Living Will and Advance Care Planning: Lessons learned from the rest of the world. The document discusses the importance of advance care planning and living wills. It notes that most people prefer to die at home, but in reality 70-80% die in hospitals. The document advocates for giving patients more control over their last days through tools like living wills and appointing healthcare proxies. It explains how advance care planning works in other countries through conversations with medical providers and family to document end-of-life wishes that can guide treatment if one loses decision-making capacity. The document urges starting such conversations early and making multiple copies of living wills to ensure wishes are respected.

1. Living Will and Advance
CarePlanning:
Lessons learned from the
rest of the world!
By R.Sivasailam

2. But nothing
has
changed...

3. My realization
As a citizen: I would have no control over my
own last days
A Doctor said : I could not help my patients till
the last….
•‘Ab main kuch nahin kar sakta!’
•Something was missing in my professional capabilities:
•Curative medicine seeks to return patients to their own
lives, so that they might independently pursue their own
priorities and do so in the manner of their choosing.
•Palliative medicine seeks to assist patients in leading their
lives and to support them in the pursuits they wish to
prioritize in the time that they have left.

4. Think of a
memorable
journey: Would
you like to plan it?
Would you want
info like how to
travel, hotels, etc?

5. NOW THINK OF THE LAST MILE
JOURNEY OF YOUR LIFE:
WHAT DO YOU WANT YOUR
ILLNESS EXPERIENCE TO BE LIKE?

6. A Changing India in a Changing World

7. A hugegovernment
apartment complex
in Tokiwadaira,
Japan, has become
known for
‘Kodokushi’ or
lonely death:
a Japanese
phenomenon of
people dying alone
and remaining
undiscovered for a
long period of time.
(New York Times,
30 Nov, 2017)

9. 90% of us want to die
at home in our own
bed, but in reality, 70-
80% die in hospital

10. The biggest worry?
Dying with pain and
suffering?
"I am not afraid of death. I just
don't want to be there when it
happens.”
Woody Allen, 1975

11. A Living Will
How can we prevent that
from happening?

12. After the age
of 50 years,
less than 10%
people die
suddenly

13. People in
their 60s
’water fall
trajectory’
Cancer…..
About 20%
of all deaths

14. People in
their
70s….
’looping
trajectory’
Bad Diabetes, BP;
kidney/heart/lung/liver
failure: About 15%

15. People in
their
80-90s...
‘dwindling
trajectory’
About 50% of
us: Old age,
Frailty,
dementia

17. For about 85-90 % of us, death
is predictable: some weeks or
months before it occurs

19. India(67):
Not a Country
to Die In….

20. Three major
problems:
• Weare not willing to talk about death:
• Lost opportunity for last wishes
• Lost opportunity for ‘Life Review’: emotional settling of accounts
• Our laws do not permit patients and families to take control:
• Doctors are scared of making decisions to withdraw futile care
• Legal system is worried about misuse
• Default option is to continue till the bitter end.
• Wehave poor access to systems that control suffering at the end:
• Morphine for physical pain
• Professionals who can address ‘total’pain

21. APSHAKUN!
From the time of the
Mahabharata till
today…
Yaksha: What is the greatest wonder?
Yudhishthira: Day after day countless
creatures reach Yama’s abode, yet
those that remain behind believe
themselves to be immortal. What can
be more extraordinary than this?
• Yaksha Prashna: the Story of the Righteous Crane;
Mahabharata, Aranya Parva, 311-12.
http://themathesontrust.org/library/33-questions.

22. Think of the last journey of your life:
1. Who has the information?
2. Who is planning?
3. Whose responsibility is it to plan?

23. Who has the information?
Foreseeing and Foretelling was
always the doctor’s responsibility
?

24. For a a Doctor:
Patients expect them to prognosticate
(foresee and foretell)
Honestly
Accurately
And
Optimistically…….
This can be a difficult triad.

25. “Usko mat batao” is rubbish that Doctors allow
because most Doctors are not trained in the
skill of delivering bad news.
And patients/family/community need to
understand: Honesty really is the best policy!
Depression and anxiety worsen
with concealment and collusion.

26. For any doctors here, and their patients
• Three triggers not to miss: that somebody is in their last year/s
• I. The Surprise Question: “Would you be surprised if this patient were to die in
the next few months, weeks, days?”
• Intuitive answer based on clinical features, social factors, comorbidities, etc
• II. General indicators of decline: often not obvious to patient/carers!
• Functional deterioration: eg bed or chair bound >50% of day
• Increasing needs eg for support in self care
• Choice for no further active care: eg decides against dialysis
• III. Specific indicators linked to diagnosis
• Eg lung disease (COPD): FEV1 <30% predicted,
• Error rate of 30%: linked to diagnosis, predicted duration, years of clinical
experience (not qualifications!)
• 100% answers are not possible: We all have to Accept uncertainty

27. The destination cannot
be changed.
But decisionscan still
be made about what
the journey should be
like.
And it needs you to be
aware and to take
charge.

28. A Good Death…...
• To know when death is coming and to understand what can be expected
• To have time to say goodbye and control the timing;
• To be able to leave when it is time to go and not to have life prolonged
pointlessly
• Control, dignity, privacy
• Choice and control over where death occurs and in whose presence
• To be able to issue advance directives, ensuring that one’s wishes are
respected
• Pain relief and other symptom control
• To have access to spiritual and emotional support and hospice care

29. https://indianexpress.com/article/express-sunday-eye/naseeruddin-shah-irrfa
n-khan-death-6390360/
“It is
astounding
that such a
frail body
can house
so much
pain”
“How many people have
the chance to observe
death coming at them?
I am lucky that I can see
this thing approach and I
can greet it.”

30. From the statement by his family:
“He remained jovial and determined to
live to the fullest right through two years
of treatment across two continents.
Family, friends, food and films remained
his focus and everyone who met him
during this time was amazed at how he
did not let his illness get the better of
him. He was grateful for the love of his
fans that poured in from world over. In
his passing, they would all understand
that he would like to be remembered
with a smile and not with tears.”
(Rishi Kapoor,
4 Sept 1952-30 Apr 2020)

31. If you can speak coherently,
you decide and
yourchoices and
decisions come first!

32. Making decisions requires Decision Making Capacity(DMC)
•Essential informed consent
•Doctors assess every patient’s DMC instantly & informally
every day
•Can be assessed formally
•A person has DMC if she can:
1. Describe current situation or illness
2. Describe consequences: of Accepting or Declining a
given treatment
3. Demonstrate judgment: choose between options

33. Loss of Decision making capacity
•Typically:
•Once the dying process (‘active dying’) begins:
hours to days
•Cancer: for Days to weeks before death
•Organ failure: Days-weeks-months
•Dementia: early: FAST stages 2-4: 10-15 years
before death

34. Does that mean that you will
lose control in the end?
Not if you plan for
Living wills
Advance Medical
Directives (AMD)
Advance Care
Planning(AMC)

35. AUTONOMY
•I have the right to determine my own future:
•To accept or decline any therapy
•To decide who decides for me
•Is this absolute? A Westernconcept
•Asian: Relational autonomy or Swa-dharma

36. The First Decision
•I decide
•Versus
•I decide who decides
•Versus
•Avoid all discussion or decision making =
Suffering by default!

37. I Decide
Vs
Let others
decide
Decision making styles of
seriously ill male veterans
for End of Life Care
Braun et al. Patient
Education and Counseling
2014; 94:334-341

38. I Decide
Vs
I cannot decide,
It is too painful,
Let others
decide
Decision making styles of
seriously ill male veterans
for End of Life Care
Braun et al. Patient
Education and Counseling
2014; 94:334-341

39. So if possible: think of three people who can accept this
responsibility and are available:
Put them in sequence
• First decision maker
• Second decision maker
• Third decision maker
But remember this is not a committee
They can talk to each other
But only one person decides

40. What if something
happens to both
together: for
instance in a car
crash?
And then neither
can speak for the
other…

41. Next Decision: Location of Care
Hospital
•Acute care, which
means ICU
•Lights on constantly
•Continuous noise
•Strange, masked people
doing painful things to
you!

42. “Life Saving Treatments”
You have the right to refuse any or all of them
❖ In many patients, these do save lives but
in many others, they only prolong the
dying process.
❖ These include:
➢ 1. IV fluids and medications including
antibiotics
➢ 2. Artificial tube feeding
➢ 3. Dialysis
➢ 4. Artificial respiration ie: Ventilator
➢ 5. Chemotherapy
➢ 6. Cardio-pulmonary resuscitation

43. Next Decision: Location of Care
•Hospital:
•Acute care means ICU
•Hospital wards: with clear instructions not to go to ICU if
family cannot manage at home and hospice is not available
•Extended Care Facility
•Assisted living
•Hospice (currently usually available only for cancer)
•Home
•World wide, when surveyed, the overwhelming majority (about
90%), prefer home!

44. My choice…
At my home sweet
home in Chennai

45. Is it possible to
pass away
comfortably at
home?
Yes, it is…

46. Both Barbara and George
Bush died in their own
beds, surrounded by their
family!
How did they manage
their last days so
smoothly?
Because they took charge
of their last days, and their
system worked for them!

47. Is it possible to
pass away
comfortably at
home?
Yes, it is…
Hospice/Palliative
care at home is the
norm in rural
Kerala
On Home
PallCare
rounds---
with DrAnil
Paleri IPM,
Calicut

48. But if you say home: who will do the ‘sewa’?
•Who will provide care:
•1 of 3 or all daughters – may lose the future
•Cost of providing care:
•USA: Extended Care Facility: $ 70-100k+ per year
•In middle class India: Rs 6-12 lacs per year, at home
•Bankruptcy or impoverishment
•For Dementia: duration is 10 years plus!

53. This document is available on:
1. Vidhi:
<https://vidhilegalpolicy.in>
2. Pallium India
<https://palliumindia.org>
3. Indian Association of Palliative
Care
<https://www.palliativecare.in>
Or search for
“Living will”
“Vidhi/Pallium/IAPC”

54. The living will is now just a
document…
Aprocess and a system is needed to
make it effective.

55. How come we readily import latest
medical technology, but not this
system?
How does this system work in the
USA, Australia, UK, etc……

56. The system is called
Advance Care Planning (ACP)
Aprocess to guide decision
making about your health care,
if and when you do not have
capacity to decide for yourself

57. Advance Care Planning: Two components
•Proxy Decision Maker:
•Power of Attorney for Health Care (PoA-Hc)
•Guidance for the PoA-Hc: Advance Directive
•What type of life
•What level of care
•What you hope for in the face of illness
•‘Living Will’

58. How to do ACP?
•Begins with Conversation between:
1. You
2. Your family &/or PoA-Hc
3. Your health care providers
4. Facilitators/Counsellors
•Include in your medical record
•A system to see that this is acted upon

59. https://theconversationproject.org

60. How is ACPused?
•If and When you lack capacity to be your own
decision maker:
•Living will/Advance directives provide guidance
for:
•Your surrogate/healthcare power-of-attorney
and your family
•Your health care providers/doctors

61. If there is no decision and/or
decision maker…….

62. Your doctor looks for a Surrogate Decision Maker
if there is no Power of Attorney for Healthcare
•As of now: convention, no legislation.
•What about other jurisdictions: example from Ohio, USA
1. Court appointed guardian
2. Spouse
3. Adult child or majority of available adult children
4. Parents
5. Adult sibling or majority of available adult siblings
6. Nearest adult not described above, who is related to
you by blood or adoption and is available

64. The Supreme Court has
authorized us to appoint
a Surrogate Decision
Maker as part of the
Advance Medical
Directive

65. When to make LW/AMD or do ACP?
•Trigger events:
1. New diagnosis
2. Hospitalization
3. Change in care needs
•ANYTIME!
•”It always seems too soon, until it is too late”
ZDoggMD

66. For everyone,
young and old:
Catastrophic
Brain Injury

67. Advance Care Planning for the Healthy?

68. Advance Care Planning for the Healthy?

69. For
seniors:
If anything
bad
happens

70. AFTER THE AGE OF 60YEARS
WITH ANY NEWDIAGNOSIS

71. When the
end is near:
expected
survival of
one year or
less….

72. Physician Orders for Life Sustaining Treatments
Or POLST
https://polst.org

74. Mathur et al.
Indian J Med Res 151,
April 2020, pp 303-310

76. What if I change my mind?

77. Advance medical directive and
Healthcare Power-of-Attorney
can be revoked instantly and
orally also!

78. Bringing ‘Protection of life and
Personal Liberty’ ----Art 21of the
Constitution of Indiainto the
21stcentury:
Three Supreme Court judgments
•Privacy - Puttaswamy (24 Aug ‘17);
•Health autonomy- Common Cause (9 March ‘18)
•Sexual choice - Navtej Singh Johar (6 Sept ‘18)

79. Problems with “Common Cause“ Judgement:
9 March 2018
•Prescribed procedure:
•Not as per international practice
•Advance Medical Directives:
•Applicable only to terminal illness
• hence of no use for Schumacher like situations!
•Signed before JMFC
•Preserved in District Court,
•Informed to family (privacy?)
•No mention of enforceability:
•What if a doctor refuses to acknowledge Living will?

80. In this uncertain situation,
what can you and I do?

81. Start talking!

82. “Yeh baat to kabhi kari hi nahin!”
(a patient’s wife,)
“Everybody is hungry for honest
conversations about death”
(Dr Lucy Kalanithi, TOI interview, Feb 2016)
“It is always too early, until it is too
late……”
(Dr Zubin Damania, ZDoggMD)

83. How to make a valid Living Will/Advance
Medical Directive
•Begin by speaking to those close to you;
•Choose your surrogates/Health Care Power-of-Attorneys;
•Confirm that they accept the responsibility, understand your wishes
and will follow them…..
•Decide whether they can have any discretion or not
•Make an Advance Medical Directive
•It has to be signed in front of two witnesses
•Try to get this signature in the presence of and attested by a Judicial
Magistrate First Class

84. How does this become valid
elsewhere in the world?
•One or two witnesses only are required
•Generally no need for attestation of signature
•If at all: a Notary Public
•If you can’t get a JMFC, at least complete the
rest of the process (speaking, choosing,
writing, signing).

85. Make multiple copies & Inform everybody
•Multiple copies
•Medical records
•Surrogate/Healthcare PoA, Family, Doctor
•On the fridge
•Inform everybody who needs to know
•Surrogates
•Family,
•Family doc
•On admission for any procedure

86. SHOW IT TO EVERY DOCTOR
YOU CONSULT:
1. You will find out if s/he is willing to accept it
and support you
2. S/he will tell you (or find out) their hospital’s
policy: so you will know where to get admitted
in an emergency
3. S/he will know your wishes

87. Cutting the Gordian knot of End-of-Life care
•Complex situation
• Ethics, Legislation,
• Politics of health care systems, Medical Economics
• Complex medical decision making
• Individual human suffering
•Whose responsibility?
• Government/Civil society
• Medical profession/Legal profession
• Everybody’s business is nobody’s business!

88. Be the Change
you wish to
see in this
world……Start
Talking and
taking action