What to expect with a life-limiting illness 

As your illness progresses there will be changes. This will include changes in your treatment and care. Your quality of life may be affected. The goal of palliative care is to provide comfort. It also helps to maintain the highest possible quality of life. 

Quality of life

The term ‘quality of life’ is used a lot. It will mean different things to different people. Quality of life often includes:

  • being comfortable and pain free
  • being able to socialise or spend time with loved ones
  • having as much independence as possible
  • not feeling you are a burden
  • feeling emotionally well.

You need to be included in decisions about treatment and care. These can affect quality of life. Sometimes for example, the side effects of a treatment can make you very unwell. You may feel that having these treatments is worse than not having the treatment at all. It may be more important for you to focus on your quality of life.

Planning and changes

Life-limiting illness brings many changes. Learning what is likely to happen and how things could change may help you cope with this. It may help you to make important decisions. For example, would you like to keep working? Is this the right time to take a special trip or make contact with people in your life who are important?

Having information will be helpful to you. You may want to do some reading and think about things. You may want to discuss things / issues with your carer and other family members. You should seek the type and amount of information to make you feel comfortable. Health professionals can provide information on local resources and expected changes. The CareSearch booklet for Patients, carers and families can help you get started.


CareSearch Palliative Care Booklet for Patients, Carers and Families

Recognising changes

Changes may occur in all aspects of your life. Physical changes may have to be managed. You may have pain and other symptoms like tiredness or loss of appetite. You may also have to deal with changing feelings and emotions. You may feel overwhelmed. It could also mean that you have to adjust to gradual losses, for instance your mobility or independence.

Two people with the same disease will not always have the same treatment. They will also not respond in the same way to the disease or treatment. A disease may progress slowly or more quickly. The changes or deterioration associated with your disease could begin gradually. They might start more suddenly. 

This means the course of your illness may be uncertain, but talking with your GP or other health professionals can help. The University of Edinburgh SPICT4ALL is a simple tool for everyone including family carers to recognise signs that a person's overall health may be declining. 

CareSearch Interactive SPICT4ALL form (307kb pdf)

Course of Illness

'Illness trajectory' or 'course of illness' are phrases that are sometimes used in medicine. They look at time of diagnosis to the time of death. They describe what will usually happen.

It is not what will always happen. For some people the time from diagnosis to death is very short. This can occasionally be a matter of weeks. For others, symptoms will slowly become worse over months, even years.

Pathways

Sometimes with treatment, the progress of your illness will fluctuate. This is often true of cancer. For example, cancer treatments may shrink your tumour. You may then feel well for a while, but your symptoms may return. You may have another cycle of being unwell and more treatment until you are stable again.

Understanding the path or pattern of your illness can help you make important decisions. It may be about your job or any legal matters. It may help with emotional or spiritual issues. You may also want to discuss advance care planning.

Prognosis

You need to understand your illness and your prognosis. This is whether your disease can be cured or only stabilised for periods. You should also be told the goal of any treatment. For example, whether it is to slow progress of your disease, to treat a symptom or help improve your quality of life.

You may want to know exactly what your prognosis is. This is not easy to answer. You are an individual. You will respond differently to a disease or to a treatment than someone else. Doctors will give you an idea based on their experience. They will know what usually happens. An accurate prognosis is not always possible. If the prognosis given is not correct, it can be distressing for you and your family.

Last updated 02 August 2021