1. To understand the circumstances and consequences of terminal illness and death. 2. To understand grief in the context of impending death- both in the aware patient, the caregiver and loved ones 3. To explore the understanding of death across cultures 4. To develop relevant skills in dealing with death in clinical situations, with specific reference to dementia

1. DEATH & DYING: CLINICAL & PHILOSOPHICAL
- PERSPECTIVESIN THE ERA OF DEMENTIA
Ennapadam S. Krishnamoorthy
MBBS, MD, DCN (Lond), PhD (Lond), FRCP (Lond, Edin, Glas), MAMS (India)
Founder- NEUROKRISH & TRIMED
Adjunct Professor- Public Health Foundation of India
esk@neurokrish.com @neurokrish

2. Objectives
• To understand the circumstances and consequences of terminal
illness and death
• Example of dementia as a terminal illness
• To understand grief in the context of impending death- both in the
aware patient, the caregiver and loved ones
• To explore the understanding of death across cultures
• To develop relevant skills in dealing with death in clinical situations,
with specific reference to dementia
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3. ISSUES IN END-OF-LIFE CARE
• Difficult to define end-stage dementia consistently
• Dementia is not viewed as a terminal illness: death attributed to
physical illness
• Lack of effective health care policies specifically for dementia, as well
as terminal illness as a whole.
• Choosing the right place: Hospital, Hospice or Home?
• Care-giver burden
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Sachs et al., (2004). Barriers to excellent end-of-life care for patients
with dementia. J Gen Intern Med, 19, 1057–1063.

4. STAGES OF DEMENTIA
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FROM: Hospice Care for Patients With Advanced Progressive
Dementia. Eds. Volicer, L & Hurley, AC (1998).
Springer Publishing Co Inc. New York. page xii

5. END-STAGE DEMENTIA
• MEDICARE, U.S.A 1996:
• Death within 6 months of diagnosis of end-stage
dementia
• Criteria:
• Incontinence of bowel and bladder
• Inability to ambulate or dress without assistance
• Inability to speak more than 6 intelligible words in an average
day
• Progressive weight loss of 10% body weight over the
preceding 6 months
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Standards and Accreditation Committee:
Medical Guidelines Task Force of the
National Hospice Organization. Medical
Guidelines for Determining prognosis in
selected Non cancer Diseases. Vol. 2.
Arlington, VA: National Hospice
Organization; 1996.

6. ADVANCE CARE DIRECTIVES
• Advance care directive (ACD): living wills, power of
attorney
• Tough decisions regarding medical interventions to
prolong life!
• TO DO, OR NOT TO DO?
• Cardio-pulmonary resuscitation
• Renal dialysis
• Tube feeding
• Using antibiotics for opportunistic infections
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7. ADVANCE CARE DIRECTIVES
• Factors affecting advance care planning
• Religious beliefs
• Acknowledgement of a terminal illness
• Psychological trauma of discussing death openly
• Ability to Trust executor of ACD
• Ability of individual to make informed decisions
• Lack of ACD associated with increased family
distress when deciding to withdraw life support
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Allen et al. (2003). Advance care planning in nursing homes: correlates of capacity and possession of
advance directives. Gerontologist, 43, 309–317.
Tilden et al. (2001). Family decision-making to withdraw life sustaining treatments from hospitalized
patients. Nursing Research, 50, 105–115.

8. BEREAVEMENT IN DEMENTIA
• Dementia is unique amongst terminal illnesses
• Care-giving by family members in dementia is an unpaid ‘career’
• Death of ‘personality’ whilst still physically alive
• Immense cost to family life, career, physical and mental health
• Care-givers/family members may experience bereavement when the
loved one is still alive
• Anticipation of grief begins early and continues through terminal
stages: a grief reaction occurs even when the person is alive, not post
mortem
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9. COPING WITH DEATH & LOSS
• Care-givers who are spouses consider death a relief from suffering to
their loved one with dementia and themselves (Schulz et al., 2003)
• Care-givers report reduction in depression after the death of their
spouses with dementia (Haley et al., 2008)
• Family group & individual counseling and weekly support group
meetings when care recipient was still alive significantly reduced
depression in care-givers after death of care recipient compared to
control care-givers.
• Interventions more effective when given before major transitions like
hospitalization of loved ones
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Haley et al. (2008). Long-term effects of bereavement and care-giver intervention on dementia care-giver depressive
symptoms. Gerontologist, 48, 732–740
Schulz et al.(2003). End of life care and the effects of bereavement among family caregivers of persons with dementia. New
England Journal of Medicine, 349, 1936–1942.

10. COMPLICATED GRIEF
• Prolonged grief disorder, with persistent and disruptive yearning for
the lost loved one.
• Trouble accepting the death, inability to trust others, excessive
bitterness, avoidance, life is meaningless without loved one and the
future is hopeless
• Proposed for inclusion in DSM-IV
• Shulz et al.(2006) found 20% of care-givers of spouses with dementia
(n=217) had features of complicated grief and depressive symptoms
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Shulz et al. (2006) Predictors of complicated grief among dementia caregivers: a prospective study
of bereavement. American Journal of Geriatric Psychiatry, 14, 650–658

11. DEATH & DYING
Cultural & Philosophical Aspects

12. Rinpoche on modern society
• “The fate of the gods reminds me of the way the
elderly, the sick and the dying are treated today.
Our society is obsessed with youth, sex and
power and we shun old age and decay. Isn’t it
terrible that we discard old people when their
working life is finished and they are no longer
useful? Isn’t it disturbing that we cast them into
old people’s homes, where they die lonely and
abandoned?”
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13. Discussion on Death
• The end of life…
• What happens after-life..
• Cultural belief systems…
• Religious belief systems…
• Acceptance of death as undeniable…
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14. I am afraid…
• One often meets patients with dementia who either report being afraid
or demonstrate intense fear and anxiety through their actions
• Are they grappling with the fear of the unknown?
• Are they afraid that they may die?
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15. Personal Fear…
• What will happen to me when I pass on?
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16. Fear for family, loved ones, dependants…
• What will happen to them when I pass on?
• Who will take care of them?
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17. What ails the dying person?
IMPORTANT PREDICTORS OF EMOTIONAL STRESS
• Psychological conflict: people know they must die, but they do not
want to…
• Locus of control: people desire to retain control over their destiny…
MANAGING STRESS AT THE END OF LIFE
• Self Actualization: The challenge of self actualization while at death’s
door …
• Rationality: The ability to meet impending death with logic rather than
with emotion
• The ability to accept rather than influence one’s Destiny…
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18. Acceptance
• In eastern philosophy there is a firm belief in the concepts of fate and
destiny. In Hindu belief the celestial sage Narada referred to the
existential world as "Maya", a mere illusion, requiring from us,
therefore, suitable restraint in engagement.
• Accordingly, in Hindu philosophy, a person submits to the powers
above (often his favorite deity) and accepts all that happens in his life
as being so ordained.
• In this model of being, the locus of control is neither internal nor
external; it is simply surrendered to God; followers of Lord Vishnu
believe in the principle of "sharanagathi“- total and abject surrender
to the lord.
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19. Acceptance
• The advantage in the acceptance approach, also enshrined in Tibetan
Buddhism is the unshakable belief in the creator; that he will take care
of one as a child, dispensing all that one richly deserves, through the
good deeds (and sins) accumulated during the course of our earthly
existence, in this lifetime and those that preceded it
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20. Discussion Point!
Coping Mechanisms in Other Religions &
Cultures
• Islam
• Christianity
• Buddhism
• Jainism
• Sikhism
• Other…
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21. HOW DOES THE CLINICIAN DEAL
WITH IMPENDING DEATH?
The Tibetan Book of Living & Dying
10th Anniversary Edition, Sogyal Rinpoche,
Patrick D. Gaffney, Andrew Harvey
HarperCollins, 2002

22. Death & the medical professional
• Most of us, even medical professionals, are bewildered when
confronted by the prospect of death.
• Often we feel inadequate or embarrassed, not knowing what we
should say to the person who is dying, and to his near and dear ones.
•
• Indeed, the most typical human response to death is denial of the
condition or the diminishing of its impact.
•
• However, the person who is dying often has a much clearer
knowledge and vision of this inevitable outcome, achieved after
weeks of intense suffering.
• Helping the dying person achieve an early, more graceful acceptance
of death, without denying or diminishing his thoughts and feelings is
important.
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23. Discussion Point!
Do people seem to know when death is
impending?
• Doctors…
• Nurses…
• Paramedical professionals…
• Caregivers…
• Families…
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24. Rinpoche to Clinicians
“How can you be a truly effective doctor when you do not
have at least some understanding of the truth about death,
or how to care spiritually for your dying patient? How can
you be a truly effective nurse if you have not begun to face
your own fear of dying and have nothing to say to those
who are dying when they ask you for guidance and
wisdom?”
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25. Discussing Death & Dying
“I never go to the bedside of a dying person without
practicing before hand, without steeping myself in the
sacred atmosphere of the nature of the mind. Then I do not
have to struggle to find compassion and authenticity for
they will be there and radiate naturally.”
Sogyal Rinpoche
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26. Rinpoche on attitudes to death
• He speaks of two groups of people whose attitudes to death clearly
affect the way they live life.
- One group lives in denial of death — repressing and refusing to
acknowledge its potential impact
- The second group has a casual attitude towards death, not
attributing to it the seriousness of thought it deserves.
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27. Dealing with Dying
• “I would have sat by his side, held his hand and let him
talk. I have been amazed again and again by how, if you
just let people talk, giving them your complete and
compassionate attention, they will say things of a
surprising spiritual depth, even when they think they don’t
have any spiritual beliefs. I have been very moved by how
you can help people help themselves by helping them
discover their own truth, a truth whose richness,
sweetness, and profundity they may have never
suspected”.
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28. Clinical tools at the deathbed
• A sense of humor, a useful tool to dissolve the gravity of the situation
• The ability to not take things personally, since anger is a common
response of the dying person, and may be directed towards the person
trying to help
• Unconditional love, which can be facilitated by thinking of yourself in the
dying person’s place (empathy)
• Telling the truth with love, a rare blend of virtues that directly addresses
the dying person’s needs
• Active compassion (expressed in action, not mere words)
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29. Empathy with the dying…
• The ability to take on the suffering and pain of others and
give them your happiness, well being and peace of mind-
The Buddhist practice of Tonglen
• To be able to deal effectively with the dying person’s
fears, it is important to introspect and be aware of one’s
own fears about death.
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30. Goodbye
• While saying goodbye, two explicit verbal statements are
pre-requisites. The dying person must be given
permission to die with the assurance that his loved one(s)
will be taken care of in the aftermath.
• To address the people that the dying person leaves
behind, saying that it is useful to be open to grief rather
than repress it, and try to learn from the grief.
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31. The cycle of life and death…
• In Tibetan Buddhist teaching human existence is believed
to consist of four Bardos (phases).
• The natural bardo of this life
• The painful bardo of dying
• The luminous bardo of dharmata (after death)
• The karmic bardo of becoming (rebirth)
• The Bardos are viewed as particularly powerful
opportunities for liberation.
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32. Discussion Point!
According to your religion/ culture what
happens after death?
• Islam
• Christianity
• Buddhism
• Jainism
• Sikhism
• Other…
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33. What can the clinician do?
• Encourage the person to talk and listen with patience
• Acknowledge the undeniable reality of death; help people and
families work through death
• Enhance understanding of death- use spirituality and cultural values
as tools
• Emancipate the dying process; enable people to see it as liberation
from earthly existence and a union with the creator
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34. Use technology judiciously
• Our patients die marvelously documented and scripted
deaths in this modern world of medicine; but they die in
the same way as they did 100 years ago…
• Death remains the great leveler…
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35. Lessons…
• Caring for the dying makes you poignantly aware not only
of their mortality but also of your own
• Bereavement can force you to look at your life directly,
compelling you to find a purpose in it where there may not
have been one before
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36. A Global Approach…
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