Byng-Hall (1985, 1988) introduced the idea of "family scripts" to describe how family members seemed to repeat patterns of behaviour or scenarios when similar contexts are experienced. He suggested that they act as if they are following a script. The importance of these family scripts means that they can be passed down through generations. This concept can be very helpful when we are trying to understand the behaviour of a family by integration of knowledge from a genogram. One example would be where a family member kills herself whilst suffering from post-natal depression. This creates great anxiety whenever a family member is pregnant and induces a range of protective behaviours leading to a family script around pregnancy which can be passed on through generations unless family members talk about their fears and try to work out different strategies. This idea of families us ing models from the past to approach current problems is very common in family therapy. One helpful strategy is to help families find new models.
Creation of rituals is more frequently used in bereavement work but it can also be useful in introducing new ways of approaching difficulties. Some family therapists have noted the lack of rituals in families facing loss (Imber-Black 1988). However, this is not always the case, as the following examples illustrate. One family, for example, always organised to spend an evening together having a take-away meal and a video the week after the mother's chemotherapy. In this way they felt they were celebrating the passing of another treatment.
When Janet's only daughter died suddenly, the problem for her was that she was plunged into echoes from her past. As the first Christmas after her daughter's death approached, her young son and husband desperately wanted to talk about what they were going to do. Janet was locked in her own grief. The family agreed to meet with a therapist. In the session Janet revealed for the first time that she had had an older sister who had died suddenly when Janet was 8 years old. Janet remembers her family being devastated and she called it growing up in the house of death. Her parents never talked about what had happened but took Janet to her sister's grave each week. Her adolescence was lonely and Janet retreated into her books. After university she never returned home to live but married after gaining her degree. Thereafter she did not visit her sister's grave anymore. Janet's husband and son were determined to talk about things and encouraged her to find together her sisters grave. The family visited the grave and from then on gained comfort from the belief that the two girls were in heaven playing together. Although things were very hard the family was determined not to repeat the script of Janets family, but to talk about their own painful feelings related to loss and grief.
6.10 Tasks and Adjustments for Families with a Terminally Ill Member
It has already been noted that the patient's journey and that of the family is different. The patient has to cope with issues such as pain, fear and increasing dependence. It may be the first time he has been ill, been hospitalised or had an operation. The family members are fearful too but desperately want things to get back to normal. Generally, patients and families treat the first diagnosis as an event that they determine will not change their lives; however, if the disease returns, as with some cancers, they then find it increasingly difficult to maintain this view and this way of functioning. For example, a husband with a sick wife may have to continue working and at the same time to care for his wife and children. Some may have never done this before. Single parents who are ill may have to contact former partners to negotiate long-term child care. All family members face huge uncertainty and often crippling anxiety (Christ 2000), which is new and also puts great strain on family life, making it impossible to continue with life as before.
Increasingly families are reconstituted. The parents may have had several marriages and children live with step-parents. In one family where the mother was very sick the children were told they could not tell their father, who had since remarried. This cut them off from an important source of support. Alliances are complex and old hurts often surface in a time of heightened anxiety. Some elderly patients have lost touch with important relatives because of disputes they cannot even recall. Talking about issues like this can be very rewarding, especially if grandchildren are found and lost sons and daughters are reconciled.
Another major challenge for the family is when the ill person either withdraws or reacts with denial of the illness. Sometimes it is only a matter of time, but for others it can be a major problem.
A young man who had been given a terminal diagnosis refused to accept it. He spent hours on long bike rides with his children. In order to cope with the pain of separation from his family, he withdrew emotionally. As he got weaker he still dragged himself about the house and refused to talk about his illness with his wife and would only accept minimal pain relief. He did eventually let his family have some support and it became clear that his behaviour was linked to the "silent" death of his own father when he was 7 years old. Sadly he died without being able to say goodbye to his own children thus repeating the pattern of the past.
A common family issue, particularly when it is an elderly relative who is ill, is "protection". Doctors are often asked not to tell the elderly patient that they are dying so as to spare the patient distress. Should the professionals insist that this should be tackled?
Most healthcare professionals point out that access to services for the seriously ill and dying means those patients have a right to be told the truth about their illness, but some patients then choose to ignore the information.
An elderly man was diagnosed with terminal cancer of the stomach; the surgeon told him he had a tumour but despite this he maintained he had an ulcer. Some family members felt this should be confronted so that he could be involved in planning for his estate. Others felt he would give up if he really faced the truth. In the end, after one family member gently tried to talk to him again about his illness, the family came to the conclusion that this was his way of coping, which had to be respected.
The problem in inviting families to meet professionals is that sometimes the most important member does not attend; it is therefore important to check this out and concentrate on meeting at convenient times for all. Should the ill person attend? Are you meeting at the family home? The family need to be given some idea about what to expect from the meeting. The clinician must have some idea of what the meeting might achieve. One important task is to build up a relationship with the family so that an alliance is created between the family and clinician. Open questions allow the group to explore important questions and to set an agenda. It is important to first ask about the illness and how it affects each member. Family members should be encouraged to listen and support individuals who are particularly vulnerable. The main objective of the family interview is to enhance the family's own capacity to problem solve.
Some of the most useful sessions involve children. The youngest child will often raise something that other family members might not want to be discussed but which can move things on in terms of support and understanding.
One family was visited a few hours before the mother's death. The father and his three children met with the clinician downstairs whilst the mother was upstairs in bed being attended to by the hospice nurse. The atmosphere was very tense and the 4-year-old boy was playing with toy wrestlers. He kept saying that he could not play because a figure was missing. His sisters knew their mother was dying but he did not. The therapist asked the family what they thought he was talking about. His father then said to his children, "We will manage without mummy, it will be hard but we are a family and will help each other" The 4-year-old stopped playing and climbed onto his father's knee. The other children also hugged their father. The clinician suggested that they could all go together to see the mother upstairs. The children brought in their duvets and slept the night on the floor next to their parents.
Their father understood that his very young children, facing the death of their mother, needed reassurance that their needs would be met (Silverman 2000). This example demonstrates the importance of using techniques which allow families to enhance their capacity to cope with the situation.
This kind of conversation and situation is probably one of the hardest episodes that a parent has to face. We need to respect their decision to tell children about an imminent death or not to tell. However, there is evidence that giving children information appropriate for their age and understanding is helpful and one of the most adequate ways of protecting children (Christ 2000). Generally, as with adults, it is best to approach children by asking them what they think is happening. The clinician must have the trust of the parents to conduct such interviews, during which the parental role and position is always validated.
A social worker met with a mother, father and their two children. Their grandmother, who had advanced breast cancer with brain metastases, was also present. The children were 6 and 4 years old and the adults were concerned that they did not know what was happening. The children had some paper and pens and played on the floor whilst the adults talked about the care of the grandmother, who had come to stay with them. The social worker asked the children to draw their house, which they did, but grandmother was drawn lying down. The children were asked why they had drawn the picture in this way and when they explained that they knew she was very ill. They were given a paper with the outline of a body on it and asked to draw where their grandmother was ill. The children used a red pen to mark the body where the breast was but then used a blue pen to draw three small holes in the head explaining that their grandmother had three bits in her head that made her say silly things. The adults were amazed at the accuracy of the observations. These children showed how much they had communicated with each other without the parents being aware of it.
In the two examples explored, all the parents demonstrated that they were child centred and could think and help the children with their problems. Silverman (2000) examines the differing responses of child-centred and parent-centred families and concludes that after bereavement we need to support parents in providing emotional care which encourages continuity and connection. They need to provide an environment that promotes growth and adaptation which is hard to do when there are so many problems to face.
One of the most effective ways of helping families is to encourage them to tackle things one by one. The aim is to build structures and a sense of competence within the family. It is important for people to feel that they have done the best they can. Each family will develop a story of the illness, what caused it, what it meant and what part they played in the care of their loved one. Sometimes one of the most important functions for supporters of families is to validate "their story" and to help them to gain some understanding, mastery and control over their experiences.
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