Module 1

This module is designed to introduce you to the history and principles of

Palliative Care.  You will consolidate your nursing knowledge, enhance
and learn new skills required to ensure that quality patient centred care is
provided across all care settings throughout the lifespan, to individuals
who have life-limiting illnesses whilst being able to support and educate
their families.

The importance of recognising your own values and beliefs about death
and dying and how these affect your responses and interactions with
people and their families that have life limiting illnesses is an important
aspect of your nursing practice.

What is Palliative Care?    

The World Health Organisation [2020], defines Palliative care as;

An approach that improves the quality of life of patients and their

families facing the problem associated with life-threatening illness,
through the prevention and relief of suffering by means of early
identification and impeccable assessment and treatment of pain and
other problems, physical, psychosocial and spiritual. Palliative care:

 provides relief from pain and other distressing symptoms;

 affirms life and regards dying as a normal process;
 intends neither to hasten or postpone death;
 integrates the psychological and spiritual aspects of patient care;
 offers a support system to help patients live as actively as possible
until death;
  offers a support system to help the family cope during the patients
illness and in their own bereavement;
 uses a team approach to address the needs of patients and their
families, including bereavement counselling, if indicated;
 will enhance quality of life, and may also positively influence the
course of illness;
 is applicable early in the course of illness, in conjunction with
other therapies that are intended to prolong life, such as
chemotherapy or radiation therapy, and includes those
investigations needed to better understand and manage distressing
clinical complications.

Paediatric Palliative Care will also be discussed in NRSG374

particularly during the week 2 tutorial and case study, it is worth noting
that the WHO, (2020) have highlighted a specified definition for
children and their families, requiring palliative care as seen below;

 Palliative care for children is the active total care of the child's
body, mind and spirit, and also involves giving support to the
family.
 It begins when illness is diagnosed, and continues regardless of
whether or not a child receives treatment directed at the disease.
 Health providers must evaluate and alleviate a child's physical,
psychological, and social distress.
 Effective palliative care requires a broad multidisciplinary
approach that includes the family and makes use of available
community resources; it can be successfully implemented even if
resources are limited.
 It can be provided in tertiary care facilities, in community health
centres and even in children's homes
Life Limiting Illnesses

What does the term "life limiting" Illness mean?

Life-limiting illness is a term that is used to describe illnesses where it is an expectation that
death will be a direct consequence of the illnesses. The list below is not an exhaustive one
however does include many life-limiting illnesses:

 Cancer
 Heart Disease
 Chronic Obstructive Pulmonary Disease
 Renal Disease 
 Dementia
 Heart Failure
 Neurodegenerative  Disease 
 Chronic Live Disease

When is Palliative Care Introduced?

Palliative care needs to be incorporated into the care of all chronic and progressive illnesses in
addition to acute illnesses or traumatic injuries where the prognosis is poor.  Traditionally as per
the diagram below, palliative care was not considered, discussed nor introduced until near the
final stages of life, and as such little to no preparation time was provided to patient's and their
families. 

                                                                                                                                      (Pinilla et al,
2020)

The modern hospice and palliative care movement now aims and works tirelessly to introduce
palliative care services and contacts from diagnosis of a life limiting illnesses as a member of the
multi-disciplinary health care team to support patient's and their families with symptom
management and optimisation of care to enhance quality of life knowing that quantity is limited.

Evolution of the palliative care knowledge base, specialisation of symptom management,

spiritual, psychological and emotional care have continued to uphold the traditions and
philosophy of Dame Cicely Saunders (Clark, 2018). In 2020 our approach to palliative care is an
increasingly integrated one that according to the Royal Australian College of General
Practitioners [RACGP] (2020) also encompasses knowledge of various disease trajectories and
their deteriorating symptoms.  It is worthy of noting the red line in chart below represents the
introduction of palliative care services at a much earlier stage of the disease / injury process than
the previous model, where palliative care was provided during the final stages, giving little to no
time for the patient and family to build a rapport with the palliative care team.

Perceptions of Death and Dying

What are your perceptions of death and dying?

As we begin this unit take some time to consider your personal perceptions of death and dying
and what may have influenced them. 

You could consider;

 Contemporary meanings of death and dying?     

 Your cultural, spiritual and/or religious beliefs?
 Family and personal experiences?
 Professional experiences?
 Cultural diversity in our society?
 Indigenous persons experiences?

Death and Dying in 21st century Australia

It is undeniable that modern society and infrastructure has had a large impact on our health in
Western Society, particularly if we compare  life expectancy and the causes of death for our
counterparts from more than a century ago.  The Australian Bureau of Statistics [ABS], (2017)
gender comparison of leading causes of death is illustrated in the diagram below.

The Australian Institute of Health and Welfare [AIHW] (2020), highlighted that in comparison to
other countries within the Organisation for Economic Cooperation Development (OECD)
counties, that Australia has the eighth highest life expectancy at birth and fifth highest for
females, with children born in Australia today having a life expectancy into their mid 80's. 
These statistics support those above with the Australian population today being an ageing one,
having leading causes of death from chronic disease and illness. A century ago death in Australia
was often sudden and the leading causes were;

 Infections
 Accidents
 Childbirth

Life Span V's Life Expectancy 

Entering the health profession and understanding quality of life, wellness, curative care and
palliative care it is important to define these terms and recognise their differences

Life expectancy - Is a term that is used to describe an 'entire population, and takes into
consideration all mortality figures, be they expected or non expected deaths

Life Span - Is the term to used to measure the actual length of an individual's life 

Expected deaths include those related to many of the life-limiting illnesses that are common
causes of death in Australia. The term ‘life-limiting illness’ is used to describe a wide range of
progressive and advanced conditions (eg, Heart failure, renal failure, motor neurone disease,
various cancers, chronic obstructive pulmonary disease etc) where it is expected that death will
be a direct consequence of the specified illness. Many people living with these illnesses will
benefit from the provision of palliative care, to aid in their symptoms supporting quality of life.

Despite epidemiological studies and research the average life span of an individual and life
expectancy of a population are just that; they are an average.  Further breakdown is required to
ascertain the causes of illness and death in various populations, it is then that we are able to
identify more vulnerable groups, who may require additional supports and other areas of focus,
that we will explore further on this module.

Philosophy and history of Palliative Care

In alignment with the World Health Organisation definition, Palliative

Care Australia defines palliative care in the contemporary Australian
context as:

"Palliative care is person and family-centred care provided for a person

with an active, progressive, advanced disease, who has little or no
prospect of cure and who is expected to die, and for whom the
primary treatment goal is to optimise the quality of life" (Palliative
Care Australia, 2020). 

Palliative Care Australia considers that the following elements are

integral to understanding this definition of palliative care":

 Palliative care should be strongly responsive to the needs,

preferences and values of people, their families and carers. A
person and family-centred approach to palliative care is based on
effective communication, shared decision-making and personal
autonomy.
 Palliative care should be available to all people living with an
active, progressive, advanced disease, regardless of the diagnosis.
 Palliative care affirms life while recognising that dying is an
inevitable part of life. This means that palliative care is provided
during the time that the person is living with a life-limiting illness,
but it is not directed at either bringing forward or delaying death.
Historical Perspectives

As highlighted earlier in our discussion on the perceptions of death and

dying, this process historically was not often spoken about in western
culture nor were there modern day hospices or palliative care units. It
was not until Dr Cicely Saunders first shared her ideas and passion of
modern hospice care in the late 1950's. Prior to the work and research of
Dr Cicely Saunders.

Dame Cicely Saunders born in 1918 trained as a nurse, medical social

worker and physician in England, who through her research, clinical
practice and passion became the founder of the modern hospice
movement.  Dame Cicely founded St Christopher's Hospice in 1967 this
was the first Hospice that linked expert pain and symptom control
management for the terminally ill.  Dignity, compassion, respect and
rigorous scientific evidenced based research were utmost in her model of
care for dying people.

Introducing the concept of "total pain" in palliative care medicine, her

vision reinforced the specialty, and with this that the medical model of a
focus on cure only was expanded and no longer viewed as a sign of
failure.  
St Christopher's Hospice is now one of many Hospice's and Palliative
Care units globally, it is decidedly respected providing the highest
quality of patient centred care, support for patient's and their loved ones
and educational opportunities for health professionals.

What is Total Pain?

Dr Cicely Saunders coined the term "Total Pain" in her seminal work on
the subject terminal patient care in what was to become one of the
foundational publications in patient centred care in her book , The
Philosophy of Terminal Care in 1978. 

"Total pain is the suffering that encompasses all of a person's physical,

psychological, social, spiritual and practical struggles" (Saunders,
1978)

The diagram below illustrates the 4 phases of total pain and associated
areas within them, the four quarters can be looked at individually
however, all four as you see make up the whole, highlighting the
interconnectedness and overlap of symptoms and issues and how these
all play a integral parts of patient centred care (Dobson, 2017)
 "We Will Help you live until you die"

Australian National Palliative Care Standards

Palliative Care Australia, (2018) have developed 9 standards of care to
be used by specialist palliative care services and for those  being
palliated.

Why do we have standards?

The National Palliative Care Standards  clearly articulate and promote

a vision for compassionate and appropriate specialist palliative care.
The Standards recognise the importance of care that is person-centred
and age-appropriate. In particular they point to the requirement for
specific attention to the needs of people who may be especially
vulnerable or at risk. This may include, but is not limited to;

 Aboriginal and Torres Strait Islanders;

 asylum seekers;
 people who have experienced torture and trauma;
 people who are experiencing homelessness;
 people living with mental illness, intellectual disabilities or
dementia;
 paediatric populations;
 people with unique clinical needs;
 people who are lesbian, gay, bisexual, of transgender experience
and people with intersex characteristics (LGBTI),
 people from culturally and linguistically diverse (CALD)
communities, or
 those experiencing other forms of social or economic
disadvantage.

The Standards need to be relevant to those specialist palliative care

services with a sole practitioner, as well as larger services that are
more resourced with comprehensive research and teaching roles – and
to everything in between. They are generally normative standards but
also incorporate aspirational components to support those services with
growing capacity and capability.

This 5th edition of the Standards has been developed to reflect the
significant changes that have occurred since 2005 and to continue to
support specialist palliative care services as they work to ensure that the
people they service have access to the highest quality of care as they
approach and reach the end of life (Palliative Care Australia, 2020)

Application of Theoretical Standards to Clinical Practice 

Standards 1 to 6 - are important for the individual healthcare workers
and carers to uphold, develop and maintain ensuring dignity, empathy
and high quality care for each patient, their family and loved ones.

Standards 7-9 are essential expectations for organisational structure and

quality standards that enhance an environment and workplace to enable
staff to service the culture of palliative care and those who require it,
provide quality improvements, quality management, bench-marking  and
ongoing professional development.
Promoting Dignity and Decision Making in Palliative Care

National Palliative Care Strategy 

(Department of Health, 2018)

Discussions on perceptions of life limiting illnesses, history and philosophy of palliative care and
the Australian national palliative care standards bring us to a point that essentially highlights the
need to uphold core values and human rights 

Dignity as derived from the Latin dignus, meaning worthy, as dignity refers to worth, it is
fundamental that human dignity refers to the worth of the human, as such the United Nations
Declaration on Bioethics and Human rights strongly emphasises human dignity as an aim and
also a key principle that must be applied in making ethical decisions in the bioethical sphere
( Ozolins & Grainger, 2015).

The United Nations, (2020) states that:

The Universal Declaration of Human Rights

The Universal Declaration of Human Rights (UDHR) is a milestone document in the history
of human rights. Drafted by representatives with different legal and cultural backgrounds
 from all regions of the world, the Declaration was proclaimed by the United Nations
General Assembly in Paris on 10 December 1948,  as a common standard of achievements
for all peoples and all nations. It sets out, for the first time, fundamental human rights to be
universally protected and it has been translated into 500 languages.

According to (Ozolins & Grainger, 2015), there are four key areas that attain to bioethics
particularly 

1. Respect for human Dignity means that the 'interests and welfare of the individual should
have priority over the sole interest of society
2. human beings are fundamentally equal in dignity (moral worth) and for this reason
should be treated 'justly and equitably'
3. Any kind of discrimination against an individual or group constitutes a violation of
human dignity
4. No cultural practices or beliefs may be appealed to justify violations of the dignity of the
human individual.

Key points in Palliative care

The World Health Organisation [WHO], (2020) and Palliative Care Australia support the
following as fundamental to Palliative Care;

Life Affirming : Palliative care affirms life and regards dying as a normal process and a
part of living. It intends neither to hasten or postpone death.

Palliative care is about living. It supports people to live their life as completely and as
comfortably as possible in ways that are meaningful to them by focusing on:

 Living well with deteriorating health

 Ensuring that they have the best quality of life while they are alive.

The intention of palliative care is not to prolong or shorten life but to respect the natural moment
of death. End-of-life care is a part of palliative care and refers to the last few days of life when a
person is irreversibly dying

Quality of Life : Palliative care will enhance quality of life, and may also positively
influence the course of illness, by providing a support system to help people live as
actively as possible until death.

Palliative care improves quality of life by focusing on living well with deteriorating health.The
following questions can assist to  determine which area of their life the person with a life-
limiting illness needs help and support with:

 Are they comfortable and pain free?

  Are they able to socialise or spend time with loved ones and people who are important to
them?
 Are they having as much independence as possible?
 Are they feeling that they are a burden?
 Are they feeling emotionally balanced?
 Do they have all the information they need at this time?

Holistic Care : Palliative care integrates the psychological and spiritual aspects of care

Palliative care treats the whole person, rather than just the symptoms of illness, in order to
identify personal goals and preferences for care.

Palliative care can assist with a variety of needs:

Physical Needs

 Management of physical symptoms such as pain, weakness, fatigue and dyspnoea

 Information about treatment, diagnosis or prognosis

Psychological and Cognitive Needs

 Management of psychological symptoms

 Financial concerns such as loss of income and medical costs
 Legal concerns such a preferences for end-of-life care and advance care directives

Social Needs

 Need for social support

 Need related to language and information disclosure preferences

Spiritual Needs

 Spiritual and existential concerns including hope, loss of meaning and uncertainty

Cultural Needs

 Unique cultural and personal experiences are considered when planning care
 Supporting Families in Palliative Care : Palliative care offers a support system to help
the family cope during the illness and during their own bereavement

Family members (or friends) who take on the role of principal carer are often stressed and can
benefit from support. This support requires the consent of the person with the life-limiting
illness, and can include:

 Keeping the family informed about what is happening

 Explaining what to expect and how they can help
 Ongoing education about care and management
 Managing expectations
 Support during decision-making on end-of-life issues
 Provision of emotional and spiritual support
 Preparation for death when this is imminent
 Support after death – and during the bereavement process.

Prevention and Relief of Suffering: Palliative care provides relief from pain and other
distressing symptoms

Many palliative conditions have complex symptoms and unrelieved symptom issues can have a
negative impact on a person’s quality of life. People affected by life-limiting illness frequently
experience a myriad of symptoms due to a combination of:

 The illness itself

 Illness-modifying treatment
  Concurrent illness/comorbidities.

Early Identification and assessment : Palliative care is applicable early in the course of
illness, in conjunction with other therapies that are intended to prolong life, such as
chemotherapy or radiation therapy, and includes those investigations needed to better
understand and manage distressing clinical complications

Early identification, impeccable assessment and comprehensive management of physical

symptoms are central to the provision of high quality palliative care. Even small improvements
in symptom management can significantly improve quality of life.

Early palliative care:

 Emphasises active, comfort-focused care and a positive approach to reducing suffering 

 Improves quality of life 
 Helps to avoid burdensome interventions of low benefit 
 Reduces hospital admissions 

Team Approach : Palliative care uses a team approach to address the needs of patients
and their families, including bereavement counselling, if indicated.

People affected by life-limiting illness often have complex and multifaceted needs. In order to be
effective, palliative care should be provided by a range of health professionals, trained
volunteers, family members and carers. Not all people will need specialist palliative care.

Clinicians who have advanced training in palliative care deliver specialist palliative care services
which includes providing direct care to people with complex palliative care needs, and providing
consultation services to support, advise and educate non-specialist clinicians who are providing
palliative care. 

This interdisciplinary approach enables collaborative and person-centred care. This can assist
with care goals that are unlikely to be achieved by health professionals when working in
isolation.

Identifying Barriers to Palliative Care

Exploratory Analysis of Barriers to Palliative Care 

The nine under-served population groups identified by the Australian Health Care Associates in
February 2018 highlighted barriers that they had in accessing appropriate and quality palliative
care (Department of Health, 2020):

 Aboriginal and Torres Strait Islander

 People from Culturally and Linguistically Diverse Backgrounds
 Care Leavers and People Affected by Adoption
 People with Disabilities
  People experiencing Homelessness
 People who identify as Lesbian, Gay, Bisexual, Transgender or Intersex
 People who are incarcerated
 Refugees
 Veterans

Palliative care as previously highlighted in this module should be:

 Accessible to all people with an active, progressive, advanced disease regardless of

diagnosis
 Should be strongly responsive to the needs and preferences and values of people, their
families and carers
 Affirms life while recognising that dying is an inevitable part of life 

  (Department of Health, 2020)

What are the Barriers ?

1.  Increasing Comfort with discussing death and Dying : While there may be a general
culture of ‘death denial’ in mainstream Australian culture, for some under-served
populations, a reluctance to talk about death and dying represents an even stronger barrier
to accessing palliative care, and having specific needs met when it is accessed.
2. Community Awareness and Understanding Palliative care : 

In general, and across all the identified under-served population groups, a lack of
understanding of what palliative care is, how it could help, which health and social care
providers are involved and what services are available was reported.
 3. Timely Initiative of Palliative care : Palliative care is poorly understood by the
community—even among professionals who don’t work in the area. Curative treatment
and palliative care for symptom control can be mutually exclusive, it does not have to be
one or the other 
4. Understanding under-served populations : It is not feasible to expect all health care
workers to have a full comprehensive understanding of all areas of our diverse
community and its populations, however they must be recognised and as such referrals
made and knowing where to get help is an essential role of any health and social care
worker
5. Awareness of Trauma Informed Care: Many individuals have 'extensive histories of
trauma, that when left unaddressed can and often do impact care'.  It is the role of all care
providers to be able to provide comprehensive person centred care, inclusive of past
traumatic experiences that may make death, dying and having unresolved issues and
trauma causing physical and emotional pain during the process
6. Information Provision and Communication: Effective, appropriate information sharing
is imperative throughout a person's entire palliative care journey. ‘Palliative care
communication is very different to everyday communication. We need to help people
find hope, cope with grief, address their spirit, and plan for tomorrow'
7. Provision of Person Centred Care: We need to have a palliative care service that is
inclusive for all groups, not a different service for different populations, but to do this we
need to identify barriers and facilitators
8. Palliative care in rural and remote settings: The level of services varies dramatically
in geographically remote areas. Our metro areas are well covered, our regional less so,
and remote is “hit and miss”. All people should be able to have the same access

Bridging the Gap

Recognising barriers is the way forward to repairing and acting on them

  
      

  (Department of Health, 2020)

Broad Innovative person centred networks that engage communities and health care
professionals to have conversations and share experiences is an important way moving forward;
we need to share and link our ideas, understanding and referrals to all diverse aspects of health
and community networks
Increasing research, diversifying the workforce, continuing discussions are always to move
forward and uphold person-centred care, in  all geographical and population areas of our
community

                                                       

Palliative Care Environments

Where can I receive Palliative Care support ?

The goal of palliative care is to relieve the suffering of people affected by life-limiting illness
through the comprehensive assessment and treatment of the physical, psychosocial and spiritual
symptoms. Symptoms often follow a predictable pattern as the person progresses along their
illness trajectory. Each person will experience these symptoms differently and will have different
preferences for treatment and management. 

Active involvement in health care for the patient with a life-limiting illness, their family, carers
and loved ones means that these individuals can all play an important role in the initial and
ongoing assessment and care planning.  The person centred assessment has a focus on holistic
needs that include but are not limited to :

 Management of physical symptoms such as pain, weakness, fatigue and dyspnoea

 Management of psychological symptoms
 Need for social support
 Culturally specific needs related to language requirements and information disclosure
preferences
 Need for information about treatment, diagnosis or prognosis
 Spiritual and existential concerns including hope, loss of meaning and uncertainty
 Financial concerns such as loss of income and medical costs
 Legal concerns such as preferences for end-of-life care and advance care directives.

Needs are ever changing as may be the wants of the individual and their family, as such we
recognise that palliative care must be personalised.

Levels of Need for Palliative Care

Individuals move between different levels of needs as their disease progress and / or symptoms
require managemen
Settings 

People with life-limiting illnesses will require different levels of palliative care and as such
palliative care can be provided in different settings.  These settings can be divided into two broad
categories and can be a combination as both:

1. Community Based Support

 People’s homes
 Residential aged care
 Accommodation for people living with a disability or mental ill health
 Correctional facilities
 General practices
 Community palliative care clinics and day centres

2. Hospital based Support 

 Inpatient palliative care beds

 Other inpatient beds (such as acute, subacute or other beds)
 Outpatient services, specialist rooms and other ambulatory clinics
 Intensive care units
 Emergency departments
 (PCC4U, adapted from PallIative Care Australia, 2020)

Whilst all of the above settings are available and from diagnosis may be discussed, it must
always be remembered that an individual  patient's journey is absolutely unique, as to are their
requirements and as such this can impact the settings where their needs can be best met.

Eastern Cooperative Oncology Group Performance Scale - ECOG Scale

(Azam, et.al., 2019)
The ECOG performance scale is one of the measurement tools used by Oncology and
Palliative Care Health Professionals to assess and communicate the level of their
patient's functions and ADL abilities.
Spend some time reviewing the dialog flip cards below to work through the ECOG
Performance Scale assessments and their descriptors of 5 different patients