While no one wants to dwell too much on dying, making arrangements for that inevitable event is very important.
Dr Tony Holohan, former Chief Medical Officer, and now an Irish Hospice Foundation (IHF) board member, believes that the updated Think Ahead Planning Pack, available free from the IHF, is a great tool to help you get your wishes down on paper.
Say, for instance, that you become very ill or are injured, would you want to be placed on a ventilator (a mechanical breathing machine)? Would you want to be artificially fed? Would you like your organs to be donated if you died in an accident?
Ease stress on family members
Filling out the three-section planning pack will mean that your wishes related to all this and more will be recorded, easing stress for family members at a distressing and emotional time.
“Conversations about illness, dying and death should happen in every home in Ireland before there is a crisis,” he says.
“If you don’t think about all these things ahead of time, it makes it more difficult for everyone around you, so having those conversations well ahead of time is important.”
The advice when recording your preferences and choices for your future care through illness, end of life and after death is to think about what you want, talk to someone about your wishes and tell them where the form is.
Dr Holohan used the planning pack when his late wife was ill, he says.
“We talked about what we wanted and filling in the information was a way of structuring our conversation. It’s not a single conversation, you fill it out over a period of time, but the important thing is to complete it.”
He is delighted to be associated with such an important IHF initiative, he says, and he therefore advocates getting the pack and not putting off the task of filling it in.
“You’ll have the comfort of knowing that if something does happen to you [where you can’t speak for yourself] your family members will be able to carry out your wishes instead of saying, ‘God, I wonder what he/she would have wanted’. It means there is no ambiguity for families and loved ones, our wishes are met and there is great comfort in that for all involved.”
The Think Ahead Planning Pack is divided into three sections:
1 My personal wishes and care plan
This is a booklet where you fill in:
Store this copy securely and let those who are important to you know where it is. Update regularly.
2 My advance healthcare directive
This is where you record your healthcare choices and appoint somebody to speak on your behalf should you lack decision-making capacity to advocate for yourself through illness, accident or mental distress. This document is legally binding when properly signed and witnessed and should be reviewed regularly as your decisions may change over time. It lists:
Signing and having this document witnessed by two people makes it legally binding. Two witnesses are required, one family member, one not, to avoid the risk of coercion.
3 My medical summary form
This is a summary of your care and treatment decisions and preferences, to be shared with your GP/specialist.
Ahead of time
There isn’t a specific age to fill the form in at, according to Dr Holohan. Rather, the key thing is to do it well ahead of time.
“The reality is that as we get older, we think more about things like wills,” he says.
“We all know we are going to die at some point and that wills should be written if we have family or property. Making a will or filling out the Think Ahead Planning Pack is not going to make illness or death progress any faster, but if something does happen, it makes it easier for family members who have to deal with your affairs and wishes. We’d all want to do that for those we love. It’s not just about making things easier for yourself.”
Starting the conversation
He suggests choosing the person you start the end-of-life conversation with carefully.
“It might be a trusted friend, a family member, maybe not your spouse who is going to be immediately upset at the prospect of such a conversation. Allow yourself to get used to articulating these ideas, then prepare yourself for introducing that conversation with someone you trust.”
The Irish Hospice Foundation has some guidance about how to start such a conversation in its conversations over a cuppa series.
See www.thinkahead.ie or https://hospicefoundation.ie/i-need-help/i-want-to-think-ahead-old/start-to-talk/
Should be normal in hospital
Dr Holohan is in favour of having this planning pack distributed to hospital or nursing home and GP patients routinely. “The more we can normalise this the better,” he says. “Patients should know that it is a routine part of what those services are going to ask about and not a case of ‘oh, gosh they must think I’m about to die’. These conversations shouldn’t wait until someone is in intensive care or about to be admitted to a hospice. There is pressure on and urgency then trying to clarify what someone’s wishes regarding treatment are. Thinking all these things out beforehand makes everything easier.”
Following the passing of legislation in 2022, the advance care directive, signed and witnessed, is now legally binding.
“This will give protection to your wishes and allow you to have a designated healthcare representative who can say what you want and don’t want in terms of treatment,” he adds.
“The evidence is that when people think about these things, they tend not to choose what isn’t going to add quality and quantity to their life.”
Dr Holohan, whose grandparents were farmers, advises everyone to use the Think Ahead Planning Pack.
“Sometimes life gets in the way and something that isn’t immediately urgent gets put on the shelf, but filling this out is important the same as updating wills, so my basic message, including to farmers, is not to put it off.”
The Irish Hospice Foundation carried out a survey in 2022, which identified that after the pandemic of the last couple of years, 47% of people were giving more thought to their own end-of-life wishes and 56% have talked to their friends and family about death and dying. For more information, see www.thinkahead.ie