Developing death literacy

Abstract

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.

Full text

Developing death literacy
Kerrie Noonan1
,
2, Debbie Horsfall1, Rosemary Leonard3, John Rosenberg4
1
School of Social Sciences and Psychology, Penrith Kingswood Campus, Western Sydney University Locked
Bag 1797, Penrith NSW 2751,
2
Palliative Care, Liverpool Hospital, NSW, Australia,
3
Social Capital and
Sustainability, School of Social Sciences and Psychology, Penrith Kingswood Campus, Western Sydney
University Locked Bag 1797, Penrith NSW 2751,
4
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 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.
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
wasn’t scary[…][focus group member, aged 13]
Developing public health approaches to palliative care
is a growing field of practice and scholarship.
1,2
Informed by the Ottawa Charter for Health
Promotion
3
such approaches aim to promote health
and wellbeing, and to provide preventative health ser-
vices.
4
Although they remain a marginal discourse in
palliative care, public health approaches demonstrate
a paradigm shift in palliative care policy and
practice.
1,5,6
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.
2,7
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
Kellehear’s 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.
8
Death literacy provides a framework
for delivering this approach.
In the UK, the term ‘Compassionate
Communities’has become synonymous with public
health and palliative care initiatives and in 2013, a
scoping study
7
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.
9
In an
attempt to remedy this, recent efforts have been
made to provide definitional clarity about two key
concepts: community development and community
engagement.
10,11
Community engagement and community develop-
ment are considered distinct but overlapping pro-
cesses, yet health promotion initiatives often use
these terms interchangeably.
7,11
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.
Email: kerrie.noonan@sswahs.nsw.gov.au
©2016Taylor&Francis
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.’
11
Engagement
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
empowerment.
11
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
health.
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.’
12
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.
13
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.
10
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.
14
Positioned within a new 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 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
home.
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.
6,15
In
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
14,16
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 way’and 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

Knowledge
I’ve 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.
17,18
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
funerals.
Skills
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 ‘system’in
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 can’t do things for somebody and then
expect them to know[…]They’ve got to be able
to do it. If they’re hands on it’s 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.
14
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 –you’d 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 aren’t 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 that’s what went on at
home[…]I’d 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
particular:
•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.
16
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
19
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
community’so 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.
Discussion
Death literacy is an outcome of people’s 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
Lavarack’s
20
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
practices.
11,21
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.
22
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.
Conclusion
While further research is required, our view is that the
concept of ‘death literacy’appears to capture, in an
accessible and useful way, the social change outcomes
of public health and palliative care.
7,23–25
New public health initiatives aim to create education
activities and learning experiences that normalize the
end of life.
2
This learning process is described as
death education. We suggest that the term ‘death lit-
eracy’can 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 death’and 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
declare.
Ethics approval The study received ethics approval
from the Western Sydney University, the Australian
Catholic University, Calvary Health Care –ACT
and CSIRO before commencement.
ORCID
Kerrie Noonan http://orcid.org/0000-0001-5349-5041
Debbie Horsfall http://orcid.org/0000-0002-9266-6234
Rosemary Leonard http://orcid.org/0000-0002-7642-5529
John Rosenberg http://orcid.org/0000-0003-2624-1083
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