The diagnosis of a life-limiting illness or a referral to palliative care may cause children, or young people and their families to contemplate, explore or reconnect with their spirituality. There are many different types of spirituality, and many different reasons that bring people to consider the ‘bigger’ questions in life. People can be ‘spiritual’ without being religious, whereas most religions have a spirituality component.
Spirituality plays different roles in people’s lives. Some people don’t see themselves as spiritual while others think about it occasionally. Some might have spiritual practices or rituals, while for others, spirituality is at the centre of their lives and determines their principles and guides their decision making.
Spirituality shapes beliefs and brings understanding and meaning to why we are here. It is those things that bring hope, purpose, comfort and a source of strength. It is often through connection with others, nature, or to something that is significant or sacred. It can be through religion, prayer, or belief in a God, being, or higher power. It can be through faith, prayer, meditation or time to reflect on your own or with someone else.
When a child has a life-threatening illness it is common for family, friends and community to reflect on the ‘bigger’ life questions- ‘Why is this happening?’, ‘ What is the purpose of this?’, ‘Why me?’. At these times spirituality can provide comfort, hope, or strength, and generally help people cope at one of the most difficult times in a person’s life. It can also be a time when people become distressed or confused - possibly even question their spiritual or religious beliefs.
As health professionals, it is important to explore family’s spiritual and religious beliefs for many reasons. Firstly, it is good practice as it is often the basis for people’s lives and the decisions they make. We can then also assess if they are adequately supported in this area. It can also promote understanding for clinicians about the family’s desires for treatment, end of life care, and beliefs around death.
Considerations for addressing spirituality:
- Ask the parents, children, siblings, extended family whether they are religious or spiritual and what this means to them.
- Enquire about where they get their strength, what they think their purpose is, or what hope they have. Give people time to talk and reflect.
- Ensure their spiritual or religious needs are being addressed. Do they have spiritual or religious rituals or traditions? Is the family already linked with a religious institute e.g. temple or church where there is a community who share their beliefs that they can gain support from? This could include family, friends, or clinicians. If they are religious, encourage them to talk with others who have the same beliefs.
- Regardless of a person’s beliefs we can never assume the support they may want, or another perspective that may help with decision-making. In any circumstance it can be useful to advise families about the chaplaincy services available in all hospitals, and local church/ religious places of worship where they may wish to speak to religious or pastoral staff.
For more information on addressing spirituality:
The Children’s Hospital at Westmead
The Children’s Hospital at Westmead has a Quiet Room located on Level 2 for prayer, reflection, meditation and services of worship. It is open 24 hours.
Chaplains can be contacted through the switch on (02) 9845 0000.
Sydney Children’s Hospital
A non-denominational chapel is located on the grounds of the hospital that is available for patients, parents/carers, family members and other visitors to the hospital. Chaplains are available for most religions only for in-patients at the hospital, if you would like a chaplain you just need to ask the nurse looking after you on the ward. If you are out of hospital please contact the SCH Palliative Care Service for information about Chaplaincy support on (02) 9382 2095.
John Hunter Children’s Hospital
There is a chapel located on level 2 of the John Hunter Hospital. All are welcome to use the chapel for quiet prayer or reflections. There is a daily prayer session in the chapel -9am weekdays. Chaplains are available to visit patients, relatives and staff regardless of religious affiliation. The chaplaincy service can be contacted 24hours a day via switch on (02) 4921 3000.
- Davies, B., Brenner, P., Orloff, S., Sumner, L., & Worden, W. (2002). Addressing Spirituality in Paediatric Hospice and Palliative Care. Journal of Palliative Care, 18(1), 59-67.
- Hexem, K.R., Mollen, C.J., Carroll, K., Lanctot, D.A., & Feudtner, C. (2011). How Parents of Children Receiving Pediatric Palliative Care Use Religion, Spirituality, or Life Philosophy in Tough Times. Journal of Palliative Medicine, 14(1), 39-44.