St Vincent's Presentation

1. Palliative Care
‘Live as if you were to die tomorrow, learn as if you were to live forever’.
MAHATMA GANDHI 1869 – 1948.

2. 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.
Definition: (WHO)

3. Goals…..
• Provides relief from pain and other
distressing symptoms.
• Affirms life and regards dying as a normal
process.
• Intends neither to hasten or postpone death
• Integrates 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
• Uses a team approach to address the needs
of patients and their families, including
bereavement counselling, if needed
• Will enhance QOL, and may also positively
influence the course of illness

4. Palliative Care… cont’d
• "You matter because you are you, and you
matter to the end 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, nurse, physician and
writer, and founder of hospice movement
(1918 - 2005).

5. The elephant in the room..
• The only certainty in
our lives is that we will
die.
• We don’t tend to talk
about it or plan for it.
• Death can be a positive
experience, both for the
dying individual and
their loved ones.
• https://www.youtube.com/watch?v=j8tMTTwW6Iw

6. Death…
• Almost everything – all external expectations, all
pride, all fear of embarrassment or failure – these
things just fall away in the face of death, leaving
only what is truly important. Remembering that
you are going to die is the best way I know to
avoid the trap of thinking you have something to
lose. You are already naked. There is no reason
not to follow your heart."
• – Steve Jobs, American Entrepreneur, Apple co-
Founder (b.1955).

7. Reflections on Dying..
• "I am not afraid of death, I just don't want to
be there when it happens.”
• Woody Allen, American screenwriter, film
director, actor, comedian, writer, musician and
playwright (b.1935).
• "When you learn how to die, you learn how to
live.”
• Morrie Schwartz, American educator and
writer (1916 - 1995).

8. What does dying look like?
• Different for everyone.
• Option of settings: home,
hospital, hospice (if
planned).
• Not always painful.
• Not always something
that happens to older
people.
• Not always when
expected.
• https://www.youtube.com/watch?
v=HZL88Xl0-DI

9. Different strokes for different folks..
• Pushing up daisies.
• Buying the farm.
• Kicking the bucket.
• Checking out.
• Dropping the body.
• Passing away.
• Knocking on heaven’s
door.
• Popping your clogs.

10. Common conditions in Palliative Care
• Cancer (solid tumors)
• Haematological
conditions
• Neurodegenerative
conditions e.g. MND
• Dementia
• ‘End stage’ respiratory
conditions
• ‘End stage’ liver failure
• ‘End stage’ renal failure
• ‘End stage’ heart failure
• ‘End stage’ dementia
• Old age/frailty
• Mitochondrial disorders
e.g. MELA’s

11. Common Symptoms
• Pain
• Nausea +/- Vomiting
• Constipation
• Fatigue
• Insomnia
• Weight Loss
• Anxiety
• Breathlessness
• Poor appetite

12. Symptom Management
• Symptoms often multi-
dimensional and multi-
factorial.
• Each individual/family
will have preferences
around symptom
management.
• Client/patient
autonomy very
important.

13. Pain….
• Spiritual, physical,
emotional, social
influences.
• Concept of ‘total
pain’ in palliative
care.
• Medication is often
‘not enough’:
important to
consider the ‘whole
person’.
• Pain is what the
individual ‘says it is’.
• Will have different
triggers therefore
different relief applies.
• Is often complex in
palliative care.
• Can be multiple
types/mechanisms of
pain in one individual.

14. Poor appetite and weight loss
• Natural part of many
disease processes.
• Encourage intake for
enjoyment/pleasure vs
weight gain.
• If possible avoid the
scales.
• Social implications:
(body image, cultural
implications).

15. ‘Phases of Care’
• Stable
• Unstable
• Deteriorating
• Terminal
• Bereavement

16. Impact of receiving ‘the news’
Nature in which news is
delivered will often
influence manner in which
it is received.
Reactions individualized
and complex.
Emotional, physical, social
and spiritual
circumstances will
influence ‘the journey’.

17. Physical experience of ‘dying’
• Fatigue.
• Increasing frailty.
• Diminishing performance status.
• May require assistance with ‘ADL’s.
• Increasing reliance on others.
• Symptoms of disease process.
• May require equipment/aids.

18. Equipment options..
• Wheelie Walker.
• Shower chair/stool.
• Electric Recliner/Day Bed.
• Wheel Chair.
• Walking Stick.
• Commode.
• Hospital Bed +/- Pressure relieving mattress.

19. Support for Home Care
• Carer/Carers.
• Family (in whatever
form)..
• GP.
• Friends.
• Specialist Pall. Care
team.
• Volunteers.
• SW, Counselors.

20. Social experience of ‘dying’
• Alterations in role in
family, friendships,
workplace.
• Adapting to change in
‘life expectancy’ or
‘assumptive world’.
• Concern for loved ones.
• Financial concerns.
• Unfinished projects.

21. Implications for social needs..
• ‘Bucket List’.
• ‘Death Plan’
• Letters/gifts/wishes
for family and
friends.
• Photo journals.
• Video messages.
• Funeral
preparation.
• ‘Living wakes’.
• ‘Advanced Health
Directive’.
• ‘Enduring Power of
Attorney’.
• ‘Will’.
• Financial Supports avail.
via Centrelink etc.
• Superannuation
‘Terminal illness
benefit’.

22. Spiritual Experience
• Potential for spiritual
pain, or comfort.
• Religious beliefs and
practices may present
hope or trigger ‘crisis of
faith.
• Diagnosis may enhance
search for ‘deeper
meaning’ or ‘legacy’.

23. Emotional Experience
• Shock, denial, anger,
bargaining, acceptance
(stage theory): Kubler-
Ross.
https://www.youtube.com/watch?v=G_Z3lmidmrY
• Depression +/- Anxiety.
• No fixed pattern of
emotion.
• For some it’s a relief.
• Individualized.

24. Spiritual Care: ‘A model of needs’
• SITUATIONAL
• Purpose
• Hope
• Meaning & Affirmation
• Mutuality
• Connectedness
• Social Presence
• (Kellehear 2000)

25. Religious
• Religious Reconciliation
• Divine Forgiveness
• Religious
Rites/Sacraments
• Visits by Clergy/pastoral
care
• Religious
Literature/images
• Discussion about religious
matters
• (Kellehear 2000)

26. Moral & Biographical
• Peace & Reconciliation
• Reunion with Others
• Prayer
• Moral & Social Analysis
• Forgiveness
• Closure
• https://www.youtube.com/watch?v=Nih9EU5Q
1Oc&list=PL3409BC8580B401DA
• (Kellehear 2000)

27. ‘How to BE with dying…TIPS’
• Dying people are Living
people.
• It is their journey.
• People tend to ‘die the
way that they have
lived’.
• Words are often not the
answer.
• Compassionate
Presence/Listening.

28. CONTINUED…
• Speak from the Heart.
• Listen from the Heart.
• Speak Concisely.
• Speak ‘Spontaneously’.
(Halifax 2008)

29. Self Care..
• Be mindful of the
‘shadow side of
caregiving’ (Halifax 2008)
• (The Martyr, the
Professor, the Hero, the
Parent).
• Nurture yourself.. Think of
3 things you can do to be
kind to yourself.
• ‘You cannot give from an
empty cup’.

30. Self Care… continued.
• Debriefing.
• Taking ‘time out’.
• Spending time with
friends and family.
• Counseling if helpful.
• Meditation/prayer/yoga
/exercise/swimming/m
usic.

31. QUESTIONS….
• https://www.youtube.com/watch?v=
-NpHYXw2Ruw
• Thank you for inviting
us to share with you…