Annals of Long Term Care

Stroke patients are the largest patient population receiving long-term care, and their number is steadily increasing worldwide. Management of the care for these patients in their own homes could contribute to substantial Medicare savings. It seems necessary to investigate the various aspects of long-term care provided by the patients’ families, especially doctor-family cooperation.

The objective of this case report is to describe how doctor-family cooperation in long-term care for a patient with hemorrhagic stroke can deal with medical complications in accord with bioethical principles, and to discuss how the family can cope with various burdens in their efforts to accomplish worthwhile quality of life. Data were analyzed from medical reports and nursing care documentation collected over a period of ten years. Findings showed that long-term care of the stroke patient in his/her own home can deal with various complications and burdens, as long as concerted efforts by doctors, family, and paid caregivers aim at achieving worthwhile quality of life.

Feasibility of long-term home care for stroke patients should be evaluated on the basis of the family's attitude towards care burden, the possibility of close cooperation with the family doctor, and the availability of competent caregivers.

The Case
Despite the advanced age of 84 years, the patient received only minor medical treatment due to a descensus uteri and a gonarthrosis prior to suffering a stroke. Subsequent to the stroke on November 23, 1996, her health condition was substantially altered as a consequence of a hematoma measuring 30 x 50 mm in the left temporoparietal region that was found on computed tomography scan 5 hours after the first appearance of symptoms, indicating a stroke.

The intracerebral hemorrhage with ventricle rupture caused a right-sided paralysis, dysphagia, dyspraxia, and aphasia, apparently due to damage of Wernicke's area. Despite the breakdown of verbal language, the patient attempted to speak on frequent occasions but recognized her inability and used mainly her eyes and facial gestures to communicate joy, surprise, anger, disappointment, and grief. The most prominent medical complications that had to be cared for in a continuous fashion during the ten-year care period were: intragastric feeding through a percutaneous endoscopic gastrostomy (PEG) tube, due to dislodgement of the tube and infections of the puncture site; epileptic seizures, due to inadequate anticonvulsant medication; and a permanent urethral catheter, due to intensification of care time.

Long-Term Enteral Tube Feeding
Owing to the dysphagia, the patient's life could be sustained only through intragastric feeding, first by means of a nasogastric tube, shortly thereafter through a PEG tube. The family consented to the implantation of this life-sustaining device because the treating hospital internist considered it the only possibility to assure adequate nutrition. It was applied during the last week of the hospital stay in March 1997 and was reimplanted twice after excorporation in the course of the following two years.

When the third gastric tube was dislocated in 1999, the attempts to reimplant it without gastrostomy were unsuccessful so the family suggested to the head of the gastroscopic unit to intensify swallowing training at home, and in bilateral agreement the decision was made to leave the patient without a tube on a trial basis as long as she continued to take food and fluids perorally. Peroral nutritional intake was possible for almost two years until the end of January 2001, when the dysphagia exacerbated again. As it was uncertain whether the patient would regain swallowing ability, a new gastric tube, the fourth one, was implanted in February 2001. Contrary to the previously implanted gastric tubes, this one had a silicone disc attaching to the inner gastric wall, so that dislocation could be prevented more efficiently.