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. This tube caused frequent complications due to infectious processes and required intensified care of the stoma and the puncture site, but remained in place without disintegration or dislocation for five years and 11 months, until the patient's death in December 2006. The tube care involved regular control of the puncture site, cleaning of the tube, disinfection, and change of sterile drain swabs; it was performed during the first years by licensed nurses and during the last years by one family member who had educated himself on tube care and acquired the necessary skills.

When the decision was made to perform a PEG, the family was informed only about the medical aspects of long-term enteral tube feeding.¹ Concerning the bioethical and legal aspects of the implantation of the PEG tube as a life-sustaining device,² the family members as surrogate decision-makers in absence of an advance directive were not familiar with the prima facie principles of biomedical ethics (eg, patient autonomy, beneficence, nonmaleficence, and justice)¹ and had to rely on the expert opinion of the head of the department of Internal Medicine, who recommended life-prolongation based on the patient's stable condition.^3,4 As he was the one with whom the family communicated daily during the patient’s stay in the hospital to obtain information on her condition, a relationship of mutual confidence had evolved, and the family trusted that his recommendations were in the best interest of the patient. Concerning future decision-making, the agreement was reached to honor the principle of nihil nocere (“do no harm”) and to avoid drawing out pain and anxiety.

Epileptic Seizures
Epileptic seizures started to occur shortly after the stroke when the patient was still hospitalized. During home care, the seizures occurred at irregular intervals every two to three weeks and varied in duration as well as in intensity. Most of the seizures followed the pattern of a “march of convulsion” typical for Jacksonian epilepsy. About 80% of the seizures lasted for two to three minutes, causing in most instances discomfort or pain for the patient, but exacerbated in a status epilepticus only twice during the ten-year care period. Concerning therapeutic strategies for the seizures during home care, the family sought advice from the family doctor, who did not recommend consultation of a specialist for anticonvulsant treatment. Thus, only a benzodiazepine tranquilizer was administered on demand, with 8 drops each time. The lack of regular anticonvulsant medication added to the burden of the family because they had to monitor closely the patient’s psychomotor behavior and to administer medication whenever they noticed the appearance of an aura.

Permanent Urethral Catheter
As with feeding tubes, indwelling urinary catheters present major problems in stroke rehabilitation.⁵ The main complications caused by the permanent urethral catheter, which was applied immediately after hospitalization in 1996, were urinary tract infections. Although these infections could be treated effectively with a systemic antibiotic, they had a negative impact on the patient's general condition and necessitated intensified care. This care, performed exclusively by licensed nurses as paid caregivers, included frequent changes of the urinary drainage bag, regular rinsing of the catheter in five-week intervals, and setting a new one every six weeks. Since the urinary catheter was viewed by the family as a deterioration of quality of life, they suggested its removal to the family doctor. On the one hand, the family doctor was fearful of monilial infections; on the other, he knew the family well enough to trust in their commitment to quality care. Thus, the mutual agreement was reached to remove the urethral catheter on a trial basis and to report to the family doctor any sign of skin lesions. Paid caregivers were advised to pay heightened attention during lower-body hygiene, and the patient was able to spend the last four years of her life without the urethral catheter.

Although medical care itself was provided exclusively by doctors—who made house calls also for occasional treatment of a descensus uteri (change of pessary every 3 months by the gynecologist), edemas, petechiae, and diaper rashes—the management of this care was a part of the family burden.⁶

Family Burden
The family was highly motivated; one of their members was employed only part-time so that he could stay with the patient in her house and set up a home hospital with a functioning infrastructure and round-the-clock care; this included medical treatment by the family doctor who was available for house calls and oversaw the entire care provided by the family as well as by the paid caregivers. By contracting with a commercial nursing care organization, the family could make sure that the patient received professional nursing care in the morning, afternoon, and evening. The task of the paid nurses primarily comprised body hygiene (3 times a day) and tube care. In these activities they were assisted in most instances by family members who, at times, had to remedy deficiencies caused by incompetence or lack of professional responsibility on the part of individual caregivers. The nurses also had to maintain regular contacts with the family doctor and report to him any changes in the patient’s condition. Through the regular communication between family doctor and nurses, as well as family members, the family doctor was well-informed about the patient’s condition, and this alleviated the family’s burden on the psychological level.

The financial burden consisted of three major cost factors: paid caregivers, acquisition and maintenance of medical equipment, and expenses for daily care. Costs for the paid caregivers, including nurses, physical therapists, and ergotherapists, amounted on average to 1200 euros (1 euro = approx. $1.54) a month; costs for equipment, including a patient hoister and a stair-stepper, was 400 euros a month; and expenses for daily-care items (eg, gloves, ointments) was about 200 euros a month. Altogether, the monthly expenses amounted on average to 1900 euros. By a federal law regulating disability care, 1800 euros were allocated monthly to the patient, who had been placed in the highest disability category. Because she also received a small pension, the entire family home care could be financed by these means, and no financial contribution on the part of the family members was necessary.

Given the family members’ positive attitude towards care provision, they are in the category of those caregivers who view their task not so much as an unpleasant duty, but rather as a gratification.⁷ The family’s efforts to provide quality end-of-life care were recognized by the doctors involved in the treatment of the patient, and facilitated their diagnostic procedures because they could rely on the family’s observations and their knowledge acquired through self-study on stroke rehabilitation. As the doctors received accurate information on the patient’s condition, they were willing to pay heed to their suggestions concerning medication (eg, K⁺-retaining natriuretics [spironolactone] instead of loop diuretics [furosemide]), as well as treatments such as physical therapy or ergotherapy. Family members also improved the patient's quality of life through a social reintegration that included participation in public events, visits to exhibitions and movie theaters, as well as daily participation in church services. One has reason to believe that the familiar surroundings in her home, as well as the permanent presence of her family,⁸ had a positive impact on the recovery and enabled her to survive for an exceptionally long time period so as to reach the age of 94.

Results
As this case report shows, concerted efforts by doctors, family, and paid caregivers at achieving worthwhile quality of life in a family home care for a severely impaired stroke patient with a poor prognosis can lead to a positive outcome, even if care is complicated by long-term enteral tube feeding and other health problems. Occasional shortcomings in home care due to the family's inexperience can be minimized through intensified communication between doctors and family, a communication that also is of value regarding the psychological aspects of family burden.

Conclusion
Families, especially those with highly motivated members, should be encouraged to consider the feasibility of long-term care in a patient's own home by taking into account the possibility of close cooperation with the family doctor and the help available from paid caregivers. Medicare savings through the unpaid services of the family can be substantial and beneficial for society from a macroeconomic point of view. As some countries seem to be more committed to promoting long-term home care by legislative measures—regulating allocation of financial support for the patients and their families, as well as setting standards for activities of healthcare providers—international and cross-cultural information exchange on this topic would be very useful.

The author reports no relevant financial relationships.