STEPS TEAM Supporting Treatment of Evolving Palliative Symptoms Lynette Thacker Clinical Nurse Specialist Paediatric Palliative Care Paediatric Palliative.

STEPS TEAMSTEPS TEAMSupporting Treatment of Evolving Palliative Supporting Treatment of Evolving Palliative

SymptomsSymptoms

Lynette ThackerClinical Nurse Specialist Paediatric Palliative

CarePaediatric Palliative Care Service

November 2011Disclaimer: 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 DEFINITIONS OF PAEDIATRIC PALLIATIVE CARECARE

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

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

OTHER DEFINITIONSOTHER DEFINITIONS

TERMINOLOGY USED IN PALLIATIVE TERMINOLOGY USED IN PALLIATIVE CARECARE

End of Life Care -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 -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 West Midlands Children’s and Young Peoples

Toolkit 2011Toolkit 2011

THE ACT CATEGORIES 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 long-term 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.

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.

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.

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 studiesCase studies

Think about a child from each of the Think about a child from each of the categories.categories.

Write down all the Write down all the professionals/services involved with professionals/services involved with each child.each child.

WHO PROVIDES PAEDIATRIC PALLIATIVE WHO PROVIDES PAEDIATRIC PALLIATIVE CARECARE

Specialist/Tertiary

Paediatric palliative care and symptom

control services

Core palliative care servicesThese form the majority of services

required by children and young people with palliative care needs and their families, e.g. community nursing teams, hospices,

bereavement services, sibling support

Universal servicesThe foundations for a good palliative care service includes services which

are available to all children and young people, e.g. GPs, education, playgroups

Children and young people with palliative care needs and their families can access the services they need according to the different stage of the child’s condition

A key worker will be responsible for ensuring joined-up and co-ordinated service provision

Adapted from Better Care: Better Lives (2008)

WHY DO WE NEED PAEDIATRIC WHY DO WE NEED PAEDIATRIC PALLIATIVE CARE SERVICESPALLIATIVE CARE SERVICES

With medical advances many children and young people with complex conditions are living longer.

There are increasing numbers of adolescents with palliative care needs and problems.

Difficulties are experienced during transition from children to adult services, as neither are suitable to meet many young peoples needs.

Palliative Care Symptoms - GeneralPalliative Care Symptoms - General

Take a thorough nursing assessment, talk with the family. Take a thorough nursing assessment, talk with the family.

Regular reassessment of their symptoms in the same way as Regular reassessment of their symptoms in the same way as any child who is unwell. Generally, symptoms deteriorating any child who is unwell. Generally, symptoms deteriorating every week reassess every 3 weeks, every day reassess every every week reassess every 3 weeks, every day reassess every 3 days, every hour reassess every 3 hours. 3 days, every hour reassess every 3 hours.

All symptoms should be explored and addressed as part of a All symptoms should be explored and addressed as part of a holistic assessment, including physical, psychological, spiritual holistic assessment, including physical, psychological, spiritual and social. and social.

Remember that parents know their child well.Remember that parents know their child well.

Parents observations are key to understanding the child’s Parents observations are key to understanding the child’s symptom progression and it’s impact upon them and the symptom progression and it’s impact upon them and the family. family.

When assessing a child consider: What do we know about this When assessing a child consider: What do we know about this condition, presentation, progression and symptoms in end condition, presentation, progression and symptoms in end stage disease? stage disease?

What complications have been evident? What complications have been evident?

What are the child’s symptoms at present? What are the child’s symptoms at present?

What has already been tried and with what effect? What has already been tried and with what effect?

Palliative care emergencies in this child? Palliative care emergencies in this child?

Anticipate management and support needed.Anticipate management and support needed.

Explain the symptoms and their management to Explain the symptoms and their management to the child and their family. the child and their family.

Discuss potential complications and management of these.Discuss potential complications and management of these.

Discuss a plan to manage the symptoms with them that is Discuss a plan to manage the symptoms with them that is acceptable to them and place of care (home, hospital, acceptable to them and place of care (home, hospital, hospice). hospice).

Plan reassessment period. Plan reassessment period.

Ensure that family and staff know how to access care Ensure that family and staff know how to access care including 24hr advice. including 24hr advice.

Communicate well between professionals and family, Communicate well between professionals and family, ensuring clear documentation of symptom progression and ensuring clear documentation of symptom progression and management. management.

Don’t be afraid to say that you don’t know and be willing to Don’t be afraid to say that you don’t know and be willing to seek advice from othersseek advice from others

In terms of treatment: In terms of treatment: Keep treatment as simple as possible Keep treatment as simple as possible

SStick to one drug per symptom where possible tick to one drug per symptom where possible

IInvolve the child & family in decisions re treatment choices nvolve the child & family in decisions re treatment choices

MManage with oral preparations where possible anage with oral preparations where possible

PPlan for anticipated symptoms lan for anticipated symptoms

LListen to the child & family’s account isten to the child & family’s account

EEnsure management is reviewed in an agreed manner nsure management is reviewed in an agreed manner

Regularly review the overall medications being given. Do all Regularly review the overall medications being given. Do all remain necessary? Consider rationalising drug use, remain necessary? Consider rationalising drug use, especially in the terminal stage. especially in the terminal stage.

Pain Pain Wong-Baker FACES Pain Rating ScaleWong-Baker FACES Pain Rating Scale

Numeric Rating ScaleNumeric Rating Scale

0 1 2 3 4 5 6 7 8 9 0 1 2 3 4 5 6 7 8 9 10 10

No Pain Mild Moderate Severe No Pain Mild Moderate Severe Worst Worst Possible Possible

Assess using appropriate tool for verbal or non-verbal Assess using appropriate tool for verbal or non-verbal child.child.

Non-pharmacological approaches can beNon-pharmacological approaches can beused instead of and in combination withused instead of and in combination withmedication medication e.g. discussing fears, distraction, e.g. discussing fears, distraction,

positioningpositioningand warmth. and warmth.

Not all pain can or needs to be controlled with medication. Analgesia can be a combination of non opiate and adjuvant drugs or incombination with opiates.

There may also be more than one source of pain.

When Do Children Experience PainWhen Do Children Experience Pain

Think about a child you’ve cared for that has Think about a child you’ve cared for that has aa

palliative care condition, when have theypalliative care condition, when have theyexperience pain and what have you already experience pain and what have you already

usedusedto manage this pain.to manage this pain.

Total pain

SpiritualSpiritual EmotionalEmotional

TOTAL PAIN

TOTAL PAIN

PhysicalPhysical SocialSocial

+/- adjuvant

Non-opioid

Weak opioid

Strong opioid

Pain persist

s or i

ncreases

W.H.O. ANALGESIC LADDER

+/- adjuvant

+/- adjuvant

1

2

3

Mild PainParacetamolNSAID – Ibuprofen

Moderate PainCodeineTransaxmic Acid

Severe PainMorphineDiamorphineFentanyl

Golden RulesGolden Rules

Adjuvant AnalgesicsAdjuvant Analgesics‘‘Adjuvant’ = not primarily analgesic but can improve pain in certain Adjuvant’ = not primarily analgesic but can improve pain in certain

circumstancescircumstances

Neuropathic - Neuropathic - anticonvulsants (carbamazepine, gabapentin), anticonvulsants (carbamazepine, gabapentin), antidepressants (amitriptyline), NMDA receptor antagonists antidepressants (amitriptyline), NMDA receptor antagonists (methadone, ketamine(methadone, ketamine))

Bone - Bone - NSAIDs, bisphosphonates, RTx, chemoNSAIDs, bisphosphonates, RTx, chemo

Muscle spasm - Muscle spasm - Benzos, baclofen, tizanidine, botoxBenzos, baclofen, tizanidine, botox

Cerebral irritation- Cerebral irritation- Benzos, phenobarbBenzos, phenobarb

Inflammatory/Oedema – Inflammatory/Oedema – SteroidsSteroids

Non-pharmacological - Non-pharmacological - Physio, Psychology…..Physio, Psychology…..

Initiating strong opioid therapyInitiating strong opioid therapy

What drug?What drug?Morphine - short acting formulation (Oramorph, Sevredol)Morphine - short acting formulation (Oramorph, Sevredol)By mouth if possibleBy mouth if possible

What dose?What dose?1mg/kg/day = total daily dose = 30mg1mg/kg/day = total daily dose = 30mg30mg ÷ 6 = 4 hourly dose = 5mg30mg ÷ 6 = 4 hourly dose = 5mg

And for breakthrough pain? And for breakthrough pain?

Give the 4 hourly dose (5mg) as requiredGive the 4 hourly dose (5mg) as required

Titration phaseTitration phase

Aim – to match the amount of analgesia given with the degree Aim – to match the amount of analgesia given with the degree of pain experiencedof pain experienced

Add up all doses taken in 24 hours so if 6 doses x 5mgAdd up all doses taken in 24 hours so if 6 doses x 5mg

30mg + 30mg = 60mg30mg + 30mg = 60mg

60mg ÷ 6 = 10mg60mg ÷ 6 = 10mg

Prescribe 10mg 4hrly and 10mg prn for breakthrough painPrescribe 10mg 4hrly and 10mg prn for breakthrough pain

Maintenance phaseMaintenance phase

More convenient opioid preparationsMore convenient opioid preparations MSTMST

Total daily Oramorph requirement: 60mgTotal daily Oramorph requirement: 60mg Appropriate MST dose: 30mg bdAppropriate MST dose: 30mg bd

Diamorphine SCIDiamorphine SCI Total Oramorph requirement: 60mgTotal Oramorph requirement: 60mg Appropriate Diamorphine dose: 20mg/24hrsAppropriate Diamorphine dose: 20mg/24hrs

= 60mg/3 as Diamorphine 1/3= 60mg/3 as Diamorphine 1/3rdrd stronger than Oral stronger than Oral morphinemorphine

Prescribe breakthrough analgesiaPrescribe breakthrough analgesia

Calculations: Calculations: Initiating PhaseInitiating Phase

What dose?What dose?Child weight 10kg, 25kg, 50kgChild weight 10kg, 25kg, 50kg

total daily dose =total daily dose =

4 hourly dose =4 hourly dose =

Breakthrough pain =Breakthrough pain =

Calculations:Calculations:

Titration phaseTitration phase

Used 4 breakthrough doses over 24 hoursUsed 4 breakthrough doses over 24 hours New total daily =New total daily =

New 4 hourly dose =New 4 hourly dose =

New breakthrough dose =New breakthrough dose =

Calculations:Calculations:Maintenance phaseMaintenance phase

MSTMST

Total daily Oramorph requirement=Total daily Oramorph requirement=

Appropriate MST dose =Appropriate MST dose =

Diamorphine SCIDiamorphine SCI

Appropriate Diamorphine dose=Appropriate Diamorphine dose=

Calculations:Calculations:

Changing to Diamorphine in subcutaneous syringe Changing to Diamorphine in subcutaneous syringe driver:driver:

Maintance Dose of MST 20mg twice daily.Maintance Dose of MST 20mg twice daily.

Breakthrough dose 6.5mgs used 9 times in past 48 Breakthrough dose 6.5mgs used 9 times in past 48 hours.hours.

Diamorphine dose for 24 hours =Diamorphine dose for 24 hours =

How much Diamorphine is child receiving kg/hour=How much Diamorphine is child receiving kg/hour=

Think about a child that you have cared for and Think about a child that you have cared for and write downwrite down

any other symptoms that were difficult:any other symptoms that were difficult:

How were they managed:How were they managed:

Nausea and VomitingNausea and Vomiting Carefully consider the cause of nausea and vomiting. Carefully consider the cause of nausea and vomiting.

It may not be appropriate to offer terminally ill children, It may not be appropriate to offer terminally ill children, close to death, enteral feeding. close to death, enteral feeding.

Most children do not require large amounts of fluid and Most children do not require large amounts of fluid and mouth care alone will help them to remain comfortable. mouth care alone will help them to remain comfortable.

Parental anxiety around nutrition is very common. Effective Parental anxiety around nutrition is very common. Effective control of nausea and vomiting, constipation and mucositis control of nausea and vomiting, constipation and mucositis will help to maintain some degree of dietary intake. will help to maintain some degree of dietary intake.

Try to give fluids as the child tolerates. Interesting drinks, Try to give fluids as the child tolerates. Interesting drinks, jellies, ice-lollies and ice cream can all help, and if the child jellies, ice-lollies and ice cream can all help, and if the child is still eating, offer small portions. is still eating, offer small portions.

Psychological:(Anxiety,

Anticipation) Holistic & Benzo Recep

Liver damage:(Focal deposits, Diffuse disease)

Physical 5HT4

Stomach/Bowel:(Mechanical: Obstruction,Reflux)

(Gastrointestinal damage: Chemotherapy

Radiotherapy, Obstruction)D2 5HT3&4

Physical

Blood Toxins: (Medication,

Infection, constipation)D2 5HT2 5HT3&4

Vestibular: (Vertigo,Travel sickness)

ACh & H1

Brain: (Raised ICP,

Tumour,Oedema)H1 & Physical

Vagus:ACh

Antiemetic receptorsTwycross R, Back I. Nausea and vomiting in advanced cancer. European Journal of Palliative Care 1998;5(2):39-45. D2 H1 ACh 5HT2 5HT3 5HT4Metoclopramide ++ 0 0 0 (+) ++

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 RefluxGastro-Oesophageal Reflux

Lax gastro-oesophageal sphincter D2 blockers (eg domperidone, metoclopramide)

Painful and dangerous acid reflux H2 blockers (eg ranitidine) Proton blockers (eg omeprazole)

Gaviscon

Loss of normal reflex motility Change feed timings, D2 blockers

Obstruction Avoid prokinetics if colicky pain Steroids may help if tumour is

cause Don’t prescribe prokinetic and

anticholinergic together

Dyspnoea, Coughing and SecretionsDyspnoea, Coughing and Secretions

Dyspnoea is a subjective sensation of breathlessness, and a Dyspnoea is a subjective sensation of breathlessness, and a very frightening symptom.very frightening symptom.

Always assess for a reversible cause of the breathlessness Always assess for a reversible cause of the breathlessness and treat accordinglyand treat accordingly

Use simple measures first e.g, posture, humidity, fresh air Use simple measures first e.g, posture, humidity, fresh air and fan. Anxiety is a major component of breathlessness. and fan. Anxiety is a major component of breathlessness.

Excess upper airway secretions are common and can be Excess upper airway secretions are common and can be particularly distressing for the child and the family.particularly distressing for the child and the family.

Excessive suction should be discouraged as it is unpleasant Excessive suction should be discouraged as it is unpleasant for the child and may stimulate production of more for the child and may stimulate production of more secretions.secretions.

Oxygen may reassure and may not be needed Oxygen may reassure and may not be needed continuously. Oxygen is generally only recommended for continuously. Oxygen is generally only recommended for children who have benefited from it previously. children who have benefited from it previously.

Remember that not all dyspnoeic patients are hypoxic, that Remember that not all dyspnoeic patients are hypoxic, that oxygen is a drug and should be prescribed as such, and that oxygen is a drug and should be prescribed as such, and that oxygen may depress the respiratory drive and therefore be oxygen may depress the respiratory drive and therefore be harmful. harmful.

In toddlers the equipment can be seen as frightening, causing In toddlers the equipment can be seen as frightening, causing increased anxiety and worsen the breathlessness. increased anxiety and worsen the breathlessness.

In palliative care, the monitoring of oxygen saturations is not In palliative care, the monitoring of oxygen saturations is not always recommended. It may be better to look at the child and always recommended. It may be better to look at the child and their condition rather than the numbers. their condition rather than the numbers.

Dyspnoea is common in neurodegenerative disorders due to Dyspnoea is common in neurodegenerative disorders due to weakened respiratory muscles and the inability to clear weakened respiratory muscles and the inability to clear secretions. Physiotherapy should be done gently. secretions. Physiotherapy should be done gently.

Thick secretions can be managed with nebulised normal saline. Thick secretions can be managed with nebulised normal saline. Consider nebulised bronchodilators. Consider nebulised bronchodilators.

Oral morphine or subcutaneous diamorphine, initially given at half Oral morphine or subcutaneous diamorphine, initially given at half the minimum analgesic dose, can help to settle dyspnoea. the minimum analgesic dose, can help to settle dyspnoea.

Bleeding Bleeding

The sight of blood is distressing to the child, The sight of blood is distressing to the child, parent and carer alike. If bleeding is likely to parent and carer alike. If bleeding is likely to happen, a gentle warning may help to reduce happen, a gentle warning may help to reduce distress and shock for the parents. distress and shock for the parents.

It is important to agree a platelet transfusion It is important to agree a platelet transfusion protocol with the family in advance. Generally protocol with the family in advance. Generally only if the child is symptomatic with bleeding that only if the child is symptomatic with bleeding that is overt and persistent should platelets be given. is overt and persistent should platelets be given.

If bleeding does occur the use of red towels and If bleeding does occur the use of red towels and blankets may help minimise visual the shock. blankets may help minimise visual the shock.

Consider using tranexamic acid orally or topically Consider using tranexamic acid orally or topically for oral bleeding. for oral bleeding.

Convulsions & Muscle Spasms Convulsions & Muscle Spasms

Convulsions and muscle spasms are most commonly seen in the Convulsions and muscle spasms are most commonly seen in the palliative care setting in children with neurodegenerative disorders. palliative care setting in children with neurodegenerative disorders.

Those with neurodegenerative disorders will often already be on Those with neurodegenerative disorders will often already be on anticonvulsant medications and parents/carers will be anticonvulsant medications and parents/carers will be knowledgeable about recognising and treating convulsions. For these knowledgeable about recognising and treating convulsions. For these children convulsions are often variable in type and may become children convulsions are often variable in type and may become frequent and severe and more difficult to control towards the end of frequent and severe and more difficult to control towards the end of life. life.

Children may be very distressed when having repeated muscle Children may be very distressed when having repeated muscle spasms. spasms.

Early involvement from a physiotherapist can be useful and they can Early involvement from a physiotherapist can be useful and they can give advise on positioning, seating, handling that may prevent give advise on positioning, seating, handling that may prevent positioning that can cause muscle spasm. positioning that can cause muscle spasm.

An increased muscle tone and spasm may be the only thing that An increased muscle tone and spasm may be the only thing that allows the child to sit or stand up. Certain treatments may therefore allows the child to sit or stand up. Certain treatments may therefore decrease their mobility, head control, airway management and decrease their mobility, head control, airway management and general posture and medications can cause unnecessary sedation. general posture and medications can cause unnecessary sedation.

In the terminal stages seizures tend to become more severe and In the terminal stages seizures tend to become more severe and frequent. The child may not be able to absorb medications at this frequent. The child may not be able to absorb medications at this stage so subcutaneous midazolam or phenobarbitone may need to stage so subcutaneous midazolam or phenobarbitone may need to be considered.be considered.

Restlessness/Agitation Restlessness/Agitation

Try to nurse in a calm, peaceful, familiar environment. A Try to nurse in a calm, peaceful, familiar environment. A parent or trusted adult being present may help. Address the parent or trusted adult being present may help. Address the fears and remove pain or other symptoms or inadequate fears and remove pain or other symptoms or inadequate positioning. positioning.

Sedation Sedation It may be neccessay during the final stages of the child’s It may be neccessay during the final stages of the child’s

illness to manage severe distressing agitation. illness to manage severe distressing agitation. It is important to first ensure that all other potential It is important to first ensure that all other potential

contributory underlying symptoms have been addressed contributory underlying symptoms have been addressed and that the potential for respiratory depression has been and that the potential for respiratory depression has been considered. considered.

Ensure agitation is not pain related (including full bladder) Ensure agitation is not pain related (including full bladder) and explore the child’s fears. and explore the child’s fears.

Oral diazepam or amitryptyline can be useful, particularly if Oral diazepam or amitryptyline can be useful, particularly if there is sleep disturbance or an element of depression. there is sleep disturbance or an element of depression.

A continuous infusion of Midazolam (sedating and A continuous infusion of Midazolam (sedating and anxiolytic) can be used. anxiolytic) can be used.

Infection Infection

Infection is one of the commonest causes of the terminal Infection is one of the commonest causes of the terminal event in children with a life threatening condition. Infections event in children with a life threatening condition. Infections should be treated when its effect is contributing to should be treated when its effect is contributing to symptoms. symptoms.

Always discuss and record the course of action that has Always discuss and record the course of action that has been taken with the parents and the child when been taken with the parents and the child when appropriate. appropriate.

Use of intravenous antibiotics needs to be carefully justified Use of intravenous antibiotics needs to be carefully justified in a terminal setting. in a terminal setting.

Whatever decision is made ensure the parents are Whatever decision is made ensure the parents are comfortable as possible as it may affect their grieving comfortable as possible as it may affect their grieving process. Sometimes antibiotics are necessary e.g. pain process. Sometimes antibiotics are necessary e.g. pain relief for an acute ear infection to give symptom relief, relief for an acute ear infection to give symptom relief, when parents have otherwise decided on no more when parents have otherwise decided on no more treatment. treatment.

Constipation Constipation

Liaise with parents, as they know their child’s bowel habits Liaise with parents, as they know their child’s bowel habits best. best.

There may be a wide variety of causes of constipation, There may be a wide variety of causes of constipation, including, inactivity, especially if in a wheelchair long term, including, inactivity, especially if in a wheelchair long term, neurological conditions gut dysmotility, decreased food neurological conditions gut dysmotility, decreased food intake, fear of opening bowels, medication especially intake, fear of opening bowels, medication especially opiates.opiates.

If a prophylactic prescription for a laxative is required, If a prophylactic prescription for a laxative is required, consider: consider:

Constipation induced by opiates will require stimulant and Constipation induced by opiates will require stimulant and stool softener Movicol is often used. stool softener Movicol is often used.

The child may need a suppository or an enema if these do 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 work or if they refuse to take the medication, but may not be acceptable to them, needing sensitive discussion. not be acceptable to them, needing sensitive discussion.

Bladder Bladder

Do not get too concerned about falling urine output in the Do not get too concerned about falling urine output in the terminal days.terminal days.

Bladder spasms can be treated with Oxybutilin Bladder spasms can be treated with Oxybutilin

Obstruction may require catheterisation for comfort Obstruction may require catheterisation for comfort

Retention arising from use of opioids may be transient, and Retention arising from use of opioids may be transient, and simple manoeuvres such as gentle expression, warm baths simple manoeuvres such as gentle expression, warm baths etc may be sufficient. Fentanyl causes less urinary etc may be sufficient. Fentanyl causes less urinary retention. retention.

The loss of bladder function in a child who has previously The loss of bladder function in a child who has previously been continent can be a source of great distress for been continent can be a source of great distress for themselves and their parents. The use of pads is non-themselves and their parents. The use of pads is non-invasive and simple, but needs tact and sensitivity to invasive and simple, but needs tact and sensitivity to introduce. introduce.

Sleeping difficulties Sleeping difficulties

Try to address the child’s fears. Whilst sleep patterns may be very Try to address the child’s fears. Whilst sleep patterns may be very disrupted, try to optimise the bedtime routine. disrupted, try to optimise the bedtime routine.

Consider complimentary therapies to aid relaxation. Try to disturb Consider complimentary therapies to aid relaxation. Try to disturb the child as little as possible overnight, for example, if possible, the child as little as possible overnight, for example, if possible, reschedule medication. reschedule medication.

Medication may be required, Melatonin is useful for children who Medication may be required, Melatonin is useful for children who have neurological disorders, sometimes sedation is required.have neurological disorders, sometimes sedation is required.

PsychologicalPsychological

Give the family time and be prepared to listen. Providing honest Give the family time and be prepared to listen. Providing honest answers to straight questions can allay fears and anxieties. answers to straight questions can allay fears and anxieties.

In a child manifesting clinical symptoms of anxiety do not be In a child manifesting clinical symptoms of anxiety do not be afraid to use medication as an adjuvant to counselling and afraid to use medication as an adjuvant to counselling and support. Symptoms may be very different to adults – younger support. Symptoms may be very different to adults – younger children tend to regress and develop behavioural problems, older children tend to regress and develop behavioural problems, older children may have nightmares, insomnia or become introspective. children may have nightmares, insomnia or become introspective. Insomnia is a problem for the child and the parents.Insomnia is a problem for the child and the parents.

Oral Care Oral Care

Good oral/mouth care can enhance the quality of life of children in Good oral/mouth care can enhance the quality of life of children in the palliative care setting. the palliative care setting.

Signs may include a swollen mouth, ulceration, candida, inability Signs may include a swollen mouth, ulceration, candida, inability to salivate, painful swallowing, dry tongue and cracked lips. The to salivate, painful swallowing, dry tongue and cracked lips. The cause should be identified, discomfort and pain treated. An anti cause should be identified, discomfort and pain treated. An anti fungal is often needed. fungal is often needed.

If a child is old enough and able to use a soft toothbrush this 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 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 help with this part of their child’s care. A finger tooth brush is often needed in the terminal phase. often needed in the terminal phase.

If the child has bleeding gums, tranexamic acid may be used as a 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 mouthwash. If the toothbrush is too sore they may like to use cotton swabs soaked in water or mouthwash swabbed around the cotton swabs soaked in water or mouthwash swabbed around the mouth. mouth.

They may also like to use Benzydamine spray or mouthwash as They may also like to use Benzydamine spray or mouthwash as analgesia and Vaseline (unless contraindicated by the use of analgesia and Vaseline (unless contraindicated by the use of oxygen) or lip balm for cracked lips. Biotene is a useful saliva oxygen) or lip balm for cracked lips. Biotene is a useful saliva replacement gel. It is helpful to start this early, preventatively, replacement gel. It is helpful to start this early, preventatively, before they need it to improve acceptability. before they need it to improve acceptability.

Skin careSkin care

Good hygiene is important, and attention to hair Good hygiene is important, and attention to hair and nail presentation must not be overlooked. and nail presentation must not be overlooked.

Children often become immobile and their skin Children often become immobile and their skin becomes very vulnerable to breakdown with poor becomes very vulnerable to breakdown with poor subsequent healing. It is important to consider subsequent healing. It is important to consider the risks of pressure areas and use pressure-the risks of pressure areas and use pressure-relieving devises when necessary. relieving devises when necessary.

Hoists and slings may also be needed especially if Hoists and slings may also be needed especially if caring for a bigger child. caring for a bigger child.

If the skin breaks down advice may be sort from If the skin breaks down advice may be sort from the tissue viability team regarding the the tissue viability team regarding the appropriate dressings to use. appropriate dressings to use.

What do we need to consider to care for a child at What do we need to consider to care for a child at home: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 Anticipate symptoms and have medication and medication protocols atprotocols at

home.home.

Consider, discuss and decide if any interventions need to beConsider, discuss and decide if any interventions need to be

discontinued.discontinued.

Give family contact numbers for emergency, out of hours Give family contact numbers for emergency, out of hours services.services.

Inform all necessary services of plan.Inform all necessary services of plan.

Give family opportunity to discuss plans for after death Give family opportunity to discuss plans for after death including whoincluding who

will support them.will support them.