Managing needs of older people during palliative care

Managing physical symptoms

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• Be quiet and withdrawn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.

Managing personal, emotional, cultural and spiritual needs

People receiving palliative care can experience heightened emotions and may value the opportunity to express their identity and culture and to practise their spiritual and religious rituals.

We need to enhance our ability to respond to people’s individual wishes so that we can provide quality and respectful care.

Emotional needs

In addition to physical symptoms, people who are at a palliative stage often experience emotional symptoms, such as anxiety, loneliness, depression and anger, which are all associated with grief.

Anxiety can include feelings of apprehension, fear and dread, which can lead to nausea, dizziness, shortness of breath and diarrhoea.

Loneliness is a ‘subjective, unwelcome feeling of lack or loss of companionship or emotional attachment with other people’² . It is often experienced in conjunction with social isolation, if the person has little social contact or others have withdrawn from them. Some people may feel alone even when in the company of others.

Depression may result in a loss of pleasure or interest in things around them. Depressed people may feel hopeless or helpless and become isolated from those around them.

Anger can affect the way people talk, act and accept their treatment and it is a common reaction to a life-threatening illness.

The following are some communication strategies we can use to help older people and their families in palliative care who are experiencing emotional symptoms:

• Listen to their concerns, regardless of how we perceive the situation.
• Acknowledge their emotion: “I can see you are very upset/angry”.
• Invite them to tell their story: “Can you tell me what’s bothering you?” and listen out for goals we may be able to address.
• Reframe emotions or situations from ‘negative or difficult’ to an opportunity or catalyst to further explore a situation.
• Align our body language with the intention to listen, nod, make eye contact, don’t cross our arms, etc.
• Avoid interruption
• Use skills such as empathy, reflection and validation to negotiate a realistic goal – sometimes it can be as simple as saying we will ask the doctor to give them a call.
  • Empathy: “ It sounds like what you are going through is really upsetting and difficult”
  • Reflection: “So I hear you saying you are very concerned that…?”
  • Validation: “It’s understandable that you feel angry about …
  • Negotiate: “It’s afterhours now, but what I can do is…?"

These strategies may not solve the issue every time and we may need to call on support from experienced and senior clinicians, but often just listening to the person’s concerns, displaying empathy and validation can diffuse a situation and provide the person with some sense of control in a situation that can be very disempowering.

Cultural and spiritual needs

Cultural safety is providing an environment that is respectful of an individual’s culture and beliefs. Spiritual care may become more important to people when they are in a palliative state, and their spiritual needs may include finalising things they have set out to do and ‘making peace’ with others or they may be religious or spiritual beliefs.

It is important to be aware of any religious or spiritual beliefs or rituals a person may have during their palliative care and after death.

Aboriginal or Torres Strait Islander

Aboriginal and Torres Strait Islander (Aboriginal) people can have different and unique languages, customs, beliefs, healing practices and cultural practices depending on what community they are from. For many Aboriginal people, the topic of death and dying is a very sensitive area. However, you cannot generalise across all Aboriginal communities in relation to spiritual values and beliefs.

It is important that you find out from the older Aboriginal person their cultural and spiritual values and preferences in relation to:

• Place of death
• Who should be there
• What care is needed when they have died, such as disposal of the body and associated rituals.

For some Aboriginal people, these cultural and spiritual needs may be more important than meeting physical needs, such as pain relief.

It is also important to consider the Aboriginal person’s family and community. An Aboriginal Health Worker or Liaison Officer may help Aboriginal people and their family and carers feel more comfortable and at ease with their care.

Some factors that we need to consider when an Aboriginal person is receiving palliative care in hospital include:

• Involving the family in providing direct care in the hospital environment
• The size of the rooms due to the large number of visitors
• Accommodation for the family
• Access to external spaces
• Type of food provided, with Aboriginal person requesting traditional or ‘bush tucker’
• Environment of the hospital being considered too sterile and alienating; Aboriginal art and artefacts may help make it more welcoming
• Accommodating special ceremonies.³

There may be certain cultural practices that need to be followed after the death of an Aboriginal person.

Culturally and Linguistically Diverse (CALD)

To provide culturally appropriate palliative care to older people, we need to understand the meaning of death and dying from the person’s cultural perspective. As we can’t know all cultural beliefs and practices in relation to palliative care, death and dying, we should ask the older person and their family what is important to them.

If the older person is unable to communicate clearly in English, use a translator and provide written information about services or treatment in the person’s preferred language.

Be aware that not all people from the same country speak the same language, for example, people from China may speak Cantonese or Mandarin. First determine the person’s spoken and written language.

A person’s customs and values may be based on the country they are from or their religion. People from one country may have different religions.

Customs or values that people may have that are important in relation to palliative care may include:

• Importance of the family
• Discussing private issues with health professionals or non-family members
• The amount of information they want about their diagnosis and prognosis
• Whether it is appropriate to communicate with the family about diagnosis and prognosis
• Importance of food or refreshments
• Feelings about hospitals
• Attitudes to pain management
• Certain medical practices that they want withheld
• End-of-life rituals, for example, last rites, visits from friends and family, patient giving away belongings
• Post-death rituals, for example, what needs to happen to the body in preparation for burial
• Post-death procedures, for example, autopsy or organ donation.

Lesbian, gay, bisexual, transgender, intersex, queer/questioning, asexual (LGBTIQA+) people

When a person is nearing the end of their life, it is important that the people they choose are included and recognised in their healthcare.

When grieving, it is important that a bereaved same sex partner is provided with the same support as a bereaved heterosexual partner is given.

All people should be provided with the opportunity to express and live as their chosen gender identity during palliative care.

Supporting family and friends

Watching a loved one go through palliative care can be a difficult time, and it is important to support family and friends both during the palliative care stage as well as afterwards. We can help family, carers and friends cope by informing and educating them about:

• What they can do as a carer to help the older person
• The diagnosis and prognosis of the illness
• The cause of the illness
• Symptoms and how to manage them
• Treatment options and side effects
• What to do at the end of life.
• What to expect after their loved one has died
• The experience of grief, isolation and loneliness
• Where to seek support.