Transcript Slide 1

STEPS TEAM
Supporting Treatment of Evolving Palliative Symptoms
Lynette Thacker
Clinical Nurse Specialist Paediatric Palliative Care
Paediatric Palliative Care Service
November 2011
Disclaimer: Whilst every effort has been made to ensure that the information in this presentation is accurate and referenced the author does not
accept any responsibility for the use by any third parties.
DEFINITIONS OF PAEDIATRIC PALLIATIVE CARE
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Palliative care for children is the active total care of the
child's body, mind and spirit, and also involves giving
support to the family.
It begins when illness is diagnosed, and continues
regardless of whether or not a child receives treatment
directed at the disease.
Health providers must evaluate and alleviate a child's
physical, psychological, and social distress.
Effective palliative care requires a broad multidisciplinary
approach that includes the family and makes use of
available community resources; it can be successfully
implemented even if resources are limited.
It can be provided in tertiary care facilities, in community
health centres and even in children's homes.
World Health Organisation 1998
OTHER DEFINITIONS
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Palliative care is an active and total approach to care,
embracing physical, emotional social and spiritual
elements.
It focuses on enhancement of quality of life for the child
and support for the family and includes the management
of distressing symptoms, provision of respite and care
following death and bereavement.
It is provided for children for whom curative treatment is
no longer an option and may extend over many years.
ACT/RCPCH 1997
TERMINOLOGY USED IN PALLIATIVE CARE
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End of Life Care -This refers to the period when a child
with advanced disease lives with the condition from
which they will die. It includes those with any chronic,
progressive, eventually fatal illness and could be a period
of weeks, months or years.
Terminal Care -This refers to care provided when a child
is thought to be in the dying phase and usually refers to
the last days or hours of life.
West Midlands Children’s and Young Peoples Toolkit 2011
THE ACT CATEGORIES
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Category 1 - This group includes life-threatening
conditions for which curative treatment may be
feasible but can fail. Here access to palliative
care services may be necessary when treatment
fails or during an acute crisis, irrespective of the
duration of that threat to life. On reaching longterm remission or following successful curative
treatment there is no longer a need for palliative
care services.
Examples: Cancer, irreversible organ failures of
heart, liver, kidney.
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Category 2 - This group includes
conditions where premature death is
inevitable, but where there may be long
periods of intensive treatment aimed at
prolonging life and allowing participation
in normal activities.
Examples: Cystic fibrosis, Duchenne
muscular dystrophy.
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Category 3 - Here progressive conditions
without curative treatment options are
included, where treatment is exclusively
palliative and may commonly extend over
many years.
Examples: Batten disease,
mucopolysaccharidoses.
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Category 4 -This group includes
irreversible but non-progressive conditions
causing severe disability leading to
susceptibility to health complications and
the possibility of premature death.
Examples: Severe cerebral palsy, multiple
disabilities such as following brain or
spinal cord injury, complex health care
needs with a high risk of an unpredictable
life-threatening event or episode.
Case studies
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Think about a child from each of the
categories.
Write down all the professionals/services
involved with each child.
WHO PROVIDES PAEDIATRIC PALLIATIVE CARE
Children and young
people with palliative
Specialist/
Tertiary
care needs and their
Paediatric palliative
families can access
care and symptom
the services they need
control services
according to the
Core palliative care services
different stage of the
These form the majority of services
child’s condition
A key worker will be
responsible for
ensuring joined-up
and co-ordinated
service provision
required by children and young people
with palliative care needs and their families,
e.g. community nursing teams, hospices,
bereavement services, sibling support
Universal services
The foundations for a good palliative care service includes services which
are available to all children and young people, e.g. GPs, education, playgroups
Adapted from Better Care: Better Lives (2008)
WHY DO WE NEED PAEDIATRIC PALLIATIVE
CARE SERVICES
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With medical advances many children and young people
with complex conditions are living longer.
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There are increasing numbers of adolescents with
palliative care needs and problems.
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Difficulties are experienced during transition from
children to adult services, as neither are suitable to meet
many young peoples needs.
Palliative Care Symptoms - General
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Take a thorough nursing assessment, talk with the family.
Regular reassessment of their symptoms in the same way as any
child who is unwell. Generally, symptoms deteriorating every week
reassess every 3 weeks, every day reassess every 3 days, every
hour reassess every 3 hours.
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All symptoms should be explored and addressed as part of a holistic
assessment, including physical, psychological, spiritual and social.
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Remember that parents know their child well.
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Parents observations are key to understanding the child’s symptom
progression and it’s impact upon them and the family.
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When assessing a child consider: What do we know about this
condition, presentation, progression and symptoms in end stage
disease?
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What complications have been evident?
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What are the child’s symptoms at present?
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What has already been tried and with what effect?
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Palliative care emergencies in this child?
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Anticipate management and support needed.
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Explain the symptoms and their management to the
child and their family.
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Discuss potential complications and management of these.
Discuss a plan to manage the symptoms with them that is
acceptable to them and place of care (home, hospital, hospice).
Plan reassessment period.
Ensure that family and staff know how to access care including 24hr
advice.
Communicate well between professionals and family, ensuring clear
documentation of symptom progression and management.
Don’t be afraid to say that you don’t know and be willing to seek
advice from others
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In terms of treatment:
Keep treatment as simple as possible
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Stick to one drug per symptom where possible
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Involve the child & family in decisions re treatment choices
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Manage with oral preparations where possible
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Plan for anticipated symptoms
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Listen to the child & family’s account
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Ensure management is reviewed in an agreed manner
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Regularly review the overall medications being given. Do all remain
necessary? Consider rationalising drug use, especially in the terminal
stage.
Pain
Wong-Baker FACES Pain Rating Scale
Numeric Rating Scale
0
1
No Pain
2
Mild
3
4
Moderate
5
6
7 8
Severe
9 10
Worst
Possible
Assess using appropriate tool for verbal or non-verbal child.
Not all pain can or needs to be controlled with
medication.
Analgesia can be a combination of non opiate
and adjuvant drugs or in
combination with opiates.
Non-pharmacological approaches can be
used instead of and in combination with
medication
e.g. discussing fears, distraction, positioning
and warmth.
There may also be more than one source of pain.
When Do Children Experience Pain
Think about a child you’ve cared for that has a
palliative care condition, when have they
experience pain and what have you already used
to manage this pain.
Total pain
Spiritual
Emotional
TOTAL
PAIN
Physical
Social
W.H.O.
ANALGESIC LADDER
3
2
1
Weak opioid
+/- adjuvant
Non-opioid
+/- adjuvant
Mild Pain
Paracetamol
NSAID – Ibuprofen
Moderate Pain
Codeine
Transaxmic Acid
Strong opioid
+/- adjuvant
Severe Pain
Morphine
Diamorphine
Fentanyl
Golden Rules
Adjuvant Analgesics
‘Adjuvant’ = not primarily analgesic but can improve pain in certain
circumstances
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Neuropathic - anticonvulsants (carbamazepine, gabapentin),
antidepressants (amitriptyline), NMDA receptor antagonists (methadone,
ketamine)
Bone - NSAIDs, bisphosphonates, RTx, chemo
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Muscle spasm - Benzos, baclofen, tizanidine, botox
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Cerebral irritation- Benzos, phenobarb
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Inflammatory/Oedema – Steroids
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Non-pharmacological - Physio, Psychology…..
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Initiating strong opioid therapy
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What drug?
Morphine - short acting formulation (Oramorph, Sevredol)
By mouth if possible
What dose?
1mg/kg/day = total daily dose = 30mg
30mg ÷ 6 = 4 hourly dose = 5mg
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And for breakthrough pain?
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Give the 4 hourly dose (5mg) as required
Titration phase
Aim – to match the amount of analgesia given with the degree of pain
experienced
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Add up all doses taken in 24 hours so if 6 doses x 5mg
30mg + 30mg = 60mg
60mg ÷ 6 = 10mg
Prescribe 10mg 4hrly and 10mg prn for breakthrough pain
Maintenance phase
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More convenient opioid preparations
 MST
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Total daily Oramorph requirement: 60mg
Appropriate MST dose: 30mg bd
Diamorphine SCI
Total Oramorph requirement: 60mg
 Appropriate Diamorphine dose: 20mg/24hrs
= 60mg/3 as Diamorphine 1/3rd stronger than Oral morphine
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Prescribe breakthrough analgesia
Calculations:
Initiating Phase
What dose?
Child weight 10kg, 25kg, 50kg
total daily dose =
4 hourly dose =
Breakthrough pain =
Calculations:
Titration phase
Used 4 breakthrough doses over 24 hours
New total daily =
New 4 hourly dose =
New breakthrough dose =
Calculations:
Maintenance phase
MST
Total daily Oramorph requirement=
Appropriate MST dose =
Diamorphine SCI
Appropriate Diamorphine dose=
Calculations:
Changing to Diamorphine in subcutaneous syringe driver:
Maintance Dose of MST 20mg twice daily.
Breakthrough dose 6.5mgs used 9 times in past 48 hours.
Diamorphine dose for 24 hours =
How much Diamorphine is child receiving kg/hour=
Think about a child that you have cared for and write down
any other symptoms that were difficult:
How were they managed:
Nausea and Vomiting
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Carefully consider the cause of nausea and vomiting.
It may not be appropriate to offer terminally ill children, close to
death, enteral feeding.
Most children do not require large amounts of fluid and mouth care
alone will help them to remain comfortable.
Parental anxiety around nutrition is very common. Effective control
of nausea and vomiting, constipation and mucositis will help to
maintain some degree of dietary intake.
Try to give fluids as the child tolerates. Interesting drinks, jellies,
ice-lollies and ice cream can all help, and if the child is still eating,
offer small portions.
Brain:
(Raised ICP,
Tumour,Oedema)
H1 & Physical
Psychological:
Vestibular:
(Anxiety,
Anticipation)
Holistic & Benzo Recep
(Vertigo,Travel sickness)
ACh & H1
Vagus:
ACh
Blood Toxins:
Liver damage:
(Medication,
Infection, constipation)
D2 5HT2
5HT3&4
(Focal deposits, Diffuse disease)
Physical 5HT4
Stomach/Bowel:
(Mechanical: Obstruction,Reflux)
(Gastrointestinal damage:
Chemotherapy
Radiotherapy, Obstruction)
D2 5HT3&4
Physical
Antiemetic receptors
Twycross R, Back I. Nausea and vomiting in advanced cancer. European Journal of
Palliative Care 1998;5(2):39-45.
Metoclopramide
D2
++
H1
0
ACh
0
5HT2
0
5HT3
(+)
5HT4
++
Domperidone
++
0
0
0
0
0
Ondansetron
0
0
0
0
+++
0
Cyclizine
0
++
++
0
0
0
Hyoscine
0
0
+++
0
0
0
Haloperidol
+++
0
0
0
0
0
Prochlorperazine
++
+
0
0
0
0
Chlorpromazine
++
++
+
0
0
?
Levomepromazine
++
+++
++
+++
0
?
Gastro-Oesophageal Reflux
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Lax gastro-oesophageal sphincter D2 blockers (eg domperidone,
metoclopramide)
Painful and dangerous acid reflux H2 blockers (eg ranitidine)
Proton blockers (eg omeprazole)
Gaviscon
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Loss of normal reflex motility
Change feed timings, D2 blockers
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Obstruction
Avoid prokinetics if colicky pain
Steroids may help if tumour is cause
Don’t prescribe prokinetic and
anticholinergic together
Dyspnoea, Coughing and Secretions
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Dyspnoea is a subjective sensation of breathlessness, and a very
frightening symptom.
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Always assess for a reversible cause of the breathlessness and treat
accordingly
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Use simple measures first e.g, posture, humidity, fresh air and fan.
Anxiety is a major component of breathlessness.
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Excess upper airway secretions are common and can be particularly
distressing for the child and the family.
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Excessive suction should be discouraged as it is unpleasant for the
child and may stimulate production of more secretions.
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Oxygen may reassure and may not be needed continuously. Oxygen
is generally only recommended for children who have benefited
from it previously.
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Remember that not all dyspnoeic patients are hypoxic, that oxygen is a
drug and should be prescribed as such, and that oxygen may depress the
respiratory drive and therefore be harmful.
In toddlers the equipment can be seen as frightening, causing increased
anxiety and worsen the breathlessness.
In palliative care, the monitoring of oxygen saturations is not always
recommended. It may be better to look at the child and their condition
rather than the numbers.
Dyspnoea is common in neurodegenerative disorders due to weakened
respiratory muscles and the inability to clear secretions. Physiotherapy
should be done gently.
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Thick secretions can be managed with nebulised normal saline. Consider
nebulised bronchodilators.
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Oral morphine or subcutaneous diamorphine, initially given at half the
minimum analgesic dose, can help to settle dyspnoea.
Bleeding
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The sight of blood is distressing to the child, parent and
carer alike. If bleeding is likely to happen, a gentle
warning may help to reduce distress and shock for the
parents.
It is important to agree a platelet transfusion protocol
with the family in advance. Generally only if the child is
symptomatic with bleeding that is overt and persistent
should platelets be given.
If bleeding does occur the use of red towels and
blankets may help minimise visual the shock.
Consider using tranexamic acid orally or topically for oral
bleeding.
Convulsions & Muscle Spasms
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Convulsions and muscle spasms are most commonly seen in the palliative
care setting in children with neurodegenerative disorders.
Those with neurodegenerative disorders will often already be on
anticonvulsant medications and parents/carers will be knowledgeable about
recognising and treating convulsions. For these children convulsions are
often variable in type and may become frequent and severe and more
difficult to control towards the end of life.
Children may be very distressed when having repeated muscle spasms.
Early involvement from a physiotherapist can be useful and they can give
advise on positioning, seating, handling that may prevent positioning that
can cause muscle spasm.
An increased muscle tone and spasm may be the only thing that allows the
child to sit or stand up. Certain treatments may therefore decrease their
mobility, head control, airway management and general posture and
medications can cause unnecessary sedation.
In the terminal stages seizures tend to become more severe and frequent.
The child may not be able to absorb medications at this stage so
subcutaneous midazolam or phenobarbitone may need to be considered.
Restlessness/Agitation
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Try to nurse in a calm, peaceful, familiar environment. A parent or
trusted adult being present may help. Address the fears and remove
pain or other symptoms or inadequate positioning.
Sedation
 It may be neccessay during the final stages of the child’s illness to
manage severe distressing agitation.
 It is important to first ensure that all other potential contributory
underlying symptoms have been addressed and that the potential
for respiratory depression has been considered.
 Ensure agitation is not pain related (including full bladder) and
explore the child’s fears.
 Oral diazepam or amitryptyline can be useful, particularly if there is
sleep disturbance or an element of depression.
 A continuous infusion of Midazolam (sedating and anxiolytic) can be
used.
Infection
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Infection is one of the commonest causes of the terminal event in
children with a life threatening condition. Infections should be
treated when its effect is contributing to symptoms.
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Always discuss and record the course of action that has been taken
with the parents and the child when appropriate.
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Use of intravenous antibiotics needs to be carefully justified in a
terminal setting.
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Whatever decision is made ensure the parents are comfortable as
possible as it may affect their grieving process. Sometimes
antibiotics are necessary e.g. pain relief for an acute ear infection to
give symptom relief, when parents have otherwise decided on no
more treatment.
Constipation
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Liaise with parents, as they know their child’s bowel habits best.
There may be a wide variety of causes of constipation, including,
inactivity, especially if in a wheelchair long term, neurological
conditions gut dysmotility, decreased food intake, fear of opening
bowels, medication especially opiates.
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If a prophylactic prescription for a laxative is required, consider:
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Constipation induced by opiates will require stimulant and stool
softener Movicol is often used.
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The child may need a suppository or an enema if these do not work
or if they refuse to take the medication, but may not be acceptable
to them, needing sensitive discussion.
Bladder
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Do not get too concerned about falling urine output in the terminal
days.
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Bladder spasms can be treated with Oxybutilin
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Obstruction may require catheterisation for comfort
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Retention arising from use of opioids may be transient, and simple
manoeuvres such as gentle expression, warm baths etc may be
sufficient. Fentanyl causes less urinary retention.
The loss of bladder function in a child who has previously been
continent can be a source of great distress for themselves and their
parents. The use of pads is non-invasive and simple, but needs tact
and sensitivity to introduce.
Sleeping difficulties
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Try to address the child’s fears. Whilst sleep patterns may be very
disrupted, try to optimise the bedtime routine.
Consider complimentary therapies to aid relaxation. Try to disturb the child
as little as possible overnight, for example, if possible, reschedule
medication.
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Medication may be required, Melatonin is useful for children who have
neurological disorders, sometimes sedation is required.
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Psychological
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Give the family time and be prepared to listen. Providing honest answers to
straight questions can allay fears and anxieties.
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In a child manifesting clinical symptoms of anxiety do not be afraid to use
medication as an adjuvant to counselling and support. Symptoms may be
very different to adults – younger children tend to regress and develop
behavioural problems, older children may have nightmares, insomnia or
become introspective. Insomnia is a problem for the child and the parents.
Oral Care
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Good oral/mouth care can enhance the quality of life of children in the
palliative care setting.
Signs may include a swollen mouth, ulceration, candida, inability to salivate,
painful swallowing, dry tongue and cracked lips. The cause should be
identified, discomfort and pain treated. An anti fungal is often needed.
If a child is old enough and able to use a soft toothbrush this should be
continued as long as possible. The parents may like to help with this part of
their child’s care. A finger tooth brush is often needed in the terminal
phase.
If the child has bleeding gums, tranexamic acid may be used as a
mouthwash. If the toothbrush is too sore they may like to use cotton swabs
soaked in water or mouthwash swabbed around the mouth.
They may also like to use Benzydamine spray or mouthwash as analgesia
and Vaseline (unless contraindicated by the use of oxygen) or lip balm for
cracked lips. Biotene is a useful saliva replacement gel. It is helpful to start
this early, preventatively, before they need it to improve acceptability.
Skin care
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Good hygiene is important, and attention to hair and nail
presentation must not be overlooked.
Children often become immobile and their skin becomes
very vulnerable to breakdown with poor subsequent
healing. It is important to consider the risks of pressure
areas and use pressure-relieving devises when
necessary.
Hoists and slings may also be needed especially if caring
for a bigger child.
If the skin breaks down advice may be sort from the
tissue viability team regarding the appropriate dressings
to use.
What do we need to consider to care for a child at home:
Consider the child’s and family’s understanding of condition.
Child’s needs assessed, plan of care developed with child and family.
Communication and information provided to child and family appropriate
to age and understanding.
Advanced care planning should incorporate child’ and family’s wishes.
Consider child’s and family’s religious and spiritual needs.
Anticipate symptoms and have medication and medication protocols at
home.
Consider, discuss and decide if any interventions need to be
discontinued.
Give family contact numbers for emergency, out of hours services.
Inform all necessary services of plan.
Give family opportunity to discuss plans for after death including who
will support them.