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Personal Experience

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She did not have time to grow old.

Silvia Grisová
Language: English
Country: Slovakia
Typology: health care professionals
Marieta is 58 years old. Not long time ago she was working in an international company as a translator. She lives with her husband and their 22 year old daughter who studies. She has three other older children, two sons and a daughter. They all have their own families and work. For a few months Marieta suffered of worse digestion and strange feeling of overcrowding in the abdomen even though she never used to eat a lot. Suddenly one day she became yellow. The ultrasound examination showed obstructed bile ducts. After an extensive surgery in the abdominal cavity it became clear that multiple metastasizing cancer invaded the whole liver and there are metastases in several other organs. Marieta is after an extensive surgery in her abdominal cavity which was made in order to prevent her immediate death from liver failure. Gradually her canary yellow skin color is disappearing. At the same time she has been dealing for a few days with an idea that her illness could not be treated any more. The last day before the illness appeared Marieta lived her ordinary and very active life. She worked, with her husband played sports regularly, met with their friends. They liked to dance and spent a lot of time with families of their adult children. At her younger son, who is a vet, Marieta has a garden which she enjoys. Marieta visits her older daughter, a psychologist currently on maternity leave, and spends time with her grandchildren. The eldest son is a doctor and lives with his family in a city about 200 km away. The youngest daughter still studies at the university but she has been working as a nurse already beforehand. Marieta’s husband studied biology besides chemistry which he is devoted to. Education and profession focus of the family members suggests that they could have fairly large assumptions to know what is the expected prognoses of Marieta’ s disease in the near future. In a few days after the surgery Marieta can be discharged to home treatment. The surgery wounds still hurt and she is weak. At the same time, she is nervous, anxious and speaks only a little. She answers the nurses snapping and irritated. Her husband and children noticed that as well during their visits. They describe it as a big change in the interviews with her caregivers. Marieta always used to be kind, pleasant and patient. During the administration of medication the nurse offers Marieta an open professional talk on the topic of her new burdensome situation, in which she found herself. Marieta was given an opportunity to express a number of concerns, burdensome thoughts and feelings which she did not want to share with her family because she did not want to cause them pain. The whole time she was trying to protect her family. The nurse recognized the possibility that due to the professional focus of the relatives, all know anyways what is going on and therefore not talking about the situation can be more burdensome than protecting. She pointed out to Marieta that maybe the relatives do not bring up the touchy topics for a similarly good reason. Marieta asked the nurse specific information and prognoses projection directly so she could arrange according to that. The nurse explained that the medical explanation must be left to her attending doctor and she can inform him about her wish. After a conversation with the doctor, Marieta asked the nurse for a talk again. She knew roughly the upcoming period can be the terminal stage of her illness. After interviews with the nurse Marieta decided to talk openly, first to her son who is a doctor, and then also to other family members. The family jointly decided to face the situation. After discharging from the hospital Marieta will go first to her son’s house. After recovering from the surgery she will return home where she lives together with her husband and the youngest daughter, who is a nurse. The family retold together the care giving plan and when needed some information they repeatedly contact the nurse. For example, how it will be possible to ensure adequate pain relief therapy in home treatment. Marieta was discharged oriented in her situation. She became again kind and patient even she knew she was not dealing with an easy situation. The family bore the burden together. They all decided to enjoy together the leftover time Marieta’s illness gives her. OBJECTIVES: Support the dying patient and her family in her decision to stay at home until her death. Create a space for sharing feelings which she does not want to share with her relatives. Administration and control of adequate pain relief therapy according to the doctor’s orders. Guiding the patient in coping with the deadly illness. MEANS AND STRATEGY: The nurse supports Marieta and her family in planning adequate care strategy adjusted according to Marieta’s wishes and needs. She leads relieving clarifying interviews both with Marieta and her relatives. The nurse also supports Marieta in expressing her needs and wishes. She directs the relatives not to cause Marieta extra burden even if meant well. The nurse helps to create a space for open communication between Marieta and her relatives. She offers various strategies for coping with such situation, in families with a deadly ill person, in which they found themselves for the first time. She provides the family with information about the terminal stage of the illness and the care needed during this time. CONCLUSIONS: Marieta died at home as she had wished. The family, with the support of the nurse, was close to her at all times. She suffered minimal pain only on occasions, she could control the analgetic doses and sedatives according to her needs within the range her doctor allowed so she did not feel helpless. She had time to come to terms with death and leave her family in peace.

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