I need Palliative Care

Common symptoms and experiences

• Pain

  Pain is a distressing symptom that can be both physical or psychological in nature. Most people do not experience the same type of pain or have different tolerance levels. Untreated pain can cause or increase tiredness, low mood, worry, poor appetite, and stress. At each contact our nurses will ask about your pain and will work with your GP or specialist to ensure your pain is controlled and you are as comfortable as possible. We focus on prevention and early intervention to manage pain.

   

  Tips for Carers

  • Pain is individual. The treatment approach depends on how a person describes their pain
  • Pain can almost always be managed, but is managed best when identified early
  • Untreated pain can cause agitation and distress
  • Pain treatments include medication but also heat/cold packs, massage, relaxation and spiritual or psychological support
  • Keep a pain diary, noting the description and location of pain, time, medication given, whether the medication relieved the pain, and rate distress from the pain out of 10 for our team to review and discuss options
  • Encourage the person you care for to take an active role in managing their pain
  •  Our staff do not carry pain medications with them. Be aware of how much pain medication you have available and ensure you obtain new scripts in time to always have enough medication when needed.

• Shortness of breath

  A common symptom in palliative care clients. You may feel like you cannot get enough air and breathing can be faster than usual. It can be quite frightening and distressing. It may be associated with your illness or related to other conditions such as anxiety. It often becomes worse on exertion or exercise. Medications may be used to relieve shortness of breath.

  Tips for Carers

  • Encourage a calm and unhurried approach to activities with regular rest; provide help if required
  • Avoid situations that cause anxiety or make shortness of breath worse
  • Reduce clutter in the immediate environment
  • Clothing should be loose around the waist,chest and neck
  • Use a fan or provide seating near an open window or door
  • Provide fluid to avoid dehydration
  • Equipment (commode, wheelchair, raised toilet seat, strategically placed chairs) can be beneficial to making activities of daily living easier
  • Oxygen therapy is not usually advised.

• Nausea and vomiting

  A feeling of sickness and like you could vomit. Nausea and vomiting are distressing and can occur separately or together. It can be triggered by certain smells, sights, taste or movements. It can also be caused by some medications or treatments e.g. chemotherapy.

  Other triggers include continuous coughing, worsening disease, pain, emotional reasons like anxiety or worry, body imbalances (dehydration, constipation, obstruction of the bowel). There are several medications that will assist you to manage nausea and vomiting.

  Tips for Carers

  • 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
  • In consultation with your GP or a member of the Clinical Care team, review medications
  • (eliminate unnecessary drugs, review timing)
  • Relaxation, music therapy, deep breathing exercises, meditation or an activity can help
  • Suck on ice or icy poles and sip flat, carbonated drinks
  • Avoid lying down immediately after eating
  • An empty stomach can cause nausea, have small amounts of food more often.

• Loss of appetite

  You may feel like not eating or drinking. This may be because of your illness or symptoms such as pain, nausea, constipation, or breathlessness. It can also be a side effect of medications, or treatments such as chemotherapy or radiotherapy which can result in a change to sense of taste, sore gums or diarrhoea.
  When illness progresses, it is no longer necessary to eat as much because the body’s energy needs have slowed down.

  Tips for Carers

  • It is common for family and friends to want to encourage someone who is unwell to eat, as preparing food is how you show you care and a normal part of daily life. Don’t force them to
    eat as it can cause vomiting and stomach pain.
  • Offer fluids which can be in the form of drinks, custard or jelly
  • Avoid fatty or heavy foods
  • Ask what foods they would prefer as their tastes may have changed
  • Offer smaller meals more often
  • Consider high calorie protein supplements such as Sustagen, Ensure or Resource if they can tolerate it. Can also try high protein drinks or yoghurts from the supermarket
  • If mouth or gums are sore, speak with a member of the Clinical Care team.

• Oral symptoms

  Mouth and oral problems can be caused by treatments and or medications. Problems can include:

  • sore dry mouth
  • bad breath
  • coated tongue
  • infections
  • ulcers.

  This can cause pain when eating and swallowing. It is important to maintain good mouth hygiene to reduce discomfort.

  Oral thrush is a common fungal infection that appears as white spots on the tongue, inside of cheeks or a yellow coated tongue. It can be treated.
  

  Tips for Carers

  • Thick saliva can be reduced by juices and ice cubes made of grape, apple, pineapple and papaya. Breathing in steam may also help
  • Dry mouth: Maintain good fluid intake. If unable to drink, consider sucking on ice chips or icy poles. If able to chew, sugarless gum can stimulate saliva
  • Avoid alcohol-based mouthwashes that dry the mouth. Biotene moisturising gel and Aquae sprays are recommended and can be purchased at a local chemist
  • Use a lip balm, lanolin or paw paw ointment to keep lips moist
  • Large mouth swabs can be used to keep the mouth moist if unable to swallow
  • If tongue is coated, clean the teeth and tongue with a soft toothbrush or mix sodium bicarbonate with some water to form a paste on a soft toothbrush to brush the mouth and tongue
  • If ulcers, pain, or bleeding gums, use analgesic mouthwashes and gels from your local pharmacy. Avoid mouthwashes that contain alcohol
  • Remove dentures if painful or irritating
  • Clean teeth and gums
  • It’s common for or dentures to be loose due to weight loss.

• Constipation

  A reduction in the frequency of bowel motions or increased difficulty in passing stools. It is very common in palliative care. It can be very uncomfortable and is caused by a combination of reduced mobility, reduced intake of food and fluids, and some medications. Signs of constipation are passing small hard faeces, with difficulty.

  Tips for Carers

  • Increase fluid intake (6–8 cups daily)
  • 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.
    Light massage in a clockwise direction over the abdomen, using warm oil (note: avoid if there is abdominal tumour)
  • Consider a commode or an over toilet seat – talk to a member of the Clinical team
  • Keep upright when trying to pass a bowel motion
  • Give small regular meals
  • Give pears at breakfast or pear juice, other fruit juices, plums, rhubarb or prunes
  • Speak to the Clinical Care team if constipation is an issue and they will recommend laxatives and adjust as required.

• Anxiety

  A sense of unease, nervousness, dread and worry about a situation or potential situation that is yet to happen. Being in the unfamiliar territory of having a life-threatening illness can be scary and you can feel out of control.

  Thoughts about the changes your body is going through or that of someone you’re close to, can bring on anxiety. Anxiety is a common response that can be both emotional and physical depending on the situation someone is in.

  People experiencing anxiety may feel things are not right, worried, short of breath, dry mouth, headache, fast or irregular heartbeat, chest pain or have uncontrollable shaking. There may be times our Clinical Care team suggests medications to manage anxiety, and/or times we suggest speaking to one of our Allied Care Team who are trained to work with anxiety.

  Tips for Mindful Breathing

  • Paying attention to your breathing helps you tune in to your body in the present moment. You’re not in the past or in the future, you’re just here, right now
  • Notice how you are breathing and how your body wants to breathe
  • Pay attention to the sensation of your in-breath and your out-breath
  • Notice the movement that happens in your nose, chest, lungs and abdomen each time you breathe
  • If you are breathing shallowly and rapidly, take a deeper breath and notice how you can immediately alter the depth and rhythm of your breath. (If you are having difficulty breathing because of your illness, don’t focus on the rhythm of your breath unless it’s soothing to you).

  Tips for Grounding

  • Grounding can calm and help settle your mind. It’s a useful strategy if you start to worry
  • Sitting in a chair, put your feet flat on the floor and press them into the ground or other surface (or let your hands press into the arms of the chair)
  • Wiggle your toes (or fingers) so that you can feel the surface they are on. What sensations are you feeling?
  • The simple act of shifting your attention to your feet (or hands) and making contact with your surface is a way of “grounding” yourself
  • Notice how you can regain your focus by bringing your attention back to your feet or hands
  • Encourage talking to someone else about their fears and anxiety which could include one of our Allied or Clinical Care Team.

• Fatigue

  One of the most common symptoms for palliative care clients and is described as an overwhelming tiredness or a persistent lack of energy that is unrelieved by rest. This can be a result of treatments but is usually the body’s response to being unwell.

  It is also normal for carers to go through a sense of fatigue in their caring role and we are here to support you as well. Your nursing team will be able to connect you to our Allied Care Team.

  Tips for Carers

  • Limit number of visitors or time spent at the home
  • Suggest everyone except close family phone prior to visiting
  • Keep friends and family informed through regular messages
  • Leave a note on the door if not wanting visitors
  • Offer help with shopping, cleaning and meals
  • Speak with palliative care staff if needing more assistance
  • Encourage more rest periods during the day.

• Agitation and restlessness

  As death approaches, some people develop confusion or agitation, commonly known as terminal restlessness. This can be very distressing for carers to watch. Any reversible causes of agitation, such as uncontrolled pain or urinary retention, should be identified and managed appropriately.

  Tips for Carers 

  In addition to the usual symptoms of confusion, the person you care for may:

  • have increased physical restlessness or nervous excitement, muscle twitches, or unusual patterns of muscular tensing
  • 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)

  Providing a calm and low stimulus environment can help agitation and restlessness.

• Skin care

  Maintaining healthy skin and preventing pressure sores is important. This can be difficult with people who sit or lie in the same place for a long period of time without moving. Pressure sores are caused by friction or constant pressure on the skin. They occur on bony parts of the body including elbows, shoulders, heels but can occur in other places e.g. ears. They can cause pain.

  Tips for Carers

  • Encourage to change position or go for a walk if able
  • Avoid firm massage, a gentle massage of red areas can be beneficial to improve circulation in the area
  • Use moisturisers
  • If the person you are caring for is in bed, change position every few hours. Speak with the palliative care nurse who can arrange for someone to teach you how to do this
  • Palliative care nurses can arrange a special pressure relieving air mattress if recommended
  • If a pressure sore has developed, nurses will advise carers on how to manage this or will refer to another service to attend to the wound dressing.