END OF LIFE CARE

NURSING ISSUES
DR PRADEEP KULKARNI
CONSULTANT PALLIATIVE CARE, DEENANATH MANGESHKAR HOSPITAL
ROLE OF NURSES

Teacher- at home settings

Counsellor-open up,
emotional component
Caregiver- ADLs
Advocate for patient for
doctor/family
Messenger
Communicator/social
worker-home care
Caring of own emotions
DEATH IN MODERN MEDICINE
Advances in medical
sciences

Ethical issues

Goals of care

Preferred place of care

Medicalization of death
WHY TO LEARN

 Unfamilier decisions- science, illitracy

 Patient and carer

 Varied emotions- hope, denial, anxiety, uncertainity, loss

 Impact of patient care and grief

 Cost of care
LEARNING OBJECTIVES

 What is End of Life Care (EOLC)

 Palliative care and EOLC – The continuum
 What is a good death – principles and components
 The legal position in India
 The ethical principles of End of Life Decisions
 Medical futility
 Guidelines for EOLC process
 Symptoms
 Conclusion
TRAJECTORIES
DEFINITION

“Death is not extinguishing the light; it is putting out the

lamp because the dawn has come.” - Rabindranath
Tagore
End-of-life care is multidisciplinary team approach
toward “whole person 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.
CONTINUUM OF PALLIATIVE CARE

 Health care providers often perceive that palliative care referral is appropriate
only when patient is dying. Palliative care referral is best initiated early, often
at the time of diagnosis.
 Continuum of palliative care supports the patient and family during EOL phase,
process of dying and supports the family during the after death phase and
bereavement period.
STEPS INVOLVED IN EOLC
HOW TO DIAGNOSE EOLC

A ‘no’ answer to the question ‘would I be surprised if

the patient were to die in the next 12 months’
Two or more unplanned admissions in the last 6 months
Poor or deteriorating performance status
Persistent symptoms despite optimal therapy
Secondary organ failure arising from an underlying
condition
 MIGHT
LIVING DYING
DIE

Ceilings of Comfort
All active treatment active treatment Measures only
THE LAST YEAR OF LIFE

Amber Care after

death
 THE FIVE GSF GOLD STANDARDS
 Right people – identification of patients nearing the end of life

 Right care – assessing their needs: clinical & personal

 Right place – planning coordinated cross boundary care

 Right time – planning care in the final days

 Every time – embedding consistent good practice and identifying

areas to improve further
GSF ESSENTIAL Cs

 COMMUNICATE- BLUE, GREEN,YELLOW, RED

 COORDINATE
 CONTROL OF SYMPTOMS
 CONTINUITY OF CARE- OUT OF HOURS
 CONTINUED LEARNING
 CARER SUPPORT
 CARE AT DYING PHASE
SIX STEP APPROACH
 CORE PRINCIPLES FOR END-OF-
LIFE CARE

 Respect the dignity of patients, families, and caregivers

 Display sensitivity and respect for patient and family wishes
 Use appropriate interventions to accomplish patient goals
 Alleviate pain and symptoms
 Assess, manage, and refer psychological, social, and
spiritual problems
 CORE PRINCIPLES FOR END-OF-
LIFE CARE

 Offer continuity and collaboration with others

 Provide access to palliative care and hospice services
 Respect the rights of patients and families to refuse
treatments
 Promote and support evidence-based clinical practice
research
THE LEGAL POSITION IN INDIA
Court Judgement on 9 March 2018
 Living will is a valid document
 Legal procedure is tedious
 Hospital committee and The Collector are deciding
 Time consuming
 At least a step forward
 Doctrine of double effect
 Futility is acceptable to law
THE ETHICAL PRINCIPLES OF END-OF-LIFE DECISIONS

The four fundamental ethical principles are :

 Autonomy : Autonomy means respecting patient’s choices and
preferences. This translates in practice as the right of informed consent
or refusal
 Beneficence: Beneficence flows from the fiduciary obligation to act
always in patient’s best interests. While the disease can still be cured
or controlled, this obligation translates as the need to carefully weigh
the risks and benefits of any intervention.
 Nonmalfeasance : Nonmalfeasance comes from the doctrine of “first
of all do no harm.”
 Social justice : Social justice means allocating resources appropriate
to the medical condition of the patient in order to maximizetheir benefi
ts and minimize wastage. Futile application of therapies would clearly
violate this social obligation.
ALGORITHM OF EOLC
IS DEATH APPROACHING

 Sleeping for long

 Loss of appetite
 Loss of interest in surrounding
 Disorienation, confusion
 Cool skin, hand and feet
 Changing respiration
ETHICAL DILEMMAS

 IV FLUIDS
 CPR
 INOTROPES
 VENTILATOR
 FIGHT TILL END
 TERMINAL SEDATION
 ROUTES OF ADMINISTRATION
 PREFERRED PLACE OF CARE
MEDICALLY FUTILE/ INAPPROPRIATE

The idea of futility is not new. The famous Hippocratic corpus included
a promise not to treat patients who were “overmastered by their
disease.”
Various definitions and subtypes of futility

Physiological futility - Treatment that cannot achieve its physiological
aim

Quantitative futility - Treatment that has < 1% chance of being
successful

Qualitative futility - Treatment that cannot achieve an acceptable
quality-of-life, treatment that merely preserves unconsciousness or fails
to relieve total dependence on intensive care

Lethal condition futility - The patient has an underlying condition that will
not be affected by the intervention and which will lead to death within
weeks to months

Imminent demise futility - An intervention that will not change the fact
that the patient will die in future.
WHAT IS A GOOD DEATH – PRINCIPLES
AND COMPONENTS

 Components of a Good Death

 Pain and symptom management, clear decision-making,

preparation for death, completion, contributing to others, and
affirmation of the whole person
 Principles of a Good Death
SYMPTOMS AT END OF LIFE

 Pain
 Breathlessness
 Nausea, vomiting, reduced appetite, fatigue
 Urinary retention, incontinence
 Constipation
 Delirium, agitation
 Convulsions
COMMUNICATION

 Difficult situations- collusion, denial

 Communicating with patient/family

 Communicating in the medical team, with collegue and
doctors
 Record keeping
 Family meeting- same platform
BARRIERS TO COMMUNICATION

 Patient and family- misunderstanding, strong emotions

 Doctors- uncertainity, relation with patient, blame

 Circumstances- lack of privacy/ previous relationship

QUALITY OF DEATH INDEX

 Basic end-of-life
health care
environment (20
%weightage)

 Availability of end-of-
life health care (25
%weightage)

 Cost of end-of-life care

(15 %weightage)

 Quality of end-of-life
care (40 %weightage)
IT MATTERS
TAKE CARE OF YOURSELF

 To serve better for the society

 You have to take care of yourself
 Setting proper goals of care
 Communicate with the team
 Detached attachment
 END OF LIFE NUSING EDUCATION CONSORTIUM
 FRAGMENTED CARE
I
I WANT TO GO HOME
WANT TO GO HOME
T TO GO HOME

M IS
HYT
LUNG ILUNG INFECTION NEDS
S
TREATMENT
ION NEDS

FIFIGHT TILL END

SYMPTOMS

 PAIN
 FATIGUE, WEAKNESS, REDUCTION IN INTAKE, LOSS OF
WEIGHT
 BREATHLESSNESS
 COSTIPATION, URINATION
 BED SORES
 CHANGE IN APPEARANCE
 BED BOUND
GOOD DEATH

 KNOWS
 SYMPTOM CONTROL
 CONTROL OVER PLACE
 CHANCE TO SAY GOOD BYE
 FEW REGRETS/ RECONCILATION
 FAMILY ALSO COPES BETTER WITH BEREAVEMENT
 Barriers to Quality End-of-Life
Care

 Failure of healthcare providers to acknowledge the limits of

medical technology
 Lack of communication among decision makers
 Disagreement regarding the goals of care
 Failure to implement a timely advance care plan
 Barriers to Quality End-of-Life
Care

 Lack of training about effective means of controlling pain

and symptoms
 Unwillingness to be honest about a poor prognosis
 Discomfort telling bad news
 Lack of understanding about the valuable contributions to
be made by referral and collaboration with comprehensive
hospice or palliative care services
Guidelines for End-of-Life Care Process