Grief is the normal human response to any perceived loss. It can occur well before a person dies and it presents with many subtle nuances.
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.
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’.1 It is often experienced in conjunction with social isolation, if the person has little social contact or others have withdrawn from them.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.2
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 and Intersex (LGBTI) 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.
1. Commissioner for Senior Victorians. Ageing is everyone’s business: a report on isolation and loneliness among senior Victorians, 2016, State of Victoria: Melbourne.
2. Department of Health, Providing culturally appropriate palliative care to Aboriginal and Torres Strait Islander peoples: Resource kit, 2014, Australian Government.