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Death literacy is defined as a set of knowledge and skills that make it possible to gain access to understand and act upon end-of-life and death care options. People, and communities, with high levels of death literacy have context-specific knowledge about the death system and the ability to put that knowledge into practice. Positioned within a public health framework, death literacy is considered an outcome of people’s experiences of and learnings about, death and dying. Death literacy also appears to be a resource that individuals and communities can use for their own benefit strengthening their capacity for future caring. This purpose of this paper is to explore the concept of death literacy using the evidence from a 6-year research project. We do this by examining how it corresponds to, and differs from, existing concepts and practices such as death education, health literacy, and community development. Our aim is to introduce new thinking into public health approaches to palliative care, offer practice development pathways in this arena and propose that death literacy offers a useful conceptual framework for both describing and understanding the outcomes of a public health approach to palliative care.
Developing death literacy
Kerrie Noonan1
2, Debbie Horsfall1, Rosemary Leonard3, John Rosenberg4
School of Social Sciences and Psychology, Penrith Kingswood Campus, Western Sydney University Locked
Bag 1797, Penrith NSW 2751,
Palliative Care, Liverpool Hospital, NSW, Australia,
Social Capital and
Sustainability, School of Social Sciences and Psychology, Penrith Kingswood Campus, Western Sydney
University Locked Bag 1797, Penrith NSW 2751,
Supportive and Palliative Care Team QUT, L7, Institute of
Health and Biomedical Innovation, 60 Musk Ave, Kelvin Grove, QLD 4059
Death literacy is defined as a set of knowledge and skills that make it possible to gain access to understand
and act upon end-of-life and death care options. People, and communities, with high levels of death literacy
have context-specific knowledge about the death system and the ability to put that knowledge into practice.
Positioned within a public health framework, death literacy is considered an outcome of peoples experiences
of and learnings about, death and dying. Death literacy also appears to be a resource that individuals and
communities can use for their own benefit strengthening their capacity for future caring. This purpose of
this paper is to explore the concept of death literacy using the evidence from a 6-year research project.
We do this by examining how it corresponds to, and differs from, existing concepts and practices such as
death education, health literacy, and community development. Our aim is to introduce new thinking into
public health approaches to palliative care, offer practice development pathways in this arena and
propose that death literacy offers a useful conceptual framework for both describing and understanding
the outcomes of a public health approach to palliative care.
Keywords: Death literacy, Public health and palliative care, Palliative care, Carers, Death education, Community development, Community capacity building
We had a great grandfather (who died) before our
grandmother died and I was emotional about
that and it was kind of the same but when I
came into this it was a little bit easier[]It
wasnt scary[][focus group member, aged 13]
Developing public health approaches to palliative care
is a growing field of practice and scholarship.
Informed by the Ottawa Charter for Health
such approaches aim to promote health
and wellbeing, and to provide preventative health ser-
Although they remain a marginal discourse in
palliative care, public health approaches demonstrate
a paradigm shift in palliative care policy and
This shift has triggered a new wave of practice
initiatives promoting end-of-life activities and models
of care that are delivered within a community develop-
ment framework, promoting personal, and commu-
nity empowerment.
A public health approach to
end-of-life care is a significant departure from the
more dominant approaches that rely on resource-
intensive service delivery models of care. Further, in
Kellehears view, community development and com-
munity capacity building can enhance the ability for
knowledge about end-of-life care to be developed
and sustained within the community. This then
enables communities to utilize support systems,
problem solve, make decisions, and communicate
and act more effectively when someone in their com-
munity is dying.
Death literacy provides a framework
for delivering this approach.
In the UK, the term Compassionate
Communitieshas become synonymous with public
health and palliative care initiatives and in 2013, a
scoping study
described these initiatives as diverse
and innovative, but noted the work and the out-
comes of such initiatives were difficult to define.
This is due in part to a lack of conceptual clarity
regarding public health and palliative care.
In an
attempt to remedy this, recent efforts have been
made to provide definitional clarity about two key
concepts: community development and community
Community engagement and community develop-
ment are considered distinct but overlapping pro-
cesses, yet health promotion initiatives often use
these terms interchangeably.
Community engage-
ment in end-of-life care has been defined by Sallnow
and Paul as an umbrella term for a process which
enables communities and services to work together
to understand, build capacity and address issues to
Correspondence to: Kerrie Noonan, Liverpool Hospital, NSW, Australia.
DOI 10.1080/09699260.2015.1103498 Progress in Palliative Care 2016 VOL. 0NO. 01
improve their experience of end-of-life and bereave-
ment and their related wellbeing.
activities exist on a spectrum ranging from more
passive strategies such as informing and consulting,
to increasing levels of participation and social
change such as co-production, collaboration and
Community development is opera-
tionalized through community engagement and par-
ticipation with the end point being some form of
individual and collective change. Strategies invol-
ving co-production, collaboration, and empower-
ment are consistent with community development
and the new and critical approaches to public
Death education
Death education has a role in the development of
death-related knowledge and promotes awareness
about the about death system. Kastenbaum posited
that all societies have a death system, which organizes
how its citizens think, behave, and structure their death
experiences. He defines the death system as a socio-
physical network by which we mediate and express
our relationship to mortality.
Death education
about the human and emotional aspects of death is
considered a key component of the public health and
palliative care approach. However unlike the didactic
approach of traditional death education, the new
public health approach to palliative care holds that
death education it best delivered within the context
of community development in equal partnership with
community members.
Within this definition, com-
munity development initiatives are focussed on
process and interpersonal relationships. It is more
than informing or consulting with community
members; it is about creating sustainable collabor-
ations and partnerships.
Death literacy
We define death literacy as a set of knowledge and
skills that make it possible to gain access to, under-
stand, and act upon end-of-life and death care
options. People, and communities, with high levels of
death literacy have context-specific knowledge about
the death system and the ability to put that knowledge
into practice. We have called death literacy a form of
practice wisdom,because within the context of
researching home death, we found that carers and
their networks were actively engaged in a critical learn-
ing process to develop the knowledge and skills
required to care for a person to die at home.
Positioned within a new public health framework,
death literacy is considered an outcome of peoples
experiences of, and learnings about, death and dying.
Death literacy also appears to be a resource that indi-
viduals and communities can use for their own benefit
strengthening their capacity for future caring. As a
result, people with death literacy have capacity
enabling them to care at end of life. This care
extends beyond personal capabilities to using knowl-
edge about the death care system to both enable and
improve access to critical supports needed to care at
Advances in death literacy research
Despite the growing interest in public health
approaches to palliative care, there is limited research
demonstrating the impact of these initiatives.
particular, we are still learning how end-of-life knowl-
edge and information is transmitted through commu-
nity development programmes and how these
initiatives contribute to transforming current, service-
dominant approaches to health care.
In 2009, we began a research project that sought to
develop greater understanding of how communities
come together to care
and we invited carers and
their networks to come together to talk about the
experience of caring for someone who was dying at
home. At the conclusion of 6 years of research, 308
people have participated, providing in-depth personal
and collective narratives about the function and
effects of informal caring networks and how they
interface, or not, with formal service providers.
A key finding of this ongoing research has been a
deeper understanding of how caregivers care at home
when someone is dying. We have noted that despite
the medical model, carers have the ability to do it
their wayand step outside of institutionalized dying.
With no prior knowledge or special set of skills, they
showed an ability to care for a person at the end of
their life at home. Carers demonstrated they could
seek out information and learn the complex physical
and emotional end-of-life caring skills.
The features of death literacy
We had over a period of three years, three fathers
dying and[]each time the community learnt
about what they could do to help (Service
Provider Focus Group).
The act of end-of-life caregiving provides a deeply per-
sonal connection to death and dying and is a catalyst
to developing death literacy. In keeping with new
public health approaches death literacy draws on a
community development framework which suggests
that if a community is to develop its capacity to
support the caring of those at EOL, it needs knowl-
edge and experience, a sense of empowerment and
supportive social structures.
These aspects are reflected in four features of death
literacy knowledge, skills, experiential learning, and
social action.
Noonan et al. Developing death literacy
Progress in Palliative Care 2016 VOL. 0NO. 02
Ive grown a lot or learned a lot all the stuff I
know now that I had no idea about. Makes a
really big difference. (Carer Focus Group 8)
Institutional death has risen since the middle of last
century, changing our everyday lived experiences
with dying and death.
We have found that
people who provide care, however, rediscover this
knowledge. When planning for a home death, carers
reported developing the following knowledge:
Increased understanding of palliative care/medical/
allied health services available to people who are
dying and their families.
An understanding of medicines and equipment avail-
able to support care in the home and the development
of the necessary skills to administer and use these.
Public health policies related to death at home (death
certificates, having a dead body at home).
End-of-life planning processes, including wills and
In the context of caring for a dying person at home,
carers developed both practical and interpersonal
skills. These included:
Providing personal care to a dying person.
Connecting to the person after death (e.g. having a
vigil, dressing the body).
Actively engaging in body disposal scattering of
ashes and in some cases home burial.
Negotiating with professional services about place of
death and care options.
Having conversations with family friends and health
professionals about end of life, dying and death.
Carers developed skills in communicating about end
of life. This includes talking about death, discussing
dying and illness, and planning for death and dying;
in addition, they negotiated with services about place
of care and about place of death. We noted that
many carers needed to display a high level of assertive-
ness and confidence toward health professionals to
achieve outcomes that were acceptable to them.
In relation to death literacy, carers became adept at
asking for and negotiating both professional support
and the informal support of their family and friends.
In addition, carers developed their own criteria for
involving health professionals in decision-making.
For some carers, this meant resisting the systemin
order to continue to care at home. Practical and inter-
personal skills are an important feature of death lit-
eracy, because they identify end of life options and
thus enable choice.
Experiential learning
You cant do things for somebody and then
expect them to know[]Theyve got to be able
to do it. If theyre hands on its a different
kettle of fish (Service Provider Focus Group)
The concept of death literacy emerged from a theme
describing the transformative effect of participating
in a network of friends and family caring for
someone dying at home.
Participation in end-of-life
care was the catalyst for friends and family learning
about the process of dying and about death care prac-
tices such as caring for the dead body at home. Caring
at home, where carers are able to be hands on with the
dying person and the dead body, that provides an
embodied learning experience invites reflection and
meaning making. We heard many stories about how
the behaviours, attitudes and beliefs of carers and
their networks were transformed by the experience of
caring, including:
Seeing dying as a part of life;
Normalizing the experience of end of life caring at
home and home death;
A deeper appreciation for the role of friends, neigh-
bours and family when caring at home;
A deeper understanding of how many people can be
involved in caring for someone at home.
This learning was enhanced by being able to draw
upon the skills of other network members and, when
needed, health professionals. The key here was that
people could access information on their own terms
and that they could trust the network to provide the
support and information they needed during the
caring journey.
I came into it not knowing you could care for
somebody at home but she was dying and not
dying fast enough for the hospital system and
they kept sending her home and taking her
back in and then sending her home again
because they needed the bed. And it was very dis-
tressing and, without any knowledge, I decided
that we could do better and brought her
home[]I managed to care for Mum until she
died at home which was a great experience for
everybody: her family and me, and it was our
first experience but a great one. (Carer Focus
Group 3)
These benefits were seen to be collective and cumulat-
ive; that is, the community grew and developed in its
capacity to be compassionate as people experienced
informal caring. Carers actively sought out knowledge
from their support networks, including technical
knowledge about medication, nutrition, self-care and
the dying process.
Caring networks helped with the multiple tasks of
caring as we have seen; those with prior knowledge
shared their knowledge: you kind of gleaned bits from
everyone who came in youd learn something else
about what could be done (FG 8), and carers quickly
Noonan et al. Developing death literacy
Progress in Palliative Care 2016 VOL. 0NO. 03
learnt who to ask for what sort of help and infor-
mation. The learning that took place was on the
job,experiential, requiring the active support of
others in the caring network, and while certainly chal-
lenging, people reported an overwhelming sense of
achievement and satisfaction:
Not to be afraid of being on the journey with
people you love. The physical things that
happen arent pretty but you can get through it
and come out with more memories, more joy,
more shared times, and those are precious.
Benefits of caring at home. You need the
support of others to make it happen. (Carer
Focus Group 2)
Social action
I talked to everybody[]I tell everyone because I
just had no idea that thats what went on at
home[]Id never seen it before. (Carer Focus
Group 3)
People and communities with high levels of death
literacy have context-specific knowledge about the
death system and the ability to put that knowledge
into practice. Once this happens death literacy can
become a resource that people use for the benefit
of themselves, their networks and their commu-
nities. In this sense, caring for a dying individual
can be a catalyst, or opportunity, for people to
develop their literacy about death and dying. In
Individuals share knowledge and skills with other
social networks.
We know what to do.Caring networks were more
easily mobilized in the future when care is required.
We found evidence that people who had cared
before recognized they were better equipped for end-
of-life care and they felt they were able to re-engage
with social networks if and when required.
Individuals are primed for taking action about their
own end-of-life plan.
We have previously referred to inner and outer
members of the caring network.
The inner network
are family and friends involved in the intimate care
of the dying person and their carer, while the outer
network tends to be a larger and more diverse group
of supporters. The outer network often supports the
inner network. Evidence from our recent research
suggests that death literacy develops across the
network of carers including those in the outer
network. The outer network of informal carers is an
important feature in the transmission of knowledge
about death and dying into the community. This
group of informal carers and supporters is rarely men-
tioned in the literature. However, we also found evi-
dence of people in the outer network observing and
learning from the inner network. A potent example
was provided by a pharmacy manager who was ident-
ified by a carer as a member of the outer care network.
She reported that being part of a support network con-
tributed to her ability to care for her own mother,
enabling her to die at home.
All of this had a cumulative effect where caring net-
works are transformed through relationships, knowl-
edge sharing and the feeling that people were
supporting each other in something extraordinary.
The informal caring networks and relationships under-
went transformation as a person was supported to die at
home. This transformation occurred as social relations
and networks were mobilized to support and help with
caregiving and as people developed their literacy about
death and dying. Mobilizing, using and developing
caring, or compassionate, informal networks through
active engagement in tasks promoted a model of
change which moves away from the more traditional
health promotion approach which is to educate the
communityso that they can participate. Rather, this
model of change supports networks of people to par-
ticipate in the day-to-day tasks of caring for people.
Death literacy is an outcome of peoples engaged
experiences of, and learning about, death and dying.
People, and communities, with high levels of death lit-
eracy have context-specific knowledge and the ability
to put that knowledge into practice. Once this
happens death literacy becomes a resource that
people and communities can use for their own benefit.
The features of death literacy, as outlined here, are
informed by critical health literacy, in particular
notion that health literacy is a repacka-
ging of the relationship between health education
and empowerment. Health literacy has been described
as having three levels: basic/functional literacy, com-
municative/interactive literacy, and critical literacy.
The critical health literacy model reinforces the need
for genuine community development and engagement
Within the context of a caring network,
becoming death literate did not occur via traditional
modes of health education alone, instead the caring
role was the main catalyst to learning. This is distinctly
at odds with the current trend toward carer training
and formal death education programmes for people
facing end of life. Because death education pro-
grammes are typically not designed to mobilize net-
works or create social action they may actually
promote compliance with the dominant medical
approach by reinforcing the primacy of professional
knowledge. As such these traditional models of edu-
cation rarely recognize, mobilize or develop the exist-
ing knowledge within communities.
Noonan et al. Developing death literacy
Progress in Palliative Care 2016 VOL. 0NO. 04
Caring for a dying person at home presents a unique
community development opportunity. Home death is
more than place.While clearly it is important to the
person dying and the carer, death at home is a key
place to experience learning about dying and death.
Death at home is a community event where each
person is valued and has a role to play. Further, even in
the outer network there is opportunity to face fear and
other negative emotions associated with death and to be
rewarded with the positive ones of stronger personal con-
nections, and the satisfaction of doing something impor-
tant. In this sense, home death presents a unique learning
opportunity with a distinct set of social actions and
experiences that empower all participants.
While further research is required, our view is that the
concept of death literacyappears to capture, in an
accessible and useful way, the social change outcomes
of public health and palliative care.
New public health initiatives aim to create education
activities and learning experiences that normalize the
end of life.
This learning process is described as
death education. We suggest that the term death lit-
eracycan usefully be used to describe the knowledge
and skills an individual has about the death system. It
is the result of engaged death education. We have
found evidence that the act of caring at home for a
dying person provides a learning experience that devel-
ops knowledge and skills about the death system. Home
caring at end of life, can provide a deeper understand-
ing of how a society does deathand ultimately contrib-
ute to changing attitudes and social actions.
Disclaimer statements
Contributors K.N. contributed substantially to and led
the writing and reviewing of article. All authors con-
tributed to the development of the concepts and
ideas expressed in the article. D.H., R.L., and J.R.
supported the writing and reviewing of the article.
Funding This work was supported by Australian
Research Council [LP110201090].
Conflicts of interest There are no conflicts of interest to
Ethics approval The study received ethics approval
from the Western Sydney University, the Australian
Catholic University, Calvary Health Care ACT
and CSIRO before commencement.
Kerrie Noonan
Debbie Horsfall
Rosemary Leonard
John Rosenberg
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... It is known that talking about death, normalizing death as a part of life, and supporting preparation for death are important matters both for individuals and societies in general (Tieaman et al., 2018). In this context, researchers have laid the groundwork for the development of the concept of death literacy concerning how people support each other in caring for a dying person at home and how it can guide them in this regard (Noonan et al., , 2016. The idea of death literacy was developed from a study conducted by the "End-of-Life Care" research team at Western Sydney University Leonard et al., 2021). ...
... Death literacy is defined as a set of knowledge and skills that make it possible to gain access to, understand, and act upon end-of-life and death care options (Leonard et al., 2021;Noonan et al., 2015Noonan et al., , 2016. Death literacy is a novel concept that, at the same time, refers to an individual's knowledge and understanding gained from past experiences (Leonard et al., 2021). ...
... It is believed that care supports, which in general bring a burden to the country's economy, can be transformative for both the caregiver and care network (e.g. family, neighbours, friend groups, service providers) (Noonan et al., , 2016. The concept of death literacy can also contribute to well-being in the end-of-life period (Leonard et al., 2021). ...
Full-text available
Death literacy is defined as a set of knowledge and skills that make it possible to gain access to, understand, and act upon end-of-life and death care options. This study was conducted to test the validity and reliability of the 29-item original version of the Death Literacy Index (DLI) in Turkish society. The scale was applied on a sample of 436 Turkish adults determined using the snowball sampling method. Explanatory and confirmatory factor analyses were performed. The scale consisted of 6 subscales. The test-retest analysis of this study showed a strong and highly significant positive correlation between overall DLI (.98) and its subscales (.73–.98). The total Cronbach’s alpha reliability coefficient of DLI was found to be .90. It was observed that the Turkish version of DLI was a valid and reliable tool and suitable for use in Turkish society.
... General EOL competence, beyond the purview of care professionals only, has recently been conceptualized as death literacy, that is, a multidimensional construct encompassing knowledge and skills needed to access, understand, and act on EOL care options (Leonard et al. 2021) and preparedness for engaging with EOL-related issues (Hayes et al. 2020). The concept of death literacy was developed in Australia from a research by Horsfall et al. (2012Horsfall et al. ( , 2015 and represents how experiences of caring for and supporting a dying person at home had transformative effects on awareness, knowledge, and skills in relation to dying and death and attitudes to engaging in EOL care provision (Noonan et al. 2016). Dimensions of death literacy are said to build on the construct of health literacy (Noonan et al. 2016). ...
... The concept of death literacy was developed in Australia from a research by Horsfall et al. (2012Horsfall et al. ( , 2015 and represents how experiences of caring for and supporting a dying person at home had transformative effects on awareness, knowledge, and skills in relation to dying and death and attitudes to engaging in EOL care provision (Noonan et al. 2016). Dimensions of death literacy are said to build on the construct of health literacy (Noonan et al. 2016). There are several motivations behind efforts to build death literacy. ...
Full-text available
Objectives. Death literacy is a recent conceptualization representing both individual and community competence, for example, a set of knowledge and skills for engaging in end-of-life related situations. Little is yet known about which factors are associated with death literacy. A cross-sectional survey using the Swedish version of the Death Literacy Index, the DLI-S, was therefore conducted to explore associations between death literacy and socio-demographic, health, and experience variables. Methods. A quota sample of 503 adults (mean age 49.95 ± 17.92), recruited from an online Swedish survey panel, completed a survey comprising the DLI-S and background questions. Results. A hierarchical regression model with 3 blocks explained 40.5% of the variance in death literacy, F(22, 477) = 14.75. The socio-demographic factors age, gender, education, widowhood, and religious/spiritual belief accounted for 13.7% of the variance. Adding professional care factors contributed to an additional 15.8% of variance, with working in health care being significantly associated with death literacy. Including experiential factors explained another 11.0% of the variance, of which experiences of caring for and supporting dying and grieving people, both in a work, volunteer, or personal context, were positively associated with death literacy. Significance of results. This study contributes a tentative explanatory model of the influence of different factors on death literacy, outlining both direct and indirect associations. Our findings also support the hypothesized experiential basis for death literacy development in the Swedish context. The moderate degree of overall variance explained suggests there may be additional factors to consider to better understand the death literacy construct and how its development may be supported.
... 39,48 According to some studies, discussing dying issues, expressing feelings of preparation for death, and participating in funeral planning were key actions for building "death awareness", and this awareness is capable of encouraging people to plan their future, bringing death back to the public as an "everybody's issue". 25,34,40,44,49 Thus, giving space to the patient to express himself in the face of the end of life makes it possible for health professionals to recognize the demands of the patients and, thus, offer quality care that allows seeing the individual as a whole and not just clinically. 34 It is also noticed that talking and thinking about dying and death are issues that terrify individuals due to how they understand the finitude process. ...
... In addition, discussing death clarifies and prepares the patient for finitude, reducing suffering and maintaining autonomy throughout the end-of-life trajectory, involving decision-making, the process of acceptance, and preparation for death. [49][50] The acceptance phase is considered one of the stages experienced by the patient, in which the person gradually accepts the current reality and begins to understand the limits arising from the illness process more consciously. In this way, the patient maintains a sense of control over the remaining time, completes significant objectives, solves important problems, and maintains physical independence and functionality during death, respecting wills, wishes, and autonomy. ...
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RESUMO Objetivo: Identificar ações de autocuidado realizadas por adultos em cuidados paliativos. Método: Revisão integrativa, realizada nas bases de dados: MEDLINE, CINAHL, SCOPUS, Web of Science e LILACS, por meio do cruzamento dos descritores “cuidados paliativos”, “cuidados paliativos na terminalidade da vida”, “atitude frente à saúde”, “cuidado terminal”, “morte”, “autocontrole” e “autocuidado” e as respectivas traduções em inglês. O recorte temporal usado nas buscas foi entre 2017 e 2021, sendo a amostra final composta por 15 artigos. Resultados: Observou a prevalência de estudos com nível VI de evidência e rigor metodológico nível A. Encontraram-se 21 ações de autocuidado em todos os aspectos multidimensionais (físico, psicológico, social e espiritual). Conclusão: As diretivas antecipadas de vontade e a expressão do sentimento de esperança foram as mais predominantes. Essas, quando realizadas, foram capazes de garantir a autonomia do paciente e, consequentemente, a dignidade.
... Death literacy is defined as 'a set of knowledge and skills that make it possible to gain access to understand and act upon end-oflife and death care options'. 72 EMS also have the unique opportunity to engage patients and their families and carers in palliative care health promotion, and sign-post locally provided health and community supports. 73 Investing in the research and implementation of alternate referral pathways for EMS caring for palliative patients in the community must also be prioritised. ...
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Emergency medical services (EMS) are a unique workforce providing 24/7 emergency care across high-income countries (HICs) and low- and middle-income countries (LMICs). Although traditionally perceived as first responders to traumatic and medical emergencies, EMS scope of practice has evolved to respond to the changing needs of communities, including a growing demand for community-based palliative care. Public health provides a useful framework to conceptualise palliative and end-of-life care in communitybased settings. However, countries lack public policy frameworks recognising the role EMS can play in initiating palliative approaches in the community, facilitating goals of care at end of life and transporting patients to preferred care settings. This article aims to explore the potential role of EMS in a public health palliative care approach in a critical discussion essay format by (1) discussing the utility of EMS within a public health palliative care approach, (2) identifying the current barriers preventing public health approaches to EMS palliative care provision and (3) outlining a way forward through priorities for future research, policy, education and practice. EMS facilitate equitable access, early provision, expert care and efficacious integration of community-based palliative care. However, numerous structural, cultural and practice barriers exist, appearing ubiquitous across both HICs and LMICs. A Public Health Palliative Care approach to EMS Framework highlights the opportunity for EMS to work as a linking asset to build capacity and capability to support palliative care in place; connect patients to health and community supports; integrate alternative pathways by engaging multidisciplinary teams of care; and reduce avoidable hospital admissions by facilitating home-based deaths. This article articulates a public health approach to EMS palliative and end-of-life care provision and offers a preliminary framework to illustrate the components of a potential implementation and policy strategy.
... 1 A growing movement insists that serious illness, death, dying, and loss need to be recognized and reframed as the social experiences they essentially are. 2,3 This includes moving beyond the dominant medical-individualistic approach that focuses on patients or clients defined in terms of health problems or biopsychosocial risk toward a salutogenic approach around serious illness, death, dying, and loss: an approach that aims to normalize and promote healthy attitudes toward these experiences through awareness-raising, 4 increasing death literacy, 5,6 and developing social capital of entire communities. 7,8 This approach is called a "Compassionate Communities" model. ...
Background Compassionate Communities have been put forward as a new model for community-based palliative care to positively impact the health and wellbeing of those experiencing challenges of serious illness, death, dying, and loss. Despite the growing international movement to develop these public health initiatives to end-of-life care, only a handful of initiatives have undergone some form of evaluation. Aim To provide guidance on designing evaluation research by identifying theoretical frameworks to understand the development, implementation, and underlying mechanisms of Compassionate Communities. Methods To identify suitable theoretical frameworks for the study of Compassionate Communities, we applied two steps. The first step examined the characteristics of Compassionate Communities and translated them into assessment criteria for the selection of theoretical frameworks. The second step consisted of applying the identified assessment criteria to a list of widely used and highly cited theoretical frameworks. Results Three well-established theoretical frameworks were identified as being most suitable to study the development, implementation, and underlying mechanisms of Compassionate Communities: The Consolidated Framework for Implementation Research (CFIR), the integrated-Promoting Action on Research Implementation in Health Services framework (i-PARIHS), and the Extended Normalization Process Theory (ENPT). Conclusions The article supports and encourages the use of theoretical frameworks to evaluate the complex processes behind public health palliative care initiatives. The complementary use of two determinant frameworks and an implementation theory provides theoretical grounding to gain rich insights into the emergent and shifting interplays between agency, social processes, and contextual factors that shape the development and implementation of Compassionate Communities.
In the last two decades, health promotion strategies have gained significant attention in end-of-life care contexts—engendering greater focus on community and informal care in policy and healthcare spheres in liberal welfare-states. The emergence of health-promoting palliative care (HPPC) in the Nordic context presents a unique challenge to the abiding social contract of care which emphasizes the de-familialisation of child- and long-term care. This study reflects upon the implementation of one HPPC inspired educational initiative, called Last Aid, into a Swedish context and its influence on social relations of care within the welfare state model. Participants articulated Last Aid as a tool which helped them reclaim agency amidst the inertia of competing norms and expectations of informal caregiving. These findings indicate that the implementation of Last Aid into the Swedish context is characterized by a tension between norms of institutional caregiving versus community caregiving, representing a case of sociological ambivalence. Furthermore, the data shows that women disproportionately perform informal caregiving for seriously ill significant others in an institutional context where state care services are diminishing. Employing a feminist analytical approach, these results, and the HPPC perspective, are discussed in light of trends towards welfare retrenchment in the Nordic countries.
Advance Care Planning (ACP) is a process supporting an individual at any state of health in discussing his/her life goals, care preferences and preferred place of death with his/her family members and healthcare professionals. This chapter will examine ACP in Singapore. It will examine benefits of ACP and barriers to ACP practice and suggest ways to increase the acceptance and implementation of ACP in the country. The implementation of ACP can achieve patient autonomy, avoid unwarranted suffering and enable patients to die with dignity. Death aversion, family dynamics, collusion, the lack of health literacy, treating physicians’ refusal to endorse the ACP document are barriers to the acceptance, discussion and implementation of ACP. It is important for the government to enhance public acceptance of ACP and facilitate the implementation of ACP through normalizing conversations about death and dying, reinterpreting the concept of filial piety to develop culturally appropriate campaigns for ACP, upstreaming the ACP discussion into usual health promotion activities, offering life education to students, adopting a multipronged approach to tackle collusion and adopting an interprofessional approach to ACP.KeywordsAdvance care planningACP coordinatorCollusionEnd-of-lifeFilial pietySelf-determination
Palliative care volunteers play a crucial role in supporting people who are terminally ill. Previous studies have indicated that a personal experience of grief and bereavement is a motivating factor for wanting to be a palliative care volunteer. Using reflexive thematic analysis as a methodological approach, the aim of this qualitative study was to explore the lived experience of grief and bereavement in a group of 11 Australian volunteers in adult palliative care settings. Three themes were identified from the dataset: witnessing and finding community; approaching death and dying with curiosity and openness; living well through death awareness. Importantly, death awareness was felt by volunteers to be an essential part of sense making around their past grief and a source of guidance for appreciating life. The findings of this study contribute to a deeper understanding of volunteering motivations, end-of-life care, and the changing nature of grief as a lived experience.
Background: In Taiwan, the National Health Insurance Administration initiated the integrated home-based medical care (iHBMC) program in 2016 to improve accessibility to health care for homebound patients. This study aimed to describe the characteristics of older people receiving iHBMC services in Taiwan as well as the relationship between patient characteristics and survival. Methods: All older adults registered in the iHBMC application dataset were enrolled between March 1, 2016, and December 31, 2018. Data on social determinants of health (income level, residential area), functional status, consciousness status, nasogastric tube or urinary catheter placement, and major diseases were retrieved from the database. Data on the frequency of multidisciplinary team members' visits were collected. The survival rate was investigated using the Kaplan-Meier method. A Cox proportional hazards univariate regression was conducted to analyze factors influencing survival rates. Results: A total of 41,079 patients aged ≥65 years were enrolled in iHBMC services. The results showed that the one-year survival rates were 72.1%, 67.4%, and 14.7% in the home-based primary care (HBPC), home-based primary care plus (HBPC-Plus), and home-based palliative care (HBPalC), respectively. Nearly two-thirds of the HBPC-Plus patients underwent nasogastric tube placement. The Cox proportional hazards univariate regression analysis showed that a low urbanization level, a low income level, a low functional status, and an impaired consciousness status were significant predictors of poor survival after adjustment for confounding variables. Conclusions: Older adults receiving iHBMC services had a high mortality rate. The high rate of feeding tube use indicated that education and support for both clinical practitioners and family caregivers regarding careful hand feeding are warranted. There was a relationship between low income levels and poor survival in rural areas. Further research on whether social care could impact prognosis should be considered.
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Public awareness work regarding palliative and end-of-life care is increasingly promoted within national strategies for palliative care. Different approaches to undertaking this work are being used, often based upon broader educational principles, but little is known about how to undertake such initiatives in a way that equally engages both the health and social care sector and the local communities. An asset-based community engagement approach has been developed that facilitates community-led awareness initiatives concerning end-of-life conversations and care by identifying and connecting existing skills and expertise. (1) To describe the processes and features of an asset-based community engagement approach that facilitates community-led awareness initiatives with a focus on end-of-life conversations and care; and (2) to identify key community-identified priorities for sustainable community engagement processes. An asset-based model of community engagement specific to end-of-life issues using a four-step process is described (getting started, coming together, action planning and implementation). The use of this approach, in two regional community engagement programmes, based across rural and urban communities in the northwest of England, is described. The assets identified in the facilitated community engagement process encompassed people's talents and skills, community groups and networks, government and non-government agencies, physical and economic assets and community values and stories. Five priority areas were addressed to ensure active community engagement work: information, outreach, education, leadership and sustainability. A facilitated, asset-based approach of community engagement for end-of-life conversations and care can catalyse community-led awareness initiatives. This occurs through the involvement of community and local health and social care organisations as co-creators of this change across multiple sectors in a sustainable way. This approach provides a framework for other communities seeking to engage with public awareness in end-of-life issues.
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In this article we discuss the ‘bringing our dying home’ research project which contributes to an understanding of caring at end of life (EOL) as potentially increasing social networks and community capacity. The main aims of the research were to illuminate the quality and effect of informal caring networks that are established, or strengthened, as a result of caring for a person dying at home and to understand how being involved in such a caring network impacts family, friends and the wider community. Using photo voice and network mapping in focus groups and interviews we collected 94 visual and oral narratives of caring and support. We found: people who engaged in acts of resistance to the Western expert-based approach to EOL care; that carers successfully mobilised and negotiated complex webs of relationships; and, that embodied learning about caring contributed to the development of social capital and compassionate communities.
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Introduction: Informal caring networks contribute significantly to end-of-life (EOL) care in the community. However, to ensure that these networks are sustainable, and unpaid carers are not exploited, primary carers need permission and practical assistance to gather networks together and negotiate the help they need. Our aim in this study was to develop an understanding of how formal and informal carers work together when care is being provided in a dying person’s home. We were particularly interested in formal providers’ perceptions and knowledge of informal networks of care and in identifying barriers to the networks working together. Methods: Qualitative methods, informed by an interpretive approach, were used. In February–July 2012, 10 focus groups were conducted in urban, regional, and rural Australia comprising 88 participants. Findings: Our findings show that formal providers are aware, and supportive, of the vital role informal networks play in the care of the dying at home. A number of barriers to formal and informal networks working together more effectively were identified. In particular, we found that the Australian policy of health-promoting palliative is not substantially translating to practice. Conclusion: Combinations of formal and informal caring networks are essential to support people and their primary carers. Formal service providers do little to establish, support, or maintain the informal networks although there is much goodwill and scope for them to do so. Further re-orientation towards a healthpromoting palliative care and community capacity building approach is suggested. Keywords: Care networks, Health-promoting palliative care, Home death
Once it was difficult to see end of life care beyond conventional medical intervention, but hospice and palliative care introduced a more holistic approach, providing quality of life for the dying and their families. This ground-breaking work takes end-of-life care beyond these palliative boundaries, describing a public health vision that involves whole communities adopting a compassionate approach to dying, death and loss. Written by a leading academic in the field of death and bereavement, this text outlines the historical, political and conceptual basis of compassionate cities, providing a community development model for end-of-life care. Moving away from infection control and health promotion Allan Kellehear invites us to think of a third wave movement of public health, joining empathy, equality and action together as practical policies. Presenting a radical new perspective to death, ageing and public health, Compassionate Cities is essential reading for academics and professionals alike.
Over the past decade, public health approaches to end-of-life care have received increased literature, policy and practice focus. These developments recognise the significance of community engagement activities and their contribution to end-of-life care. In the United Kingdom, community engagement is a priority for the majority of hospices. Nevertheless, there exists some ambiguity about the range of different practice that exists under this heading, the principles underpinning it and the outcomes for the work. Conceptual clarity is an essential next step in the development of this emergent field. The aim of this paper is to present a definition and a conceptual model of community engagement for end-of-life care services and the communities they serve. A spectrum of community engagement in end of life care is presented, derived from models in the general community engagement literature. Types of engagement extend on a continuum from informing through consulting, co-producing, collaborating to empowerment, with the later levels capable of achieving more penetrating health and social change. The factors that affect the type and nature of engagement are represented in boxes at either end, demonstrating that it is not the influence of a single factor, but the overall balance of factors that determines the quality and outcomes of the engagement work. This spectrum is designed to aid professional services and the communities they serve to embark on community engagement projects with an open awareness of the requirements and key components underpinning their success and a shared understanding and language.
Although the development and spread of health-promoting palliative care is well known in Australia, as a form of community support facilitated by palliative care services, little is known about its actual practice outside that country. This article summarizes the main rationale and concepts of health-promoting palliative care, lists some of the key policy and academic writing on the subject, and provides one example of its practice. Health-promoting palliative care translates hospice ideals of ‘whole person care’ into broader public health language and practices related to prevention, harm reduction, support, education, and community action. How these ideas express themselves in partnerships between palliative care and the wider community to enhance the quality of life of individuals and communities living with dying, death and loss is described from an Australian example.