Research has shown there are real advantages to having conversations about end of life care with your family, friends and carers.

For yourself

There is the psychological benefit of sharing concerns and then feeling more able to cope with the problems of end of life, making those burdens lighter. You are more likely to have your wishes carried out as to where you die and receiving the treatment that you want and is appropriate to your wishes. Very importantly, it gives you a sense of control and being in charge. And the most important of all, once done, you can get on with living life to the fullest and in the present.

For your family

Most families want you to have what you would like in the way of treatment, care and funeral arrangements. If you have not had the conversation then they may only be guessing. They will feel less anxious if they know they are trying to do what you wished.

There is evidence to show that families that have talked together cope with the subsequent grief better and move on to a more normal life sooner. Spouses and partners suffer less associated physical ailments and ill health if they have talked.

Your carers

Providing care can be difficult, both physically and psychologically challenging. Talking with you carers, sharing mutual concerns,
has been shown to reduce burnout in them so making it easier for them to continue without unnecessary stress and less likely that you will be able to stay where you want to be.

Medical and nursing staff

If they know your wishes they are much more likely to provide the treatment you want and not inappropriate care. If you are in hospital when you do not need or want to be then this saves considerable resources that can be used for others.

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) which are incorrect

The aim of conversations may be:

  • very specific, to pass on information
  • 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 & 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.

People you know can be loosely grouped:

Those whom hold you close

These people may have expectations that need to be addressed, for example, you might choose to live closer to one of your children than the others.  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.  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 to your children about their grandparents and what may have happened to them at the end of their lives.

Talk about family trees and family history. This gives yourself, the children and grandchildren 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.