Planning is so important to living well with an illness and approaching death.
However, if the plans are not communicated there can be a risk of:
- fear and upset , while alive or after death
- shock if someone has made assumptions about aspects of medical care (for example) with which are incorrect
The aim of conversations may be:
- very specific, to pass on information,
- or more about emotional support and enjoyment, either immediately or at some time in the future after death.
A conversation can help:
- to live with illness well
- to die well
- to make sure your wishes for care, support and medical instructions are known
- to build a bank of emotional memories
- to communicate the administrative practicalities, such as where documents are kept and what’s in them
Thinking through what you want to say, and how you might be heard, beforehand can improve the outcome from the conversation.
You may be really clear who it would be good to talk with first, or it may be worth thinking through who could be involved, who you would like involved, and how.
Distance, skills, personality and relationship may all play a part in your decisions. You may want to talk first with someone who could help you decide how and when to talk with others. Some people prefer to start talking to someone they trust but are less emotionally close with, before starting a conversation with those closest to you. Perhaps you’d value people playing different roles now, later on and after you die. There might be someone you haven’t seen for a while.
You may notice that the people you know can be loosely grouped:
Those whom hold you close
These people may have expectations that need to be addressed, for example, if you live closer to one relative. If you can state your preference clearly, the potential for upset and misunderstandings later is much reduced. If these conversations are handled well, these people know they are valued, know who and why others are more involved and will be more inclined to support your wishes when the time comes.
It is important that you discuss all the issues you can about how you would like the end of your life to be managed. Let them know how you wish to be cared for, where you want that care to take place, your funeral arrangements and how your affairs are to be managed. Even if one of your family is appointed an attorney or executor be open and talk to other members of your family. It may save squabbles and differences after you die.
By talking to your family, you give them strength to cope with what is often a difficult family time. Sometimes, close family and friends are the people who find it most difficult to talk. The thought of letting go of a parent, a spouse, a partner, a child is more than daunting. This needs love, patience and understanding.
Those whom you hold close and would wish to be around towards the end of your life
These people may or may not have an “official” appointed role as above. They could be family or friends or professionals. The more these people know of your wishes, the more they can help to ensure they are met e.g. whether to take you to hospital. These can be emotional conversations and rewarding for the other to understand their significance to you.
Professionals – most likely solicitors and doctors
These conversations tend to relate to information you need from them, what you want to tell them or instructions that you want them to act on. These conversations are often lead or guided by the professional and so can be less emotionally charged, more factual, than other conversations.
Appointees – executors, guardians, or attorneys
In this situation when you approach friends or family that you want to act for you in an official way it is useful to be clear about what you are asking for, and to give them time to think about their response. Having a back-up plan if your first choice refuses can also make the conversation easier and allow them to feel they have a genuine choice over whether to accept or decline. Once an agreement has been made, there will be information you need to share so that the other can respond as and when the time arises.
As you feel it is right. Whenever you can. When you are able and have the right people to listen and can have a discussion. Many such discussions take place over a period of time, and are an ongoing conversation.
For example, you may need to ask people if they will act on your behalf, and give them time to think about their response, and discuss more details later. Alternatively, you may just want to convey information or arrangements that you have made, for example that you have signed up for organ donation.
Being born and dying are multigenerational events. Talk about those you know who have died and what may have happened at the end of their lives – this might include parents and grandparents, friends and other family members. Talk about those who have influenced you, family trees and family history. This give you and those you love – children and adults of all ages – a perspective about the finiteness of life, yours and their place in the ongoing cycle of human life, how people can remain in memories and so live on and are important, not just snuffed out and forgotten.
This, hopefully, is a long term investment that prepares them and yourself, for the challenges when a life close to them comes and goes. Talking about the cycle of living and generations helps to kick start conversations about life generally and be an introduction to saying what you might like toward and at the end of your life.
You may wish to introduce the subject directly and explain what you want to discuss, why it is important and what you want from the conversation. Alternatively, you may want to look out for cues (for example: news articles, TV shows, books and films, family occasions, experiences of others, financial matters). Some people find it impossible to talk about end of life issues and in this case you may need to find other people that you can to talk to.
Children, even though grown up, sometimes find it difficult to conceive of a world where there parents are no longer present. This needs sensitivity and a great deal of loving patience. Sometimes the opposite occurs when a parent or adult does not want to be a burden to others and in ignoring the issues hope that fate or some such will resolve the issues but often leave a lot of hurt behind.
How you approach the discussion depends on the relationship you have with each other. As well as thinking about what you want, it may help to consider how they might react and your possible responses. Also consider those people who may feel they should be involved (whether or not you wish them to be) and how best to communicate with them and when.