Cultural, spiritual or other needs

End of life and palliative care
Spiritual care

Existential or spiritual distress can cause much suffering at end of life. 

Spiritual care for a person at end of life is about trying to understand any emotional, relational, existential or religious concerns that a person may have. A person might be struggling to come to terms with how they have lived their life and what meaning their life has had.  They might feel a sense of hopelessness, and need support to help them have meaning in the time they have left. knowing. Spiritual care can be helping a person to find meaning or acceptance with their last months or days in this life.  It could also be about dealing with relationships or how to say goodbye.

Spiritual care can involve faith and religious beliefs. These can bring comfort and peace.  Where religion is an important part of a person’s life, it is important that any religious rituals or traditions are included in their last days. For others, religion may have little or no part in their spirituality.

Talking about any spiritual needs with family, friends, a faith community or health care provider can help bring a sense of peace and less distress at the end of life.  Having someone to listen and affirm that a person’s life has meaning, or connecting them back with things  that are important to a person or bring them joy can be helpful. 

ACT palliative care services have relationships with different faith communities and most faith communities are able to support you whether you are at home, in hospital, at a hospice or in an aged care facility.   Clare Holland House and any public hospital have access to a spiritual support team for people who are cared for in these facilities. Most aged care facilities also have access to spiritual support.   It is important that you talk with the people looking after you if you would like someone to support you. 

Existential or spiritual distress can cause much suffering at end of life. 

Spiritual care for a person at end of life is about trying to understand any emotional, relational, existential or religious concerns that a person may have. A person might be struggling to come to terms with how they have lived their life and what meaning their life has had.  They might feel a sense of hopelessness, and need support to help them have meaning in the time they have left knowing. Spiritual care can be helping a person to find meaning or acceptance with their last months or days in this life.  It could also be about dealing with relationships or how to say goodbye.

Spiritual care can involve faith and religious beliefs. These can bring comfort and peace.  Where religion is an important part of a person’s life, it is important that any religious rituals or traditions are included in their last days. For others, religion may have little or no part in their spirituality.

Talking about any spiritual needs with family, friends, a faith community or health care provider can help bring a sense of peace and less distress at the end of life.  Having someone to listen and affirm that a person’s life has meaning, or connecting them back with things  that are important to a person or bring them joy can be helpful.  Professional support may also help the person to explore their fears and to create a space to identify meaning making at this time. This can be supported through pastoral care, social work, psychology and grief counsellors with experience in palliative care.  

ACT palliative care services have relationships with different faith communities and most faith communities are able to support you whether you are at home, in hospital, at a hospice or in an aged care facility.   Clare Holland House and any public hospital have access to a spiritual support team for people who are cared for in these facilities. Most aged care facilities also have access to spiritual support.   It is important that you talk with the people looking after you if you would like someone to support you. 

My baby has died

Losing your baby is one of the most difficult times you and your family will go through. We offer support services that may help you and your family during this time. They include social workers, who are available for emotional and practical support, Aboriginal Liaison Services that offer cultural, emotional, and practical support as well as chaplains and pastoral carers to support religious traditions, beliefs, and spirituality. Making sense of what has happened can be challenging and upsetting. Every parent reacts differently to the death of their baby. There are many support services in community; these include Sands and Red Nose. Their Bereavement Support Service provides specialised support for anyone affected by the death of a baby or young child. You can contact these services at any time with many having an online information and peer support programs.

Lactation after death

If you have experienced a late miscarriage or stillbirth, you are likely to experience the onset of lactation. Some may feel this is a painful reminder of the loss of their baby while others can find this an affirming experience. There is no ‘correct response’ to lactation and its management. Some women find it helpful to suppress lactation, whilst others have found that sustaining lactation and/or donating breastmilk is helpful in the grieving process. 

Please talk to your health professional if you would like advice on expressing your milk and/or donating to a Human Milk Bank. They can also provide a referral to a Lactation Consultant or bereavement services if needed.

Links for more information (suitable for mothers):

  • Australian Breastfeeding Association Booklet (available online or in written booklet form)
  • The ABA is currently developing information on Lactation after Infant Death that is expected to be available on their website soon.
Aboriginal or Torres Strait Islander community

ACT Health respects the sensitive nature of end of life care. We recognise the importance of cultural sensitivity when providing end of life and palliative care services to Aboriginal and Torres Strait Islander people.

Many Aboriginal and Torres Strait Islander people who receive end of life care in the ACT are not from the ACT and want to die on country. Please talk with your health professional early about what you would like to happen at your end of life. This will allow time to arrange for you to go back home if you want. If you die in the ACT and want to return home after you die, funding may be available to help with this from the ACT Funeral Assistance Program.

It is important that you talk about your cultural or spiritual needs with your health professional. Services will work with you to try to best meet these needs. This includes making sure you can talk with an Aboriginal and Torres Strait Islander Liaison Officer if you are Aboriginal and/or Torres Strait Islander. They can help you understand your care and make sure you feel supported. Your health professional can arrange this. 

Winnunga Nimmityjah Health and Community Service Supportive Care Clinic

Useful Resources:

Multicultural community

We know that different people have different needs at the end of their lives. Multicultural community leaders may be helpful to assist people and their families in accessing information for example about traditions around death and dying. They may also be able to support you to access the care you need. 

It is important that you talk also about your cultural or spiritual needs with your health professional.  Services will work with you to try to best meet these needs. Interpreters are also available free of charge if you need one. Your health professional can arrange this.

Useful resources:

Advance Care Planning for multicultural communities:

LGBTIQA+ community

Living and dying in comfort is a basic human right. Sexuality and gender identity will be respected. People all think differently about death, dying, and end of life and there is no ‘one-size-fits-all’ approach.

Services delivered are safe, inclusive and appropriate regardless of sexual orientation and gender identity. The relationships and chosen families of persons receiving palliative care are respected.

It is important that you talk about any needs you have with your health professional.  Services will work with you to try to best meet these needs. Your health professionals and care-workers will work with you to give you the care that is right for you.

Other Resources

People in prison

In the Alexander Maconochie Centre (AMC), end of life care is provided by Justice Health Services as part of Canberra Health Services and/or Winnunga Nimmityjah Aboriginal Health and Community Services (WNAHCS). These services work together with palliative care services.

If you have questions or concerns about a person in the AMC who has a serious life limiting illness, please ring AMC and ask to speak to a staff member from the Hume Health Centre.

Phone: (02) 6205 8588

Service hours are 7 days per week,8:30 am – 5:00 pm

People with disability

All palliative care services in the ACT are designed to be accessible by people with disability. Each service has physical access to accommodate wheelchairs and offer mobility assistance. They also have facilities to assist with hearing or sight impairment. Please do not hesitate to advise the service of your disability when you contact them so that they can best assist you.

Palliative care services that go into the home can also go into group homes for people with a disability.

It is important as with other people in the ACT that if you have a disability, you also have an advance care plan completed that can express your wishes for future treatment any time that you are unable to tell others. Please contact the advance care planning service to make a time to write an advance care plan.  If you need support to write a plan please let the service know so that they can make sure they have the right support you will need. 

People with dementia

Like many life limiting illnesses, people in the end stages of dementia gradually become unable to be independent, recognise people, communicate or do regular activities such as eating, dressing, or having control over their body.

Palliative care provides support and care for any person that has a life limiting illness, including dementia. Palliative care is not just provided at end of life, but can assist a person with managing their symptoms so that they are comfortable and can have better quality of life.

Knowing how dementia can look like in the end stages can help you prepare for the gradual deterioration and understand some of the decisions that may need to be made in the future. So that we know what you, or a person you care for, would like their end of life care to look like, it is important to have conversations about the future and write an advance care plan while the person is able to do this.

The Planning Ahead website has information for people with dementia and their carers about advance care planning. People are able to build their own plan on the website or contact the Advance Care Planning Service. This website also has resources in other languages.
If you would prefer to talk to someone, call the National Dementia Helpline on 1800 100 500 (available 8am to 8pm Monday to Friday excluding public holidays).

Resources

Page last updated on: 18 Nov 2021