30/09/2023

Trend and Issues in Palliative

Care Development
Hana Rizmadewi Agustina
Departemen Keperawatan Dasar dan Anak
Fakultas Keperawatan Unpad
Email: hana.rizmadewi@unpad.ac.id

FAKULTAS KEPERAWATAN UNIVERSITAS JEMBER

30 SEPTEMBER 2023

Content
Historical development

Palliative Care Core Competencies

Palliative Care Education

Palliative care Research

Barriers and enablers

Conclusion and recommendation

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Short Bio
Name Hana Rizmadewi Agustina, S.Kp, MN, PhD
Institution Department of Fundamental and Pediatric Nursing
Faculty of Nursing Universitas Padjadjaran
Formal Bachelor of Nursing (Universitas Padjadjaran)
education Master of Nursing (Monash University, Australia)
PhD in Nursing Studies (University of Nottingham, United Kingdom)
Training End of Life Care Nursing Education (ELNEC) - 2012
background Basic and Intermediate Palliative Care – 2014
Joanna Briggs Institute of Comprehensive Systematic Review Training - 2015
End of Life Care and Palliative Care Curriculum (EPEC) – 2019
Joanna Briggs Institute of Scoping Review Training - 2021
Research Nursing education, curriculum development, palliative care, end of life care,
interest quality of life
Professional Indonesia National Nurses Association (INNA) of West Java Province
organisation International Association of Hospice and Palliative Care (IAHPC)
Asia-Pacific Palliative and Hospice Care Network (APHN)

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Life is pleasant
Death is peaceful
It’s the transition that’s
troublesome

(Isaac Asimov)

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The suffering of death

• During the long and painful process of dying, Ivan dwells
on the idea that he does not deserve his suffering
because he has lived rightly.
• If he had not lived a good life, there could be a reason
for his pain; but he has, so pain and death must be
arbitrary and senseless. As he begins to hate his family
for avoiding the subject of his death, for pretending he is
only sick and not dying, he finds his only comfort in his
peasant boy servant, Gerasim, the only person in Ivan's
life who does not fear death, and also the only one who,
apart from his own son, shows compassion for him. Ivan
begins to question whether he has, in fact, lived a good
life.
• In the final days of his life, Ivan makes a clear split
between an artificial life, such as his own, which masks
the true meaning of life and makes one fear death, and
an authentic life, the life of Gerasim.

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Masalah pada perawatan pasien

terminal
Comorbidities ‘Medicalisation of
Prognosis Tenaga dying and death’
Kualitas hidup Kesehatan Pengetahuan dan
Kesiapan Pasien keterampilan
Peran dan
tanggung jawab
profesi
Koordinasi
Keluarga
Keinginan/harapan
Informasi
Dukungan
Sosial-ekonomi

Kompleksisitas (complexities) dan

Ketidakpastian (uncertainties)
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Dying Trajectory

A steady, almost CHF, COPD, ESRD The decline is very

linear, functional More difficult to judge gradual, but final
decline that is due to decompensating symptoms of
frequently and complications dysphagia
Development of
Rapid decline is often decubitus skin
Accompanied by followed by breakdown
cachexia, anorexia, improvement from
Aspiration pneumonia
tiredness, and other treatment
accompany such
symptoms frailty

(Downing, 2015; Geri-EM, 2013)

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Perinatal Death Loss

Communicating with families

Palliation versus termination of pregnancy

Withdrawing or withholding life support

Supporting parenting and grieving

The grieving process

Siblings

After-care

Counselling and other therapeutic interventions

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Definition of Palliative Care

"An approach that improves the quality of life of patients and their families facing
problems associated with life-threatening illnesses through prevention and relief
of suffering by early identification and impeccable assessment and treatment of
pain and other physical, psychological and spiritual problems” (WHO 2002)

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TOTAL PAIN MODEL

(Saunders, 1978)
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Quality of Dying and Death

• Moral values during caregiving
• Preservation of human dignity as
a patient right and professional
ethics
• Belief in the dignity of self and
others
• Consideration of culture in
providing EOLC

(Kim et al., 2015)

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Palliative Care Development

1960 ‘s – 1980’s 1990’s 2000’s

• Modern hospice • Old palliative • Supportive care
movement care model • Palliative care
• End of life care

• Palliative care aims to improve the quality of life of people with life-limiting conditions and
their families, not only by treating their physical symptoms but also by attending to their
psychological, social and spiritual needs.
• Palliative care is applicable for people of any age and may be integrated at any point in the
disease trajectory from diagnosis through the continuum of care to bereavement (WHO,
2009)
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Model of Services
Terminal care

Curative care (diseases-specific,

Palliative care
restorative)
TREATMENT

Time

Curative care/
Supportive care
Palliative care
Bereavement
Supportive, symptom-oriented

Diagnosis Dying Death

END OF LIFE CARE
(Lynn et al, 2003; McKean et al, 2010)
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(Adopted from www. caresearch.com.au)

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Palliative care Hospice care

• The term palliative care is a • The term hospice care
broad concept since it includes
the management of the physical
usually refers to a special
psychological, social, spiritual, type of comprehensive
and existential needs of palliative care provided
individuals with the advanced during the last 6 months of
disease without reference to a life and is often linked to
specified life expectancy of the
patient
the specific programs
offered under the Medicare
• Palliative care is focused on the
treatment of conditions that are
hospice benefit.
life-limiting or refractory to
disease-modifying treatment

Effective end-of-life care includes both

palliative and hospice care
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Person and Family Centred Care

• Dignity and respect Dignity and
respect

• Information sharing
• Partnerships and
participation
Person
• Collaboration Collaboration
and Family
Centred
Information
sharing

Care

Partnerships
and
participation
Source: http://westernhealth.nl.ca/home/clients-patients-and-
visitors/person-and-family-centred-care-pfcc/

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• Patient as a partner
• Uniqueness and
• Person-and individual preferences
• Family- • The climate of
• Centred ‘partnerships’

• Care • Patient values and

references in clinical
decision making

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(Adopted from NHS England, 2015)

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Person Centred Care in EoLC

(Adopted from NHS England, 2015)

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Intervention

Palliative End of life

After death Bereavement
symptom care at
care care
management bedside

• Pain management • Comfort care • Last offices rites • Interaction

• Dyspnoea • Hygiene • Health and safety • Information
• Oedema • Continence care issues provision
• Fatigue • Wound care • Documentation • Cause of death
• Nutrition • Spiritual care • Transfer the body • Impact
• Hydration • Dignity therapy • Post-mortems • Bereavement
• Delirium • Organ and tissue process
(Fonseca et al, 2012; donation
(Virdun et al, 2015; NICE, 2015) • Viewing the body (Hewison et al, 2020)
NICE, 2015)
(Johnston, 2016;
NICE, 2015)

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Level of Palliative Care Development

(Clarks et al., 2020)

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(Clarks et al., 2020)

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(Clarks et al., 2020)

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Status of palliative care and

end of life care in Indonesia

Family and
relatives caring
for the dying and
Mortality rate:
dead.
infection (20%); Hospice and
degenerative bereavement
diseases, HIV/AIDS,
services do not
Cancer (70%);
formally exists.
injuries and others Nurses have low
(8%) score of palliative
care knowledge and
attitudes towards
caring for the dying
patients and their
Palliative care was families.
introduced in 2007,
but end of life care
has not become a
priority in health
care settings.

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Barriers and Enablers in PEOLC

• Perception of • Communication
‘dying’ and and relationships
‘death’ • Culture, religion
• Knowledge, and spirituality
attitudes and • Care coordination
skills
Personal Professional

• Facilities and • Health system

access • Personal and
• Integrated care professional
pathway development
• Well-being • Community
support empowerment
Organisational Policy

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Why need PC education?

Palliative care and end of Palliative and end of life
life care has not become a care has been incorporated
priority for those who into a new curriculum of
need the services in the undergraduate nursing
majority health care education in Indonesia.
settings particularly in However, care of the dying,
lower-middle income dead and bereaved are less
countries emphasised.

Established core
competencies and
curricula from western
Educator needs to
countries may not reflect recognise the needs of
culture, beliefs, values and learners and their own
the actual needs of needs both theory and
stakeholders in non- practice of palliative
western countries. care.

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Core Competencies
• Communication and interpersonal skills
• Holistic assessment and care
management
• Professionalism
• Cultural and spiritual sensitivity
• Patient focuses and family centered care
• Personal and professional development

(Connolly et al., 2014)

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Curriculum issues
• There are several similarities between general competencies in national undergraduate
nursing curriculum and the international core competencies.
• The profile of undergraduate nursing students focuses on the role as a care provider,
educator, manager, advocator and researcher.
• No description about self-care management to prevent or manage themselves from any
potentials emotional problem and how it can impact their professional roles and
responsibilities.
• The term of ‘palliative care’. ‘end of life care’, ‘hospice care’ has reduce the possibilities of
rejections from family members.
• It is recommended to conduct gap analysis to explore the extent of core competencies are
translated into curriculum and how this could be achieved during academics and clinical
learning periods.
• Conducting a gap analysis is essentials in order to explore the extent of core competencies are
translated into curriculum and how this could be achieved during academics and clinical
learning periods.
• Institutions needs to identify consensus among nurse educators regarding core competencies
and curricular components that should be embedded in the generic curriculum.

(Agustina et al., 2021)

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Curriculum content
No. Domain of Competencies Sub Competency

1 Knowledge Knowledge about palliative care and end of life care

Philosophy of dying and death

2 Ethics and values Moral, ethics and legal aspects related to palliative and EoLC

3 Psychosocial-cultural-spiritual Psychological, social, cultural and spiritual issues of patients and

families
4 Personal and professional Recognising self and others

5 Communication
6 Management of symptoms
7 After death care
Professional accountability
Effective communication with dying patients, family, and other
health professionals.
Care provision during the dying state
Care provision after death

8 Bereavement support Caring the bereaved family

(Agustina et al, 2017)

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Conceptual Framework of Curriculum Approach

(Agustina, 2021)
• Knowledge
• Communication and
relationship
• Practice-based skills
E nabling
• Professionalism Competency
• Existential skills

• Learner centred
• Support
• Mentoring and
Professional Negotiated • Integration of
learning
supervision
• Boundaries
• Reflexivity
RElationship teaching and
learning
• Engagement in
learning
• Authentic
assessment

• Continuing

SUpport education
• Interprofessional
education
empowerment • Facilities and
access
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Practice Considerations
• Some things cannot be “fixed”
• Therapeutic presence
• Realistic views
• Early detection
• Reconceptualised ‘healing’
• Quality of life
• Interdisciplinary approach
• Personal and professional development

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COMPASSIONATE PRACTICE
• Compassion for patients and for
professionals’ self-care can be
trained and implemented top-
down (institutional policies) and
bottom-up (compassion
training).
• Compassionate communities’ is
an important emerging
movement that complements
regular healthcare and social
services with a community-level
approach to offer compassionate
care for people at the end of life.

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The URGENCY of Self-care

Problems experienced by family caregiver of “dying patients are not the real
EoL patients at home care settings problem” (Vachon, 1987)
Worsening conditions leads to higher
dependency

Health practitioners provides necessary support

(physical and psychosocial care)

Feeling ‘not good enough’ when delivering care Emphasises that the dynamics of
for end of life care the workplace play a major role in
a practitioner’s sense of wellbeing
Professional capacity – Knows how to and
when needs referrals (Crawford & Price, 2003)

https://www.mja.com.au/journal/2003/179/6/team-working-palliative-care-model-interdisciplinary-practice

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(Ho et al, 2017)

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Palliative Outcome Measures

• Quality of life of patient • Home death
• Quality of dying and death • Health care costs
• Quality of life family and
loved one
• Patient’s satisfaction
• Length of life • Family’ satisfaction
• ICU referrals • Health professional’s
satisfaction

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Benefits of PFCC

Hsu N-C, Huang C-C, Chen W-C, et al. (2019) Impact of patient-centred and family centred care meetings on intensive
care and resource utilisation in patients with terminal illness: a single-centre retrospective observational study in Taiwan.
BMJ Open 2019;9: e021561. doi:10.1136/ bmjopen-2018-021561

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Conclusion
• Professional development
• Curriculum development
• Research and evidence-based practice
• Holistic approach
• Dignified and compassionate care
• Roles and responsibilities
• Communication and coordination
• Shared decision making
• Community empowerment
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Source: https://journalofethics.ama-assn.org/

‘Every moment matters for us’

Matur Nuwun Sanget

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