It is indeed a journey from the moment you learn that you are dying until the instant you pass on. Sometimes it is as the Beatles once sang, a long and winding road, other times it is short and bumpy, other times in between and smooth. There is no one way that a prognosis moves from being identified to it being fulfilled. Each person’s path is totally unique.
There are, however, some common stages that we all move through much like a travel itinerary. The exact details may differ yet the day-to-day road map is similar. In palliative care the doctors and nursing staff have identified the following stages that a person can often go through. I thought it worthwhile that you have this information too. Understanding the flow from identifying a terminal illness to death can literally be life saving for those of us saying good-bye.
I have listed the six key stages and noticed the impact each has on the person initially, and secondly on family and friends. It is common that everyone reacts differently to similar news and it is important to recognize these different reactions if we are to take good care of each other.
1) In the Beginning – The Diagnosis
Patient When you first hear the news of a terminal illness there can be many reactions. Common amongst patients are denial, disbelief, a feeling of uncertainty, confusion, and fear.
Family and Friends People will react differently depending on whom they hear the news from. If it is from the ill family member they may not hear the whole story, so there may be confusion and lots of questions. There may be some conflict as each friend or family member may have different beliefs and ideas, and therefore interpret the facts from their own personal perspective.
2) It is for Real
Patient At this stage there may be fatigue as normal activities become tougher to complete. There may be some grief surrounding the loss of some faculties like mobility or perhaps sight. The person may begin to doubt the treatments. Thoughts about death may occur and the individual may begin to feel isolated and lonely.
Family and Friends Family and friends may start to look and sound like cheerleaders as they notice the changes and want to inspire and give hope to their loved one. They might start looking for alternative treatments and they could begin to look towards imminent death. They may also get back to their own life and create some distance between them self and their loved one. This could be the result of avoidance or fear.
3) Shifting to Pain Management
Patient At this point the one dying will likely be losing some more mobility and control of their body. They could be more fatigued, weak, and less active mentally and physically. Your loved one may be more confused and looking towards prayer, hope for a spiritual healing, and sometimes even death just to get some comfort. They may have feelings of shame and guilt for ‘letting’ their loved ones down.
Family and Friends After living with uncertainty for sometime now family and friends may look for other solutions especially as care demands increase. Family and friends often look for ways to find some stability and control in their own lives and their resentment do to high levels of care giving may be building
4) Care Demands Increase
Patient Your loved one now is mostly bed ridden and will need help with personal care. Their appetite and thirst will be lessening. When coupled with increased medications due to more complex health needs you may find them drowsy. The one dying will likely be trying to make meaning of it all and be preparing for death. Their world is shrinking and their energy is diminishing, care must be taken to spread out visits and activity.
Family and Friends At this point you may be wondering how much longer it will go on. Can we continue to do this? You may get so focused on giving care that you forget to take good care of yourself. There may be even more demands of you as visitors come by more often to say their final good-byes.
5) Final Steps
Patient The body and mind will be changing rapidly and these can be profound. They may not eat or drink and may slip into a coma. Your loved one could be restless, even more confused and they not have much mental clarity.
Family and Friends At this point as death nears, family and friends may be going in many directions, some ready for death to come, some holding on for dear life. Feeling such as anger, guilt, sadness, and hopeless could surface. Others may be relieved, thankful and peaceful. It will likely be difficult to communicate with your loved one at this point and simply sitting and holding hands may be the extent of your communications. However, lots of uncertainty will be in the air as family and friends start to let go of giving care.
Patient Your loved one may go quietly and calmly or they may be restless and the death could be dramatic. Either way death comes.
Family and Friends Though it has been a journey and the expected destination has always been death, it may still be a shock when it happens. Panic and fear, relief and peacefulness can all emerge. Some family and friends could withdraw, while others may be expressive. Some folks could leave and others stay closer by. It is usually a time for family to stay close together.