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18 Chapter 2

relatively recently, public health has focused primarily on

disease control and prevention. In the late twentieth

century, public health approaches were addressing the

health and well-being of whole populations. Early public

health strategies focused on the reduction of mortality and

morbidity of communicable diseases and strategies such as

better sanitation and nutrition and did not address social

determinants of health [21]. This included early interven-

tion and prevention programs designed to modify the

behaviour of individuals and change environments to

enable health improvements [22]. Yet as early as 1978, the

World Health Organization (WHO) asserted the right of all

people to participate in the planning and delivery of their

own health care [23].

Health Promoting Palliative Care

The WHO Ottawa Charter for Health Promotion [24] was

considered the beginning of “new public health,” signalling

a shift away from a biomedical approach to disease preven-

tion and toward a greater acknowledgement of the social

determinants of health. To address this, the Ottawa

Chapter identified five key action areas:

Building healthy public policy.

Creating supportive environments.

Strengthening community action.

Developing personal skills.

• Reorienting healthcare services toward prevention of ill-

ness and promotion of health.

These five action areas were adapted by Kellehear [25] to

articulate Health Promoting Palliative Care (HPPC),

which outlined a way for palliative care services to adopt

health promotion principles and these key action areas. In

essence, HPPC was an invitation to palliative care services

to move upstream of direct patient care and to think

beyond service delivery to the wider role that palliative

care has in civic society. In this way, Public Health

Palliative Care (PHPC) has become the term to describe

this perspective and the practices that are derived from it.

In the past, “public health” and “palliative care” may

have been viewed as contradictory concepts [26]. Yet there

is now international agreement that the health and

well-being of people with life-limiting illnesses can be

improved with social and community interventions based

upon the Ottawa Charter [24, 27]. PHPC acknowledges

that health services (including palliative care) alone are not

sufficient to provide holistic end-of-life care for individ-

uals and their families, and that a

might include people with severe, persistent mental illness;

those experiencing homelessness; indigenous peoples;

those from culturally and linguistically diverse origins;

racial minorities; refugees; those identifying as LGBTQI +;

those with disabilities; prisoners; and others [18]. Many

current models of palliative care categorise these groups as

“hard to reach” populations.

However, could it be that it is healthcare services, not

populations, that are “hard to reach?” Palliative care has

been criticised for continuing to reflect its origins in

white, middle-class and religious settings where people

with advanced cancer comprised more than 90% of the

palliative care patient population. The term “hard to

reach services” has been used by advocates in the

disability sector to encourage palliative care services to

alter their language to describe people who are living with

disabilities and nearing the end of their lives; sometimes

in supported accommodation, but certainly not always,

and often subject to social stigma and disadvantage [19].

Similarly, the work of Stajduhar and colleagues with those

experiencing homelessness strongly question the suit-

ability of mainstream palliative care services to provide

accessible and appropriate end-of-life care [20]. The work

of Dr Naheed Dosani and his colleagues from Inner City

Health Associates in the Palliative Education and Care for

the Homeless (PEACH) project in Toronto, Canada, is a

groundbreaking venture that fundamentally relies upon

the participation of those who access the service from a

place of profound disadvantage (for more information,

got to https://www.icha-toronto.ca/programs/peach-palliative-

education-and-care-for-the-homeless).

The hospice movement and palliative care have evolved

through improved clinical practices, pain and symptom

management, and research activities. However, the main-

streaming of palliative care brought its routinisation and

over-medicalisation, impacting upon patient and public

participation. It is in this context that new approaches to

the provision of palliative care emerged, and where the pri-

macy of the citizen – not simply the “patient” – and their

community is promoted.

A New Paradigm: Public Health

Palliative Care

Public Health Palliative Care is an umbrella term for a

range of social and community-based interventions that are

implemented alongside the medical and health services

provided to people with a life-threatening illness. Until

https://t.me/med1917

Patient and Public Involvement in Palliative Care 19

viewed as social and interpersonal. It is a continuation of

naturally occurring social networks that a person with a

life-limiting illness and their family are already

connected to. In this sense, informal care has a significant

role in the life of a dying person because it is where peo-

ple are doing their living and connecting while they are

preparing for the end of their lives. These networks are

the source of social support that is often quite “ordi-

nary” – for example, keeping company, reading aloud,

doing the shopping, babysitting, or providing transport

for children to school or sports, housework, and food

preparation. It may or may not include direct personal

care, such as attending to hygiene, assistance with eating

and drinking, or toileting.

Informal care happens alongside formal care, although

it is not always recognised or valued in the same way as

service delivery. This undervaluing has been a key issue

for patient and public engagement. For example, how can

palliative care services justify the broadening of service

delivery to include public engagement when healthcare

services are already under-resourced and stretched in

providing clinical care? A PHPC approach argues that

increased service delivery cannot solve or address social

problems such as loneliness or the stigma that can be

associated with end-of-life care. Social problems, as noted

in the Ottawa Charter [23], cannot be tackled with med-

ical or health interventions alone; they require a social

response.

Increasingly, social media provides a platform for the

voices of individuals experiencing the issues arising from

dying, caregiving, death, and grief. Those who are – or

become – public figures at such a time add a voice via

social media that promote their and others’ participation

in the experience. For example, see Box 1 for the example

of Jade Goody.

…conscious, planned and deliberate political and social

set of actions taken by the key players in any community to

enhance the support and wellbeing of everyone affected by

ageing, dying, death, loss and caregiving [28 p. xiv].

This description captures the proactive, rather than reac-

tive, approach by communities and healthcare services

providing support to all those impacted with life-limiting

illnesses.

Circles of Care

It has been suggested that about 95% of the care of dying

people takes place away from healthcare systems [18].

Who, then, is participating in this care? In many cases,

there is a constellation of people and organisations that

provide this support, with or without the help of formal

palliative care service providers. It is in this context that the

application of HPPC can be understood. One model that

can be useful is Circles of Care which can be used to iden-

tify the components of a whole-of-community approach to

dying, caregiving, death, and grieving. The model places

the person with a life-limiting illness at the centre of a con-

stellation of support – first the patient’s inner and outer

support networks (family, friends), which is wrapped

around by community (such as the patient’s neighbours,

local community groups), then service providers and ser-

vice delivery [29]. The final circle is policy, acknowledging

that these concentric circles of care exist within broader

policy contexts, which equally inform how care and

support can be given.

Involvement in Care

Framing of patient and public participation in a PHPC

approach enables palliative care services to view patient

and public participation as a partnership, rather than com-

peting forces. If formal care providers and informal carers

are equal partners in the demands of caregiving, then it is

context that underpins services and identifies sources of

support within and beyond social networks of care.

Formal care is provided by accredited health profes-

sionals (including doctors, nurses, and allied health pro-

fessionals) and trained volunteers through the provision

of healthcare or hospice services. Informal care, or the

support from families, friends, work colleagues,

community groups, faith communities, and other

informal support networks, has long been recognised as

sharing the demands of caregiving to both the dying

person and their caregivers [30]. Informal care can be

Box 1: Case Study: Jade Goody

Celebrity illnesses and deaths are one example of “lay

experts” who live their dying and death in the public sphere.

Popular culture and access to information via the internet

and mass media provides deeply personal stories and insights

into illness, dying, death, and grief. Jade Goody was diag-

nosed with cervical cancer during her participation on a

reality TV program.

Goody’s use of social and mainstream media while she was

dying provided her with the status of lay expert and had the

impact of creating a significant increase in cervical screening

in Britain. This became known as the “Jade effect” [31].

https://t.me/med1917

20 Chapter 2

invited to contribute. However, wherever it sits on this

continuum, engagement by services and communities in

collaboration requires an informed and authentic under-

standing of the place each partner takes. This is espe-

cially so where services provide knowledge and skills

about palliative care to a community initiative. This

situation can directly challenge the service’s power as

“experts”:

…the palliative care profession is confronted with the

irony of relinquishing its “ownership” of the business of

dying while leading communities to reclaim their principal

role in the business of dying. The very services possessing

the expertise to lead this shift in control are the same ser-

vices that would be required to cede that control [8 p. 8].

Two examples where there is the imperative to engage in

this way are referred to as Compassionate Cities and

Compassionate Communities.

Compassionate Cities and Compassionate

Communities

Compassionate Cities are:

… communities that publicly encourage, facilitate, sup-

ports and celebrates care for one another during life’s most

testing moments and experiences, especially those pertain-

ing to life-threatening and life-limiting illness, chronic

disability, frail ageing and dementia, grief and bereavement,

and the trials and burdens of long-term care. [35 p. 1].

Compassionate Cities focus more on civil actions,

including civic partnerships through the local

government and other organisations, such as schools,

places of worship, and trade unions. Typically, any orga-

nisation can lead or promote the Compassionate Cities

Charter which articulates these elements in detail

(https://www.phpci.org).

Compassionate Communities are described as:

…communities that develop social networks, social

spaces, social policies and social conduct that support

people through the many hours, days, weeks, months and

sometimes years of living with a life-threatening or life-

limiting illness, ageing, grief and bereavement, and

long-term caregiving [27 p. xiv].

It can be seen how Compassionate Communities flourish

where both the proximity of palliative care services to end-

of-life issues, and the capacity, skills, and knowledge of

Involvement in Communities

Key to engagement in palliative care is working alongside

community members to encourage and enable participa-

tion. Community engagement is the process that enables

communities and services to work together to understand,

build capacity, and address issues to improve their experi-

ence of end-of-life and bereavement. It exists on a spec-

trum of engagement that extends from informing,

consulting, co-producing, collaborating through to

empowering, depending on a range of factors such as the

degree of participation from the local community and the

intention of the work [32]. This spectrum is based on

Arnstein’s Ladder of Participation [33], and “is designed to

aid professional services and the communities they serve

to embark on community engagement projects with an

open awareness of the key components underpinning

their success” [32 p. 5].

This spectrum provides palliative care services with a

way of understanding the different levels of community

engagement. All levels of engagement have an impor-

tant role in patient and community participation, and

this model encourages palliative care services to be

aware of the role of patient and community participa-

tion. For example, providing information and

consulting

with citizens is a more passive form of engagement that

aims to raise awareness and provide education.

Community projects that are focused on collaboration

and empowerment, however, are more likely to be led by

community members who self-organise and design the

interventions.

Critically, the language of engagement is itself problem-

atic when understood from a perspective of power. Cormac

Russell, a commentator based in the UK, addresses the

question, “How do we get people to engage?” Russell

tweets,

With respect, you don’t get ppl [people] to engage. You listen

to what they are about enough to act on, and then support

them to work with other to do what they care deeply about.

It’s not about getting ppl to do what we want. [33]

The issue here rests with the word “get.” Palliative care

services that are unsuccessful in their attempts to “get”

communities to engage with them have an opportunity

to rethink their place in this interaction. Of course, it

depends upon the nature of the engagement – for

example, providing information requires something dif-

ferent to a community-led initiative where the service is

https://t.me/med1917

Patient and Public Involvement in Palliative Care 21

and urban communities in the northwest of England to

establish a community-led initiative to raise awareness of

end-of-life conversations and care, and determine local

priorities to sustain them. This demonstrates its transfer-

ability across demographic and geographical regions; it

has cross-cultural applicability and enables the expres-

sion of diversity. The freedom in ABCD processes lies in

the local character it enables – members of the public

participate in end-of-life issues in whatever ways are

appropriate to them. This might include creative and

arts-based initiatives, discussion groups, public forums,

support networks, and information sources both hard

copy and online.

Involvement in Services

The origins of the modern hospice movement demonstrate

a longstanding practice of public participation in palliative

care services. It was community activism that brought

about the establishment of hospices and organised fund-

raising to maintain them. In many parts of the world, this

remains the case where communities lobby successfully for

a local community hospice. This original “reformist

agenda” was unsurprisingly overtaken in the subsequent

evolution of palliative care into mainstream healthcare

[39] and in many jurisdictions, hospices are unsupported

by government in favour of integrated palliative care ser-

vices. Whether or not one is a more suitable alternative is

communities are part of the same endeavour. The core ele-

ments of Compassionate Communities are:

• Build capacity and death literacy through education and

shared experiences.

•

Value and focus on existing community strengths and

assets.

•

Recognise communities as the experts on their own lives

and valuing them as key stakeholders, not just

participants.

•

Communities identify their needs and are empowered

to lead the change.

•

Focus on equity and inclusion with a broad under-

standing of health and wellbeing.

• Achieve sustainability through partnerships and shared

leadership.

• Take a whole-of-community approach, recognising that

palliative care and health services cannot do this alone.

• Think beyond individuals to include social and

community networks.

(https://bc-cpc.ca/all-resources/community-organizations/

compassionate-communities-toolkit/)

Compassionate Communities are often designed as pro-

grams or community development initiatives that bring

together small groups of people with shared goals of devel-

oping ways to improve dying, death, and bereavement

experiences. A critical, first step in this process is to iden-

tify what characteristics of Compassionate Communities

already exist – what “assets” are in place upon which to

build in conscious, deliberate ways?

Asset-Based Community Development

Asset-Based Community Development [ABCD] provides

an approach that identifies the existing capacity of com-

munities to support its citizens who are dying, caregiving,

or grieving. Russell [36] describes six key building blocks

that enable community mobilisation to address local

issues. These are shown in Figure 1.

This approach need not be complicated. For example,

Matthiesen and colleagues [37] utilised ABCD in rural

Economic

resources of

local places

Resources of

public,

private, and

non-profit

institutions

Power of local

associations

Skills of local

residents

Stories and

heritage of

local places

Community

capacity

Figure 1 Community building blocks.

Box 2: Case example: The Scottish Partner-

ship for Palliative Care

The Scottish Partnership has developed several programs and

projects that provide an opportunity for health services and

the general public to connect for the purposes of growing

awareness about palliative care. Demystifying death day and

the EASE course (End-of-Life Skills for Everyone) are exam-

ples of public participation programs [38].

https://t.me/med1917

22 Chapter 2

are invested in end-of-life issues have primacy; this applies

not only to the nature of the clinical care they receive, but

in their choice to participate, or not, in research. This

exercise of autonomy is susceptible to the influence of

benign paternalism and gatekeeping, yet can be a matter of

social justice. In reviews over the past decade or so, pallia-

tive care patients, caregivers and bereaved people have

expressed a willingness to participate in research, seeing it

as inherently valuable, and an opportunity to contribute for

the betterment of others if not themselves [40, 41].

Secondly, the methodological approaches to research in

palliative care require careful thought. Although clinical

trials are conducted in palliative care populations, it is not

a field that lends itself readily to research designs such as

randomised controlled trials, for example. Indeed, a report

in the Patient Experience Library [42] in the UK gives a

cutting critique of evidence-based practice, which silences

the patient voice as a source of evidence and privileges

“hard” evidence, with a great risk of subsequent harm.

Rather, where the voices of patient and public are sought,

participatory research methods can be highly effective;

they are an important part of the palliative care history and

the current research landscape. For example, network

mapping and social network analysis provide a rigorous

research method to ABCD [43, 44]. Digital storytelling,

such as photovoice, allows for narrative evaluation of expe-

rience and gives primacy to the lived experiences of ordi-

nary citizens in their dying, caregiving, and grieving.

Conclusion

Public participation is a key factor in the emergence of the

modern hospice movement and, to a lesser extent, the

development of the healthcare discipline of palliative care.

Patient participation is at the heart of holistic palliative care,

another matter, however it is certainly true that commu-

nity-based governance of a hospice is more accessible to

citizens than informing the quality of care in monolithic

healthcare systems.

A growing presence of active citizenry [1] as an expres-

sion of self-determination and influence has seen health-

care attempts to assimilate the “consumer voice” in its

governance. This is increasingly the case in palliative care

also. With changing attitudes towards the authority of

experts and powerful health systems, patients and public

(who are, after all, the same people) are asserting their

demands that healthcare improve the quality of services

and become more responsive, that they include users of

healthcare and community stakeholders into the gover-

nance of services. In many jurisdictions, this is a mandated

requirement. What might this look like in practical terms?

The representation of community members on Boards or

Advisory Committees, including those who are living with

life-limiting illnesses or have been caregivers, demon-

strates public participation in services.

Of course, the increasing influence of the public voice

has also led to legislative reform in a number of jurisdic-

tions where euthanasia has become legalised. Although the

assertion of the palliative care sector in many places is that

its remit does not include euthanasia, this distinction is not

necessarily shared by the active citizenry – care at the end-

of-life and euthanasia can both be viewed as end-of-life

issues by many members of the public. In either case,

public participation in advocacy and lobbying for

legislative reform is a notable example of the influence the

collective voice can have. Interestingly, in Belgium, it is a

requirement that, following a request for medical assisted

dying, palliative care assessment and interventions are

mandatory in the attempt to relieve suffering.

Involvement in Research

In the past, there has been substantial resistance to the

inclusion of palliative care patients in research, where they

would be considered too ill to talk [39]. In this context, it

has been asserted that clinicians can act as proxies for

patients; that this could lead to undue influence of self-

selecting proxies; that short life-expectancy disqualifies

patients from meaningful participation; and that research

too technical to impose upon seriously ill people. Sadly,

this is an example of the kind of benign paternalism noted

above, that has a protective intent but a silencing effect.

Two important considerations apply here. Firstly, it is

held here that the voices of the “patient” and the public who

Box 3: Case example: The Death Literacy

Index

The Death Literacy Index was developed following a decade

of qualitative and quantitative research about end-of-life

care networks. This 29-item survey tool that can be used

in compassionate community projects to understand more

about the strengths and challenges related to death literacy.

The tool can be used for research, evaluation, and to facilitate

community conversations. The DLI is an example of how

end-of-life research with carers and community members

can influence the development of participatory tools [30, 44].

https://t.me/med1917

Patient and Public Involvement in Palliative Care 23

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and Noonan, K. (2020). Researching Compassionate

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yet its prevalence has something of a chequered history.

With an increasingly aged population and changing expec-

tations of the interaction between healthcare services and

their clientele, there is an opportunity to fundamentally

refashion approaches to patient and public involvement in

palliative care. Patient and public involvement can be

embedded into care, communities, services, and research.

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Palliative Care provides approaches that enable patient and

public voices to be heard. The Ottawa Charter for Health

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engagement of health and palliative care services with the

general public. It is this ordinary citizenry who can not

only participate in end-of-life care support for its members

but drive much of the social response to the complex issues

that arise.

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https://t.me/med1917

Handbook of Palliative Care, Fourth Edition. Edited by Richard Kitchen, Christina Faull, Sarah Russell and Jo Wilson.

Equity, Diversity and Inclusion in

Serious Illness

Noura Rizk, William E. Rosa and Liz Grant

Introduction

Social justice advocate and global health pioneer, Dr. Paul

Farmer, asked, “If health is a human right … who is con-

sidered human enough to have that right?” [1]. There is

possibly no better starting point for a chapter on inequal-

ities than this reflection. The question does not ask how

disparities can be eradicated or what solutions are needed

to enhance optimal health and social care services, but

simply and quite boldly: Who is considered human enough

to be afforded the right to health?

When applied to the palliative and the end-of-life con-

text, the question might be posed: Who is considered

human enough to have their suffering relieved and their

death dignified? Again and again, society is forced to

reckon with the fact that our legacy is not defined by how

well we attend to the needs of our healthiest populations,

but how committed we are to providing compassionate

and humanising care for the sickest and most disenfran-

chised among us. Who is considered human enough to

have that right?

This chapter aims to summarise the background litera-

ture on inequalities in palliative care as they relate to

broader health and social care considerations; offer a prin-

ciple-based approach to promoting equity across the

serious illness continuum; and identify steps towards

inclusive palliative care for several historically excluded

and at-risk groups. Although we attempt to provide a com-

prehensive review of inequalities, we acknowledge that we

may likely and inadvertently leave out mention of groups

actively facing bias or fall short in attempts to be inclusive.

Thus, we offer this chapter as a starting point for scholarly

discourse.

Background

Although palliative care is considered a right to the highest

standards of mental and physical health, and a fundamental

aspect of universal health coverage per Sustainable

Development Goal 3, only 12% of the current global palli-

ative care need is currently being met [2]. In fact, despite

more than 61 million people worldwide experiencing an

estimated six billion days of serious health-related suffering

(SHS) annually, about two-thirds of countries have no or

extremely limited provision of palliative care and over 80%

have low to non-existent access to opioids for pain relief [3,

4]. The lionshare of unalleviated SHS impacts seriously ill

individuals and families living in low- and middle-income

countries (LMICs) – the poor, the overlooked, and the

unseen – those who have been historically considered not

human enough to have unfettered rights to health, to dig-

nity, and to palliative care. Over the next four decades, the

global burden of SHS is expected to escalate about 87%,

disproportionately disadvantaging those in LMICs among

other at-risk groups (e.g., older people over age 70) [5].

In addition to quantifying the global burden of SHS and

designing an essential package of physical and human

resources that could be costed and disseminated to bridge

palliative care delivery gaps around the world, The Lancet

Commission on Global Access to Palliative Care and Pain

Relief highlighted the global pain divide that keeps people

with life-limiting illnesses and injuries in LMICs suffering

needlessly. Using opioid access as a tracer for palliative care

and pain relief provision, the Commission calculated that

50% of the world’s poorest populations live in countries

that receive less than 1% of the annual opioid analgesics

distributed worldwide. Conversely, the richest 10% of the

https://t.me/med1917

26 Chapter 3

• Suffering is health-related when it is associated with ill-

ness or injury of any kind.

•

Health-related suffering is serious when it cannot be

relieved without medical intervention and when it compro-

mises physical, social, spiritual, and/or emotional func-

tioning because of severe illness.

• Severe illness is a condition that carries a high risk of

mortality, negatively impacts quality of life and daily

function, and/or is burdensome in symptoms, treatments, or

caregiver stress [8 p.761].

The new definition challenged the unintentional discrimi-

nating factors which traditionally meant that palliative

care was understood to be about alleviating suffering only

at the end-of-life and often only for patients with cancers.

It also sought to speak to the huge local and global dispar-

ities in the access to and quality of palliative care deter-

mined by, for example, age, disease type, ethnicity, religion,

social class, and geography. It highlighted it as an “active”

process that is rooted in relationship at the individual and

community level.

As the renewed definition of palliative care suggests

palliative care is both multi-dimensional and complex. As

previously mentioned, the availability of and accessibility

to quality palliative care is integral to achieving universal

healthcare coverage (UHC) [9]. Importantly, holistic palli-

ative care should be responsive to:

•

the different stages of illness as experienced by patients;

• the differing needs associated with various illnesses;

• patients’ and their families’ and carers’ cultural, social,

spiritual beliefs about illness and death.

This consensus-based definition is a key tool to advance

a unified and coherent approach to evidence-based

advocacy so that all stakeholders across sectors are clear on

the purpose, aims, utility, value, and anticipated outcomes

of palliative care [5].

Palliative care should be fully integrated throughout the

life course and care continuum. This integration requires

all health professionals to be trained in generalist palliative

care skills, including the ability to recognize when spe-

cialist palliative consultation is needed across the health

system it can be provided as a standalone intervention or

in conjunction with disease-modifying treatments.

Palliative care does not suddenly start and curative care

suddenly end. As Boyd et al. have shown the journey of

care is rarely linear, but rather there are ups and downs,

patients become very ill, improve, decline, then improve

again – a circular and often unpredictable trajectory [10].

world’s population live in countries that receive nearly 90%

of the annual distributed opioid morphine equivalent.

The Commission wrote, “Poor people in all parts of

the world live and die with little or no palliative care or

pain relief. Starting into this access abyss, one sees the

depth of extreme suffering in the cruel face of poverty

and inequity … The fact that access to such an inexpen-

sive, essential, and effective intervention is denied to

most patients in LMICs … is a medical, public health,

and moral failing and a travesty of justice” [6 p.1391].

This 90/10 pain divide is reflective of a dire human

divide: those considered human enough to have their

pain and symptomatic distress adequately managed and

those not considered human enough to have their

suffering relieved. This travesty is rooted in imbalanced

science that fails to prioritise disparities research in palli-

ative care and pain relief [6].

In addition to those who are living in poverty, count-

less historically excluded and systematically margin-

alised groups living in all countries have faced bias,

stigma, and suffering in the absence of person-centred

and holistic palliative care access that seeks to enhance

the quality of living and dying. COVID-19 has exacer-

bated SHS and health outcomes for many at-risk people,

including the incarcerated, persons with disabilities, per-

sons experiencing homelessness, those with substance

use disorder, and sexual and gender minorised popula-

tions, and racial, ethnic, and cultural minority groups,

among others [7].

Defining “Palliative Care”: A Critical

Endeavour

The International Association for Hospice and Palliative

Care sought to update and improve the 2002 World Health

Organisation (WHO) definition of palliative care through a

consensus-based approach, embedding choice, equality, and

diversity and engaging the expertise of experts from coun-

tries of all income levels. The provision of palliative care ser-

vices for children, older persons, and vulnerable populations,

as well as equitable access to controlled essential medicines

for pain relief and palliative care (e.g., opioids, benzodiaze-

pines) are incorporated in this definition:

the active holistic care of individuals across all ages with

severe health related suffering, because of severe illness and

especially of those near the end of life. It aims to improve the

quality of life of patients, their families, and their caregivers

[8 p.761]

https://t.me/med1917

Equity, Diversity and Inclusion in Serious Illness 27

the systems and structures in which these health services

functions. Marmot’s updated report, Health Equity in

England: The Marmot Review ten years on [13], showed

that this last decade has been marked by deteriorating

health and widening health inequalities throughout

England. Understanding how the societal determinants

of health and the determinants of the health system sit

together provides a critical matrix to understanding,

addressing, and unveiling the sources of inequalities.

When applied to the provision of palliative care, we see

that it is a set of different interlocking and interconnect-

ing structures which together determine how palliative

care is delivered and received. Box 1 provides an over-

view of these structures:

Over the past two decades, major inequalities in the

development and delivery of palliative care have been

identified beyond the Lancet Commission. These include

inequalities in the following domains:

•

early and timely identification of the need for palliative

care

•

availability, accessibility, and appropriateness of pallia-

tive care

•

comprehensiveness of care capable of embracing differ-

ent and hidden facets of physical, psychological, social,

and spiritual need

•

services that discriminated, often with unconscious

bias, on the basis of race, age, social status

•

culturally, traditionally, and religiously inappropriately

designed care

• a lack of understanding of the reach and purpose of the

services

• a lack or reduced opportunities to negotiate services that

meet changing needs

Inequalities do not just randomly happen, they reflect

structural injustices. Inequalities can affect not only

the patient and their family network, but also other

informal carers and service providers. Understanding

the processes that inform and perpetuate these inequal-

ities and identifying their etiologies can provide

guidance on how to dismantle them and reshape sys-

tems rooted in equity, inclusion, and social justice. Such

process mapping can also help to identify those areas

that may be outside of the realm of policy makers, pal-

liative care practitioners and primary care providers to

change – areas where wider societal change is a prereq-

uisite to improving health outcomes for all sections of

society.

The Environment that Breeds Inequalities

There are multiple ways of looking at how national health

and social care systems are established, sustained and

managed. One way is to understand how inter-related

and frequently interlocked structures inform units of

care delivery, and consequently, engender an environ-

ment where inequalities at all levels of care provision can

emerge. Marmot’s initial report on the social determi-

nants of health, Closing the gap in a generation: Health

equity through action on the social determinants of health

[11] put into the public, and the public health domain

what Tudor Hart [12], and countless other protagonists

of “community care” had been saying for years, namely

that well-being owes far less to health services than to

Box 1: Structures shaping care

Institutional structures: The way that care systems are built

and maintained. This includes both the physical space and

place of care, and also the delivery processes and the pack-

ages of care managed by institutions. Once in place, packages

of care, like buildings, are often difficult to deconstruct and

reshape.

Educational structures: The way that skills are taught

and transferred, the premises on which healthcare teach-

ing is delivered, the foundational knowledge base which

determines the type of care that is presented as the stand-

ard “normative” care within communities and national

systems.

Economic structures: The way in which care is costed,

and the drivers to greater cost efficiency and productivity.

Alongside the very direct care costings economic structures

determine the benefit systems, and drive decision making for

carers, and for relatives. Once a night-time carer’s allowance

has been put in place, or a benefit granted, few feel able to

make changes.

Societal structures: The ways in which society establishes

its norms and values. There is an overriding emphasis on

unity within our health systems, with established patterns

and processes and systems of healthcare which veer away

from complexity and multi-dimensional “untidy” diverse

approaches to care, and encourage an endless move towards

uniformity.

Identity structures: Potentially the most fluid of all of the

structures, they also can be the most set in stone. Identity

structures refer to the way that each of us, experience and

interpret the world around us, influenced by religious, social,

emotional beliefs and traditions, family and cultural norma-

tive behaviours and expectations.

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