Transcript End of life care education

End of Life Care Education
MODULE 1
Module 1
Introduction to Palliative Care
Learning objectives
 Why talk about it/Need
 How our patients are dying? Is dying costly in India?
 Palliative care and EOLC– The continuum
 What is good death/Principles and Components
 What is end of life care? Objectives, Principles
 Scope of palliative care in EOL
 Infrastructural requirements
 Barriers for EOLC provision
 Way forward
EOLC – End of Life Care
EOL – End of Life
Why talk about it
 Worldwide 377 adults/100,000 population and 63 children<15 years of
age need End of Life Care (EOLC) annually
 In India 1 million new cancer patients every year, 80% stage IV diagnosis
 Only 1/3 of patients who need palliative care have cancer. 2/3 have non
malignant cardiorespiratory illness, HIV etc.
 Emerging elderly population, 100 million elderly at present – cancer
incidence 11 times more likely in elderly
 Economic Intelligence Unit report on quality of death 2010 – India is the
worst place to die, Ranking 40 out of the 40 countries studied
 Human rights watch report 2009 – Unbearable pain – India’s obligation to
ensure palliative care – raises serious concerns about lack of palliative
care in India
Why talk about it
 World Health assembly 2014 recommendations – mandatorily Integrate
palliative and end of life care at all levels of health care
 Inadequate pain and symptom control and lack of access of essential
medications for same amounts to torture/cruel inhuman degrading
treatment (Special report of United nations 2013)
 Palliative care access very limited across India with exception to few
places
 Access to Morphine and other controlled substance for pain and
symptom relief extremely limited
 Public awareness on EOLC non existent
 Health-care providers have limited knowledge on EOLC provision and
only few centres have the infrastructure to support the same
How our patients are dying
 83% of healthy Indian population – prefer to die at home (Kulkarni et al
Pune study IJPC 2014) – but mostly they die in the hospital
 78% of patients with advanced illness in end of life phase in ICU left
hospital against medical advice (LAMA) due to lack of resources
 Almost all LAMA patients did not receive any form of symptom relief
measures in end of life period and died miserably
 Patients are dying in the wards and at home with no symptom relief,
health related communication or support
 Significant number of patients dying with advanced illness in ICU with
needless inappropriate interventions done – most of these patients
dying alone in pain and distress.
Is dying costly in India?
 >80% of health care spending in India is out of pocket
 In most of the cases, financial resources are spent on last few days of
life – mostly for high end needless medical interventions with no
outcomes
 Maximum amount of money is spent on investigations (usually done for
recording purposes only)
 Out of pocket spending pushes over 20 million patients into poverty every
year
 This requires a huge attitudinal shift among health care providers as
current medical education is based on Acute Model of Care (i.e.
Diagnose and Treat).
Palliative Care and End of Life Care – The Continuum
Palliative Care and End of Life Care – The Continuum
Disease
Management
Symptom
Control
Supportive
Care
Supportive
Care
Symptom
Control
PALLIATIVE CARE
HOSPICE CARE
Symptom
Control
END OF LIFE CARE
Palliative Care and End of Life Care – The Continuum
Transitions in life-limiting illness
Early
Disease
containment
Decompensation
Experiencing life
limiting illness
Maintaining
function
Transitions
DIAGNOSIS
Transitions
Dependency and
symptoms increase
Transitions
PALLIATIVE CARE
Time
Modified from McGregor and Porterfield 2009
Decline and
terminal
Transitions
Death and
bereavement
Transitions
EOLC
Palliative Care and End of Life Care – The Continuum
 End of life care cannot be initiated de novo. EOLC is an extension and
part of palliative care
 Entering the EOLC phase is a period of transition. Early and good
palliative care facilitates smooth transition
 Transition to EOLC involves recognition of EOL, EOLC decision making,
EOLC communication and initiation of EOL
 EOLC not only involves the immediate life before death but also involves
the process of dying, after death care and care in the bereavement
period.
What is good death? Principles
 To know when death is coming, and to understand what can be expected
 To be able to retain control of what happens
 To be afforded dignity and privacy
 To have control over pain relief and other symptom control
 To have choice and control over where death occurs
 To have access to information and expertise of whatever kind is
necessary
 To have wishes respected and have access to any special needs
 To have control over who is present and who shares the end
 To be able to leave when it is time to go and not to have life prolonged
pointlessly
Components of good death
Pain and symptom
management
Control of current pain and physical
symptoms and reassurance that future
symptoms like severe pain, extreme
shortness of breath, delirium etc. will be
promptly managed.
Clear decision making
Reducing the fear of pain and inadequate
symptom management through
communication and clear decision making
with physicians and empowering the families
in decision making.
Preparation for death
Helping patients know what they could
expect during the course of their illness and
helping them to plan for the events that
would follow after their deaths.
Components of good death
Completion
Knowing the importance of spirituality or
meaningfulness at the end of life and dealing
with faith issues, life review, resolving
conflicts, spending time with family and
friends, and saying good-bye.
Contributing to others
It involves acknowledging and making
provisions for a terminally ill patient to
contribute for the well being of the others.
This contribution can be in the form of
donations, sharing knowledge and
experience etc.
Affirmation of the whole
person
It involves affirming the patient as a unique
and whole person and not understanding the
patient from disease perspective, but
understand in the context of their lives,
values, and preferences.
What is end of life care? Objectives
End of life care is a multidisciplinary team approach towards total care for
people with advanced, progressive, incurable or life limiting illness so that
they can live as well as possible before they die. The process of care is not
just limited to the person who is dying but extends to his/her families and
caregivers.
Objectives of end of life care
 To achieve a ‘Good Death’ for any person who is dying, irrespective of
the situation, place, diagnosis or duration of illness.
 Emphasis on quality of life and quality of death.
 Acknowledge that good end of life care is a human right, and every
individual has a right to a good, peaceful and dignified death.
Principles of EOLC
 Family/Care givers should be prepared, educated and feel supported
 Care givers should be involved and empowered to provide EOLC
 Health care providers should be accepting and anticipating that patient is
dying and willing to provide EOLC
 Achieve good control of pain and physical symptoms
 Preferred place of care should be respected.
 Preferred place of care should be safe and secure with few crises.
 Health care providers should feel comfortable, confident and should be
able to foster a sense of teamwork.
Scope of palliative care in EOL
 Relief of end of life symptoms such as pain, dyspnea, delirium, and
respiratory secretions.
 Review of existing care protocols (medical/nursing)
 Review of medication chart and stopping unnecessary medication
 Stopping routine and unnecessary investigations that may not contribute
to the process of care
 Continued communication throughout the process
 Counseling regarding optimal hydration and food intake
 Psychosocial support to patient, family and caregivers
 Meeting special family requests (religious/spiritual/cultural)
Infrastructural requirements
Policy
 Presence of a guiding hospital policy
 Awareness and implementation of policy
Space and staff
 Specially allocated area in the hospital
 Since room for privacy
 Round the clock staff
Education/Training
 Education to doctors, nurses, social workers and all involved health care
professionals on end of life care and end of life care pathway
 Hands on training and mentorship to junior staff
Infrastructural requirements
Documents
 End of life care pathway (structured and tailor made to suit individual health
care setup)
 Standardised forms on withholding and withdrawing life support
 Patient information leaflet on end of life care
Special support
 Contact details of religious leaders to meet end of life religious needs
 Clinical psychologists to meet extreme grief reactions
 Contact details of funeral directors/undertakers to facilitate after death care
 Contact information of embalmers/body transfer ambulances etc.
Barriers for EOLC
 Physician associated barriers
Lack of EOLC knowledge, Treating EOL patients acutely and
inappropriately, Fear based practice, Economic incentives
 Legal/Policy barriers
Lack of national/institutional policy, Lack of clear legal framework
 Societal barriers
Prevalent social and cultural norms. Social acceptance
 Patient/Family barriers
Constant search for cure, non acceptance of EOLC concept/philosophy
Way forward
 Advocacy for End of Life Care
Advocacy at various levels to improve access to good EOLC and advocate
for dignified death for all patients with life limiting illness irrespective of
situation or diagnosis
 End of life care policy
Work towards a national end of life care policy and suitable/effective
legislation related to issues in EOLC. Encourage hospitals/health
institutions to have institutional EOLC policy.
 Process of end of life care
Create standard EOLC user manual, standard EOLC policy appropriate to
Indian socio-cultural context and develop algorithms for management of
EOL symptoms
Way forward
 Implementation of EOLC at grass root level
Palliative and EOLC to be part of all hospital and home based programs.
EOLC to be incorporated in management non-malignant conditions and HIV
 Developing EOLC standards
Ensure quality EOLC through creation of suitable EOLC training programs,
manuals and tool kits and monitor implementation of these standards
through national/international accreditation agencies.
 EOLC Education
All health care professionals involved in direct patient care should undergo
mandatory EOLC certification program. EOLC education to be part of
UG/PG health curriculum
THANK YOU
This education program is a joint initiative of Indian Society of Critical Care
Medicine and Indian Association of Palliative Care. 2014
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