1. Dr James Low
Palliative Care Service
Department of Geriatric Medicine
Khoo Teck Puat Hospital
Palliative Care-
A Journey of Hearts
Inaugural ILTC Palliative Care Nurse Training Course
August 2017
3. Life is a journey
All journeys have a beginning
and an end
4. Truisms About Life & Death
• The only certain thing about life is death
• Life is a terminal event
• Each passing day marks a step closer towards
one’s death
• In short, all will die
some day
7. Pre-antibiotic era
infectious diseases
Modern day
degenerative disease
Brief dying trajectory Prolonged dying trajectory
Treatment usually expectant
Curative treatment
prolonging of dying
phase
8. Uncontrolled Mortality
• Before the industrial
revolution
• high mortality,
fluctuated over short
periods and varied
widely between areas
and subpopulations
• high death rates, low
life expectancies
• most died at the age
which would be
regarded as the prime
of life now
Controlled Mortality
• Post-industrial revolution
• Death rates much lower,
temporal & spatial variations
less significant
• life expectancy :
1880 45 yrs
1900 51 yrs
1930 >60 yrs
1950 >70 yrs
• results from changes in social
systems and standards of
living including better
sanitation and public health
• antibiotics in the 30’s cure-
orientated interventions
9. 2001 2009 2014
Total deaths 15367 17101 19393
% of Total Deaths
1. Cancer 28.2 29.3 29.4
2. IHD 26.3 19.2 16.0
3. Pneumonia 10.0 15.3 19.0
4. CVA 9.2 8.0 8.4
5. Accidents,
poisons,
violence, etc
6.7 5.7 4.7
Singapore Health Facts
11. DEATH-FREE GENERATION
• One that is born, lives through infancy,
childhood, and adolescence, enters into
adulthood, marries and has children, all
without experiencing the death of a
significant, close relative
• Death seems to be a stranger or an alien
figure which has no natural or appropriate
place in life
12. Dying in a modern society (1)
• Likely to take longer time - weeks, months
• Increasingly involve professional caregivers,
therefore a/w increasing institutionalization
13. • 80-90% occur in an institution
“ in a strange place, in a strange bed,
surrounded by sights, sounds,
smells and people who are strange
to them”
14. I Don’t Want
I don’t want to live,
I don’t want to feel;
I don’t want a life..
dependent on pills!
I don’t want to face another day,
I don’t want to wake up
to a morning crippled with pain;
with no comfortable position
I can restfully lay,
And nothing can be done…
the pain remains;
No one can really help me
now,
Who would want to anyhow?
Who would really miss me
when I’m no longer around?
I want to be freed
from this messed up body,
I want to float away…
from all this pain and misery;
There’s no more meaning
in this hopeless journey
I just want to leave all this
suffering
Far, far behind me.
14 Jan 1996, June Koh“Poems Borne Out of Pain and Struggle”
15. Dying in a modern society (2)
• Family members not present at the moment
of death, learn about death by a telephone
call
• Cleaning, dressing & preparation of the body,
actions once regarded as final gestures of love
and respect are now likely to be done by
nurses, nursing aides and funeral directors
16. Dying in a modern society (3)
• Body will be removed from the place of death to
a funeral home and reappear in a different form
at a wake and it may be cremated or buried
without the presence of the family members
• Encounters with all facets of death diminished
• Care of the dying & the dead have been moved
away from the family and out the home
• Death is increasingly distanced from the
mainstream of life’s events and has become a
less familiar feature of life and an alien event
17. THE PORNOGRAPHY OF DEATH
• Pornography is linked to prudery (some aspect
of human experience is treated as inherently
shameful or abhorrent), so that it can never
be discussed or referred to openly and
experience of it is clandestine and
accompanied by feelings of guilt and
unworthiness
Geoffrey Gorer
19. GOOD Death vs BAD Death
• symptom-free, painless
• place of choice (home
usually)
• warmth of home
• familiar faces, loved ones
around
• completed business
• healed relationships
• lucid if possible
• with dignity
GOOD
•Painful symptoms
•unfinished business
•strange place
•among strangers
•tubes, lines, monitors, probes
•broken relationships
•agitated, restless, depressed
•no dignity
BAD
21. The Multidimensional Human
The Dimensions of
the Human
Description
• Physical
• Emotional
• Psychological
• Social
• Spiritual
To do with what can be perceived by the senses, ie
touched, seen, felt, heard, smelled, etc
To do with the affect, emotions and feelings that arise
spontaneously as a reaction to any of the other
dimensions.
To do with thought processes, ideas, intelligence, intellect,
reasoning, etc.
To do with relationships and connectedness to other
humans, pets and the environment
To do with existential issues and connectedness to
something beyond oneself, trying to ascribe meaning, value
23. Total Pain
“You matter because you
are you, and you matter
until the last moment of
your life. We will do all
we can, not only to help
you die peacefully, but
also to live until you die”Dame Cicely Saunders
1918-2005
24. Physical Pain
• Uncontrolled symptoms
– pain, breathlessness, nausea, vomiting
• Change of body form
– losing weight, losing hair (if on chemo.)
• Body mutilation
– mastectomy, colostomy, surgical scar
• Loss of function
– bedridden, unable to empty bladder/bowel naturally
• Being ugly, unclean, abnormal, unappealing,
incomplete
26. Emotional and Psychological Pain
• Sadness, depression, anger, fear, anxiety
• Elizabeth Kubler Ross
– 5 stages of grief
• Guilt feelings
• Grief for losses
– roles as a father, husband, worker, etc functional
independence things that could be done previously
• Fear of losing mind, becoming mad
27. Social Pain
• Losses- of social roles
– as a father, husband, worker, status
• Fear of being a burden to loved ones, to
society
• Inability to enjoy life to the fullest
• Unfinished business
– unable to complete plans, eg see child grow up,
see child’s wedding, finish studies, etc
28. The Family
• Losing somebody they’ve known and love for
all this while, forever
• Fear of abandonment
• Sense of helplessness
• Grief and bereavement (loss)
• A most stressful and emotionally draining
experience (etched in memory irrevocably)
29. Spiritual Pain
• Threat of extinction
• Fear of the unknown
• Finding answers to existential questions- the
meaning of life, the meaning of suffering
• Questions of belief system
• Blaming God
• Guilt, sense of retribution
30. Spiritual Pain
• Common spiritual task of humans approaching
death is the search for meaning
• Can be a struggle, a confusion, a discomfort,
an anguish, a suffering not only experienced
by the patient but by those around him-
family and staff included
31. • The patient tries to seek
meaning and make sense of
the past, present and future
when he is faced with a life-
threatening illness
32. Spiritual Questions at the End-of-lifeSpiritual Questions at the End-of-life
Period Common Questions and Thoughts
Past
What did I do (or not do) to deserve this?
When and how did this start?
Is this retribution from God?
If only I had gone for that screening test, I wouldn’t be here now
Is this some sort of curse or charm?
Present
Why is there so much pain and suffering?
Of all the diseases, why this one?
Why must I get it now, why not later?
What’s the meaning of this life- is living worth it?
Future
What kind of death will I experience?
What will happen to my children and my spouse?
What would it feel like to be extinct or dead?
Is there a God or a life after death?
Will I lose my mind near death?
Can I die on my terms?
34. THE FIRST MODERN HOSPICE
St. Christopher’s Hospice , est.1967
• Concept of the Hospice
Movement- holistic care
• Important elements:
Beds integrated in local
community
Devp./monitoring of
symptom control
Family support
Bereavement service
Home care
Research/evaluation
Education/training
35. History
• In 1948, Cicely Saunders, a nurse turned social
worker, encountered David Tasma, a Polish
Jew dying of rectal cancer in a busy London
teaching hospital.
• From their conversations and her subsequent
work as a volunteer at St. Luke's Home for the
Dying Poor, she went on to study medicine.
• In 1967, she developed St. Christopher's
Hospice and with it, the concepts upon which
the modern hospice movement was founded.
36. “We do not think of our inmates as ‘cases’. We
realise that each one is a human microcosm,
with its own characteristics, its own aggregate
of joys and sorrows, hopes and fears, its own
life history, intensely interesting to itself and
some small surrounding circle. Very often it is
confided to us”
Dr. Howard Barrett, 1909
38. THE TEAM
• Nurses
• Doctors
• Therapists
– speech, occupational, physiotherapists
• Social worker
• Pastor, priest, monk, etc.
• Volunteer coordinator and volunteers
• Pharmacists, dentist, music therapist,
art therapist, dietician
39. Key Players in Multidisciplinary Team
Everyone has an equally important role, thus palliative care involves a
multidisciplinary team, often having a partnership rather than a
paternalistic approach to patient care.
PATIENT
&
FAMILY
doctor
nurse
Social
worker
pharmacist therapist
psychologist
Pastoral
care
volunteers
dietician
40. A TYPICAL PALLIATIVE CARE SERVICE
• Specialist home care nurses
• Medical consultations - surgeons,
ophthalmologist, oncologist
• Outpatient clinics
• Day care centre
• Inpatient care
• Bereavement support
• Education/Research
• Volunteers
41. Palliative care
If dying from cancer (or
other terminal illness) is a
journey and life
experience, then palliative
care is the means of
providing help for
someone on this difficult
journey.
42. GOOD Death vs BAD Death
• symptom-free, painless
• place of choice (home
usually)
• warmth of home
• familiar faces, loved ones
around
• completed business
• healed relationships
• lucid if possible
• with dignity
GOOD
•Painful symptoms
•unfinished business
•strange place
•among strangers
•tubes, lines, monitors, probes
•broken relationships
•agitated, restless, depressed
•no dignity
BAD
43. DEFINITIONS: PALLIATIVE CARE
‘the active total care of patients whose disease
is not responsive to curative treatment. Control
of pain, of other symptoms, and of psychological,
social and spiritual problems, is paramount. The
goal of palliative care is achievement of the best
quality of life for patients and their families.
Many aspects of palliative care are also
applicable earlier in the course of the illness in
conjunction with anti-cancer treatment’
…... 1990 WHO
definition
44. 2002
• Palliative care is an approach that improves the
quality of life of patients and their families facing
the problem associated with life-threatening
illness, through the prevention and relief of
suffering by means of early identification and
impeccable assessment and treatment of pain
and other problems, physical, psychosocial and
spiritual
45. WHAT IS IMPLIED BY THE DEFINITION
Palliative care:
• affirms life and regard dying as a normal process
• neither hastens nor postpones death
• provides relief from distressing symptoms
• integrates the psychological and spiritual aspects of care
• offers a support system to help patients live as actively as
possible until death
• offers a support system to help the family cope during the
patients’ illness and in their own bereavement
48. History of Palliative Care in Singapore
1985 St Joseph’s Home,
Jurong
16 beds set aside for
terminally ill patients.
July 1, 1986 Article in the Straits
Times about the work at
St Joseph’s Home
144 responses from the
public. First volunteer
hospice home care
group formed.
March 1987 Singapore Cancer
Society (SCS)
Hospice Care Group
established to provide
home care.
November
1988
Assisi Home and Hospice 12 beds allocated for
terminally ill patients in
Khoo Block.
1989 Agape Fellowship Later to become
Methodist Hospice
Fellowship.
49. December 4, 1989 Hospice Care
Association
independent charity
providing hospice
home care.
Feb 1992 Assisi Home and
Hospice
Convent remodeled
to provide 31 hospice
beds and 8 long stay
beds.
Nov 1992 Dover Park Hospice DPH registered as a
charity.
1993 Dover Park Hospice
(DPH) and Hospice
Care Association
(HCA)
Decision to build
Hospice Centre as
joint venture of DPH
and HCA
June 1993 Assisi Home and
Hospice
Started home care
service.
September 1995 Dover Park Hospice Opened 40 beds.
50. October 1995 Hospice Care
Association
Move to Hospice
Centre Jalan Tan
Tock Seng.
December 1995 Hospice Care
Association
Opened Day Care
Centre.
July 2001 Metta Hospice Care Started home care
service.
June 2002 Bright Vision
Hospital
Opened 32 hospice
beds.
May 2016 St Joseph’s
Nursing Home
Re-launch of
full-fledged hospice
51. PALLIATIVE CARE SERVICES
Hospital based
services
TTSH
NCC/SGH
KKWCH
KTPH
NUH
NTFGH
Inpatient Hospices
•Dover Park HospiceDover Park Hospice
•Assisi Home and HospiceAssisi Home and Hospice
•St. Joseph’s HomeSt. Joseph’s Home
•Bright Vision HospitalBright Vision Hospital
•St Andrew’s CHSt Andrew’s CH
Home Care
•HCA Hospice Care
•Assisi Home and
Hospice
•S’pore Cancer
Society
•Agape Methodist
Hospice
•Mehta Home Care
•St Andrew’s CH
Day Care
• HCA Hospice Care
•Asissi Home and Hospice
52. SOME THOUGHTS…..
“Palliative care as a philosophy is translated
into action by groups of people usually with a
health professional background, and with
many others to improve the quality of life of
the dying and their families. This action is
based on art and science.”
“Palliative care developed as a reaction to the
attitude that ‘there is nothing more that we
can do for you’ with the inevitable
consequence for the patient and the family of a
sense of abandonment, hopelessness and
despair.”
53. “ Those who have the strength and the love to
sit with a dying patient in the silence that
go beyond words will know that this
moment is neither frightening nor painful,
but a peaceful cessation of the functioning
of the body”
“ Watching a peaceful death of a human being
reminds us of a falling star, one of the millions
of light in a vast sky that flares up for a brief
moment only to disappear into the endless night
forever”
54. If Death is Kind
~Sara Teasdale
Perhaps if death is kind,
and there can be
returning,
We will come back to
earth some fragrant
night,
And take these lanes to
find the sea, and
bending
Breathe the same
honeysuckle, low and
white.
We will come down at night to
these resounding beaches
And the long gentle thunder of
the sea,
Here for a single hour in the
wide starlight
We shall be happy, for the
dead are free.
55. Slowly I learn about the importance
of powerlessness. The secret is not to
be afraid of it- not to run away. The
dying know that we are not God. All
they ask is we do not abandon them
