Introduction
Palliative care and counseling is a vital task in Multi professional approach of treatment in life threatening illness.
The very delicate issue of losing the child and no available allopathic treatment is a very difficult decision for the family to accept.
Case Summary with personality traits of children
The P family constituted of 2 daughters and 2 sons.
Three children in their adolescence suffered from Xeroderma pigmentosa, a genetic disorder associated with cancer.
Children school drop outs, as concerned about physical appearance and peers acceptance.
The unaffected eldest sister a smart postgraduate, who understood sibling’s disease, but felt helpless whilst dealing with them.
S, 19/F the least affected daughter has mild pigmentation on face and hands with no skin lesions. She is sensitive to sunlight and has adjusted well by making lifestyle changes and doing housework and tailoring which she finds therapeutic in the stressful family environment.
J, 17/M our regular member of the clinic suffered a slow growing disease due to the positive regard he feels with us and the relief he experiences from the depressing environment in his home. He is optimistic and keen on life, and as he is fond of cricket and roaming with friends he often requests for skins/ointments/etc.
As a team we are attempting to initiate a small independent income generating activity for him.
S, 14/M a severe case of the same condition, physically affected and emotionally scarred expired a few months ago, causing a scare in the family.
He was a loving, caring child especially attached to his mother, scared of his father and kept away from strangers; he was fond of drawing and cleaning the house. The mental stress caused sleeplessness, crying spells and temper tantrums on smallest of issues.
About the parents
Mr. P father suffered intense turmoil, since he loves them but unable to accept illness and reacts with anger questioning “Why me? Why Has God given me these ugly children?”
He is unable to accept the scientific explanation and believes in black magic done on his family. Added stressors include loss of job and anger towards his wife since he did not want any children after his second daughter S.
Mrs. P mother and sole primary care giver is a disillusioned and highly distressed woman; she feels responsible for the family’s plight since was keen on a healthy male child and therefore insisted on having children against the husband’s wishes. She feels helpless and often cries in front of the children. The husband’s reaction of anger, hostility and avoidance in all areas of the house including children’s treatment and expenses is of great concern to her. In her despair, she has even attempted to end her life on one occasion.
Family Concerns and Trauma
The family concerns can be summarized under:
1. Childrens future:
The future of the unaffected daughter, since she is not getting any marriage proposals
Their independence, if they survive
Who will care for them after her demise?
2. Social issues:
Curiosity and fear of friends and relatives regarding the children’s condition
Social isolation and withdrawal
Depression, confusion, hopelessness and guilt continuously haunt the family, especially after the death of the youngest son S.
Role of Palliative Care team
The case is a challenging one due to the enormity of problems from different fronts. The main methods used were
Counseling:
For the Mother with the purpose of venting, expressiona of feeling, focus on self, identifying needs and generating options to resolve those needs
For the father with the purpose of facilitating acceptance, and healthy expression of feeling, and generating employment options.
For the children to help them cope, express themselves and develop a positive self image; also addressing certain needs such as providing a television set
As a family with the purpose of improving relationships and cohesiveness with a constructive expression of emotions; also to prioritize needs and therefore utilize existing resources most effectively
Home care services extended to assist in care and support in times of need.
Issues for Discussion
Other possible areas and means of intervention y the team, with specific focus on coping strategies, grief reactions keeping in mind the nature of the illness and extent of its effect on this family.
Issues in genetic cancers that require exploration