We have collated some resources on this page that you may find useful. We work closely with palliative care teams within Leeds hospitals and throughout the Yorkshire region to offer our adult congenital patients comprehensive end of life and palliative care.
Why think about this?
There may be times in your life when you wonder about what would happen if your heart condition were to seriously worsen. We appreciate that these things are not easy to think about or discuss and some people would rather avoid the topic completely. There is good evidence, however, that patients with adult congenital heart disease want to talk about their future health, good or bad, and often don’t get the opportunity that they want to.
‘It’s ok to ask’
We strongly believe that all adult congenital patients, irrespective of their state of health, should be able to freely talk about how their heart condition will change over time and how this might influence their care should they become severely unwell. We appreciate that some patients want to think about this more than others.
We think this is particularly relevant if you are becoming more limited (short of breath and fatigued, for example) and you may require more medicine to keep you feeling well. It is also some to be considered if you are contemplating major changes in your life such as: getting married, starting or expanding your family, emigrating, or making significant financial commitments.
What is Advance Care Planning?
You may wish to record what your preferences or wishes are for your future care. Alternatively, you may prefer to trust those around you who understand the circumstances of your care to make decisions in your best interests at the time. One way of making people aware of your wishes is by a process that is called advance care planning.
Advance care planning is a process of discussion between you, your partner, family or friends and anyone closely involved in your care; for example: the adult congenital team, heart failure team, general practitioner or palliative care team.
During discussions you may decide to share views, preferences and wishes about your future care so that these can be taken into account if you are unable to make your own decisions at some point in the future. This process will enable you to communicate your wishes to everyone involved in your care.
Planning for Future Care
End of life and palliative care easy read information
What if my heart stops?
Dying matters website
National council for palliative care http://www.ncpc.org.uk/
Hospice UK https://www.hospiceuk.org/