People who need palliative care may experience some of the following symptoms, depending on their illness. These symptoms can impact on their quality of life and be distressing for their family and carers.

We need to be familiar with these symptoms and work with our team to determine what can be addressed:

  • Pain
  • Delirium
  • Nutrition and hydration
  • Breathlessness
  • Oral health problems.

Palliative care patients may experience more than one symptom at a time.

Pain

Pain is something that is felt and is subjective. It is what the person says it is and not what others think it should be. It is also individual with physical, psychological and spiritual dimensions. And pain is under-treated for many reasons. Under reporting of pain for people with dementia is a particular problem as it can be difficult to assess.

Use simple words to ask about pain such as hurting, aching burning, stabbing. And allow time for the person to reply.

Observe and assess:

  • Changes in behaviour
  • Facial expressions and grimaces
  • Vocalisations
  • Crying
  • Breathing patterns
  • Body language.

Ask about pain regularly, especially when changes have been made to the patient’s regime. Document the responses and consider conducting a comprehensive pain assessment.

We can try to relieve the patient’s pain, for example, by:

  • A change of position
  • A gentle massage or using hot packs (be careful using these if the older person has a problem with feeling heat or cannot easily move the pack if it causes discomfort)
  • Distraction techniques, such as talking, music
  • Medication.

Referral to a specialist palliative care service for assistance with pain management should also be considered.

Delirium

Delirium is quite common in palliative care patients, with the incidence reported as high as 85 per cent of patients. Delirium can be caused by a one or a number of factors, including:

  • Medications
  • Infections, such as a urinary tract infection or chest infection
  • Acute metabolic disturbances
  • Dehydration
  • Poor symptom control, for example, constipation or urinary retention
  • Drug withdrawal.

Palliative care patients who have delirium can:

  • Appear confused
  • Have difficulty focusing or paying attention
  • Experience sleep disturbances, for instance awake overnight and asleep during the day time
  • Be very physically restless
  • Be quiet and withdrawn
  • Have no concept of time or place
  • See, hear or feel things that are not there1.

Report and manage delirium by:

  • Identifying and treating underlying causes such as infection, dehydration and/or pain
  • Reviewing medication to see if it is contributing to the problem
  • Speaking calmly to the person and make them aware of where they are, who they are with and orient them to time and place
  • Implement strategies to minimise the risk of injury
  • Provide routine and a familiar environment to help with the person’s orientation and awareness.

Nutrition and hydration

Many factors can contribute to decreased nutrition and hydration at end of life. Contributing factors can include:

  • Difficulty swallowing
  • Poor oral health
  • Confusion/not recognising food
  • Need for increased assistance to eat
  • Decreased desire to eat and drink.

Investigate and determine reasons for a change in eating and drinking behaviour. Review and respond to the person’s wishes regarding nutrition and hydration. At the end of life, management will depend on the person’s wishes.

There are often psychosocial implications around loss of appetite and nutritional changes for a person and their family. Often the most distressing symptoms for family members to see if weight loss and increasing frailty. There may also be cultural, symbolic or religious meanings to food, drink and eating that need to be considered.

Artificial nutrition and hydration may not be beneficial in last stages of life and does not prolong life. In some instances it increases the person’s discomfort and the body does not require it in the last few days of life. It is important, however, to have the discussion with families around artificial nutrition and hydration so that they understand the implications for end of life care.

Breathlessness (dyspnoea)

Breathlessness is the unpleasant sensation of difficulty in breathing. It impacts on quality of life, activities of daily living, mobility, anxiety, fear and social isolation.

Observe changes in breathing behaviour including the rate and depth of breathing.

Observe signs of fear or distress that makes breathing worse.

Observe changes in functional ability due to breathlessness.

Observe changes to skin colour.

Assess timing of breathlessness including how often it occurs, when it occurs, how long it lasts and how long between episodes.

To assist with the management of breathlessness:

  • Minimise anxiety and distress
  • Position the person in a more upright position
  • Speak calmly and reassuringly
  • Pace physical activity
  • Pharmacological agents may be prescribed depending on cause.

Problems with breathing can be distressing for the older person and their family. Keep them informed about what can be managed and what is normal towards the end of life.

Oral health problems

Quality of life is affected by mouth pain, ulceration, dry mouth and swallowing difficulties.

Notice indicators of potential oral health problems such as broken teeth, broken or missing dentures, a swollen face, the condition of the tongue and bad breath.

Regular oral hygiene needs to be provided and encourage the person to drink water after meals and after taking medication.

Dry mouth is often caused by the disease or the medication regime. We can conduct an oral examination to determine what could be causing the dry mouth and implement the following regimes to improve dry mouth:

  • Regular mouthwashes with water or water with sodium bicarbonate
  • Frequent sips of water to maintain hydration if possible
  • Using a soft toothbrush and gentle brushing twice daily
  • Offering foods that aid in increasing saliva, such as pineapple chunks, frozen lemon slices and chewing gum
  • Using saliva substitutes such as sprays and gels
  • Using lip balm or lanolin based balms to prevent cracking of lips
  • Referring to a pharmacist consultant for a medication review.

Swallowing difficulties are common at the end of life and dysphagia, a severe swallowing difficulty, is a sign that a person’s disease is at end stage. If a person is having swallowing problems, we can refer them to a speech pathologist for a swallowing assessment and guidance for appropriate interventions.

We can assist an older person with swallowing difficulties to eat by ensuring that they:

  • Have meals in a quiet place with no distractions
  • Take small mouthfuls and eats slowly
  • Avoid talking while eating
  • Swallow each mouthful before taking another
  • Positioning them sitting upright with the head forward (not leaning back) when meals or drinks are taken and for at least 30 minutes afterwards.

1. Online learning – Palliative care: Getting started, 2015, Centre for Palliative Care.