This talk was presented at the Tenth Anniversary Meeting in Valencia, May 2004

The following is a presentation of a project at the department of pediatric Hematology/Oncology in Bonn, Germany, which was started – and at the beginning solely funded – by the local parent initiative. It is not the only such project in Germany but, since home care for children with cancer is not generally covered by the health insurances, there are not many services of this kind.

In Germany, approximately 1,800 children under the age of 16 are diagnosed annually with cancer. If we include the 16 to 18 year old patients the figure is approximately 2000 to 2200 per year.

Advances in the treatment of childhood cancer have dramatically increased the survival rate. Today, the 15–year overall survival rate is about 70% for all malignancies in childhood. On the other hand, there are still approximately 500 children per year who die from the disease – most of them in hospital.

In the year 2000, the national confederation of parent-initiatives (Deutsche Kinderkrebsstiftung) funded a study to evaluate the actual situation of ambulatory palliative care for pediatric oncology patients in Germany (in a project called PATE). Questionnaires were sent out to all pediatric oncology departments asking them to state the present situation with the following results:

Out of 490 patients who died in 1999, 60% died in hospital and only 40% of the children at home, mainly due to the fact that only 10 departments had their own ambulatory care team or cooperated with an independent pediatric ambulatory care service.

The pediatric oncology department in Bonn is a medium size unit with 16 beds, 50 to 60 new admissions each year, a specialized outpatient clinic and a day clinic.

The local parent initiative has been active since 1983 and has supported many projects for patients and their families. In 1998 it started to finance a home care nurse, who should - equipped her with her own car – be able take care of all home visits, which until then were done by doctors and nurses at their spare time and personal risk – and of course, very unsatisfying for all. Soon it became obvious that one person alone would be not enough for a qualified response to all the demands. Thus, with the help and financial support of the German José Carreras Foundation, a team of 5 parttime nurses was established (with respect to their sponsor, the nurses call themselves ‘Las Carreras’), all of them experienced pediatric oncology nurses who used to work on the ward but prefer the part time employment due to their own family situations. Together they cover about 70 hours per week. The local parent initiative funds their cars, the necessary medical equipment, computers and mobile phones.

These nurses are closely supervised by the physician of the outpatient clinic who has the medical responsibility. They are – of course - not only engaged in palliative care, but offer home visits on demand.

Already in the first week in hospital, the family is introduced to the home care team and a first visit is arranged after one of the first regular discharges. At this point many questions which come up at home can be discussed and taken care of.

During the on-going treatment, the home care is continued only by personal request and/or if medically necessary, for example for teaching parents in the handling of a Hickman catheter.

In general, each patient is taken care of by his/her ‘personal’ nurse from the very beginning, which helps to build up a familiar relationship between the family and the nurse and eases the change into palliative care  – if needed.

Many families do not need or want another home visit. But in those cases where the treatment fails and cure becomes less likely, home care is gradually increased.

All visits and contacts are documented in a data bank and can be evaluated.

Here are some facts specific to the palliative situation as collected from 1999 to 2002: until then, 18 patients were treated in palliative care (11 male and 7 female patients), of whom 11 had a relapses and 6 progressive disease. A third of the patients suffered from brain tumors, about one quarter had acute leukemia and three with Ewing sarcoma. Every patient and his/her families had the option to discontinue palliative home care at any time and could return to inpatient service. None of these families chose to return to the hospital.

The time from the last relapse or progress of the disease to the beginning of palliative care ranged between one month to two years.

The time of palliative home care lasted a median of seven weeks. The time of palliative care is generally shorter in malignant systemic diseases (like leukemia) than in solid tumors or brain tumors. Though these are known facts to the nurses, it is clearly avoided to give any prognostic comments about the possible duration of this time. Instead, the nurses try to convey to the parents the importance of living every single day with their child and not falling into an attitude of “waiting for death”. They can help to organize “events” such as visiting a concert or going out to the favorite restaurant.

Before the actual palliative care starts, an average of six visits per child has already taken place. These visits are demand-oriented, but often are necessary in regard to a possible future palliative situation. The nurses consider these visits as very important for setting up a comfortable relationship between them and the family as well as the patient.

The number of visits during the palliative care depends on the medical and the nursing situation as well as on the familial situation – on their self-confidence and ability to care for their child independently. The most common measures are pain control, decubitus prevention and nutritional support.

In the time here documented the nurses spent an average of 105 minutes per visit at home – the longest visits are in terminal situations. The travel time came to a median of 40 minutes and the distances for back and forth was approximately 30 kilometers.

In general, home visits are offered if the travel time does not exceed one hour one way. Otherwise the local general practitioner and a general ambulatory care service are involved and regularly contacted per telephone.

The time for the visits was divided into the medical/nursing part and time for communication. The communication part comprises two thirds of the total visiting time.

During the course of the project it was realized that many of the parents’ needs for support and counseling could be managed by telephone. Often a simple confirmation gives enough security to follow their own ideas and plans. An average of 25 phone calls, equaling six hours per patient was counted. This promoted the establishing of fixed hours for phone counseling, which allows parents and nurses to be prepared and in an undisturbed situation. It also allowed the team to reduce home visits without reduction of contentment. As an average they figured 31 hours per patient for home visits and 14 hours of travel time plus time for administrational work and team exchange (with the nurses in hospital, social workers, psychologists, physiotherapists, pharmacies etc.).

In the years 1996 – 1998, twenty nine patients treated by the oncology department in Bonn died. Only one third of them died at home, though there has always been the offer to discharge the children in order to let them be at home for the last part of their lives. But before the home care service was established most parents did not dare to get themselves into a possibly difficult situation without the option of professional support. Since the ‘Carreras-Team’ started the home care for curative as well as for palliative situations, the number of children and parents opting for home care has nearly doubled.

The parent initiative gets very positive response from all families involved – specifically from patients in a palliative situation, for whom home care has made a remarkable difference in raising the quality of life until the end.

Meanwhile negotiations with the insurance companies haven taken place and we are optimistic that will be at least the medical and nursing parts of the home visits reimbursed as the insurances realize the clear financial benefit due to less hospital stays. But the indispensable part of ‘communication’ will still have to be supported by the parent initiative.