Irish Hospice Foundation
Toolkit for Compassionate End-of-Life Care
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Families, friends and carers may need support with both the practical and emotional aspects of a person dying. Here are some practical tips to support family, friends and carers when a person is dying: • Complete an information-sharing care plan. Have a discussion (and document) with the patient/resident about who is important to them and who they want to be included in their care, especially if: - eir condition deteriorates.
- ey are unable to make decisions for themselves. - Tests/scans/investigation results are available. - An emergency situation arises.
• Ask family, friends and carers if they would like to be involved in personal care, if this is something that the dying person would want. It is important to involve people at the level they wish to be involved – some may prefer to have a hands-on involvement, others may be happier staying further back. • Suggest that people decide together how they are going to ask for and share information about the person, to avoid everyone calling the ward or care centre for updates. • Encourage the dying person to communicate regularly with their relatives and friends – provide support with using a phone if needed, and ensure mobile devices are kept charged. • Talk with friends, family and carers about the care and about any changes in the condition of the person. It can help to talk and explain about the dying process. • Provide information timely and sensitively, giving consideration to privacy. Language should be clear and understandable, avoiding jargon. It is useful to provide written information, which can be taken away by relatives and friends. • Encourage people to voice any worries or concerns they may have. “What is your biggest concern at the moment?” • In keeping with the wishes of the person, flexible visiting arrangements should be in place. Some people may wish to be present with their dying person as much as possible, including staying overnight. • Some people may come to you to talk or ask about different care or treatment options. If/when they do, remember that they are simply advocating for the patient. • Prepare people, especially when death is imminent. “Your mother is sick enough to die”, “Your mother is dying”. If they are not aware of what is happening, they may miss the chance to say what they need to say to the dying person. Support them to be with their person, talk to them and touch them. Each person may need time on his/her own with the person who is dying but they may not feel they can ask for this. “It might help if each of you spend some private time with your mother”. • Some people may be anxious about the conflicting demands on them – being with the person who is dying and caring for others. ey may need acknowledgment that this is difficult, and reassurance that they can attend to others. “It is ok for you to leave if you need to. We will call you immediately if there is any change.” •
People often ask “How long do you think they have?” , “Will it be tonight?” . It is a difficult question. A good way to answer is “We can never know for sure, but my advice to you would be, this is the time to say what you need to say, and if you do need to leave, then leave nothing unsaid if you go”.
Care of the Dying Person 4
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