………As the End Approaches

DR PRADEEP KULKARNI,
CONSULTANT, PALLIATIVE MEDICINE,
DEENANATH MANGESHKAR HOSPITAL, PUNE
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 WHAT HAS CHANGED ?

 ELDERLY – AGE FUNCTION

 YOUNG AND CHILDREN
 NON COMMUNICABLE
 COMMUNICABLE
 FAILURE OF MEDICAL
 NATURAL / SOCIAL EVENT TREATMENT
 EUPHEMISMS
 DEATH WORD ACCEPTABLE  FIGHT AGAINST
 ACCEPTANCE BY SOCIETY INEVITABLE
 HOME, BATTLEFIELD  NURSING HOMES
 NO END OF LIFE DECISIONS  DECISIONS , COUNSELLING

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WHAT WE SEE

ADVANCES IN MEDICAL
SCIENCES

ETHICAL ISSUES

GOALS OF CARE

MEDICALIZATION OF DEATH

MONEY SPENT , SUFFERING

 MEANING OF DEATH FOR
SENIORS

 PREVIOUS EXPERIENCES-
LOSSES
 MORE ACCEPTANCE-
EVENTUALITY, NOT TO
OTHERS, NOT IMMUNE TO
EMOTIONAL
CONSEQUENCES, SCARED
OF JOURNEY.
 TRAJECTORIES

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 NEEDS OF SENIORS NEAR END

 PHYSICAL- SYMPTOM RELIEF, NUTRITION, HYDRATION,

SHELTER
 SOCIAL- RELATIONS WITH FAMILY AND SOCIETY
 PSYCHOLOGICAL- FREEDOM FROM ANXIETY, FEAR,
AUTONOMY(SELF CONTROL), SECURITY.
 SPIRITUAL- MEANING OF LIFE AND DEATH, CONNECTEDNESS
TO OUTER POWER.

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 REACTIONS OF SENIORS TO
DEATH

 ACCEPTANCE- OPEN DISCUSSION

 RELUCTANCE- EACH DAY A VICTORY, PHOBIAS, ACCEPT

 DESPONDENCY- LONELINESS, DO NOT SOCIALIZE,SUICIDAL

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 COST OF EOLC

 74TH IN AFFORDABILITY –
QUALITY OF DEATH INDEX
 39 MILLION BECOME
POORER EVERY YEAR
 OUT OF POCKET 89%
 BELIEF OF DOCTORS-
INAPPROPRIATE CARE
 LACK OF AWARENESS PC
 DENIAL OF EOLC, TORTURE
 COST OF SUFFERINGS-
UNMEASURED

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 FIVE WISHES

 WHO SHOULD DECIDE MEDICAL DECISIONS WHEN I CAN NOT?

 WHAT KIND OF MEDICAL TREATMENT I WANT OR I DONOT
WANT ?
 HOW COMFORTABLE I WANT TO BE ?
 HOW I WANT PEOPLE TO TREAT ME ?
 WHAT I WANT MY LOVED ONES TO KNOW ?

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ADVANCE CARE PLANNING

 EARLY COMMUNICATION

 PROXY CAN BE CHOSEN

 PLACE OF CARE CAN BE CHOSEN

 UNNECESSARY INTERVENTIONS ARE REDUCED

 AUTONOMY RESPECTED
CONCEPTS IN ACP

 ADVANCE DIRECTIVE

 LIVING WILL

 DURABLE POWER OF ATTORNEY/PROXY AGENT

 DNR ORDERS/ POLST/ DNI/ DNH ORDERS

 PATIENT SELF DETERMINATION ACT

STEPS FOR ACP

 INTRODUCE THE TOPIC

 STRUCTURE THE DISCUSSION

 DOCUMENT THE PREFERENCES

 REVIEW AND UPDATE WHEN CLINICAL COURSE CHANGES

 APPLY DIRECTIVES WHEN NEEDED

TOPICS TO CONSIDER

 PAIN MANAGEMENT
 ARTIFICIAL NUTRITION AND HYDRATION
 CPR
 MECHANICAL VENTILATION
 BLOOD TRANSFUSION, DIALYSIS
 OTHER MEDICINES
ELICIT VALUES AND GOALS

 PAST EXPERIENCES

 PREVIOUS CONVERSATION

 ACP OF SPOUSE?

 FOCUS ON QOL OR LIVING LONGER?

 ICU/HOME CARE, MAY BE SOME RISK OF LIVING SHORTER

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 INDIAN WAY
WHAT IT MEANS

WHO CAN DO IT- SOUND MIND, VOLUNTARY

WHAT ARE ESSENTIALS- CLARITY, REVOKING, CONSEQUENCES

KNOWN

HOW TO RECORD- WITNESSES COUNTERSIGNED BY JMFC, COPIES

TO COURT REGISTRY, CORPORATION, PHYSICIAN, INFO TO
FAMILY

16 WHEN TO BE IMPLEMENTED- HOSPITAL, COLLECTOR

THE LEGAL POSITION IN INDIA

DECISION ON ARUNA SHANBAUG CASE IN 2011 HAD SOME LACUNAE

FIVE JUDGE BENCH-ON 9 MARCH 2018 COMMON CAUSE VS STATE

 LIVING WILL IS A VALID DOCUMENT
 LEGAL PROCEDURE IS TEDIOUS
 HOSPITAL COMMITTEE AND THE COLLECTOR ARE DECIDING
 TIME CONSUMING
 AT LEAST A STEP FORWARD
 ELICIT GROUP- END OF LIFE CARE IN INDIA TASK FORCE (ELICIT)
 RIGHT TO LIVE WITH DIGNITY, INCLUDES RIGHT TO DIE WITH DIGNITY
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)
 PLAN YOUR DEATH

 CONTROL OVER THE LIFE

EVENT

 REDUCE SUFFERING

 DIGNITY MAINTAINED

 PREFERRED PLACE OF CARE

 CAREGIVERS NOT STRESSED

 GRIEF CAN BE REDUCED

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 CULTURAL DIFFERENCE

WESTERN CULTURE INDIAN CULTURE

 TRUTH TELLING-FULL  TRUTH TELLING- PARTIAL
DISCLOSURE, CLARITY DISCLOSURE, AMBIGUITY
 DECISION MAKING-  DECISION MAKING-
INDEPENDENCE COLLECTIVISM

 CONTROL OVER DEATH-  CONTROL OVER DEATH-

WILLING ILL,
LIVING WILL EMPOWERS,
DISEMPOWERS ,LETTING LIVE
LETTING DIE
 DECISION MAKING-
 DECISION MAKING- INTERDEPENDENCE
INDIVISUALISTIC
 DISRESPECTS PATIENT
 LIVING WILL-RESPECTS CHOICES
PATIENT CHOICES
 INCREASES FAMILY CONTACT,
 REDUCES FAMILY CONTACT, STRESS, CONVERSATIONS
STRESS, UPHOLDS MAKE PATIENT FEEL CARED
AUTONOMY AND SUPPORTED

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 CAN READ

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 REFERENCES
 https://palliumindia.org/cms/wp-content/uploads/2018/
03/Euthanasia-supreme-court-Judgement.pdf

 https://www2.deloitte.com/content/dam/Deloitte/in/Doc
uments/life-sciences-health-care/in-lshc-ficci-elderly-car
e-noexp.pdf

 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5661351

 https://www.ohchr.org/EN/Issues/Torture/SRTorture/
Pages/SRTortureIndex.aspx

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 WHY POOR EOLC DELIVERY

 According to this report, poor quality of end of life care delivery in India is
secondary to poor government-led strategy towards national level
palliative care, shortage of specialist palliative care providers, limitation of
public funds, lack of availability of opioid analgesics, and finally, poor
public awareness about  the  availability and necessity of palliative and
end of life care.

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IT MATTERS
 Quality of life
 Very REALITY
subjective
perception
 Reflects gap
between
QoL
expectation EXPECTAT
ION
and reality
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 Cost of dying in India

Affordability of EOLC – India is 74th

Govt spends 2% of GDP on health,89.2% Indians
spend from pocket (2014 World Bank)
2011 Lancet article- 39 million Indians poorer every
year
Lack of awareness/ resources in palliative care
Cost can not be measured only by monitory loss
UN’s Human Right’s office 2013 Report- torture

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STEP-1-INTRODUCE THE TOPIC

 Allow adequate time and privacy

 Ask what patient knows-ever heard of living will?
 Explain-it’s helpful before taking decisions
 Do you feel comfortable to talk today?
STEP-2 STRUCTURE THE
DISCUSSION-5 WISHES

 Proxy when you cannot take decision

 What medical treatment you want or do not want?
 How comfortable you want to be?
 How you want people to treat you?
 What you want your loved ones to know?
Identify proxy decision maker

 Entrusted to speak for the patient

 Involved in all discussions
 Must be willing, able to take proxy role
 Interests should not clash-property etc
Educate patient and proxy

 Define medical terms

 Explain benefits, burdens of treatment
 This case-short term life support
 Recovery cannot be always predicted
 Any intervention can be refused
Elicit values and goals

 What makes your life worthy-QOL

 How would you like to spend your last days?
 What are your spiritual beliefs that might affect
treatment choices?
Use validated advisory documents

 EPEC guidelines- five wishes, living will

 Easy to use
 Reduces chances of omission
 Patient, proxy, family can take home
STEP 3-DOCUMENT PATIENT
PREFERENCES

 Review the advance directives

 Sign the documentation
 Put it in patient’s medical record
 Proxy should assist to provide copies to different medical
settings
STEP 4-REVIEW AND UPDATE

 Use clinical events as triggers

 As diseases advances allow evolution in patient
understanding and preferences
 Discuss and document the changes
STEP 5-APPLY DIRECTIVES WHEN
NEEDED

 Review the advance directives

 Consult with proxy
 Use ethics committee for disagreement
 Carry out the treatment plan
Common pitfalls

 Reluctant patient
 Clinician reluctant
 Proxy not involved in discussions
 Vague or non specific preferences
 Directives applied when patient is still communicative
 Family disagrees with patient decisions
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