The importance of maintaining hope is not always readily considered in palliative care. However, all health professionals should be aware of the significance of hope in the context of living with life-limiting illnesses. The meaning of ‘hope’ needs to be carefully considered and explored in a range of different ways for different people and families.
It is understandable that patients and families may be aware of a poor prognosis and yet still wanting to actively participate in life and in discussions about the future. Sometimes patients will want to talk about that overseas holiday next year and make plans about where they might go and what they might see. They may talk about seeing a longed-for grandchild while aware that they will not be alive to see it.
It is important not to give false hope. That is not to say that hope should be taken away. However if a patient is aware that they are dying, making long-term plans takes on a different meaning. Honest communication allows patients and families to make realistic plans. Clear understandable language is important and should be used consistently throughout the multidisciplinary team. For example, if a patient talks about their wish to attend their son’s wedding you may need to gently explore the need to bring the wedding day forward, if the patient’s prognosis is very poor. Communication skills training for allied health professionals can be helpful.
Hope is a complex concept in end-of-life contexts. People’s hope changes as their journey progresses.
Hope changes from hope about being cured to hope about:
- having a good quality of life in the time they have left
- being able to tie up loose ends and make sure their family will be okay
- reconciling relationships or re-establishing lost connections before they die
- not having any distressing symptoms
- being cared for and dying in their preferred place
- continuing to have a spiritual existence after their physical body dies
- leaving behind some kind of legacy.