Many patients and carers have only a limited understanding of what 'the end' means. People differ in what they want to know.
If you have no prior experience and perhaps only scenes from movies as some kind of guide, it would be useful to talk with health professionals and ask any questions that you need answered. You may consider it important to receive explicit information about what to expect. Or it may be that the knowledge you can phone at any time is the reassurance you want.
There are excellent websites to provide you with information about caring at the end. These include:
The last months of life
Improvements in healthcare have had a remarkable impact on the quality of life of patients in the final months and weeks of life. Most people now can continue to walk about, albeit slowly, until their last days. A few will be bed bound for their final weeks.
Patients, with the assistance of a wheelchair or a walking frame, may wish to join in social events - even attending family gatherings and a sporting game or a concert. Health care professionals encourage this participation and often go to substantial lengths to provide help to families.
The last weeks of life
During this time, health professionals are likely to visit more frequently to help ensure the patient is comfortable. Your general practitioner (GP) can help with assistance for pain and other symptoms. A palliative care team may also be involved.
Patients not only want to be pain free but also value maintaining clarity, that is being able to talk with those around them, even when lapsing into short or longer periods of sleep or semi-consciousness.
If you are not used to serious illness you may feel frightened thinking your loved one is about to die at any moment. Talk with your nurses who are very experienced and can help you understand what stage has been reached.
If you keep close contact with the nursing team you are less likely to feel alone. This contact also provides a more helpful backup than an unplanned ambulance call and an admission to hospital through the Emergency Department.
What is helpful?
At some point you may wish for further information what happens physically as death approaches. There are common signs and symptoms that are the changes that happen to the body that people will go through to one extent or another.
The Carers Association of NSW has a summary of the physical changes that happen as death approaches. The Canadian Virtual Hospice has a section on When death is near.
It can be reassuring to talk to your doctor about any things that concern or worry you.
If you have someone within your social support network who has experienced a terminal illness you may find it helpful to talk with them. You may want someone who is experienced, or someone who provides special emotional support, to be with you. If they live in another city or region and offer to come, accept gracefully.
This page was created on 26 March 2007 and is due for review in March 2009