Добавил:
Sekretar
kiopkiopkiop18@yandex.ru
t.me/Prokururor I Вовсе не секретарь, но почту проверяю
Опубликованный материал нарушает ваши авторские права? Сообщите нам.
Вуз:
Предмет:
Файл:Ординатура / Хирургия / Библиотека им академика М.И. Перельмана / Книга_3090_Библиотеки_им_академика_М_И_Перельмана
.pdf
28 Chapter 3
and endings, recognising that a major consequence is an
uncertainty of talking about death and dying. This has
been coupled with a continued expectation that success
lies in cure and fending off death rather than in ensuring
that those with life limiting illnesses can have a good death.
Who suffers the most in such situations? Is it the patient
receiving aggressive treatments when treatments are
potentially harmful? Or the family hanging onto hope that
death is still somewhere in the future and thus failing to say
goodbye properly? Or the clinician who feels that they
have failed when nature has taken its course? All of these
have been challenged with the unpredictability brought
about by the pandemic, with its battle imagery of fighting
against COVID-19 and the deep seated desire, and societal
pressure to “win” over COVID-19.
Principle Two: Palliative care is responsive and adaptive
to a person’s beliefs, tradition, language, culture, and
way of life
Fewer opportunities to openly discuss death and dying is a
degradation of health professionals’ expertise and ability to
actively respond to religious, spiritual, and cultural
community needs. Investments have been made by the
National Health Service (NHS) in establishing ethnic sen-
sitivity, cultural awareness, and competency trainings, and
developing a fairness culture within the health service.
Respect for the religious and spiritual beliefs of others is
now core to care and an essential competency.
But for many patients such respect for their beliefs has
not resulted in recognition of their particular spiritual
issues and needs, nor has it been translated into the
empathic engagement needed to have open, honest, and
transparent dialogue with clinical teams [16].
In studies conducted in Edinburgh with health profes-
sionals, we uncovered considerable anxieties about dis-
cussing and supporting the spirituality of others with
differing beliefs.
Members of minority ethnic communities have found
themselves struggling to access care and to find support
that respects and honours their particular traditions and
views, and this has had significant negative consequences
for those nearing death and for their families. Equitable
palliative care must ensure that all patients and their fam-
ilies are able to carry out the traditions and rituals impor-
tant to them, in a space and place where they feel
comfortable and respected (Box 2). COVID-19 and isola-
tion from family, faith communities, and social support
systems has elevated the risk for spiritual distress, spiritual
injury, and spiritual crisis [17]. Every health professional is
accountable for spiritual care assessments for seriously ill
A Principle-Based Approach to Palliative
Care Equity
Perhaps the best way of understanding and tackling
inequalities is to first focus on a set of principles that
encapsulate the best in palliative care and to explore situa-
tions in every day service where these principles have been
compromised.
Principle One: Palliative care is reflective of different
communities’ meta-narratives on death and dying
The Lancet Commission on the Value of Death recently
sought to bring focus to the interrelated social, economic,
cultural, religious, and political factors that inform how
death, dying, and grief are engaged across various contexts
and in the global village as a whole. The narratives of indi-
viduals with advanced, progressive illnesses and their fam-
ilies – the narratives that define and shape the cultures of
marginalised groups within our increasingly multicultural
societies – are harder to hear and often overshadowed by a
dominant voice rooted in colonisation and white
supremacy [14]. And, again, the most disadvantaged suffer
most from imbalances in suffering, dying, and grieving.
Truth-telling narratives in serious illness are often
pushed aside by a death-defying, death-ignoring meta-
narrative focused on cure and life-sustaining interven-
tions, explicitly valuing quantity of life over quality. All the
grand religious traditions recognised the inspiration of the
sacred beyond the grave, the possibilities of passing places
between this world and the “next,” or another unseen
parallel space, and acknowledged that the essence of life
was that it was physically finite, yet spiritually eternal.
Aging and death were understood and accepted within the
religious and social frameworks that constituted a commu-
nity’s culture and traditions.
The Value of Death Commission [15] highlighted the
complexity of world views which disregarded people’s per-
spectives and ancient connections with nature and knowledge.
They set out to describe a “realistic utopia” on how and what
dying “could be.” Their five principles of the realistic utopia
call for a world where: (1) the social determinants of death,
dying, and grieving are tackled; (2) dying is understood to be
a relational and spiritual process rather than simply a
physiological event; (3) networks of care lead support for
people dying, caring, and grieving; (4) conversations and
stories about everyday death, dying, and grief become
common; and (5) death is recognised as having value.
The Commission noted the changing narrative across
the world to explain and indeed manage life’s beginnings
https://t.me/med1917
Equity, Diversity and Inclusion in Serious Illness 29
high-quality, and holistic palliative care provision.
Alongside those who struggle to communicate in English
because it is a second or third language, many patients
(even those who speak English as their mother tongue) feel
they lack the “medical English speak” to communicate
properly with doctors and nurses, or to question their pal-
liative care plans.
Additionally, it is important to engage the services of an
interpreter and include them as part of the multi-disciplin-
ary team where possible. Allowing family members to
interpret can lead to nondisclosure of potentially impor-
tant information. There may also be a role for interpreters
in promoting cultural understanding and insight for the
care professionals beyond language interpretation [18].
Chapter 7, Conversations and Communication, provides
practical guidance on working with interpreters to facili-
tate good communication.
Principle Three: Person rather than disease-focused
palliative care
The COVID-19 pandemic has shifted national and global
attention from the commonly categorised “palliative care
diseases” (e.g., cancers, heart failure, human immunodefi-
ciency virus (HIV) in many regions in Africa). Cancer in
the United Kingdom has a well-understood “public story”
incorporated within its narrative. It is a death conversation,
even if the threads of that conversation are about “fighting
death,” “not giving in,” and “not losing the battle.”
In 2008, Murray and Sheikh [19] argued that health pro-
fessionals and systems must apply the lessons learned from
cancer to the growing number of people dying from non-
malignant illnesses. Those living with advanced diseases,
dementia, organ failure, or physical frailty still have far
fewer services available that are much less likely to deal
with all dimensions of need. Many palliative care services
are still designed in traditional, disease specific ways thus
reducing the opportunity of accessing benefits to properly
and effectively addressing their symptoms. Having a dis-
ease that is not boxed into a set time, with a set prognosis
and expected clinical picture, creates health service diffi-
culties as palliative structures are set up to manage, and be
managed within a pre-determined and often erroneous
time line. The disease one lives and dies with can in some
cases be financially crippling, leading families into a spiral
of poverty.
Several tools, such as the Supportive and Palliative Care
Indicators Tool (SPICT) (see Chapter 1: The Context and
Principles of Palliative Care), have been developed in the
UK to challenge the inequalities due to types of and access
to care. These tools inherently emphasise the need for
Box 2: Cross cultural care
Daniel was admitted with advanced carcinoma of the lung.
He is 42 years old and of Nigerian origin but has lived
away from Nigeria for many years. He was originally admit-
ted for uncontrolled and severe pain, but his condition has
rapidly deteriorated and he is now bedbound. He has a large
family and an argument has developed between the patient’s
family and a care assistant looking after him. The family
brought in some food that they wished the patient to have
and the care assistant has said they are unable to use facilities
to heat the food due to health and safety regulations. The
care assistant is very unhappy about Daniel’s relatives being
disruptive – particularly by praying “too loudly.”
The case is discussed at the multidisciplinary team (MDT)
meeting, and one of the nurses caring for Daniel explains
that his family members are scared about what is happening
to him. They believe that if he has the right food to eat, he
will become stronger and will be able to have more treatment
to cure his cancer. She has spoken to Daniel separately who
wants to go along with whatever his family members want,
although he is aware that he is dying and wants to go back to
Nigeria to die. The team agrees that the doctor, the nurse, and
the social worker caring for Daniel will hold a family meet-
ing to ensure an environment of cultural safety and cultural
humility is nurtured.
Following the meeting, the ward agrees to let Daniel’s
family prepare his meals; they also look into the possibility
of him flying to Nigeria, including access to palliative care
services in the country.
individuals and their loved ones – which should consis-
tently occur upon intake, during care transitions and
changes in clinical status, and certainly in advance of the
time surrounding dying and death.
Inequalities in care can arise specifically because of
migration. While UK systems of palliative care are, broadly
speaking, individual rather than family focused, there is a
latent expectation within the health service that family
support will be available to “fill the gaps” in care. For those
who lack easily accessible community or family support,
such as those who have recently arrived in the UK, partic-
ularly from circumstances of violence, armed conflict, or
imminent threat, this can result in care failures, patient
harm, and negative clinical outcomes. Patients newer to
the system frequently lack awareness of what services are
available and lack an understanding of the cost of services,
risking their socioeconomic wellbeing and stability.
Thoughtful and sensitive communication with patients
and relatives is an essential aspect of person-centred,
https://t.me/med1917
30 Chapter 3
Principle Four: Palliative care is initiated at the most
appropriate time for the patient
The most impactful way to reduce inequalities in access to
and in management of the complexity of all pain and
suffering is to ensure that palliative care starts not at the
end point just before death, but at the stage the patient,
their carers, and health workers recognise that the person
is confronting an illness that is, ultimately, life-limiting.
Consulting and involving palliative care for the “actively
dying” patient is a disservice to the dying one who may
have unmet needs, the loved ones who may be struggling
with anticipatory grief, and the ethics of “do no harm.” But
knowing how, what, and when to provide such care
remains difficult for many practitioners. Too early, and
angst is exacerbated, especially in a pervasive culture that
is socially death-denying; too late, and blame is appor-
tioned for delays in starting to administer palliative care.
In a curative focused environment, where hope is pinned
to retaining life at all costs, there is often a huge reluctance
among practitioners to raise discussions about death and
dying.
Universally accessible and publicly provided palliative
care that is integrated as a component of comprehensive
health coverage should ideally start at the time of serious
illness diagnosis, work in tandem with disease-modifying
treatments, ensure holistic care for patients during the
time surrounding death, and continue to support bereaved
loved ones. This ongoing and evolving model of palliative
care involvement allows access to needed services as new
symptoms arise and the patient condition ebbs and flows.
The changing nature of the emphasis on what palliative
care is and does, creates a much more fluid space for devel-
oping equitable, inclusive services. Moving from the
construction of palliative care as disease-focused towards a
more patient-focused construction that is determined by
the patient’s experience of suffering creates new opportu-
nities for palliative care professionals to intervene. While
the cancer journey facilitates a conversation about pallia-
tion, other diseases such as COPD provide no such ready
trigger. Longitudinal studies from Edinburgh’s Primary
Palliative Care Research Group, working with people with
end-stage COPD identified the way in which COPD was a
“disease with no beginning,” “a middle that is a way of life,”
and “an unpredictable and unanticipated end.” However, if
the integrated model is achieved, there is no need for palli-
ative care intervention at beginning, middle, or end, but
rather a continuous and evolving relationship-based model
that allows for palliation and whole-person/whole-family
support throughout the experience of illness, dying, death,
and grief.
health professionals to engage the concept of palliation in
practice as they make care decisions with patients [20].
One question remains a useful indicator of access: Would
you be surprised if this person died within the next year? If
the answer is “no,” Boyd and colleagues argue, consideration
should be given to placing such patients, irrespective of
diagnosis, onto a palliative/supportive care register. Box 3
provides a small case study of good practice in decision-
making. Rather than providing a definitive prognostica-
tion index, this approach enables the practitioner to adjust
the focus of care from curative/life prolonging to
supportive/palliative care and to ensure that they consider
the likely needs of the patients and provision of care,
ensuring that patients are able to achieve excellence in
end-of-life care, including discussions around advanced
care planning, decisions around cardio-pulmonary resus-
citation (CPR) and to prevent unnecessary/unwanted
hospital admissions.
Box 3:
Holistic decision making
Tom, a 74-year-old man with chronic obstructive pulmonary
disease (COPD) has been increasingly breathless for the past
two years and is now house-bound due to breathlessness on
exertion. Tom has reported moderate to severe pain of un-
known etiology in his lower back, likely due to overall decon-
ditioning and debility. He lives with his wife Pauline who is
72 years and is his main carer. Pauline is also unwell, suffering
from diabetes and chronic leg ulcers. They are receiving some
assistance from social services who help with shopping and
cleaning, but despite this are still struggling to manage. The
district nurses visit regularly and suggest referring Tom to
the local hospice for assistance with symptoms of breathless-
ness and pain. Tom and Pauline are reluctant for referral to
the hospice as they see the service as being only for patients
with advanced cancer who are dying. After some further
discussion with the community respiratory nurse – who they
know well – they agree to a joint visit from the palliative care
community nurse together with the respiratory nurse.
After undertaking a holistic assessment of Tom’s and his
wife’s needs, the palliative care nurse refers Tom to the phys-
iotherapist for advice on non-pharmacological management
of his breathlessness while starting him on oral morphine
to control his symptoms more quickly. She refers him to day
care which he will be able to attend once a week in order
to give his wife caregiver respite. She also arranges for the
occupational therapist to visit to assist with adaptations to
their home to enable Tom and Pauline to care for them-
selves more easily. The palliative care nurse and respiratory
nurse arrange to visit again in two weeks’ time to review the
situation.
https://t.me/med1917
Equity, Diversity and Inclusion in Serious Illness 31
captures a respectful and cohesive approach to inclusively
manage a potentially divisive cultural and social issue.
Those least likely to challenge the routine are those most
at risk of receiving a form of care that does not actually
meet their current needs. Alongside the multiple patient-
initiated reasons for continuing with the status quo there
are an equally large number of reasons that are linked to
professional reluctance or indecision around change, such
as nurses feeling inhibited to speak out in support of
change, especially if senior medical leadership has made
difficult to reverse decisions, such as social care benefits,
introduction of meals on wheels, or intensive homecare.
Health professionals that are not trained in palliative care
can also hold misconceptions of the aims and benefits of
palliative care that prevent them from involving these ser-
vices. This lack of education permeates the health profes-
sions and widens disparities between who is able to access
needed services and who continues to suffer without the
ethical relief of distress.
Principle Six: Palliative care is accessible and responsive
to those who have been marginalised at interpersonal,
institutional, systemic, and structural levels.
There are multiple reasons why some people exist on the
margins of society or have been pushed to the edges of
society. These include, for example, individuals with severe
and/or untreated mental health challenges, pronounced
learning or physical disabilities, and persons experiencing
homelessness and substance use disorder, among others.
Providing equitable and inclusive palliative care to per-
sons who have been disenfranchised is challenging, not
least because palliative care, as a service, is dependent
on the concept of continuity of health care. Current pal-
liative care referral structures require practitioners to
establish beginnings, to identify changes that transition
a person from one form of palliative care to another
form of specialist palliative care often with new people
and new approaches. Much palliative (and indeed health)
care assumes a stable address for identification and
billing, as well as safe discharge planning; the availability
of the patient to attend appointments; and the ability to
be in the “right place” at the “right time” for the service
to function.
Take persons experiencing homelessness for example.
Barriers include:
•
Unstable living conditions and situations complicated
by potential lack of safety and estranged relationships with
family
• Lack of identification or other pertinent documen tation
Pinnock et al. provide a telling description of the difference
in approach to patients with COPD which has a fundamental
influence on equity. In contrast to consultations with people
with cancer where there was often a more natural discussion
on death, a familiar and comfortable pattern of consulting
with a patient with a chronic illness prevented initiating an
unlooked for discussion about the future:
“Interviewer: I was going to ask you whether you have
talked to him at all about what might happen in the future
and how things might progress?
GP: No, not really. He usually has got his own [agenda in
the consultation]. It’s more reassurance about how he is
and chatting generally and he just likes a bit of social
discourse I think.” [21 p.7]
Has it changed in this past decade? Prior to the pandemic
the response is likely to be no, the pockets of excellence,
and the aspirations for good conversations around dying,
are held in tension with unprecedented rise in demand on
General Practice.
Principle Five: The most equitable palliative care is fluid
and adapts to suit the changing physical needs of
patients and their carers
Palliative care needs to recognise both the linear journey
element of living in the face of death (i.e. the inevitability of
death) and the potential circular nature of this journey (the
lack of certainty on timing of death, the ups and downs of
the disease journey, and the remissions and relapses). The
majority of health services are constructed along linear
models, and once patients are on the conveyer belt of a
linear approach to care it is extremely difficult to move off it.
Inequalities result, in part, when the care being given is
not the care needed. There are various reasons why both
health professionals and patients struggle to make the care
changes that would better serve the emerging needs related
to life-limiting and serious illness. Patients can lack the
right information about the nature of the care they can
expect to receive, especially patients not familiar with the
health system, or they may lack the confidence to challenge
the nurse or the doctor when prescriptions are repeated, or
advice given that was suitable a year ago, but has been
overtaken by events. Patients may fear that describing an
improvement may result in care being withdrawn, or a
change in the routine of care. Patients and their loved ones
may be uninformed or incorrect in their conceptions of
palliative care, their rights to holistic treatment, and their
opportunities to have psychosocial, spiritual, and cultural
care needs addressed beyond pain management. Box 2
https://t.me/med1917
32 Chapter 3
her to die in the prison … you wouldn’t have been able to
fit all the equipment we needed into her room … it would
have been a fire risk, because you couldn’t get a bed
through the door if a fire was to start in the prison. So, it
was just no, no, she wouldn’t have been able to die there”
[25 p.569].
Principle Seven: Palliative care has no age barriers
The majority of palliative care services have been
established with a specific population in mind, an adult
population, often between the ages of 40–70, the majority
of whom have a diagnosis of cancer. Children’s palliative
care has made huge advances in recent years leading to it
being recognised as a speciality in its own right. Resources
such as the International Children’s Palliative Care
Network speak of the shift in perspectives [26]. NICE
developed a guide specifically for End-of-Life care for
infants, children, and young people with life-limiting con-
ditions: planning and management in 2016 and the UK
charity Together for Short Lives has developed resource
guides to support families of children during preference
and choice of care.
Older people who have additional minoritised identities
(e.g., Indigenous groups, racially or culturally margin-
alised) are at increased risk of being overlooked and expe-
riencing harm. Health professional education at all levels
and system-wide policies must be accountable for creating
care environments for older people that are culturally safe,
respectful, and invested in the ideal of a “longevity society”
where older people thrive as full members of society [27].
Getting the place of care right for frail older persons
is challenging. The COVID-19 pandemic exacerbated
what was already an inequitably funded, and unequal
system of care. The diversity of the services offered
within care homes, the complexity of the needs of resi-
dents almost all of whom are living with frailty has led
to inequalities in access to appropriate palliative care.
The British Geriatiric Society report notes 400,000 older
people live in care homes in the UK a number projected
to rise by 127% within the next 20 years [28]. Most of
those living in care homes are in their last two years of
life. Though care home staff are skilled at reducing the
risk of falls, care residents are three times more likely
to fall than others of the same age living in their home
[29]. Are care homes set up to provide comprehensive
palliative care services? Staff in care homes may be less
aware of the need for palliative care and the requirements
to consider issues such as end-of-life care planning.
Frequently there is little discussion with the patient and
their relatives about what should happen if the patient’s
• Untreated medical conditions and potentially under
addressed daily needs
•
Experiences of stigma, bias, and judgment within an
inflexible health system
•
Nature of receiving palliative care in homeless hostels
with the extra burden of care placed on hostel staff.
Suggestions to improving access to care for those who
are homeless have been identified (Box 4).
A number of new initiatives have been undertaken to
improve access to palliative care for persons experiencing
homelessness. A UK model embedding palliative care
teams (nurses and social workers) within homeless hos-
tels for two half-days a month to support and train hostel
staff improved outcomes. The model fostered collabora-
tive learning between the hostel staff and palliative care
specialists, where hostel staff felt more confident, recog-
nised their roles and were able to identify opportunities to
seek the needed health or social care for their residents.
Equitable access to primary care, nevertheless, remained
a challenge for many of the reasons mentioned above [22].
Palliative care provision for incarcerated persons is also
an area of great inequality in care provision. A European
Association for Palliative Care (EAPC) Taskforce set up in
2017 mapped palliative care provision in prisons in Europe,
where England and Wales were the only countries to have
some designated palliative care units within prisons, the
limited availability was an indicator for inequitable care
[23]. A recent Scottish study that explored the role of hos-
pices in supporting patients in prison showed that only
30% of the hospices were providing direct care to patients
with palliative care needs in prison, while 65% of hospices
were sharing advice to prison healthcare teams in order to
support prisoners with their end-of-life needs. Key chal-
lenges have been identified [24], including the lack of
preparation to support people if they were given compas-
sionate release, and the prison environment making it dif-
ficult for people to receive controlled medication and
medical equipment [25] “now, there wasn’t an option for
Box 4: Improving care for those who are
homeless
• Building trust between homeless and health professional,
removing stigma, and careful listening.
• Linking and developing partnerships between community
and health services, allowing more flexibility.
• Training of health and social professionals to understand
experiences and lives of homeless people.
• Provision of community palliative care beds within home-
less hostels.
https://t.me/med1917
Equity, Diversity and Inclusion in Serious Illness 33
marginalization and mistreatment, leads to worse health
outcomes among these populations. The underassessment
of LGBTQ+ identity and specific health needs, prefer-
ences, and concerns, as well as services not recognising the
sanctity and validity of minoritised sexual orientations and
gender identities create barriers during treatment in
addition to the exclusion of spouses and partners from
important conversation regarding care. The chosen fam-
ilies of LGBTQ+ individuals often shoulder the added
burden of fear and worry of mistreatment alongside their
grief in the serious illness context [32].
The first studies exploring the health experiences of
the LGBT community with advanced illness when access-
ing healthcare in the UK highlighted barriers to access
and offered a set of recommendations to improve care.
These included recommendations at: individual level
such as the avoidance of heteronormative assumptions
and language, sensitivity to sexual orientation, acknowl-
edgement of preferences regarding disclosure of sexual
identity and gender history, sensitive exploration of rela-
tionships and partners with care, and the inclusion of
partners and significant others in the conversations about
care.
At the service level, recommendations included clarity
of policy and procedures regarding discrimination, the
inclusion in training about LGBT communities, and LGBT
visibility, visual indicators such as signs of inclusivity e.g.,
the rainbow, and active partnerships with LGBT commu-
nities [33]. These have progressed to become more
inclusive in order to create culturally safe healthcare envi-
ronments for LGBT persons and their families (both
chosen and biological).
Research conducted by Jones and colleagues in the US
points to people of less well represented racial and ethnic
groups having more severe pain, less advance directive
completion, more in-hospital deaths with higher fre-
quency of aggressive medical treatment, less palliative care
consultation, and often experience both implicit and
explicit bias and discrimination [34]. Palliative specialists
around the world are calling for transformations of clinical
practice, research, education, and policy to dismantle rac-
ist structures and reshape care environments that readily
address the social determinants of health and the global
historical narrative of racism, that has had intergenera-
tional and multidimensional impact. Jones et al. identified
a top ten list of pointers in delivering care that was antira-
cist, many of the pointers are applicable in UK settings
[35]. Investments are needed to forge race-conscious palli-
ative care systems informed by socially just research and
practice models [36].
condition changes or their condition deteriorates unex-
pectedly. There is a disparity in the standard of pallia-
tive care between those with a diagnosis of cancer and
those with other chronic, life-limiting conditions such
as dementia. The long period of decline that the frail
elderly experience often does not fit with a hospice care
model. Until recently, the palliative care community had
relatively little dialogue with geriatricians, many of whom
provide holistic care, although as the 2018 Care Quality
Commission report found there is limited emphasis on
planning for dying [30]. It is not uncommon that end-of-
life care for the frail elderly is triggered by crises admis-
sions followed by weekend and night-time referrals to
community crises care teams to provide a care cover until
“something can be done, somewhere can be found” for
the patient. Several educational programmes to improve
palliative care in UK care homes were implemented
which have been assessed as having a positive impact
on care staff skills and communication including “The
Six Steps to Success,” NHS England – North West » Six
Steps to Success in End-of-Life Care; “PACE (Palliative
Care Across Europe)”
final1-pace-impactpublication.pdf
(europa.eu); “the Namaste programme” Namaste Care
Programme | The End-of-Life Partnership (eolp.co.uk)
and “Needs Round,” an approach delivered in Australia
that incorporates clinical triage, person centred planning
and case-based education has been tailored to UK con-
text [31]. Also see Chapter 16: Frailty, Dementia and
Multi-Morbidity.
Principle eight: Palliative care is inclusive of all histori-
cally excluded groups
Historically excluded groups have experienced marginali-
sation structurally and systemically due to power imbal-
ances and deliberate injustices that degrade their humanity
due to race, culture, ethnicity, sexual orientation, or gender
identity, among other identities. The rights of lesbian, gay,
bisexual, transgender, and queer/questioning individuals
(LGBTQ+) have been recognised by several legislatives in
the UK including the Equality Act (2010), Gender
Recognition Act (2004), the Civil Partnership Act (2004)
and Same-Sex Marriage in 2014. However, the LGBTQ+
community still has negative experiences when accessing
health and social services – ranging from sanctioned
discrimination and violence, to homophobia and trans-
phobia, to stigma and disenfranchised grief and bereave-
ment for the spouses, chosen families, and social supports
of LGBTQ+ patients. Understandable distrust of the health
system, coupled with potential abandonment from faith
communities and families of origin and broader social
https://t.me/med1917
34 Chapter 3
solutions to support communication between patients and
families [37].
However, inequalities in the use of the communication
technology were present when access to equipment was
limited and existing information technology systems were
fragile. In addition, people with either communication diffi-
culties, severely unwell or older adults often struggled [37].
Using technology as a communication mechanism is
dependent on having access to, and being able, familiar and
comfortable with using technologies. And while health facil-
ities may have been able to offer inclusive design technol-
ogies, the cheapest most commonly used technologies were
often not suitable for families and carers who had hearing,
sight or touch disabilities. Digital equity is a priority for the
modernisation and advancement of palliative care.
Some of the many challenges to discussions about
patient preference and advance care planning between
healthcare workers, the patient and family were exacer-
bated further during the pandemic. With extreme patient
isolation from family and from professionals, uncertainty
in response to treatment, increased workload on staff and
more limited choices of discharge, it became more chal-
lenging to have meaningful discussions regarding individ-
ualised care and share the information across services [38].
International Dimensions and Palliative
Care Integration into Humanitarian Relief
Services
There is a huge need for palliative care in all countries,
especially in low-and-middle income countries (LMICs).
While palliative care is recognised as an integral compo-
nent of healthcare and a marker of quality within a health
care system by WHO, many health systems continue to fail
to meet the mark. The second edition of the Economist
Intelligence Unit Quality of Death Report show high
income countries at the top of the ranks and disparities in
the quality of death between less and more wealthy coun-
tries continue to widen. The scarce availability and access
to pain medication, limited training programmes and
resources, as well as the lack of basic service infrastructure
hinders palliative care development.
However, exceptional efforts by lower income countries
like Panama, Mongolia, and Uganda have given promise.
The positive impact that contributed to rapid access of care
was contributed to the integration of palliative care into
primary settings, collaborative work in development of
teaching programmes and innovative means to make med-
ication and care affordable. Furthermore, home and com-
munity-based care may be key in bridging inequities to
care present in rural areas [39].
Principle nine: Palliative care adapts to change, embeds
quality and effectively utilises modern technology in
response to changing contexts
Palliative care professionals are trained to address and lead
complex decision-making in times of clinical uncertainty.
They are skilled and proactive in managing severe deterio-
ration that accompanies different disease trajectories.
However, the COVID-19 pandemic shocked all health sys-
tems and changed the very nature of palliative care access
and provision. Looming front and centre in the examina-
tion of inequalities and the systems of provision for pallia-
tive care in the UK and globally is the impact of the
pandemic. With the onset of the pandemic, palliative care
rapidly moved in many countries from being both a discrete
specialist led service and a service working to support non-
specialist delivery in the hospital and community sectors, to
a system that was being integrated into specialist, emergency,
intensive care in a dynamic, rapidly transitioning uncertain
period. Attempting to meet the changing and urgent needs
of patients and those of staff unprepared for the weight of
suffering and death put new pressures on palliative care
(Chapter 23: Creating space, clarity, and containment in
order to sustain staff: managing the emotional impact of
palliative care work, focusses on supporting staff). As public
health guidance required people to remain in isolation with
limited physical contact, palliative care services adapted and
responded in creative ways extending outreach services,
training to non-specialists, employing technology for com-
munication and developing strategies to promote staff well-
being [37]. These critical lessons of rapid change, flexibility,
training of staff and repurposing plans to meet ever growing
demands and these may be valuable to carry forward.
Box 5 includes transcripts from palliative care teams in
the UK and Europe on the implementation of digital
Box 5: The use of digital tools to
support communication between patient
and families
“The iPads which we managed to raise through charity
donations – through the use of our Face Book page – are now
available on all wards with the support of our IT team and
information governance teams have allowed many families to
speak or even just see their loved ones.” [37 p.825]
“On the COVID unit we only allowed 2 visitors for 30 min
to say goodbye to a dying patient. We invested a lot in virtual
saying goodbye with Jitsi which IT installed on special laptops
for this. We have a very good team of psychologists and chap-
lains that were available 24/7 to give support to the COVID
team and helped with the virtual goodbye saying.” [37 p.822]
https://t.me/med1917
Equity, Diversity and Inclusion in Serious Illness 35
The WHO has established a guide to integrating pallia-
tive care in response to humanitarian emergencies [42] and
palliative care has been added as an essential concept of
health in the latest edition of The Sphere Handbook [43].
Models of effective integration of palliative care in human-
itarian care teams can be found in Jordan, Bangladesh and
India, and these models push the boundaries of traditional
palliative care to meet the bespoke needs of the different
experiences. For example a clinician working at a medical
unit at Za’atari camp in Jordan, provided spiritual therapy
and prescribed higher doses of pain medicine to Syrian ref-
ugees after having received palliative care training. The fol-
lowing quotes the experiences of a 34 year old female with
advanced cancer who was living at Za’atari camp:
Every day that I don’t see [the palliative team] and the pain
comes, I enter a different world. I can’t talk with anyone or
contribute anything. It’s very difficult. But the mobile med-
ical team drives me whenever I need it. Whenever they don’t
come, I go to the clinic and I take pills and if there’s a vaca-
tion, then they give me the shot and the pills for the day of
the vacation. Thankfully, I take them and I can sleep and
eat. They changed my life a lot [44 p.26].
Adaptive models of the palliative provision, by training
and supporting workers on site can challenge inbuilt
inequalities [45]. As Farzana Khan explains in her analysis
of the needs of those in refugee settings, reaching beyond
the visible to hear the complexity of need is important:
Mojidor is a 10-year old Rohingya boy with bone cancer living
in Cox’s Bazar refugee camp, Bangladesh. When he was diag-
nosed at the camp field hospital, Mojidor and his mother cried
all night fearing he would soon die. Mojidor has two little sis-
ters. His father is missing. We found Mojidor in a tent lying on
a mat, unable to move or walk because of his pain. In the past,
Mojidor was a typical football-loving boy. His nickname was
‘bhuissya’ meaning ‘buffalo’. We started pain treatment, and
now Mojidor can walk and even smiles a little [45 p.4].
Armed conflicts are increasingly dangerous and violent as
militarised violence has become more sophisticated and
treacherous. The 2022 Russian invasion of Ukraine has
shocked systems everywhere with the murder, sexual
assault, and displacement of thousands of Ukrainian citi-
zens. In these dire times with accompanying dire conse-
quences, it is critical that the value of alleviating suffering
and dignifying death be prioritized and kept central to
emergency planning and response interventions.
Box 7 sets out a set of steps urgently required to alleviate
suffering and care for these with palliative needs [46].
As highlighted in Chapter 1: The Context and Principles
of Palliative Care, the Lancet Commission on Palliative
Care and Pain Relief estimated that 80% of people who
experienced serious health-related suffering in 2015 were
from LMICs [3], where palliative care is underdeveloped
and healthcare systems are overwhelmed. Shifting towards
low-cost solutions such as the introduction of an essential
package of medication and medical equipment safely pre-
scribed at the primary care level as well as developing the
competencies of healthcare workers is paramount.
Palliative care needs were seen to exacerbate further or
be left neglected when responding to complex humani-
tarian crisis such as during displacement of individuals, at
refugee camps, disease outbreaks, and at mass casualty
events where people are triaged based on their odds of
survival [40]. Box 6 illustrates some complex humanitarian
setting scenarios where palliative care is indicated.
Box 6:
Palliative care scenarios in the
settings of humanitarian crises
“Scenario 1: Mass casualty triage.
Following an earthquake resulting in hundreds of deaths
and severe damage to local infrastructure, the wounded are
presenting to an emergency field hospital. Medical staff are
triaging people to different areas for immediate life-saving
care, less serious injuries, and those whose injuries are too
severe to survive and are deemed unsalvageable. One such
young man has a severe crush injury. He is confused and
agitated, complaining of thirst, and moaning in pain.” [41 p.2]
“Scenario 2: End-stage disease.
An NGO is responsible for care provision in a refugee
camp bordering a country with ongoing and evolving civil
war. A woman who was forced to flee two weeks ago arrives
with her teenage son. Prior to fleeing she was receiving
hemodialysis for end-stage renal disease. The camp does
not have access to dialysis, and the physician assessing her
expects she will deteriorate and die within the coming few
weeks with the limited available care.” [41 p.2]
“Scenario 3: Incurable condition.
An Ebola Treatment Centre has been established to care
for patients at a time when the case fatality rate approaches
60%. All care is provided in full Personal Protective Equip-
ment, minimizing time and contact with patients. A woman
from an outlying area has been admitted to the Centre.
Family members are not allowed to enter the Centre due to
concerns of contagion and she has had no contact with family
since her arrival. Despite supportive treatment she is dete-
riorating rapidly with a dire prognosis. While experiencing
ongoing diarrhoea and vomiting, she is delirious, distressed,
and calling out for loved ones.” [41 p.2]
https://t.me/med1917
36 Chapter 3
Prior to the war, opioid availability and palliative care access
in both Ukraine and Russia were unacceptably low given the
estimated SHS in both countries. Given the increased pain
and trauma inflicted by war, there are undoubtedly countless
Ukrainians and Russian suffering without critical access to
analgesics and other symptom relieving essential medicines.
To tackle the discrepancies and gaps in care a global net-
work of palliative care researchers and specialists have
come together under the banner of PallCHASE, (Pallchase.
org – Palliative Care in Humanitarian Aid Situations and
Emergencies) [47]. Its aim is to see a world where everyone
affected by humanitarian situations or emergencies who is
experiencing serious health-related suffering has access to
palliative care.
Box 7: Recommendations for alleviating suffering in war
Urgent Recommendations
• Prioritise
humane, dignified, and compassionate care for the dying even in the face of
conflict as outlined in the Sendai Framework for disaster Risk Reduction
• Leverage multidisciplinary academic, clinical, and policy stakeholders to partner with
civilians and community-based networks to create safe, supportive spaces to discuss
anticipatory grief and fear, and provide psychosocial and spiritual support for the dying
and the grieving
• Strengthen and extend existing bereavement support systems and services that bridge
transitional care gaps between health systems and communities
• Relay the experiences of families and children confronting death and dying to provide
realistic understanding of the consequences and harms of militarized violence
• Provide telehealth supports within and outside of conflict regions to provide psychosocial,
spiritual, and bereavement supports
• Triage serious health-related suffering in both community- and hospital-based settings to
ensure timely and strategic responses to the dying processes of those with life-threatening
illness
• Create pathways for controlled essential medicines access (i.e., opioids) to manage pain
and other distressing symptoms at EOL
Ongoing Recommendations
• Identify war and violence as a social determinant of dying, death, and grief, creating future
crises standards of care that include attention to EOL and bereavement
• Address war as an integral component of the death system that mediates life and death in
the presence of threat, danger, and violence
• Continue to relay the stories of death and dying in the face of war in academia and lay
media to reveal the dehumanizing truths of EOL and grief amid violence
• Highlight stories of marginalized groups within conflict regions, including the
incarcerated, refugees, homeless, cultural, and ethnic minorities, children, women, and
the elderly, to address the intersectionality of violence and structural discrimination
• Continue to support policies and practices to actively dismantle racism, bias, and neo-
colonialist structures that devalue the living and dying of human beings across cultures and
contexts
• Advocate for integrated palliative care models in all countries to ensure suffering is
alleviated across the serious illness continuum in both times of peace and war
• Increase death literacy and global collective action toward health and social equity,
freedom, and the right to a sacred dying and death
Conclusion
The barriers to accessing palliative for those who are the
most poor and who are suffering the most are without
doubt, “the most disfiguring inequity in health care today”
[48]. This lack of inclusion into services or failure to find
and refer to the most appropriate service is often not
through intention, but through lack of knowledge, a loss as
to what to do next, a failure of systems and service design.
Getting end-of-life care “right” lies at the heart of what it
means to be an equitable society and thus prioritising this
area needs no apologies.
https://t.me/med1917
Equity, Diversity and Inclusion in Serious Illness 37
17. Ferrell, B.R., Handzo, G., Picchi, T., Puchalski, C., and Rosa,
W.E. (2020). The urgency of spiritual care: COVID-19 and
the critical need for whole-person palliation. Journal of Pain
and Symptom Management 60 (3): e7–e11. doi: 10.1016/j.
jpainsymman.2020.06.034.
18.
Norris, W.M., Wenrich, M.D., Nielsen, E.L. et al. (2005).
Communication about end-of-life care between language-
discordant patients and clinicians: insights from medical
interpreters. Journal of Palliative Medicine 8: 1016–1024.
19. Murray, S.A. and Sheikh, A. (2008). Care for all at the end of
life. BMJ 336: 958–959.
20.
Lilyman, S. and Bruce, M. (2016). Palliative care for people
with dementia: a literature review. International Journal of
Palliative Nursing 22: 76–81.
21.
Pinnock, H., Kendall, M., Murray, S.A. et al. (2011). Living
and dying with severe chronic obstructive pulmonary
disease: multiperspective longitudinal qualitative study. BMJ
342: d142.
22.
Armstong, M., Shulman, C., Hudson, B., Brophy, N., Daley,
J., Hewett, N., and Stone, P. (2021). The benefits and
challenges of embedding specialist palliative care teams
within homeless hostels to enhance support and learning:
perspectives from palliative care teams and hostel staff.
Palliative Medicine 35: 1202–1214.
23.
Turner, M., Chassagne, A., Capelas, M.L., Chambaere, K.,
Panozzo, S., Teves, C.M., and Riegler, E. (2021). Mapping
palliative care provision in European prisons: an EAPC task
force survey. BMJ Supportive & Palliative Care 0: 1–7. doi:
10.1136/bmjspcare-2020-002701. Published Online First:22
April 2021.
24.
http://globalpalliativecare.org/covid-19/uploads/briefing-
notes/briefing-note-palliative-care-for-detainees-in-custodial-
settings.pdf.
25.
Mcparland, C. and Johnston, B. (2021). Caring, sharing,
preparing and declaring: How do hospices support prisons to
provide palliative and end of life care? a qualitative descriptive
study using telephone interviews. Palliative Medicine 35:
563–573.
26.
http://www.icpcn.org (accessed 9 August 2022)
27. Rosa, W.E., Bhadelia, A., Knaul, F.M., Travers, J.L., Metheny,
N., and Fulmer, T. (2022). A longevity society requires
integrated palliative care models for historically excluded
older people. The Lancet Healthy Longevity 3 (4): e227–e228.
28. BGS. (2021). Ambitions for change: Improving healthcare in
care homes. Available at BGS Ambitions for change -
Improving healthcare in care homes. pdf (accessed 9 August
2022).
29. BGS (2020). End of life care in frailty: care homes. https://
www.bgs.org.uk/resources/end-of-life-care-in-frailty-care.
homes (accessed 29 March 2021).
30.
Limb, M. (2018). Care Quality Commission finds growing
inequalities in access to health and social care in England.
31. Macgregor, A., Rutherford, A., Mccormack, B., Hockley, J.,
Ogden, M., Soulsby, I., Mckenzie, M., Spilsbury, K.,
References
1. Farmer, P. (2003). Pathologies of Power: Health, Human
Rights, and the New War on the Poor. Berkeley, CA: University
of California Press.
2.
UN high-level political meeting on UHC. (2019). 1966
international covenant; and WHPCA Global Atlas 2d ed.
3. Knaul, F.M., Farmer, P.E., Krakauer, E.L., De Lima, L.,
Bhadelia, A., Kwete, X.J., Arreola-Ornelas, H., Gómez-Dantés,
O., Rodriguez, N.M., Alleyne, G.A., and Connor, S.R. (2018
April 7). Alleviating the access abyss in palliative care and pain
relief—an imperative of universal health coverage: the Lancet
Commission report. The Lancet 391 (10128): 1391–1454.
4.
WHPCA Global Atlas 2d ed.
5. https://pubmed.ncbi.nlm.nih.gov/33944616.
6. Knaul, F.M., Rosa, W.E., Arreola-Ornelas, H., and Nargund,
R.S. (2022). Closing the global pain divide: balancing access
and excess. The Lancet Public Health 7 (4): e295–e296. doi:
10.1016/S2468-2667(22)00063-9.
7.
IAHPC briefing notes.
8. Radbruch, L., De Lima, L., Knaul, F., Wenk, R., Ali, Z.,
Bhatnaghar, S., Blanchard, C., Bruera, E., Buitrago, R., Burla,
C., and Callaway, M. (2020). Redefining palliative care—a
new consensus-based definition. Journal of Pain and
Symptom Management 60 (4): 754–764.
9.
World Health Organization (2018). United Nations
Children’s Fund Declaration of Astana. https://www.who.int/
docs/default-source/primary-health/declaration/gcphc-
declaration.pdf (accessed 29 March 2021).
10. Boyd, K., Mason, B., Kendall, M. et al. (2010). Advance care
planning for cancer patients in primary care: A feasibility
study. British Journal of General Practice 60: e449–e458.
11. CSDH (2008). Closing the gap in a generation: health equity
through action on the social determinants of health. Final
Report of the Commission on the Social Determinants of
Health. Geneva: WHO. https://www.who.int/publications/i/
item/WHO-IER-CSDH-08.1 (accessed 9 August 2022).
12. Tudor Hart, J. (1971). The inverse care law. The Lancet 297:
405–412.
13. Marmot, M., Allen, J., Boyce, T., Goldblatt, P., and Morrison,
J. (2020). Health Equity in England: The Marmot Review ten
Years On. London: Institute of Health Equity.
14.
https://ecancer.org/en/journal/editorial/121-decolonizing-
end-of-life-care-lessons-and-opportunities#.Ymqakyx11NE.
twitter.
15. Sallnow, L., Smith, R., Ahmedzai, S.H. et al. (2022). Report of
the Lancet Commission on the Value of Death: bringing
death back into life. The Lancet 399 (10327): 837–884. doi:
10.1016/S0140-6736(21)02314-X.
16. Irajpour, A., Moghimian, M., and Arzani, H. (2018).
Spiritual aspects of care for chronic Muslim patients: a
qualitative study. Journal of Education and Health
Promotion 7: 118. Published 2018 Sep 14. doi: 10.4103/jehp.
jehp_199_17.
https://t.me/med1917
Соседние файлы в папке Библиотека им академика М.И. Перельмана