Key points
- Take the time while you are well to think about what you want to happen if your health worsens.
- Studies have shown that planning ahead for end of life improves a patient’s quality of care, and can ease stress and grief for families.
- It’s natural to find talking about dying hard, but making our wishes known and putting a plan in place can help you feel better and more in control.
- There are practical steps you should take now, like creating a will and designating a power of attorney.
Why do I need to plan for end of life?
Everyone should think about how they want to be cared for if their health suddenly gets worse, and at the end of their life. This is particularly important if you are considering or waiting for a transplant. It is possible that you will become sicker while waiting for a transplant, and you may not receive a lung transplant in time. If you do have a transplant, your health could still suddenly get worse.
Advanced care planning
Advanced care planning is about taking the time while you are well to think about what you want to happen if your health worsens. This means that you won’t have to make decisions when you are very sick. Talk to your family and healthcare team about your choices, values and preferences. This will help them make the right decisions if a time comes when you can’t decide for yourself.
Studies show that advanced care planning improves a patient’s quality of care. It also eases stress and grief for family members and care partners who may have to make decisions.
End of life planning
End of life planning focuses specifically on your wishes for dying and after death. It gives your family and care partners a clear understanding of your preferences for your final days and afterwards.
Where to start
It is natural to find talking about death and dying hard. It can make us feel anxious or uncomfortable. It can also feel risky—as if it will bring death closer. We worry we might upset the person we are talking to. But when we do talk about it, make our wishes known and put plans in place, most people actually feel better and more in control.
Some things to consider
- Is there a point in your illness where you would no longer like to receive treatment?
- Who will make decisions for you if you can’t make them? This is called an “enduring power of attorney”.
- What do you want your final days to look like? Where would you like to be? Who would you like to be with you?
- How would you like to be celebrated after your death?
It is a good idea to then record your wishes. There are lots of helpful tips and tools available from the Irish Hospice Foundation.
Some practical things to think about
- Do you need to create or update your will?
- Have you designated a power of attorney? A solicitor can help you with this.
- Have you put your important legal documents and information in one place?
The Irish Hospice Foundation also has a detailed guide on planning for your future care.
Starting the conversation: Planning for end of life
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Professional support
The transplant team, your local respiratory consultant and social worker will talk to you about your wishes for end of life care, support you with planning and answer any questions.
You may be referred to the palliative care team at different points in your transplant journey. The team won’t only focus on the end of life. Their goal is to improve the quality of your life and help you manage your symptoms.
If your health gets worse and you are no longer responding to treatment, you may be referred to the Irish Hospice Foundation, who will care for you and support your family in your final days. Hospice can be offered at home, in hospital and in other care facilities. Your social worker will help make arrangements that best suit you.