10 Management of neurological, nutritional and skin symptoms

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When you have completed this chapter you should be able to:

  1. Manage anxiety and depression.
  2. Manage fatigue.
  3. Manage anorexia and cachexia.
  4. Prevent and manage pressures sores.
  5. Manage fungating malodourous wounds.

Managing anxiety

10-1 What is anxiety?

Anxiety can be described as a feeling of apprehension and fear characterised by physical symptoms such as palpitations, sweating and feelings of stress. Anxiety is common in children who are living with life-threatening or life-limiting illnesses.

Anxiety is common in children living with serious life-threatening or life-limiting illnesses.

10-2 What are the signs that indicate a child may be anxious?

Common signs of anxiety include:

10-3 What are the possible causes of anxiety?

Possible causes are:

Uncontrolled pain, distressing symptoms, fear of procedures or abandonment by the parents can cause anxiety.

10-4 How should you manage anxiety in children?

Management of anxiety should include the following:

For further reading on providing child-friendly healthcare refer to: https://www.medbox.org/preview/533ea495-0868-43c7-ab67-6e461fcc7b89/doc.pdf

See chapter 3 for more information on talking to children about their illness.

10-5 When should medications be used to treat children’s anxiety?

The following guidelines on the use of medicines for anxiety are helpful:

Anxiety may need to be treated with medication at the end-of-life.

Managing depression

10-6 What is depression?

Depression is a state of low mood that can negatively affect a person’s thoughts, feelings and behaviour. There are both physical and emotional reasons that children and adolescents with a chronic illness become depressed. One of the most common physical causes of depression is ongoing, poorly controlled pain. Because some of the symptoms of their illness may overlap with symptoms of depression, it can be very difficult to diagnose depression. Depression in chronic illness is common and therefore must be considered in the palliative care setting.

Depression in chronic illness is common and therefore must be considered in the palliative care setting.

10-7 What are the symptoms and signs that a child may be depressed?

When any of following become severe and prolonged and interfere with the child’s normal daily functioning, it may indicate that the child is suffering from depression:

Withdrawal, sadness and lack of energy are indicators of depression in children.

10-8 How can you assess whether a young child is depressed?

It can be difficult to assess whether a young child is depressed because they are not always able to express their feelings. It is best to observe the child’s behaviour for signs of withdrawal, regression and apathy and look out for repeated complaints like abdominal pain and headaches that have no obvious cause.

Observing a younger child’s behaviour over time will help determine if they are depressed.

10-9 How can you assess whether an older child or adolescent is depressed?

Using standardised assessment tools or short screening questions can be effective in determining whether an older child or adolescent may be depressed. Questions to ask include the following:

See the NICE guidelines for further information on assessing depression in children https://www.nice.org.uk/Guidance/CG28

10-10 Is it important to treat depression in children and adolescents?

Clinical depression is common in children and adolescents who are chronically ill and it is estimated that 28% of adolescents with chronic illnesses will attempt suicide. For this reason, it is important to start counselling and treatment of suspected depression as soon as there are recognisable features and assessment of symptoms has taken place.

There is a risk that chronically ill children will attempt to commit suicide if their depression is not recognised and treated.

10-11 What strategies can you use to help a child who is depressed?

Useful strategies include:

Provide both emotional support and counselling to children who are suffering with depression.

10-12 What anti-depressants can be used to treat depression?

Anti-depressants that can be used include:

  1. Selective serotonin reuptake inhibitors (SSRI’s), e.g. fluoxetine in children older than 8 years.
  2. Where other interventions have failed, tricyclic anti-depressants such as amitriptyline can be tried.
  3. Benzodiazepines can also be used in extreme cases.
There is some evidence that SSRI’s may increase the risk for suicidal thoughts and behaviours in a small subset of adolescents. Therefore, it is important to monitor them closely for the first couple of months when started on this treatment

Managing fatigue

10-13 What is fatigue?

Children describe fatigue as having a lack of energy or feeling too tired to want to do anything. It occurs as a result of the illness itself, emotional factors like anxiety and depression, treatments like chemotherapy, or at the end-of-life when the body is shutting down. It interferes with normal daily functioning and it has a significant impact on the child’s quality of life. It is important to identify and treat any reversible causes before considering it part of the end-of-life process.

Fatigue can result from a number of physical and emotional causes and impacts on the child’s quality of life.

10-14 What are the symptoms associated with fatigue?

Symptoms that are associated with fatigue include:

10-15 What are the causes of fatigue?

There are a number of causes of fatigue:

10-16 How can you help manage a child who is suffering from fatigue?

The aim of managing fatigue is to ensure that the child’s quality of life is not compromised and that the interventions are in line with the goals of care. A comprehensive history and clinical assessment of the child will help determine the possible cause of fatigue. Correct any of the reversible causes where appropriate and treat the symptoms associated with fatigue such as, pain, nausea and vomiting. Fatigue does not always respond well to pharmacological treatment such as corticosteroids, therefore a team approach may be beneficial to offer psychosocial, emotional and spiritual support to both the child and the family.

Fatigue does not respond well to medication and therefore treatment is directed at psychosocial, emotional and spiritual support.

10-17 What support and advice can be given to the child and the family?

Fatigue may continue despite treating the reversible causes. Families will need support, education and advice on how to help manage ongoing fatigue. Advice to the child and family will be in line with the goals of care and include the following:

Offer advice and education on how to manage the child’s fatigue at home.

Managing anorexia and cachexia

10-18 What is anorexia?

Anorexia is the loss of appetite which can be caused by a number of different factors ranging from a physical illness to psychological reasons. Anorexia is an important nutritional problem in children receiving palliative care as it leads to weight loss and possible cachexia.

Anorexia is a loss of appetite which can be caused by physical and emotional reasons.

10-19 What is cachexia?

Cachexia is a complex metabolic syndrome of severe weight loss characterised by a profound loss of muscle mass. This is caused by chronic and severe disease such as advanced cancer and AIDS. Often cachexia is irreversible.

Anorexia and cachexia are a complex process that involves numerous metabolic changes. They are important nutritional challenges in children receiving palliative care.

10-20 Are anorexia and cachexia common?

Yes, at the end-of life both are very common. Up to 80% of children with advanced cancer and AIDS will suffer from anorexia and cachexia which can be very distressing for the family and the care providers. Fatigue often accompanies anorexia and cachexia.

10-21 Why are anorexia and cachexia so distressing to both families and care providers?

Feeding a child is a natural, nurturing instinct so families may fear that the child is being left to ‘starve to death’ or ‘waste away’. Not being able to get a child to eat causes considerable distress amongst family members and healthcare providers alike.

10-22 What should you include in your assessment of anorexia and cachexia?

A comprehensive history and clinical assessment will assist in identifying any reversible factors that may be causing the anorexia. Include the following:

10-23 How will you manage a child with anorexia and cachexia?

It is very important to explain to the family why their child may have a decreased appetite and be losing weight. The family needs to be reassured that they are not causing harm or starving their child.

Other management will include:

Increasing calorie intake will not increase weight gain and improve the quality of life in the advanced stages of disease. Often this extra intake of foods and fluids puts an added burden on, without benefit to, the body if it is shutting down

It is vital to explain to parents that they are not starving or causing harm if their child does not want to eat.

10-24 Are there any medications that can help increase appetite?

A trial of corticosteroids may help increase appetite but should not be used if anorexia is the only symptom that will benefit from its use.

10-25 What should be done to help parents if their child will not eat?

Feeding a child is a natural instinct for parents. However, forcing a child to eat and drink orally or by nasogastric tube can often cause nausea, vomiting, abdominal distension and pain. Careful counselling must be offered to parents to assist them in coping with this difficult issue.

Managing pruritus

10-26 What is pruritus?

An unpleasant skin sensation that produces a desire to scratch. Another word that is used to describe pruritus is ‘itchiness’.

Pruritis is itchiness and a desire to scratch the skin.

10-27 What are the common causes of pruritus?

Causes can include the following:

10-28 Can opioids cause pruritus?

Yes. If a child develops generalised itchiness and continually seems to be rubbing their nose, the most likely cause is the opioids. This can be transitory, lasting for a few days, but it may be necessary to switch to other opioids if itchiness does not stop.

Pruritis caused by an opioid may be relieved by opioid switching.

10-29 How do you assess pruritus?

Important steps are:

  1. Take a history which includes:
    • What times of the day does the itching occur, e.g. continuous, specific times of the day or night?
    • The nature – is it burning, itchy, stinging, painful?
    • The location – generalised or localised?
    • Medication history?
  2. A clinical examination looking for signs of:
    • Skin dryness
    • Inflammation (dermatitis)
    • Rash
    • Jaundice
    • Chronic conditions such a psoriasis or eczema
    • Infections, such as scabies or chicken pox.

10-30 What non-pharmacological measures can you use to manage pruritus?

The general measures you can implement to help relieve the itch include:

Pruritus is often caused by dry skin so keep the skin moisturised.

10-31 What pharmacological interventions can you use to treat pruritus?

The following may help:

Topical anti-pruritic medications need to be applied to the skin several times a day.

Preventing and managing pressure sores

10-32 What is a pressure sore?

A pressure sore (pressure ulcer or bed sore) is damage that occurs to the skin and underlying tissues resulting in ulceration when the blood supply to that area is reduced, starving the tissue of oxygen and nutrients. Infants and children with serious illnesses, especially those with limited mobility, are always at risk of developing pressure sores. It is therefore very important that all care providers be aware of the risk of pressure sores when caring for these children.

10-33 Which children are at risk of developing pressure sores?

The following children are at risk:

Children who are immobile in bed are at risk of developing pressure sores.

10-34 What are the causes of pressure sores?

In addition to immobility the following may cause pressure sores:

  1. Local pressure: This can occur when the weight of the body presses down on the skin or from any object or equipment pressing on the skin such as a wheelchair, urinary catheter tubing, gastrostomy or nasogastric tube, splint, body brace, intravenous line, saturation probes or plaster cast.
  2. Friction: This is when the child’s skin is pulled or repeatedly rubbed against a surface such as a mattress, bedding or other equipment. This occurs when a child slides down in the bed or chair or by incorrect moving and handling.
  3. Moisture: If areas of the skin remain moist for extended periods of time they become more prone to breakdown and the likelihood of a pressure sore developing. Children who are incontinent or infants who lie in wet nappies are at risk.
  4. Previous skin damage: If the child has had a pressure ulcer in the past, the skin will be prone to further damage.

Immobility, local pressure, friction and moisture are the main causes of pressure sores.

10-35 Are there underlying contributing factors that may lead to a child developing pressure sores?

Yes, there are numerous contributing factors that can lead to a child developing pressure ulcers. These include:

10-36 Where on the body are pressure sores likely to develop?

Pressure sores occur most commonly in the following:

Pressure sores occur most commonly on the body at sites attached to medical devices, pressure point areas and areas that have poor circulation.

10-37 What are the warning signs that pressure sores may be developing?

Remember prevention is better than cure. It is vital to recognise the warning signs that a pressure sore may be developing. The warning signs include:

10-38 What measures can you put in place to prevent pressure sores?

The following will help to prevent pressure sores:

To prevent pressure sores turn the child regularly and provide good skin care.

10-39 What general measures need to be included in the management of a child with pressure sores?

Management will depend on the stage of the pressure sore and the goals of care, which includes maintaining comfort and dignity, especially if the child is at the end-of-life. Measures include:

Use analgesia when performing any type of procedure on pressure sores that may cause pain.

10-40 What wound specific measures can be used?

A number of measures are used:

To control bacteria in a pressure sore use dressings that contain silver sulphadiazine.

Managing fungating malodourous wounds

10-41 What is a fungating malodourous wound?

This is a distressing condition which most often occurs in children with advanced primary skin cancers, skin metastasis or tumours involving bone, muscle or connective tissue (such as rhabdomyosarcoma, osteosarcoma or Kaposi’s sarcoma). It occurs when the cancer starts to grow rapidly through the skin causing ulceration and necrosis. Fungating means that the damaged skin looks like a fungus.

10-42 What causes the malodour?

The malodour (bad smell) is caused by anaerobic bacteria in the necrotic (dead) tissue of the fungating wound.

Malodour is caused by anaerobic bacteria in the dead tissue.

10-43 How do you assess a child with a fungating malodorous wound?

A holistic assessment will be required and will include the following:

A holistic assessment will include assessment of the wound, pain assessment and the psychosocial impact the wound has on the child and family.

10-44 How do you manage a fungating malodourous wound?

Often these wounds will not heal. Therefore, it is important to set realistic goals of care that aim to improve the quality of life for the child and their family while maintaining the child’s comfort and dignity. In this type of wound, managing the odour rather than healing the wound, may be more important.

Management strategies include the following:

10-45 Are these wounds prone to bleeding?

Yes. These wounds are prone to bleeding because the tissue is very friable. Care needs to be taken when removing and changing dressings. Use warmed normal saline to moisten the dressing and where possible, use non-adherent dressings and moist wound products. If bleeding does occur, apply direct pressure for about 10 to 15 minutes.

10-46 What specific measures can be used to control the malodour?

It is very important to reduce odour as has this has a major effect on the wellbeing of the child and their family. It may be necessary to use both topical and systemic antibiotics to control the odour:

Management of a malodourous fungating wound aims mainly at reducing the odour.

10-47 What is the psychosocial impact of a malodourous wound and how can this be addressed?

Malodorous fungating wounds are very distressing to the child and the family because of the associated social disgust of ‘bad smells’ and the stigma related to an altered body image and appearance caused by the wound. There are often feelings of disgust, embarrassment, guilt and shame which can lead to withdrawal and social isolation, especially in adolescents who are self-conscious and parents who are embarrassed by the odour and discourage interactions with visitors.

10-48 How can you manage these psychosocial issues?

A team approach is essential to manage psychosocial distress as there are many different issues that will need to be dealt with. It is important that members of the team should include a social worker, psychologist or a counsellor who can offer social and psychological support to both the child and family. Other team members may include child counsellors, spiritual leaders and occupational therapists. Children are very aware and quick to sense other’s non-verbal reactions. A healthcare provider will need to be very aware of their own body language when treating a child with a malodorous wound. Healthcare providers can also become desensitised to odours therefore they need to listen to the child and family if they complain about the wound smelling.

Encourage the child to participate in as many normal daily activities and routines as possible. Referral to a wound care specialist may become necessary if there is no improvement.

Children are very aware and quick to sense other’s non-verbal reactions; therefore, healthcare providers will need to be very aware of their own body language and facial expressions when treating a child with a malodorous wound.

Case study 1

A mother has brought her 12-year-old daughter, Lillian, who has AIDS (stage 4) and drug-resistant TB to the clinic because she is not eating and appears to be very weak, wasted, anxious and severely breathless. She is also refusing to take her antiretroviral and TB treatment. The mother has been informed by the nurse that her daughter is nearing the end-of-life and the mother is very concerned that her daughter will starve to death.

1. What are the symptoms or signs that you can identify her experiencing?

The following:

2. What is cachexia and what is the cause?

Cachexia is a complex condition that involves numerous metabolic changes in the body that cause muscle wasting, weight loss and loss of appetite which in turn will cause chronic fatigue. Cachexia occurs in the advanced stages of a disease.

3. What explanation will you give to the mother about Lillian not eating and starving to death?

Give the mother a compassionate and gentle explanation that as Lillian is dying, it is normal for her to lose interest in eating and drinking. Any extra intake of foods and fluids may put a burden on the body if it is shutting down, causing more distress and discomfort. The mother needs to be reassured that Lillian should be allowed to decide what she eats and drinks, if at all. Intake is for comfort not nutrition.

4. How would you manage Lillian’s anxiety?

Lillian’s anxiety could be caused by her shortness of breath, fear of hospitals and procedures, fear of the future that faces her or the stigma associated with her condition and physical appearance.

If the shortness of breath is related to anxiety, an anxiolytic such as lorazepam can be added. Reassure her that you will assist and support her.

It is important to have open honest communication with her:

Case study 2

Joseph, an infant born at 30 weeks’ gestation, has been in the neonatal ICU for 6 weeks and has now been on nasal CPAP for 4 weeks. He has a nasogastric tube, intravenous line and cardiac monitor electrodes in place.

1. What is he at risk of developing with all the different medical devices he is attached to?

He is at risk of developing pressure sores at all of the sites where he is attached to medical devices.

2. What are the warning signs that a pressure sore may be developing?

Any red patches on fair-skinned children or purple/bluish patches on any of the pressure points on dark-skinned children can be the start of a pressure sore developing. The skin under and around the attachment may feel hot and firm or soft and appear shiny. Blistering or cracks may also occur where medical devices are attached but this is a late sign.

3. What measures do you need to take to prevent him developing pressure sores?

Regularly reposition Joseph’s head. Ensure that the skin around and under the nasal prongs is kept dry and that the prongs fit correctly. The prongs should not be too tight or too loose.

Inspect his skin over the pressure areas every time he is turned. Ensure he is not lying on any tubing from the intravenous line, the monitor leads or any other devices.

Case study 3

Simon is a 9-year-old boy with a large tumour on the left side of his face which is malodourous and fungating. He has been admitted to hospital for wound care. He says he is nauseous most of the time and has lost his appetite because of the terrible smell from his wound. He drools constantly from the left side of his mouth which has been affected by the tumour. He has been started on oral morphine to help control the pain but now has developed a rash that is making him very itchy, agitated and uncomfortable.

1. What are the physical problems you can identify him having?

His main problems are:

2. What type of assessment would be required in order to develop a palliative care plan for him?

In order to develop a palliative care plan, a holistic assessment needs to be conducted. This includes a clinical assessment of the wound, a pain assessment and the psychosocial impact the wound is having on him and his family.

3. How would you manage his pain?

He is currently on morphine and will require a pain assessment every 4 hours when his vital signs are observed. This is to ensure that the dose he is getting is the correct dose to relieve the pain. He has developed pruritus which may be a side effect of the morphine. A trial of an antihistamine and skin moisturisers can be used, but if it is morphine related, we will need to switch to a different opioid.

4. How would you manage his wound?

Important steps would include:

5. How would you manage the malodour?

The following will help:

6. How can you reduce his excessive secretions?

Do the following:

7. How would you manage his psychosocial distress?

A team approach is essential to address and manage his psychosocial distress. If available, a plan to move him into a side ward should be made. The healthcare team need to be aware of their non-verbal body language when they are caring for him. He needs to be included in any decision making about his care. Support should be provided to his family to help them cope.

8. What psychological problems is he likely to develop?

He is at high risk of depression. Therefore he should be carefully observed for symptoms and signs of depression and be treated should these occur.

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