Helping Someone with ACP
Discussing ACP is easier if you have a trusting relationship with the person. Where possible, you should encourage the older person to discuss these matters with their family. It is easier if everyone knows what to expect. However, sometimes the person may not want particular family members involved in these discussions. So, discuss who should be aware of these conversations. Get them to clearly articulate at the beginning who they want to know about their ACP and/or ACD.
You should only discuss these matters with others if the older person has given you permission.
When it comes to ACP, many people find starting the conversation to be the most difficult part. Sometimes conversations will arise naturally.
Sometimes it may be appropriate for you start the conversation. Think about how you might begin and what questions you could ask the older person regarding their future healthcare. There are some examples below:
- ‘Alice, if you became very sick and couldn’t talk to us anymore, can you tell us whether you would want us to continue treating you to preserve your life as much as possible or have you thought about when enough will be enough for you?’
- ‘Alice, if you couldn’t talk to me anymore, who would you want me to talk to about your healthcare or lifestyle arrangements?’
If Alice has an ACD, you might say:
- ‘Alice, that’s great that you have an ACD. Do you know where it is and can you tell me what it says?’
Remember communication is not just the words you use. If you are initiating an ACP conversation:
- Make sure that you are having this discussion in a suitable place.
- Make sure the patient or resident is comfortably seated and can see and hear you properly.
- Check if they would prefer to have someone with them while having a conversation about planning for the future.
- Inquire as to whether an interpreter or cultural guide will be needed for discussing future planning.
- Check that you both have enough time to talk about ACP.
- Use simple language and avoid jargon and euphemisms.
- Take your time and check that the person understands what you are saying by asking them to repeat in their own words their understanding of what you have said.
- Stay on one topic at a time - make a note of other concerns as they arise and return to them.
- Check to see that you have understood the outcomes of the discussion by paraphrasing and summarising using key points.
- Encourage the person to ask questions throughout and provide them with another opportunity at the end. Often, when you think the conversation has finished, the most important points will be raised as an afterthought.
- Acknowledge and respond to emotions by having tissues available, giving the person time to stop, cry or meditate on a question. Often choices are informed by past experiences and remembering these may cause emotional upset.
- Should a person not wish to engage in ACP, respect their wishes and continue to discuss with them their current medical regimen and needs. It may take a number of prompting conversations before a person is ready to engage in ACP if they choose to engage at all.
- Let them know if you are going to have to find out some information and tell them when you will get back to them.
Older people will most probably wish to have time to discuss ACP matters with their family, GP, or others they trust in their lives. Once they have done so, if you are helping an older person with an ACP or ACD document, make sure that:
- The spelling of the person’s full name is correct.
- Documents are dated.
- Documents are signed by the appropriate persons.
- Sections that are not being used have been crossed out.
- Contact details have been accurately and thoroughly completed.
- Forms have been completed in their entirety by the same person, if possible.
- Forms have been completed legibly.
- If mistakes are made, alterations must be accompanied by initials of the witness and the older person.
Do not add anything to the forms once the forms have been signed. If there are major changes to be made, complete a new form.
If a document has been completed, discuss with the older palliative person who should have access to it. After completion of an ACD, the original documents should be kept with the older person in a place where others can access it.
Suggest to the older person that, with their permission, copies will or should be provided to their:
- Substitute decision maker(s).
- Doctor(s).
- Hospital(s) they would most likely attend if they became ill.
- Other family or friends they may wish to be involved or to support others with decision-making.
The older person may want to lodge the document with a lawyer or solicitor as it is often associated with a Will. If this is the case, then a certified copy should be provided to the lawyer or solicitor, not the original.
It is important to remember that an ACP document should be reviewed if the person’s situation changes. This may also necessitate changing any completed ACDs. If a document is updated or changed, check who needs to be advised about the changes or who should get the revised copy.
Page updated 05 December 2023