There are different choices you can make about what happens at the end of life. If you want to be part of this decision making, find out as much information as possible about your situation. You will then be able to make an informed decision.

The document from Palliative Care Australia Asking questions can help is a guide to some of the things you may want to discuss with your palliative care providers. Some of your decisions may already be described in an Advance Directive. You may also want to discuss whether treatments and medications are still helping and whether it is time to stop some treatments. The Healthbanks website has produced an article looking at should I stop life prolonging treatment. 

You can participate in conversations or decisions about your care, treatments, medications and so on. You may want to initiate these conversations and take charge of your situation - saying yes to some things and no to others is always an option. Sometimes it makes things easier if you can write down everything that relates to the decision you need to make. The Ottawa Personal Decision Guide from the Ottowa Health Research Institute is one tool that may help you do this.

Am I close to the end?
As things are changing you may find that new things are happening to you. This may be the appearance of a new symptom or it could be that an existing one is getting worse. It may also mean that you are less able to do the things that you could do before. Knowing what to expect can help you to make plans at the end.

You may want to think about where you want to be cared for. Many people would prefer to be at home for as long as possible until they die. For others this may not be what they want or it may not be possible. Others may want to be cared for in another area, state or country from where they are now. It may also be important for some to have certain people with them when they are ill or dying.

Most people prefer the comfort and familiarity of their own home. However, there are things to consider about being at home such as:

• Do you live alone or with a spouse or family member? 
• Can you access the services and supports you need where you live? 
• Is the physical set up of your house going to be hard to manage if you are feeling very unwell?

Finding the right person to talk to
There will be many people around you at this time. There will be family and friends, as well as the different health professionals who are involved in your care. Sometimes there will be one particular person with whom you develop a bond. This person may be able to talk with you, listen to your concerns and discuss what is happening. However, they may also not feel comfortable in this role, and may only feel able to arrange for someone else to support you. This does not mean that they are not caring, just that having these difficult conversations is something that they are unable to cope with.

There is more helpful information on the CareSearch page feelings and emotions. 

Spirituality and religion
Others, when approaching the end of life will look to formal religion for support. Other people reflect on spirituality and a personal sense of meaning and purpose.

The Handbook for Mortals looks at issues of spirituality, religion and relationships. This information may provide helpful insight, and perhaps food for thought.

Family and friends
Family and friends will want to be with you at this time. Sometimes they can find feelings and emotions overwhelming, and you may also find this is true. You may want to share your feelings, to say the things that need to be said. This may provide relief and a sense of calm.

There are also times when this may not be true. Families do not always get on well together for many reasons. Sometimes there will have been unresolved problems for years, which can impact on feelings and the way people behave. The problems may not change even now, and you or they may not feel able to talk about it. For others though, this can be an opportunity for reconciliation, to resolve some matters, make amends and mend friendships.

Family and perhaps close friends may want to stay with you all the time, especially towards the end. This may be important for them and a source of comfort for you. However, if you are not comfortable with this, try to explain what you want and what you are feeling. Speak with a health care professional if you need help with this.

There may also be others who can't be with you, either because they live too far away or because it's too difficult for them. This doesn't mean that they don't care about you.

What to expect
Some people will want to know what happens to them physically as death approaches. Information on that is provided here. There are common signs and symptoms, that is, the changes that happen to the body, which people will go through to one extent or another.

The Carers Association of NSW has a summary of the physical changes describing the process of dying. It can be reassuring to talk to your doctor or nurse about any things that concern or worry you.

This page was created on 26 March 2007 and is due for review in March 2009