Case
A patient aged 97-year-old man living with his eldest daughter and her family used to regularly visit a general hospital for hypertension and chronic kidney disease. In January 2016, he developed urinary incontinence, frequent urination, and constipation, which he had never experienced before, and visited the emergency department of the general hospital. He was treated with sennoside tablet 12mg for constipation, however, his symptoms did not ease until three days after administrating medicine. So, at the request of his elder daughter, the attending physician visited the patient and prescribed two tablets of magnesium oxide 330mg in morning and evening to control defecation. While patients experienced relief from constipation and urinary incontinence, his urinary frequency was even prolonged. As blood test showed a high prostate specific antigen (PSA) level of 139.0 ng/mL, the patient and his eldest daughter were informed about the possibility of prostate cancer. Considering the patient’s age, he and his eldest daughter denied to undergo a thorough examination and choose to monitor the patient’s condition with regular blood tests. In addition, the patient began using home care nursing facilities to follow up with his families and to prevent his Activities of Daily Living (ADL) from deteriorating.
With the help of his eldest daughter, he started keeping records of his urination frequency and defecation status and managed to take care of his health. He used to express gratitude to his eldest daughter who was his primary caregiver. However, sometimes he expressed a rather entitled attitude, commenting “it is expected for children to take care of their parents”. Furthermore, he denied using day-care or short stay services, despite multiple recommendations from his daughter, doctors, and support specialists. His ADL began to decline prominently, and the frequency of urinary incontinence was increased. As the daughter was forced to deal with the patient’s urination, she was tried over time and had difficulty accepting changes in her father’s condition caused by senility. In January 2019, we received an emergency call explaining that the patient suddenly experienced strong back pain and was unconscious. When the doctor visited the patient’s residence, he regained his conscious back. The patient and family members were explained about the possibility of a sudden change in his condition, but the patient assured the doctor that there was no need for him to go to the hospital. Although the family wanted to fulfill the patient’s desire, they were worried about continuing the medical treatment at home and were particularly concerned about managing such emergencies.
His daughter felt strongly that she needed to care for him, which made it difficult for her to balance household chores and caregiving. So, with approval from the patient, they started using day-care and short-stay services from February 2019. There were some instances where the daughter also had difficulty accepting the fact that her father was aging with cognitive and physical decline, so she ended up reprimanding him for his behavior. Furthermore, she was worried as he refused to get admission to the hospital even in the emergency. To come up with the best possible solution, the home care team, which consisted of medical staff and care managers, discussed with the patient and his family about his future medical treatment plan. However, as the patient was adamant about his desire to continue home treatment, it was difficult to come up with a final solution that could address the desire of patient and at the same time reduce the burden of care on his family.
In June 2020, we received an emergency call with the complaint of a fever of 37.8℃ and increase of sputum production after sobbing at breakfast. At the time of the visit, his physical examination were temperature 38.2℃, blood pressure 162/93 mmHg, pulse 90 /min, a saturation of percutaneous oxygen 89% at room air, respiration rate 26 /min and also the presence of lung murmur. So, aspiration pneumonia was suspected. If physicians had to follow the patient’s wishes at that stage, medical staff would have considered introducing home oxygen and daily antibiotic infusion by home care nurses to treat him at home. However, considering the family’s mental state and their inability to care for a patient at home, physicians made a comprehensive judgment to take the patient to the hospital for emergency care. After that, he was transferred to a recovery hospital for rehabilitation. About a month later, the family informed that he had been admitted to a nursing home affiliated with the hospital and there was no further need for a home visit.