2.2 Managing symptoms
The information presented here can support you as carer to manage common palliative symptoms at home to relieve discomfort and pain (when appropriate) before contacting a nurse. The guide focuses on day to day care, and does not apply to emergencies. Planning for Emergency Care on page 61 will be discussed with your PCSE team.
Constipation or diarrhoea are two issues that can cause distress and discomfort – but they can be managed.
Constipation is a very common and uncomfortable symptom. It is caused by a combination of reduced mobility, reduced intake of food and fluids, and some medications.
Signs of constipation
- Passing small hard faeces infrequently and with difficulty
- Bowels are opening less than 3 times per week or less than the normal routine
- DO NOT stop taking any medications because of constipation
- People taking regular strong pain medications should take a regular laxative – TALK to your PCSE team about options
- If persistent, increasing the laxative dose or an enema or suppository might be considered
What you can do: tips for carers
- Increase fluid intake (6–8 cups daily)
- Give prunes at breakfast or prune juice, other fruit juices, plums or rhubarb
- Light massage in a clockwise direction over the abdomen, using warm oil (Note: avoid if there is abdominal tumour)
- Give small, regular meals
- Ensure privacy in the toilet
- Use a small footstool at the toilet to raise the feet
- Try hugging a fat pillow resting on the thighs
- Consider a commode or an over toilet seat – talk to your PCSE team
- Keep upright when trying to pass a bowel motion
Diarrhoea is an increase in fluidity and frequency of bowel motions that can be caused by medications (antibiotics), treatments (chemotherapy/radiotherapy), diet or disease. Diarrhoea can be treated, sometimes with medications.
What you can do: tips for carers
- Discuss the issue with your PCSE team
- Increase fluid intake
- Use electrolyte replacement fluids e.g. Gastrolyte or Hydralyte
- Avoid solid food for 24-48 hours to rest the gut
- Follow good hygiene practices (i.e. hand washing) after each bowel action
- Use soft toilet paper and/or moist wipes and use barrier creams on the area
Keep a bowel movement diary to discuss with the PCSE team
Confusion is the clouding of thinking which makes someone uncertain of what is happening around them. Confusion can affect a person’s ability to think clearly or respond appropriately. A person with confusion may be unaware of where they are or what is happening. They may be very anxious, restless or agitated or express other emotions that are difficult to understand or that seem to be excessive in the circumstances.
Confusion can be caused by:
- disease progression towards the end of life
- parts of disease that affect the brain (e.g. brain tumour, stroke)
- other diseases such as dementia or some mental health conditions
- chemical imbalances from disease or failure of vital organs
- raised temperature (e.g. fever from infection)
- anything that affects the amount of oxygen reaching the brain (e.g. disease of heart or lungs)
- medications (new or higher dose)
- pain or discomfort
Let the PCSE team know immediately about any change of behaviour. There might be other conditions that are contributing to any confused state.
What you can do: tips for carers
- Do not argue with someone in their confused state (for example, about their delusion/beliefs)
- Gently remind the person where they are and who you are. Sit with them, taking their hands and talk to them, even if they seem unaware of you. (Be careful: an agitated person may hit out or become aggressive)
- Try to create a feeling of peace and safety. Talk reassuringly about anything you are about to do, even if you think they do not hear or understand you
- Avoid changing surroundings, the position of the bed in the room or other arrangements
- Check that the person is not too hot
- Check the bed and clothes for anything that may be causing irritation
- At night try using a night-light or leave the hall light on and the door open
- Keep the environment free of distracting or distressing noise. Music helps some people to settle. If a windy night or intermittent noise increases the confusion, try masking the noise with familiar sounds such as radio or TV
What the nursing team can do
- Some causes of confusion can be cleared up quickly (e.g. full bladder or rectum)
- Review medication (change may be needed)
- Review other causes
Declining mobility and falls
It is common for mobility/movement to decrease as illness progresses. There can be multiple causes: side effects of treatment or medication, increased fatigue, muscle weakness due to disease, decline in nutrition and emotional state.
Experiencing a reduction in physical function can be upsetting. People get frustrated by the loss of their independence and their increased need to rely upon family members/carers. The PCSE team can provide advice, support, equipment and aids that will help improve independence and optimise ability to move around.
Tell us about any new changes in functional ability such as moving from one position to another, walking and completing own care (e.g. toileting or showering). We can then work with the Occupational Therapist to explore ways to improve mobility and independence.
What you can do: tips for carers
- Make the living space clutter-free and remove hazards like rugs
- Make sure the lighting is adequate
- Be sensitive to your expectations: the person you care for may not be able to function as before
- Be patient
- Provide support where needed (e.g. assisting with a shower), but also encourage independence as much as possible
- Some mild to moderate exercise can improve or maintain muscle tone
- Look at ways to boost nutrition
- Encourage rest when necessary and avoid pushing beyond limitations
What your PCSE team can do
- Work with our Occupational Therapist, who can:
– provide new strategies or ways of doing things
– improve balance and coordination
– reduce muscle and joint pain
– choose equipment to support independence
- Assess any underlying and treatable causes (such as medications, disease progression, injury or infection)
- Provide emotional support – if there is an emotional component to the reduced movement, such as depression, then a counsellor, social worker or spiritual care worker can provide strategies and tools you can use at home to help manage the feelings
- Arrange therapies – music therapy is available for relaxation and symptom relief, which can improve sense of wellbeing and overall function
Eating & drinking
Loss of appetite and weight loss are common. The person you care for should choose the size and time of their meals or whether they have a meal at all whenever possible. If this is too difficult, you can make these decisions.
- Nausea, vomiting and constipation can affect appetite
- A dry and sore mouth may affect nutrition – refer to the Mouth Care section on page 47
- Use convenience or pre-prepared foods for ease
Ask family or friends to prepare some meals for the freezer.
Supporting comfort in eating and drinking
- Serve less fluids just before or with meals to avoid feeling full
- Serve meals on smaller plates so it is not overwhelming
- Timing of meals is important: consider having main meals earlier in the day
- Make meal times a social occasion
- Provide small frequent meals / support grazing throughout the day
- Avoid foods that carry heavy aromas
- Encourage food to be eaten slowly
A referral to a dietitian might be useful.
Tastes and flavours
Changes in taste are common. Experiment with different food tastes.
- A ‘bitter’ taste can be eliminated by reducing red meat. Use more chicken, fish and dairy
- Try foods at different temperatures
- Try adding extra flavour to foods, e.g. salt, pepper, and sugar/sweetener, stock. (NOTE: no additional salt if high blood pressure)
Make sure the person is comfortable when sitting up to eat. A triangular pillow might help in bed.
Ensuring energy intake is adequate
- Supplement drinks (such as Sustagen, Resource, Proform) and high protein (flavoured) powders can be used in recipes such as puddings and omelettes
- Small tubs of mousse, yoghurt and custard, ice cream, jellies, smoothies and soups
- Infant foods
- Enrich milk drinks with full cream milk powder
- Increase calories in diet by adding eggs and cheese to food
Nausea and vomiting
Nausea is a feeling of sickness and the feeling you could vomit. Nausea and vomiting are unpleasant and distressing symptoms which can occur together or separately
Nausea and vomiting can be triggered by:
- particular smells, sights, tastes or movements
- some medications or treatments (e.g. chemotherapy, radiotherapy)
- body imbalances (dehydration, constipation, obstruction to the bowel, blood chemicals changes)
- emotional reasons like anxiety/worry
- continuous coughing
- worsening of the disease
Nausea and vomiting can usually be treated or relieved – talk to the PCSE team.
- Prevent constipation if possible; treat constipation early
- Take any prescribed anti-nausea medications regularly
- Keep a record of symptoms and causes
- Keep room aired and free from unpleasant smells
- Review medications (eliminate unnecessary drugs, review timing)
- Avoid lying down immediately after eating
- Teeth should be cleaned or mouth rinsed before and after eating
- An empty stomach can cause nausea: serve small amounts of foods 5–6 times per day
- Eat cold or warm food if the smell of hot food causes nausea
- Relaxation, music therapy, deep breathing exercises, meditation or an activity can help
- Sucking on ice or icy poles and sip flat, carbonated drinks
- Eat or drink ginger products such as dry ginger ale/beer, ginger biscuits
- When vomiting stops, rinse mouth, clean teeth and suck on ice or drink small sips of water
- When possible, drink regular sips of water, soda water, ginger ale, lemonade or energy drinks. Try different temperatures and allow any fizzy drinks to go flat before drinking
- Re-introduce food slowly. Slowly introduce a greater variety of drinks and a small amount of plain food (e.g. slice of dry toast or dry biscuit)
- Refrain from fatty or dairy foods until the stomach copes with the lighter food
If vomiting continues for more than one day, contact the PCSE team.
Fatigue and drowsiness
Fatigue is a very common and upsetting symptom during advanced illness. It is often linked to a lack of appetite and interest in food and involuntary weight loss.
Common causes of fatigue include: cancer treatments, medications, pain, shortness of breath, anaemia (low red blood cells), infection, dehydration, poor diet, depression or advancing disease.
Common symptoms include one or more of the following:
- general tiredness
- feeling drained
- lack of motivation
- feeling that they can’t be bothered
- lack of energy
- problems with sleeping
- feeling grumpy, tearful or emotional
- low self-esteem
- feeling a burden to others
- low mood
- poor concentration
There are many treatments to help manage fatigue, depending on the causes.
Managing fatigue and drowsiness
- Serve a healthy diet including fruit and vegetables; consider dietary supplements or drinks
- Plan the day, and plan activities for times when energy levels are highest
- Include regular rest periods during the day. Plan rest days in between outings
- Shower every second day instead of daily
- Gentle exercise and keeping active can help improve energy levels and maintain muscle strength
Some equipment can help decrease fatigue, e.g. wheelchair for outings, raised toilet seat, shower stool.
- Ask other people for help with shopping, cleaning and other household jobs
- Break large tasks into smaller goals
- Consider complementary therapies such as music
- Reorganise the environment e.g. rearrange the bed so it’s closer to the bathroom
- Some medications can increase levels of fatigue – talk to the PCSE team
Let us know if there are uncontrolled symptoms such as pain, shortness of breath, depression or insomnia. Treating these symptoms can improve fatigue.
Fear and anxiety
It is normal for someone who is sick to feel uneasy, restless, afraid or anxious. Comfort care helps to cope with these feelings.
The person you care for might feel:
- that things are not right
- unable to pay attention, focus or concentrate
- loss of control
A person’s body may express what they are feeling with:
- trouble relaxing or getting comfortable
- needing to move for no reason
- fast breathing or heartbeat
- shaking or muscle twitches
- trouble sleeping
- confusion or extreme restlessness (called agitation)
What you can do: tips for carers
Think about what worked in the past. What helps when they have felt anxious or worried?
What happened when this feeling started? Can they do something about that? Did it start with pain, and did they take their pain medication?
You might recommend:
- writing down thoughts and feelings
- gentle exercise
- talking to someone
Support a relaxation activity such as:
- breathing slowly and deeply for a few minutes
- listening to music that calms them
- slowly counting backward from 100 to 0
- yoga or tai chi
- having someone massage hands, feet, arms, or back
- patting a cat or dog
- reading to them
Other ways to help:
- when a person needs to rest, tell visitors to come another time
- make sure medication is taken as prescribed
- limit alcoholic drinks
- limit drinks with caffeine (including energy drinks)
Many people find they can prevent or manage these feelings of worry if they can talk to someone they trust about their fears, to someone close to them or to the medical team.
Medication is available – talk to the PCSE team.
- feelings that may be causing anxiety (such as fear of dying or worrying about money)
- concerns about illness
- problems with family or friend relationships
- spiritual concerns
- signs and symptoms that the anxiety is changing or getting worse
IF YOU NEED TO SPEAK TO SOMEONE URGENTLY
GriefLine (03) 9935 7400
Lifeline: 24hrs 13 11 14
Beyond Blue: 24hrs 1300 224 636
Kids Help Line: 1800 551 800
Men’s Help Line: 1300 789 978
1800 Respect: 1800 737 732
Mouth and oral problems can be caused by treatments and/or medications. The problems can include dry mouth, coated tongue, bad breath, infections, thrush and ulcers. Maintaining good mouth/dental health will reduce discomfort.
Tell the PCSE team about any signs of mouth or throat soreness.
Thick saliva can be reduced by:
- breathing in steam
- juices and ice cubes made of grape, apple, pineapple and papaya.
There are some medications to treat excessive watery saliva.
- Clean teeth regularly
- Rinse mouth frequently with plain or salt water (1/2 teaspoon salt in 500 mL water), 3–4 times a day, after meals
- Avoid commercial mouthwashes that contain alcohol, which can dry the mouth. Difflam mouthwash, Biotene moisturising gel and Aquae sprays are recommended and available at local pharmacies. Swab around the mouth before meals and at bedtime
- Pineapple/watermelon wedges refresh the mouth
- Suck pieces of boiled lollies or ice chips made with frozen tonic water, cola/lemonade or juice
- Sugarless gum stimulates saliva. Purchase saliva substitutes from your local pharmacy
- Keep lips moistened with lip balm, lanolin or paw paw ointment
- Clean the teeth and tongue with a soft toothbrush, or
- Mix sodium bicarbonate with some water to form a paste; use the paste on a soft tooth brush to brush mouth and tongue
Tell the PCSE team about any coated tongue symptoms.
A common fungal infection that appears as white spots on the tongue, inside the cheeks or a yellow coated tongue. This can cause pain, swallowing difficulty and reduce appetite. Your nurse may recommend regular use of a solution called Nilstat (Nystatin) or Fungilin lozenges, which are slowly sucked until they dissolve.
- Rinse the mouth regularly with salt water
- Use Bonjela gel or Difflam mouth rinse if the ulcers are sore
- Remove dentures overnight. Use a denture cleanser soaking solution instead of water (which encourages infection)
- Rinse dentures before placing back in the mouth
- Rapid weight loss may cause dentures not to fit properly. See dentist to refit or use denture pads
- If there are ulcers, remove dentures to help promote comfort and healing
Shortness of breath
Shortness of breath is common in people living with a terminal illness. A person can feel they cannot get enough air and breathing can be faster or slower than usual. It is usually caused by disease of the lung, asthma, emphysema, chest infection, pressure from other body organs or anxiety.
Breathlessness is not damaging but it can be distressing. There are many helpful tips and ways to adjust lifestyle to reduce breathlessness and maintain a sense of control.
Speak with PCSE team about options
- Equipment (commode, wheelchair, raised toilet seat, strategically placed chairs)
- Breathing techniques
- Complementary therapies, such as music therapy
- Develop an action plan and keep it somewhere easy to find
Oxygen therapy is not usually advised unless ordered by GP. Oxygen concentrator units are available for continuous oxygen use in the home. (Costs may apply.)
What you can do: tips for carers
- Encourage a calm and unhurried approach to activities with regular rests; provide help if required
- Avoid situations that cause anxiety or make shortness of breath worse. Encourage remaining calm at all times
- Reduce clutter in the immediate environment
- Body positions which make breathing easier:
– sitting upright
– sitting at a table with arms raised on pillows
– in a bed supported by pillows or backrest
– in a chair with arms well supported and legs elevated
- Clothing should be loose around the waist, chest and neck
- Use a fan or provide seating near an open window, door or outside
- Provide fluid to avoid dehydration
Portable oxygen can be arranged for outings. Ensure that the tanks are full and take a spare bottle.
Skin can suffer from infection or pressure sores. This can be due to not moving for long periods, accidental or involuntary urine/bowel motions, some treatments, medications and decreased food and fluid.
Caring for skin
There are several ways to improve the condition of skin, and reduce discomfort.
- Protect the skin from cuts/scratches
- Thoroughly clean any cuts or scratches
Tell the PCSE team if any cut or break in the skin becomes painful, red or hot to touch or if there is any swelling
- Use sun block/protective clothing to prevent excessive sun exposure
- Avoid tight clothing
- Examine bony parts of the body for redness (e.g. bottom, heels, elbows and hips)
- Change bed position regularly, especially if not moving independently
The use of special mattresses can help reduce pressure.
- Use pillows between bony body parts and surfaces (e.g. between knees when lying in bed)
- Wash skin gently and pat dry when exposed to bodily fluids
- Apply moisturiser frequently to dry skin (e.g. sorbolene or barrier creams)
- If having radiotherapy treatment, refer to skin care guidelines provided by the treating hospital or clinic
Itchy skin can be caused by various factors such as dryness, the disease or medication.
- If the skin is dry, use a moisturiser such as water based cream twice a day (store it in the fridge so it will feel cool on the skin)
- Discuss medications with your doctor
- Protect the skin from damage that could be caused by scratching (e.g. keep nails short, rub rather than scratch)
- Avoid things that irritate the skin (e.g. washing powders, scented soaps, hot water)
Sweating is common with advanced disease. This can cause discomfort and affect activities like sleeping.
- Speak with the PCSE team
- Use layers of light non-synthetic clothing
- Keep room cool and well aired
- Use light bedding and use layers to adjust for comfort
The PCSE team can discuss equipment available and show you how to move and transfer someone into/out of bed to reduce skin tears and pressure sores
Terminal restlessness is a type of confusion that occurs in the last days or hours of life. While not common, the signs and symptoms can be particularly distressing for carers and family, but they do not mean that the person is distressed.
Sitting more upright and turned slightly to one side can help.
- have increased physical restlessness or nervous excitement, muscle twitches, or unusual patterns of muscular tensing
- may pick at or continuously handle the bedclothes
- moan or call out
- make sounds each time they breathe out
- react with distress to sudden stimulation (even if they seem unconscious)
Advise your PCSE team and/or your medical team immediately if there are signs of terminal restlessness. Nurses will assess and recommend treatment. Medications are available to stop twitches or muscle contractions. Sedation might be available.
You are not alone