An important thing you can do for someone at the end of their life is to help them make plans for their final days and weeks as well as for after they have died. Although it can be very difficult for you both to discuss some of these topics, having plans in place will take away some of the burden from you of having to make decisions on their behalf at a very difficult time. It will also ensure that your friend or relative’s wishes are respected and that they have a better experience in their final days. You may even both end up finding it cathartic to talk about these things.
It is important to have these conversations sooner rather than later, in case their condition deteriorates quicker than you were expecting and they become unable to take part in these discussions.
It is a good idea to work with your friend or relative and their medical team to create an ‘end of life care plan’ also known as an ‘advance care plan’. This covers how their needs will be met as they reach the end of their life, including controlling their symptoms through treatment, managing their pain and providing them with emotional, spiritual and social support. It will allow them to die in the way that they want, meaning that it will be tailored to them and prioritise the things that are most important to them. The plan should be shared with you and any other people who help with their care.
As part of making their ‘end of life care plan’, you should discuss with your friend or relative where they wish to spend their final weeks, days and hours and who they would like to care for them. This could be at home, in a care home, hospice or hospital, or a combination of these options. Whichever they choose, they are entitled to receive high-quality care.
As part of this planning, you could use what is known as the ReSPECT process. This stands for Recommended Summary Plan for Emergency Care and Treatment and is a document where your friend or relative records their wishes. Their medical team can then use this document to guide their future treatment decisions.
Also, if there are any treatments they would want to refuse, then they should put in place something called an advance decision, also known as an advance decision to refuse treatment (ADRT) or a living will. This documents exactly what treatments they would want to refuse, for instance life-sustaining treatments like ventilation, CPR and antibiotics, and under what circumstances they would refuse them. You may want to involve their medical team in these discussions too, so that they can answer any questions your friend or relative may have about what their options are. The advance decision must be in writing and they must sign it, as well as having it signed by a witness. It might help to use this advance decision form provided by the charity Compassion in Dying. Bear in mind that this document is legally-binding and will trump any decisions you might want to make on their behalf.
Alongside their future care, you may also want to discuss arrangements for their funeral with them. Some things you may want to talk to them about include whether they want to be buried or cremated, and where they would like their final resting place to be. You could ask if there are any special clothes they want to be dressed in, any particular songs or pieces of music they want to have played, or any prayers or poems they want to be read. You could ask who they want to be invited, and if there is anyone in particular they want to make a speech, do a reading or carry their coffin.
Another thing to discuss with them is if they have any spiritual requests for when they are dying or for their funeral. You may think you have a good idea of their views on religious matters, but you might be surprised as facing death can alter these for some people. It can help to ask if they want any particular practice or rituals, if they want the input of a religious leader or if there any prayers or readings they would like for when they are dying or at their funeral.
If they find it too difficult to talk to you about these things, then you could suggest they write it down instead. If they simply cannot face it at all, then it could still help if you talk to them more generally about their values and beliefs, so that you are better placed to make these decisions on their behalf if you have to.