PALLIATIVE CARE JOURNEY
Planning Ahead
Advance Care Planning is an important stage in the care of someone with a life limiting or life threatening condition. This section gives an overview of what Advance Care Planning is and the types of questions a person in palliative care may need to answer.
The Advance Care Planning: For Now and For the Future policy document for all adults in Northern Ireland was launched in October 2022, providing a framework for Advance Care Planning for all adults in Northern Ireland. The policy document offers an overview of Advance Care Planning, and the values and principles that underpin it. It explains why Advance Care Planning is important and how it can help people make timely, realistic and practical plans for their future. It will enable a person to think about what matters to them now and for the future, and to make choices that reflect this.
Advance Planning ahead for our healthcare isn’t something we usually think about. If we’re well, we don’t expect to become seriously ill. We may assume that we’ll always be able to make decisions for ourselves even when we’re unwell, but this isn’t always the case. For many people with an illness – especially a long-term illness – planning ahead may feel particularly difficult. You may already be struggling to cope with fears and uncertainties about the future. It’s important that you don’t feel alone when planning ahead. Remember that health and social care professionals can help you, as well as your family and friends.
Planning Ahead could include the following:
- Where you would like to be cared for if you can no longer look after yourself, for example at home, or in a hospital, care home or hospice.
- What kind of care you would like. However, bear in mind that you can’t demand particular treatments.
- Where you’d like to be cared for when you’re dying, for example at home, or in a hospital, care home or hospice.
- Information about specific spiritual or religious practices that you’d like to be carried out or reflected in your care.
- Which family members or close friends you would like to be involved in your care.
- Who you would like to act on your behalf if decisions need to be made about your care.
- Who you would like to look after any pets.
- Whether you would like someone to tell you how serious your condition is and the likely prognosis.
Extracted from ‘Your Life and Your Choices: Plan Ahead Northern Ireland’ (Link to document) Macmillan Cancer Support and the Public Health Agency, 2013
Additional Resources
Northern Ireland
This booklet is about some of the ways you can plan ahead and make choices about your future care if you live in Northern Ireland.
Advance care planning is a process of discussion between you, your partner, family or friends and depending on your individual circumstances at the time, those who may provide care for you, for example nurses, doctors, care home manager or social worker
This guide has been produced in response to what people with learning disabilities, their parents and siblings have been asking for years: what is going to happen in the future, and how can we shape it?
The death of a parent or sibling is one of the most fundamental losses a child will ever face. At Winston’s Wish, we believe that bereaved children need support to make sense of death and rebuild their lives – and that is why we exist.
Republic of Ireland
Irish Hospice Foundation’s Think Ahead programme allows you to write down your wishes and also to start the conversations with your loved ones, that otherwise might be difficult.
The Let Me Decide website providers an introduction to the Advance Care Directive tool and includes a number of educational videos and resources.
This website explains Enduring Power of Attorney. An Enduring Power of Attorney (EPA) enables you (the “donor”) to choose a person you trust (called an “attorney”) to manage your property and affairs and/or personal care in the event of you becoming mentally incapable of doing so.
- Accessible Planning Tool
How to use the Accessible Planning Tool | Accessible Planning Tool | Carers Guide
End of life care planning enables the person to feel an element of autonomy and control regarding their own death and will increase the likelihood that the person’s wishes are respected as they approach the end of their life. However, engaging people with intellectual disabilities in end of life planning is not common practice. Below is a guide to support carers to facilitate end of life conversations with people with intellectual disabilities. This is accompanied by an easy read information sheet to help people with intellectual disabilities to think, talk, write and review the care and treatment they want as they approach the end of their life. These wishes can then be written and recorded in the accessible end of life planning tool.
