2. Palliative Care
Learning Outcomes for this work shop:
1. Demonstrate knowledge of the principles and
philosophies of a palliative approach in the Aged Care
setting.
2. Improve the knowledge of the roles of the palliative
care team.
3. Understand pain & symptom management principles.
4. Demonstrate an understanding of the psychological &
spiritual support mechanisms.
5. Know where to seek more advice.
Updated 12/9/2009 2
3. Palliative Care
Standard 2.9 – Palliative Care
Expected outcome – the comfort & dignity of
terminally ill residents is maintained.
Criteria – Policies & Practices provide:
A. that residents wishes are identified, respected and where
possible, acted upon in relation to their terminal care; and
B. individual palliative care programs that enable family
involvement, accommodate religious and cultural beliefs and
recognise an individual’s right to die with dignity.
Updated 12/9/2009 3
4. Palliative Care
Definition :
WHO –
Palliative care is an approach that improves the quality
of life of patients and their families facing the problems
associated with life threatening illness, through the
prevention and relief of suffering by means of early
identification , assessment & treatment of pain and
other problems, physical, psychosocial and spiritual.
Updated 12/9/2009 4
5. Palliative Care
Palliative care :
Provides relief from pain and other distressing
symptoms,
Affirms life & regards dying as a normal process,
Intends neither to hasten or postpone death,
Integrates the psychological & spiritual aspects of
patient care,
Offers a support system to help patients live as actively
as possible until death,
Updated 12/9/2009 5
6. Palliative Care
Offers a support system to help the family cope during
the patient’s illness and in their own bereavement,
Uses a team approach to address the needs of the patient
and their family, including bereavement counseling,
Will enhance the quality of life and may also positively
influence the course of the illness.
(WHO – definition of palliative care –
www.who.int/cancer/palliative/definition/en/)
Updated 12/9/2009 6
8. Palliative Care
The need for palliative care does NOT depend on
diagnosis, but on the individual person’s needs –
particularly the complexity & severity of a person’s
distress or their potential for distress.
Updated 12/9/2009 8
9. Palliative Care
The primary goal of palliative care in an
aged care setting is to :
Improve the resident’s level of
comfort & function,
And to address their
psychological, spiritual & social
requirements.
Updated 12/9/2009 9
10. Palliative Care
These categories underpin
the provision of care, and
therefore the guidelines to
assist practice through an
educative process.
The guidelines are inter-
related and no one should
be considered in isolation
from the others
Updated 12/9/2009 10
12. Palliative Care
A palliative approach aims to improve the
quality of life for individuals with a life-limiting
illness and their families, by reducing their
suffering through early identification, assessment
and treatment of
pain, physical, cultural, psychological, social, and
spiritual needs.
Updated 12/9/2009 12
14. Palliative Care
Underlying the philosophy of a palliative approach
is a positive and open attitude towards death and
dying.
The promotion of a more open approach to
discussions of death and dying between the aged
care team, residents and their families facilitates
identification of their wishes regarding end-of-life
care.
Updated 12/9/2009 14
15. Palliative Care
• A palliative approach is not confined to the end
stages of an illness.
• A palliative approach provides a focus on active
comfort care and a positive approach to reducing
an individual’s symptoms and distress.
• This facilitates residents’ and their families’
understanding that they are being actively
supported through this process.
Updated 12/9/2009 15
16. Palliative Care
What are the barriers to a Palliative Approach?
1. In Western society people are often afraid of
discussing death & dying.
2. There is confusion between palliative care and
euthanasia.
3. ACF’s often do not have up to date knowledge and
definitive guidelines about Palliative Care and when and
how to implement it.
4. Specialist knowledge (ie. A Palliative Care team) is
often not sought.
Updated 12/9/2009 16
17. Palliative Care
An Australian study has projected that there will be a
70% increase in older Australians over the next 30
years with profound disabilities.
Conditions included are :
Neurological – Parkinson’s, stroke, dementia, motor neurone disease.
Musculoskeletal – arthritis, osteoporosis, muscular dystrophy,
Circulatory – vascular disease, heart attack, heart failure.
Respiratory – COPD, asthma, emphysema, cystic fibrosis.
Endocrine – diabetes.
HIV/AIDS
Cancer
Renal & liver disease.
Updated 12/9/2009 17
19. Palliative Care
Advance Care Planning :
The Aged Care Act stipulates that residents must be
given the opportunity to make choices about their care.
This includes their right to agree or refuse treatments
offered.
Advanced Care Planning is a process which enables the
resident to be able to make decisions about their end-of-
life wishes in writing, which then removes the burden
of responsibility from the surrogate and leaves the
control with the resident.
Updated 12/9/2009 19
20. Palliative Care
If the resident is unable to make these
decisions, It’s important for families to
be involved in all steps of the planning
process, including acceptance or
refusal of treatments and ongoing care.
Updated 12/9/2009 20
21. Palliative Care
Having “The Discussion” regarding end-of-life
wishes.
Best done either before admission to the ACF, or
immediately upon arrival.
If not done, treatment decisions will be made on the run
in crisis mode, and unnecessary transfers to hospital or
unwanted treatments which do not meet the goals or
wishes of the resident or family may occur.
Updated 12/9/2009 21
23. Advance Directive documents tend to address issues
such as pain control, comfort care, place of dying and
hospital admission.
These documents need to be flexible to take into
account unforeseen incidents, such as fractured hip or
pneumonia.
No one should be forced to participate in the discussion
if not willing.
Updated 12/9/2009 23
24. Palliative Care.
See document – “Clinical Practice Guidelines for
communicating prognosis and end-of-life issues with
adults in the advanced stages of a life-limiting
illness, and their caregivers.”
www.mja.com.au
MJA supplement, 18 June 2007, Volume 186, number
12.
Updated 12/9/2009 24
25. Palliative Care
Identifying the three forms of Palliative care -
1. The Palliative Approach
2. Specialised palliative service provision
3. End-of-life care.
Updated 12/9/2009 25
26. Palliative Care
1. The Palliative Approach –
Appropriate when the resident’s condition cannot be
cured, and the symptoms require intervention.
The goals are to:
Improve the resident’s level of comfort &
function,
And to address their psychological, spiritual &
social requirements.
Updated 12/9/2009 26
27. Palliative Care
2. Specialised palliative service provision
– appropriate when the resident requires specific &
focused input by a specialist team – eg. Eastern Palliative
Care. Not meant to replace the palliative approach, but
runs in conjunction with it.
Updated 12/9/2009 27
28. Palliative Care
The goals are to assess and treat complex symptoms
being experienced by the resident and providing the
information to the aged care team on complex issues like
family issues, ethical dilemmas, distress.
Should be managed in a timely manner, and not in
response to crisis.
May require transfer to hospice for expert palliation if
facility is not able to manage.
Updated 12/9/2009 28
29. Palliative Care
3. End-of-life care – implemented in the final days or
weeks of life.
Care decisions may need to be reviewed on a frequent
basis – daily or more often.
The goals are focused towards the resident’s
physical, emotional & spiritual comfort, and supporting
the family.
Can be a difficult time to identify as residents often have
multiple co-morbidities and have a gradual slide in their
condition.
Updated 12/9/2009 29
30. Palliative care
Symptoms that may indicate the end-of-life phase :
Requiring more frequent intervention – pain
management, positioning, etc.
Loss of appetite (anorexia)
Profound weakness
Trouble swallowing (dysphagia)
Dry mouth
Weight loss
Lapsing in and out of consciousness
Day to day deterioration.
Updated 12/9/2009 30
31. Palliative Care
It is important to :
Respect the choices that the resident & family members
make with regard to treatment options,
Be available to discuss issues with residents and family
members,
Provide information in a pro-active way – organise
family & doctor meetings when the resident’s condition
changes, to keep them informed every step of the way.
Allow the family to prepare for the imminent death of
their loved one by keeping them informed of changes as
they occur.
Updated 12/9/2009 31
32. Palliative Care
Who is involved in the Palliative (multidisciplinary)
Care Team?
Updated 12/9/2009 32
37. Palliative Care
Palliative Care is a TEAM effort.
Updated 12/9/2009 37
38. Palliative Care
It is critical that one member of the team assumes the
coordinator’s role – eg. RN, GP or DON.
Teamwork between the RN & GP is essential.
The team must be able to meet regularly and assess
and discuss management and progress.
The team should be non-heirarchical.
The staffing skill mix should be determined on the
individual needs of the family members and resident.
It is recommended that at least one member of the
team has formal training in the palliative approach.
Updated 12/9/2009 38
39. Palliative Care
Pain & Symptom Management
Pain – “pain is a subjective sensation… and is what the patient says it
is, and not what others think it should be…”
1. physical suffering or distress, as due to
injury, illness, etc. 2. a distressing sensation in a
particular part of the body: a back pain. 3. mental or
emotional suffering or torment: I am sorry my news
causes you such pain.
www.dictionary.com
Updated 12/9/2009 39
41. Palliative Care
Other symptoms :
Loss of appetite (anorexia)
Nausea
Profound weakness / fatigue
Trouble swallowing (dysphagia)
Dry mouth
Weight loss
Lapsing in and out of consciousness
Day to day deterioration.
Insomnia
Bowel problems – diarrhoea / constipation
Updated 12/9/2009 41
42. Palliative Care
Pain Management
Often under treated in many ACF’s and hospitals.
Often misunderstood.
Treated on fixed regimes that are not flexible or
responsive to the need of the resident, eg. 4/24
analgesia.
Updated 12/9/2009 42
43. Palliative Care
Often treated only in the physical element, not
including spiritual, social & psychological elements.
In an Australian study it was found that 22% of residents
who stated they had no pain had no record of
medication administration recorded in their case
notes, and 16% did not have analgesia ordered at all!
Updated 12/9/2009 43
44. Palliative Care
Barriers to pain management :
Lack of knowledge among nurses and GP’s
Lack of observation skills for pain indicators among
PCA’s, and inadequate reporting.
Fear of the consequences of reporting pain among
residents – reluctant to complain.
Residents become resigned to their pain.
Generational “stoic” ideals – ‘stiff upper lip’.
Cultural misconceptions.
Updated 12/9/2009 44
46. Palliative Care
Review ‘Fast Fact #008 – Morphine & Hastened Death’.
What are the differences between euthanasia &
palliation?
Updated 12/9/2009 46
47. Palliative Care
Morphine toxicity will cause drowsiness, confusion and
loss of consciousness before the respiratory drive is
compromised.
If the intent of the therapy is to help the patient and
have a potentially good outcome – eg. Relief of pain - but
there is a potentially adverse secondary
consequence, the treatment is considered ethical.
Euthanasia is not an example of double effect – the
intent is to end the patient’s life.
Updated 12/9/2009 47
48. Palliative Care
If the intent of giving morphine is to relieve
pain, and accepted dosing guidelines are
adhered to, then :
The treatment is considered ethical
The risk of a potentially adverse secondary
effect is minimal, and
The risk of respiratory depression is vastly
over-estimated.
Updated 12/9/2009 48
49. Palliative Care
Tools for assessing pain :
1. Pain assessment – should state pain
location, type, frequency & severity, as well as the
impact this pain has on the ADL’s.
2. Abbey Pain scale for patients unable to verbalise pain.
Updated 12/9/2009 49
51. Palliative Care
Deciding how and when to implement analgesia.
Updated 12/9/2009 51
52. Palliative Care
Opioids used conventionally for moderate pain
- codeine, hydrocodone, oxycodone.
Typically combined with non-opioid (e.g. Tylenol)
which limits dose titration
Opioids used conventionally for severe pain
-
morphine, fentanyl, oxycodone, methadone, oxymorp
hone
Updated 12/9/2009 52
53. Palliative Care
Tolerance to analgesia:
A change in the dose-response relationship induced by
exposure to the drug and manifest as a need for higher dose
to maintain an effect.
Develops at different rates to these varying effects
- respiratory depression, nausea, constipation
Analgesic tolerance is rarely a problem
- opioid doses remain relatively stable in the absence of
worsening pathology and increased opioid requirements
after stable periods is often a signal of disease progression
Updated 12/9/2009 53
54. Palliative Care
Principles of Pain Management :
Mild pain - Regular (4/24, 6/24 or 8/24) use of
Paracetamol or NSAID’s.
Updated 12/9/2009 54
55. Palliative Care
Moderate Pain – regular weak opioids – codeine or
tramadol +/- adjuvant therapy steroids, NSAID’s
(used with caution), tricyclic
antidepressants, anticonvulsants.
Updated 12/9/2009 55
56. Palliative Care
Severe Pain – paracetamol + opioids patches –
fentanyl (Durogesic) or buprenorphine
(Norspan), morphine – oral, IM or S/C – by butterfly or
syringe driver.
Updated 12/9/2009 56
57. Palliative Care
Management of side effects of pain management :
Constipation – regular aperients, increased as the
opioids increase.
Nausea & vomiting – usually occurs initially, then
settles. Controlled with Maxalon, sometimes
stemetil, and Zofran. Also can be controlled with
phenergan.
Dry mouth – regular mouth care, ice chips, regular sips.
Confusion or hypersomnolence (tend to cause sleep) –
refer to GP or specialist for review.
Updated 12/9/2009 57
58. Palliative Care
Fatigue – NEVER normal – always a symptom of
something!
Causes – anorexia/cachexia (wasting emaciation)
- boredom
- pain
- psychological issues – depression & anxiety.
- sleep disturbance
- medications
- dehydration
- nausea / vomiting
* Treating the cause can help to alleviate fatigue.
Updated 12/9/2009 58
59. Palliative Care
Cachexia – a syndrome combining weight loss, loss of
muscle and visceral protein, anorexia, chronic nausea
and weakness.
Common in cases of cancer, but also chronic heart
failure, renal failure and dementia.
More often a cause of distress to the family, and may
cause extra anxiety about their loved one’s condition.
Family requires extra education about not force feeding
their loved one at this time.
Can be managed with protein drinks and supplements if
patient allows it.
Updated 12/9/2009 59
60. Palliative Care
Nausea & Vomiting:
Causes in palliative care –
1. decreased gastric motility or gastroparesis – from decreased
mobility, medications or decreased neuromuscular control)
2. constipation – treat with aperients
3. medications – opioids – treat with anti emetics
4. hyperacidity – treat with antacids
5. dehydration – treat with fluids or sips
6. unpleasant odours or cooking smells – remove the source.
TREAT THE CAUSE TO HELP ALLEVIATE SYMPTOMS.
Updated 12/9/2009 60
61. Palliative Care
Personal Care –
The personal carer can do so much to ensure that the
final stages of life are as comfortable as possible. Some
of the areas to be managed are :
Personal hygiene
Mobility & positioning
Breathing difficulties
Nutrition & hydration
Elimination
Skin care
Spiritual needs
Updated 12/9/2009 61
63. Palliative Care
Personal hygiene –
Ensure adequate analgesia has been given prior to
hygiene.
Ensure room is warm and comfortable.
Have everything prepared before commencing.
May want to use aromatherapy – under the guidance of a
trained aromatherapist, and resident or family
permission.
Updated 12/9/2009 63
64. Palliative Care
Gentle sponging and massage can be very soothing.
This is a time of intimate contact and a good
opportunity to chat to the resident about their
care, fears and worries.
If skin is very delicate, may want to use a bath oil rather
than soap – this is a good time to monitor skin integrity.
Change linen and gowns as frequently as needed – the
resident may become clammy as the time of death
approaches.
Attend mouth care frequently.
Updated 12/9/2009 64
65. Palliative Care
Mouth Care –
Poor oral health can result from :
Medications – opioids, chemotherapy
Mouth breathing
Oxygen therapy
Decreased nutrition, particularly zinc & Vitamin C
Oral thrush
A good assessment is vital – treating the cause, and
implementing thorough and regular mouth care is critical to
patient comfort.
Updated 12/9/2009 65
66. Palliative Care
• A soft tooth brush can clean teeth and
mouth without damaging soft mucosa.
• Using mouth swabs and mouth wash
can provide relief to a dry mouth.
• Treat oral thrush with(clotrimazole)
Canesten drops
• Warm salt water mouth rinses can
help ulcers and other breaks.
• Peppermint lip cream for cracked lips.
Updated 12/9/2009 66
67. Palliative Care
Mobility & Positioning
As the palliative process progresses, mobility will
decrease.
The resident will require close monitoring of mobility devices
As resident becomes bed / chair bound, analgesia may be
required prior to any repositioning.
Regular skin assessments are required, and use of pressure
relieving devices can be implemented – eg. Spenko
mattresses, sheep skins, spenko booties, air
mattresses, wedges.
Gentle massage and passive movement of limbs can help
prevent contractures.
Updated 12/9/2009 67
69. Palliative Care
Shortness of breath (dyspnoea)
Resident may experience shortness of breath – some
techniques to aid this are :
Updated 12/9/2009 69
70. Palliative Care
Positioning semi-recumbent or on the side
Using a fan to blow air around the room.
Oxygen therapy – only to be used under strict
guidelines – initiating it at this time contravenes
the palliative approach.
Suctioning – only to be done by RN.
Increasing morphine +/- hyocine (to inhibit
salivary secretion if very ‘rattly’).
Gentle physiotherapy.
Updated 12/9/2009 70
71. Palliative Care
Nutrition & Hydration –
Food & fluids should be offered throughout the
palliative phase, but never forced.
Causes of refusal must be explored – eg.
Hypersomnolence from morphine
review by physician; or nausea treat with
anti-emetics.
Studies indicate that patients being palliated do not
experience hunger or thirst, and remain comfortable
with sips of water or ice chips. (Guidelines for a palliative
approach – p.88)
Updated 12/9/2009 71
72. Palliative Care
It is considered best practice to encourage food for
comfort and enjoyment, rather than for nutrition’s sake
– ie. Encourage what ever they want to eat, rather than
using protein drinks, etc.
Enteral feeding may need to be considered if dysphagia
occurs early in the illness.
PEG or tube feeding is not recommended in later
stages, as the body may not be able to digest this amount
of nutrition when the body’s systems are shutting
down, and there is a greater risk of diarrhoea, vomiting
and aspiration.
Updated 12/9/2009 72
73. Palliative Care
Elimination –
Constipation – a thorough assessment is vital – if they are not
eating they will not need to defaecate!
Is their abdomen distended?
Are they straining?
Do they say they need to go?
Is there unusual nausea – not related to medication?
Hard stools?
Treat with laxative program – gentle osmotics, or bulking agents
with suppositories.
Updated 12/9/2009 73
74. Palliative Care
Elimination –
Incontinence – may be faecal and / or urinary
Assess and use continence aids as appropriate.
If perineal thrush or severe rash is present, the pads can be
removed and the resident nursed on a kylie.
Prompt & gentle perineal care is critical – use of moisture
barriers, thorough gentle drying (patting) of the area will
minimise trauma and discomfort.
Stoma & catheter care to be attended as required.
Updated 12/9/2009 74
75. Palliative Care
Skin care –
Skin integrity can be altered due to oedema of limbs, cachexia, fragile
skin, sweating, incontinence, chemotherapy or radiotherapy.
Oedema – elevate the limb, minimal handling, bed cradle, using
‘blueys’ if the limb is weeping.
Prompt wound management
Use of medical sheep skins, pressure
mattresses, spenkos, wedges, etc.
Gentle sponging, avoiding soaps – use bath oils or lotions.
Soft cotton gowns that wont increase sweating.
Prompt management of incontinence.
Ensure diet & fluids are adequate depending on stage of illness.
Updated 12/9/2009 75
77. Palliative Care
Spiritual needs –
If advance care planning has been done well, the spiritual needs of
the resident should be clearly known.
Cultural and religious preferences must be respected and acted
upon.
Family involvement at this time is critical for access to family priests
or specific cultural practices.
Pastoral care workers can help comfort staff and residents.
Complementary therapies can be important to the resident and
family.
Updated 12/9/2009 77
79. Palliative Care
The room –
Should be preferably a single room.
Should be well lit, and well ventilated
Remove any unnecessary clutter or furniture.
Encourage mementos, picture, flowers, or other items of comfort to
be within sight.
May require a fold out bed, or a recliner chair for a relative to sleep
over.
May have aromatherapy or candles – under strict guidelines.
Have the resident’s favorite music on a CD player.
Updated 12/9/2009 79
80. Palliative Care
The family –
Good communication between the facility staff and the family is
critical at all times through out the palliative process.
The care staff might be close to the resident, and also be grieving.
This is the time for the family – you should be comforting them, not
the other way around. Staff should seek counselling if they cannot
cope.
The family should be allowed to stay or visit when ever they wish.
The family members may wish to help with personal care – this
needs to be monitored carefully, but encouraged if it is positive for
the resident and family member.
Professional, religious or spiritual counselling or support can be
very helpful at this time.
Updated 12/9/2009 80
81. Palliative Care
Signs of imminent death –
Movement slows, facial muscles relax
Gastrointestinal function slows – abdominal
distension, incontinence, nausea =/- vomiting may occur.
Body temperature falls – can feel cool, clammy, looks pale.
Circulation fails – pulse can be irregular, weak & thready.
Respiratory system fails – Cheyne-Stokes breathing, or weak and
shallow respirations can occur.
Often the ‘death rattles’ occur as secretions pool in the pharynx and
bronchi – can be distressing to the family, but not the resident.
Loss of consciousness.
Updated 12/9/2009 81
83. Palliative Care
Signs of death –
No pulse
No respirations
No blood pressure
Pupils fixed and dilated.
The doctor is called to declare death.
Updated 12/9/2009 83
84. Palliative Care
Care of the body after death –
Should have been determined in the Advanced Care
Plan.
The family / loved ones should be allowed to stay as long
as they want.
Hygiene care may be necessary if incontinence has
occurred – standard precautions followed.
Cultural / religious wishes are to be taken into account.
Updated 12/9/2009 84
85. Palliative Care
Ideally, the body should be re-alligned in bed, and made
to look comfortable and presentable for any family or
friends who may wish to spend time with the resident.
Place a rolled towel under the jaw if mouth is open.
Clutter is removed from the room, and fresh flowers
placed if possible.
The funeral home is contacted when the family is ready.
Follow the facilities procedures regarding jewellery or
valuable removal.
Updated 12/9/2009 85
86. Palliative Care
Where to seek help –
Palliative Care Australia
Local Palliative Care Associations
Grief counsellors
www.health.gov.au
www.eperc.mcw.edu
www.pallcare.org.au
www.pallcare.asn.au
Updated 12/9/2009 86
87. Palliative Care
References :
“Guidelines for a Palliative Approach in Residential Aged Care”, Australian
Government Department for Health & Ageing, 2006.
www.health.gov.au/palliativecare
“Fast Fact & Concept #008 – Morphine & hastened death”, Von Gunten, C.
www.eperc.mcw.edu/fastFact
“Clinical Practice Guidelines for communicating prognosis and end-of-life issues with
adults in the advanced stages of a life-limiting illness, and their caregivers.”
www.mja.com.au MJA supplement, 18 June 2007, Volume 186, number 12.
“Long Term Care Assisting – Aged Care &
disability”, Scott, K., Webb, M., Sorrentino, S. & Gorek, B. Elselvier
Australia, Marrickville, NSW, 2204.
“National Palliative Care Strategy – A National Framework for Palliative Care service
Development”, Publications Production Unit, Commonwealth Department of Health
& Aged Care, 2000.
www.pallcare.asn.au
Updated 12/9/2009 87