Rebecca Lloyd is public engagement officer with the Irish Hospice Foundation. She spoke with Irish Country Living about Advance Healthcare Directives (AHDs) and the importance of making such decisions sooner rather than later – and telling someone you have done so.
Margaret Hawkins (MH): What is an AHD?
Rebecca Lloyd (RL): It is a document that allows people – patients – to indicate their wishes regarding treatment if they become incapacitated due to illness or accident.
It is about the refusal of healthcare – not having treatment that you don’t want – and knowing that you have choices related to this. It’s about receiving the treatment you want and not receiving treatment you don’t want. An AHD, in its very core, is your voice encapsulated. Too often, people shy away from discussing illness and death but thinking about what you don’t want and writing it down means that others won’t have the agony of making decisions on your behalf.
MH: When is it needed?
RL: Only if you can’t communicate your wishes yourself.
MH: Can it be an audio or video recording of your wishes?
RL: You can audio or video record your wishes but they must always be transcribed into a written form as well and signed and witnessed.
MH: Should it be typed?
RL: Your wishes could be (hand) written on the back of a beer mat as long as it is signed and witnessed. It will then still be legally binding.
MH: Who are AHDs for?
RL: They can be made at any age but the earlier the better. Accidents do happen and a person could be in a persistent vegetative state (PVS) and, without a clear direction from the patient, decisions made by their next-of -kin such as the removal of ventilation or tube feeding are not legally valid. Sometimes the decision to continue or stop treatment will be made by the court using all the evidence available and to try and act in the best interest of the patient. This process can be very traumatic for families. If you have made an AHD, however, there is written instruction about what you want and don’t want in terms of treatment.
MH: What medical situations are you talking about?
RL: Generally people think of an AHD as being “do not resuscitate” and yes you can include this but it could also be, “I’ve got cancer and I don’t want any more chemo”. It is actually being quite specific about what you don’t want. Obviously the younger you are the less specific you can be about what you would or wouldn’t want but you can make a broad strokes statement like, “Should I be in a vegetative state and there is no hope for my recovery I would want A or B”. It’s about knowing you have choices and making those choices known.
MH: Healthcare staff – how does an AHD help them?
RL: Knowing a person’s wishes is really useful for healthcare providers who administer care because they can direct care according to the person’s wishes.
MH: For family – what is the benefit?
RL: Knowing your decisions will mean that your family don’t carry the burden of making choices for you at the end of life.
The last place anyone wants to be having an argument is around the bed of a person who is poorly and may be at the end of life. Sometimes the family want more medical intervention and the person may not but may not be able to say so. Sometimes if we, as family, are in an emergency ward or in crisis and panicking we will say, “Do everything you can, doctor”. We all have loved ones and don’t want them to die so we’ll say that, in a very difficult situation, but what we may really mean is, “Do everything you can, doctor, that won’t cause suffering and harm”. We forget the last bit. If a person has made their wishes known this panic situation can be avoided.
MH: Can next-of-kin say what happens?
RL: We need to know that the term “next-of-kin” is a misnomer. There are no actual legal rights associated with it. People who have next-of-kin might assume that their husband or wife or children could make healthcare decisions for them but that is actually not the case. If there is nothing written down clearly in an AHD, however simple, the person that makes end of life decisions for the patient who cannot communicate will be the attending physician, not the family. However, doctors and treating physicians will always find out as much information as they can about their patients to direct their care – and next-of-kin are part of this – but not in a legal capacity.
MH: Has this rule changed lately?
RL: No. It has always been so. What’s interesting is that healthcare staff and the Irish public don’t know enough about this. Healthcare staff will act as detectives trying to find out the patient’s wishes – asking family and so on – but doctors will be the ones making the decisions if the patient has left no instruction. If next-of-kin said “do not resuscitate” but doctors felt that should be done that’s what would happen. Next-of-kin do not have any legal mandate.
MH: How do we go about planning an AHD?
RL: Having the conversation about your wishes is the first important step. Don’t leave it too late. A good time to have this initial conversation is at family get-togethers like birthdays, weddings, christenings and Christmas where you can mention “actually I have made some decisions about what I want and it would mean a lot to me if you would make sure that they are adhered to”.
MH: Who should I give my AHD to?
RL: Choose this person wisely. It could be a friend or a family member. You should remind them that they are not making a decision for you; they are just communicating your decision in case you cannot.
MH: Who should I show it to and where should I keep it then?
RL: You need to have it with you in hospital so that you can show it to staff. You should also give a copy of it, or email it to those you trust. It’s no use leaving it sit in a drawer or in a solicitor’s office.
MH: Should I show it to my GP?
RL: Yes. Ask them to write the fact that you have made and AHD into your notes. If you have advanced heart disease or chronic obstructive pulmonary disease (COPD), for example, cardiopulmonary resuscitation (CPR) might not be beneficial. Your GP would be able to say, “These are the options at the end of life” and then you can make choices. He/she can say, “this (treatment) is invasive, this is not invasive”. You can then make a value based decision on what’s important to you.
MH: Is there a template document we can use?
RL: Yes. We have what’s called a Think Ahead form available via the Irish Hospice Foundation.
It has an AHD section in it. It guides you through refusals and interventions and within that you can say “I don’t want antibiotics”, “I don’t want to be peg fed”, or you can say, “I would like it if the doctor would make these decisions”. It gives you options and choices to make. There is a downloadable PDF that you can email to people when completed.
MH: What kind of death does it relate to?
RL: Your AHD relates to natural dying only. It is not euthanasia (assisted dying). Euthanasia is giving you something that will hasten death (which is not legal in this country) whereas an AHD relates to a natural death.
MH: Is an AHD legal?
RL: Yes, it is legal under common law. However, there is a new law coming in which is called the Assisted Decision Mental Capacity Act 2015 which will give people much more power to speak for themselves. Part eight of the Act relates to AHD.
In Ireland, as in other countries, we don’t talk about dying and death enough, Rebecca says: “We are not death literate enough and we don’t make enough plans for our future care especially as an ageing population which we should do.
Doing this could be even more important for people working on farms as they face more dangers in the workplace. Young people could face accidents that could incapacitate them for life so to have that conversation with their partners or their parents would be very important. This would also be particularly relevant for those involved in high risk sports, for example jockeys and racing drivers.”
An elderly farmer in Tipperary got a Think Ahead form in his GP surgery. He brought it to hospital with him, tied up with twine.
Nothing was filled in, but across the centre pages he had written: I want to die at home with my cows.
This signposted his wishes to staff and family and supports were put in place to enable this at end of life.
“If he hadn’t written it down he wouldn’t have died where he wanted to,” Rebecca says. She points out that, depending on a person’s personality, they may or may not tell hospital staff what they want.
“Some people become very polite when talking to medical people and don’t like to say, ‘No, I don’t want that’, but if you have a Think Ahead form they will know your wishes.”