PALLIATIVE CARE JOURNEY
Diagnosis and Prognosis
Receiving the news that you have a life limiting illness can be devastating. You may be learning about a disease that is completely unknown to you or one where you may have known someone else with that disease in the past. Diagnosis means that the clinical team to whom you have been referred have identified the cause of your illness. Diagnosis is a time of great change for you. The diagnosis of a life-limiting illness can signify a point in your life where two worlds collide; the world before your illness was diagnosed and your world now following your diagnosis and the beginning of treatment and care. Diagnosis is also a time for discussions with your clinical team and your family about options and choices that you may wish to make!
Confusion and anxiety are quite normal at this time and you may experience a range of feelings, such as, shock, denial, anger, guilt and helplessness. You can feel totally alone and isolated from your family and friends. All of these feelings are often heightened by fears of how you will manage in the future and what if treatment is unsuccessful.
How you and your family deal with the news is completely unique to you. It is important that whoever is giving you this news takes time to ensure that you and your family understand what your condition means and its implications for the future. When dealing with the shock of hearing a diagnosis it can be difficult to process information. It can be helpful to write things down and it is important that you and your family are not be afraid to ask questions. Understanding what is happening and what support is available to you will help you come to terms with the changes to your life and plan for the future.
In general, health care professionals are aware of the challenges (practical and emotional aspects) and pressures (financial and levels of support) that you and your family may face. It is important for health professionals working with you to respect your individual needs. It is also important that you share your concerns with your health professionals so they can help you to plan your care appropriately. Dealing with a diagnosis can also be difficult for family members and friends. They can be unsure of what to say and may feel uncomfortable because they do not know what to do. People will want to help you (not cause upset) but may not know how.
The word prognosis refers to the predicted length of time from your diagnosis to the probable outcome of death due to your life-limiting illness. Much of the widely-available information on survival and prognosis is generated from research studies of large groups of patients. The figures quoted are usually averages and may not be directly applicable to your case. Medical knowledge and understanding of the factors which affect prognosis is incomplete. However, for most conditions, there are certain factors known to be associated with a longer or shorter prognosis. There are also some characteristics common to all life-limiting conditions which might suggest that time is short.
If you wish for information regarding your prognosis, your doctor will consider these factors when estimating how much time you might have left. It is generally not possible to make a precise prediction, in terms of exact numbers of years, months or weeks. The information they give you is an estimate and should serve as a guide.
You may also wish to know how your disease might affect you in the future. This might help you to plan ahead and enable you to make choices about how and where you would like to be cared for and to discuss this with those close to you. Learning to live with a life-limiting condition is a process and you may find yourself having to adjust to the demands of your illness. It is important for you to try and maintain your sense of control. Health professionals talk about ‘living with’ your illness. This is because the emphasis of your care is on living and not dying.
Another important issue to remember is that every case is unique and no two cases are the same. Even if someone you know had a very short prognosis from the same life-limiting illness that you now have, you may be completely different. The overall goal is to help you and your family to have the physical, emotional and mental strength to carry on with daily life and to ensure the best quality of life for both you and your family
Written by Professor Philip J Larkin, 2014
This part of the website contains links to useful downloads which provide very broad information and advice about palliative care.
Condition Specific Help
Here you will find a number of useful links to organisations who deal with a specific illness such as Cancer or Heart Defects in the Republic of Ireland and Northern Ireland. We also provides links to international organisations who will help further your understanding of a illness. There is also a section for undiagnosed illnesses and links to services that work in this area.
Links to organisations that work in palliative care
Here you will find a number of useful links to organisations that work very generally in palliative care. These services include support services, to care services to bereavement services.