katherine Hunt describe in Chapter 12 how
and why palliative care has predominantly been modelled on the relatively younger
cancer patient. Kevin Brazil in Chapter 13 and Karin Hexem and Chris Feudtner in
Chapter 14 describe the problems and disadvantages with respect to end-of-life care in
older people and in children. In Chapter 15 Irene Tuffrey-Wijne et al. discuss inequalities
at the end of life for patients with intellectual disabilities. Donna Wilson and Deepthi
Mohankumar address in Chapter 16 how people living in urban and rural/remote areas
differ in the manner in which they die and the type of care they access. In Chapter 17
Jonathan Koffman appraises the evidence, principally from the UK and the USA, to
determine in which ways socially excluded groups–the poor, black and minority ethnic
groups, asylum seekers and refugees, the homeless, those within the penal system, and
drug users—are disadvantaged in terms of accessing specialist palliative care and related
services. He also makes a number of suggestions for how to develop a socially inclusive
public health policy for the end of life.
As mentioned earlier, the end of life has some characteristics in common with other
public health priority issues, such as a major impact with respect to health consequences
or costs for families, and the potential for preventing the suffering associated with illness
(52). In order to impact effectively on the quality of end-of-life care and on equality of
access on a population level, effective public health policies must be developed. Part VI of
the book contains three chapters describing past policies with regard to end-of-life and
palliative care and future challenges in the development of an end-of-life public health
policy. Chapter 18 by Gomez-Battiste et al. considers the development of public health
policy with regard to the end of life on a supra-national level by explaining the principles,
aims, and elements of the WHO Palliative Care Public Health Programmes. Chapter 19
on sub-Saharan Africa by Julia Downing and Richard Harding serves as an illustration of
how policies have been set out in developing countries and what specific challenges these
regions face. In Chapter 20 David Clark illustrates how palliative care has been developed
internationally and explains how and why the progress in integrating palliative care within
global, regional and national policy-making remains limited.

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 16 APPLYING A PUBLIC HEALTH PERSPECTIVE TO END-OF-LIFE CARE

In the delivery of end-of-life care, from a public health perspective, families, and relatives
of dying patients must not be overlooked. Dying is essentially a family affair (53) as is the
quality of dying. When someone is diagnosed with a life-threatening illness this impacts
the whole family; the characteristics and circumstances of dying will also impact on the
quality of life of family members, and—essentially—a large part of the care for a dying person
(e.g. personal care, administration, but also things such as monitoring pain medication)
is provided by family carers (53). In Chapter 21, Allan Kellehear argues for the enhancement
and support of family care as a major focus of attention for a public health policy of the
end of life. This attention, so he argues, should go beyond direct service provision and
involve health promotion, community development and service partnerships.
This book, in describing these end-of-life care issues and themes in its different sections
and chapters, hopes to sketch an empiricism-based image of the end of life of populations,
to evaluate how ‘healthy’ the end of life of populations is, to suggest how the end of life
can be improved, and to map out the agenda of a new public health policy for the end of
life. A summary of these findings is presented in the concluding Chapter 22.

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