The patients family

‘The father came back from the funeral rites.
his boy of seven stood at the window, with his eyes wide open and a golden amulet hanging from his neck, full of thoughts too difficult for his age.
his father took him and the boy asked him:

‘where is mother?’
‘in heaven’ answered his father, pointing to the sky.

the boy raised his eyes to the sky and long gazed in the silence. His bewildered mind sent abroad into the night the question: ‘where is heaven?’
no answer came: and the stars seemed like the burning tears of that ignorant darkness.
Tagore, The Fugitive, Part 2 XXI

How do we manage the expectations of family members for palliative patients when they are unrealistic or unattainable? We can’t deliver patient centre or meaningful care if we don’t include the family. They play a significant role during the time of illness and they reactions will contribute a lot to patients response to illness. We as palliative nurses need to remember we have walked into this persons life at their most vulnerable. We receive a snap shot of a complex family and can’t undo years of complicated relationships and fraught dynamics but can only manage what we see and act sensitively.
How can the patients illness change the relationship between a patient and their spouse? Loss of intimacy and A new way of showing affection to one another due to pain or fatigue. Spouses can often feel threatened by the loss of security and the end of their dependence on their spouse. They have to take on more chores then they usually did before. Adjustments to life schedules happen.
the dying patients problems come to an end eventually and they coordinate how they want their death to happen. Family members can often struggle to comes to terms with this and might want different things, if a patient accepts their mortality before their spouse or family members this can be frustrating and cause family members to feel powerless and no sense of control in this situation which can often come out as anger.

family members can go through different stages of adjustments similar to the ones described for our patients. At first they can not believe it is true. family members often ‘bargain’ with other healthcare professionals to find someone who will give them hopeful information or agree with them in the fact the diagnoses is incorrect. ‘This cant be happening’

family members may arrange expensive private clinics, specialists and faith healers. Only gradually can they face up to the reality which will change their life so drastically. If they are able to share their common concerns, they can take care of important matters early and they are under less pressure of time and emotions.
Just as a patient goes through a stage of anger. The immediate family will experience the same emotional reaction.