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“It is painful that you are not able to speak, use your hands, do whatever you want, and make yourself understood. As a family member of Cheng, we want to improve her life quality. Through language, she can express more complicated feelings and even argue with others.＂- A family member of a patient with multiple system atrophy
“At least Mom was able to make decisions for herself and left the world in the way chosen by herself.”– A family member of a patient using palliative care
According to WHO’s definition, “palliative care” refers the medical approach that improves the quality of life of patients who are facing challenges associated with life-threatening illness or are at the end of their life, which includes the control of pain to reduce the discomfort experienced by the patient, and addressing the psychological and social needs of the patients and their families. When medical technology is not able to save the patients’ life anymore, palliative care is an approach that respects life at its last stage and enables the patients to make the last decisions for themselves.
OTHER THAN PHYSICAL NEEDS, WE WANT TO LISTEN TO MOM’S HEART
Mama Cheng started to suffer from multiple system atrophy at the age of 51. Although her family members were engaged in the medical related industry, they still could not help her as her medical condition worsened and her body gradually stiffened.
Mama Cheng’s son found SENSE Innovation on a medical fair. In the beginning, Mama Cheng used 1246 doctor-patient communication software to find out her physical discomfort. She also had a masseuse to help relieve her muscle. “There was a time that Mom’s right leg was numb for several days, when the masseuse finally found the discomfort point, Mom cried as the masseuse pressed on her tense muscle.” Eye tracking lessons instructor Mandy said, “The most unbearable discomforts usually come from water stuck in your ear, itchy or numb body parts. But others cannot know that from the appearance, so the patients must use the software to communicate their needs.”
Mama Cheng’s eye muscles became weaker as her medical conditions worsened. At one point she could not even take eye tracking lessons. But two weeks later, her family decided to continue her eye tracking lessons in order to know what would make her happy. In the fourth lesson, Mama Cheng created a personal facebook account. She also made a Christmas card for her new born granddaughter. When the house helper was leaving, she even used Indonesian to express her gratitude to her. Mama Cheng was finally able to communicate with others. She could even expressed what flavor of soup she wanted to have. “I have not seen Mom being so happy for such a long time,” her son said. “Thank you Instructor for helping us understand what Mom was thinking.”
The last decision of life
When SENSE Team first visited Mama Cheng, she was in ICU because of a stroke and a tracheostomy surgery. The doctor announced that she didn’t have much time left, approximately one month.
Mama Cheng did not know Zhuyin. It was difficult for her to type. Through 1246 Doctor Patient Communication, her daughter asked her preferred varieties of flowers, the color of the mourning hall, and the clothes she wants to wear on her funeral. Mom also told her that she wanted to go back to her home in Taitung. Even though the eye signals were weak, Mom still made effort to choose a cheongsam for herself and a purple mourning hall. In fact, Mama Cheng had come back to Taitung before. But her daughter wanted to do something special for her and let Mom made her own decisions at the end of her life.