We answer common questions about palliative care such as what it is, providers, how to access etc.
Why is it important for me to plan ahead?
We don’t know what will happen in the future, but most of the time we have an idea of what we might want should we be especially at the end of our life.
The only way those important to you will understand and know your wishes and thoughts about end of life is if you talk to them about it. We might assume that those close to us already understand what we want but a lot of the time this is not the case. It is important for you to make your wishes known that if you become unwell they will know what to do. Our Think Ahead form can guide you through this process.
Talking about dying won’t make it happen, but it will help you think and communicate your values and wishes to those who need to know. Remember this is not a one off thing, your priorities may change over time so the more you talk the more those important to you will understand what is important to you should a time come where they have to speak on your behalf.
Who gets to make decisions about my care?
First and foremost you.
- You get to decide what is important to you.
- You have the right to make decisions about your treatment and care.
- You can refuse treatments and state your preferences about where you want to receive care at the end of life – at home, in hospital, in a care or nursing home or if needs be a hospice.
It is useful to think about where you would like to be cared for before and what you might want to happen should you become ill or incapacitated sometime in the future. This is known as Advance Care Planning (ACP) and you can record your wishes using Think Ahead
What happens if I don’t complete a Think Ahead form/AHD and I become incapacitated?
If you are not able to speak for yourself, your healthcare team will act like a detective and try to find out as much about you as they can, in order to make the best decision for you.
They will ask to speak to your close family members or friends. So it is a good idea that even if you don’t’ want to record what is important to you, you have a conversation with the closest person to you and let them know your values and beliefs.
So if asked have an idea of what is important to you.
If I record in an advance health care directive my wish to receive palliative care and then become unable to speak for myself, how can I ensure what I want is legal?
Currently, the Advance Health Care Directive in Think Ahead is legal under common law, which states that anyone (with capacity) can exercise their will and preference to refuse medical treatment. For example, you may want to state in advance that you do not want certain treatment at the end of your life such as CPR.
- To be legally valid you must have the AHD part of Think Ahead (page 14-16) signed by yourself and witnessed by two people over the age of 18.
- It is also advisable that you bring your Think Ahead to your next visit with your GP and/or medical team so they are aware of your wishes.
- It is also very wise to speak to those close to you, a trusted friend or family member about what is important to you should you become sick, lose capacity, or are unable to speak for yourself
However, this does not specifically answer the question, and this is where it gets a bit more difficult.
Under common law and under the new ASSISTED DECISION-MAKING (CAPACITY) ACT 2015 which is enacted but not commenced you cannot expressly demand treatment.
For more information on the 2015 Act you can go here.
What you can do is.
- Discuss the best treatment available to you with your GP/ healthcare team and talk about your wishes for certain treatments. Then in turn they will discuss the best options for you.
- If you have a life-limiting illness and need palliative care the person who would refer you to receive that care would be your GP. So, it is a good idea to start having discussions with your GP at your next appointment, and ask them the best options available
- Sometimes the issue is not always a legal one but could be a lack of open conversations with your GP, Healthcare team or with those people important to you. Having a conversation with them could be the first step in ensuring you get what you want.
There are parts of our website which may help you further
What is an Advance Healthcare Directive (AHD)?
- An AHD is a way to make your healthcare wishes known to those important to you (family, friends, healthcare professionals) if you are unable to speak for yourself, or if you lose capacity due to illness or accident.
- It allows you to record the refusal of healthcare treatment, including life-sustaining treatment such as resuscitation, breathing machines, or feeding tubes.
- An AHD will only come into effect if you lose capacity to make decisions for yourself.
You do not have to make an Advance Healthcare Directive if you do not want to.
In order for an AHD to be valid and applicable you;
- Must record your decisions for future healthcare in writing in an Advance Healthcare Directive.
- You must ensure your AHD is witnessed – this is to protect you from being forced to make decisions you might not want to make.
- You must be 18 or over
- You can nominate someone you trust to speak on your behalf and guide them on how you would like them to act on your behalf should they need to.
- An Advance Healthcare Directive only comes into effect if you lose capacity through illness or accident and cannot make a decision. If you are able to communicate to Healthcare workers and have capacity they will ask you what you want/do not want.
- Having an AHD can help you and those important to you to provide information and direction to healthcare workers so the care you receive is in line with your wishes and preferences. You can use Think Ahead to direct your conversations with your healthcare team.
Who should fill in an Advance Healthcare Directive?
An AHD isn’t just for those who are over 50 or who need end-of-life care.
It’s a good tool to use to ensure your family and those involved in your healthcare know your preferences if you’re temporarily unable to communicate. Even young and healthy people can find themselves temporarily unable to provide decisions about their healthcare, having a conversation about what you might want to happen is an invaluable tool.
I have made a will and an Enduring Power of Attorney. Do I still need to complete an Advance Healthcare Directive?
It is advisable yes.
A Will, Enduring Power of Attorney and Advance Healthcare Directive all have different functions.
A Will tells people how you want to distribute your assets after you die.
An Enduring Power of Attorney (EPA) allows you to appoint someone that you trust (an attorney) to make financial and personal decisions for you if in the future to plan for a time if you lack the capacity to make those decisions.
You create an Enduring Power of Attorney with a solicitor. For more detailed information on EPA’s you can consult the Law Society of Ireland
An Advance Healthcare Directive (AHD) contains decisions for future medical care in case sometime in the future you became too ill to make decisions for yourself.
What is the status of Advance Healthcare Directives in Ireland?
The Assisted Decision-Making (Capacity) Act 2015 provides for advance healthcare directives and sets out legal rules about how a person can make an advance healthcare directive and how healthcare workers should apply them. The Assisted Decision-Making (Capacity) Act 2015 has not been fully commenced yet. This means that it is not yet operational. However, before the Act becomes operational, it is possible to make an AHD.
You may also wish to appoint someone you trust to act like your agent to help ensure that your AHD is respected.
An AHD should always be kept under review as your wishes and your health may change. It is strongly recommended that you should review your AHD
For more information about the 2015 Act visit the Decision Support Services website
The HSE website also has a huge amount of valuable information.
The HSE have made an explainer video on the Act, below:
What exactly do you mean when you say ‘refuse treatment’?
You have the right to refuse healthcare treatment and you can discuss refusal of treatment with your Healthcare Worker (GP, Nurse, and Consultant). You can also refuse treatment in the future using an Advance Healthcare Directive which is used to record specific treatments you want to refuse if you lack capacity to make decisions.
What is capacity?
Having decision-making capacity means that you can do all the following:
You have the ability to understand information about the decision you have to make, at the time the decision is to be made;
You can hold the information long enough to make a choice;
You can weigh up information as part of the process of making the decision, and you can communicate your decision by writing it down; by telling or showing someone what your decision is with the assistance of another person if that is necessary.
You may need assistance in getting information and having the details of the making of an AHD explained to you but you must be able to make the AHD yourself, that means you must have decision-making capacity to do so.
An AHD is used only if you cannot make decisions for yourself at the time decision has to be made for whatever reason.
Do I need a solicitor to help with this?
No. Completing Think Ahead isn’t difficult, and a solicitor is not necessary. What is most important is talking to those who are important to you. Without that conversation, the best form in the world may not be helpful!
Should I tell a solicitor I have completed Think Ahead?
It is a good idea but it is not necessary. Most of the time a solicitor will only be contacted following a death so any information they hold may not be consulted in time.
What should I do after I have completed Think Ahead?
It is a really good idea to have a few copies. Make copies for all those who are close to you. Ensure you have discussed it with your GP ask them to add it to your records.
Photocopied forms are just as valid as the original.
Keep a copy for yourself in a visible, easy-to-find location – not locked in a drawer. Some people have a hospital bag that they keep it in, or have a plastic envelope attached to the fridge with it in.
You can download additional Think Ahead copies here
I want to be able to talk about planning ahead but don’t know how – can you help?
1. Normalise the conversation
A good way to normalise a difficult topic is to ask simple questions.
- Dad’ this is really hard for me to ask, but have you thought about whether you’ll want to be at home or at a hospice if need be?”
- Mum -can you give me some advice? If you became ill and I had to speak for you at the Hospital what would you like me to say…?
- If I become sick and am unable to talk for myself I would like “xxxx” to speak for me, have you thought about who you would choose?
2. Ask for permission
“Asking for permission” is a good relationship building strategy and something that can help put us on an equal footing.
• Do you think we should talk about …?
• I know talking about these things is never easy but will we have a go, I’ll start ..?
• I wonder is it time we talk and think about what matters at the end of life, what matters to you/me is …
3. Explain your motives
- Perhaps draw from a personal story that might help “Did you know that a Tipperary farmer filled in Think Ahead (only one page) and wrote on it that he wanted to die at home. The nurses and doctors moved heaven and earth to get this to happen.
Have you thought what you would like?
4. Tell the truth
I could really do with your help I have just been reading about an advance care planning tool called Think Ahead – I would really like to talk to you about it. Would you mind?
5. What to do if people get upset
- Stay calm. ‘I can see this conversation is tough for you. Can you tell me what is making it difficult?”
- Use more than words to convey empathy and sensitivity, such as eye contact, sitting down to be on the person’s level, touch, pauses, and silence-
6. Try some quick questions
- Who do you want to make your health care decisions for you?
- What healthcare treatment(s) do you agree to or refuse if a health care provider recommends them?
- Would you accept or refuse life support and life-prolonging medical interventions for certain conditions?
- What are your preferences should you need residential care and not be able to be cared for at home?
Above all, remember:
Be brave. Don’t be shy
Be sensitive. Don’t rush
Be real. Respect each other
Be willing to let it go and try again another time
Talking about these things is not a one off conversation but a series of conversations.
For more help on conversations please use our Conversations Over a Cuppa series.
I want to die at home – how can I make sure it happens?
There are many supports available from the HSE and Hospice at Home services who enable people to stay in their own homes. You will also receive support and care from your GP and Public Health Nurses.
If you preference is to die at home you need to start with discussing this with your GP and family members. The earlier you have these conversations they more they can help you, Your healthcare team, friends and family involved in your care can help you discuss you options.
You can use Think Ahead to help you drive the conversation with your healthcare team.
Who will take care of me at the end of my life?
Most people when asked want to stay in their own homes for as long as possible. With the help of your GP, public health nurse, friends and family alongside palliative care services this can usually be arranged. Friends and family are important and essential supports at end of life.
It is so important that you discuss place of death with those close to you and your healthcare team, when a record is made on place of death you are twice as likely to have your wishes respected.
Sometimes however dying at home may just not be possible, but having clear and frank conversations with those who care is still very important.