Transmural care

Abstract

Despite their wishes, terminal cancer patients are frequently readmitted to hospitals. This appears in part to be due to poor communication amongst professional caregivers and/or the overburdening of their (informal) caregivers. This quasi-experimental study investigated the effects of a transmural home care programme on re-hospitalization, quality of life and place of death for terminal cancer patients. The programme intended to optimize communication, cooperation and coordination between intra- and extra-mural health care organizations (transmural care). Initial patient characteristics of the intervention group (n=79) matched those of the control group (n=37) well. When compared to the control group, which received the standard community care, patients in the intervention group underwent significantly less re-hospitalization during the terminal phase of their illness (5.8 versus 11.5 days; P<0.01) while the intervention contributed significantly positive to the patients' “physical” quality of life 1 month after the start of the intervention. A higher, but not significant (P=0.06) percentage of patients in the intervention group also died at home (81 versus 65%). The introduction of measures to enhance coordination and cooperation of intra- and extramural care, seems to be an improvement compared to standard community care.

Introduction

Cancer is one of the major causes of death in developed countries [1]. It can have detrimental effects on quality of life, especially if the disease is incurable [2], as is true for 50% of cases 3, 4. If the disease progresses and the patient enters a (pre-) terminal phase, hospital admission will be necessary in most cases 5, 6. The most frequently observed reasons for admission are: inadequate alleviation of symptoms at home, physical and/or psychological inability of the direct caregiver to care for the patient and inadequate communication amongst the professional caregivers 7, 8, 9, 10, 11, 12.

In Britain and the United States of America, hospices were founded in the 1970s and 1980s to provide a better form of palliative care for terminal patients [2]. Others have tried to improve care by setting up “home care programmes” based from hospices or hospitals 13, 14, 15, 16. However, studies investigating the effects of these home care programmes, developed and carried out by these intramural organizations, failed to show a consistent positive effect on the patients' quality of life or re-hospitalization 13, 14, 15, 16.

In the Netherlands terminal cancer patients are also frequently re-hospitalized, despite the presence of a primary care team [17]. The primary care team consists of a general practitioner (this service is available for consultation 24 hours a day), a community nurse (also available for 24 hours a day if necessary), a Home Help service, and a medical aid supply service which can provide special equipment for use at home for the patient, e.g. special beds, equipment for epidural analgesia et cetera. Furthermore, most cancer patients are regularly checked by their hospital consultant specialist. So care in the Netherlands, as in most other developed countries, is organized into “intra-” (hospital based) and “extra-mural” (community based) care. As professional carers in these different sections usually confine their work to their own units, good cooperation and communication between them is often lacking. This may lead to inadequate care and unnecessary hospital admissions 9, 10, 18, 19.

In order to be able to provide better supportive care for these patients at home, an intervention programme was developed. Its main objective was to offer the patient care specially tailored to meet his individual needs, and provided by professional caregivers from primary and hospital teams. In the intervention group the primary care team continued to care for the patient as usual, but with collaborative support from the hospital care team. The intervention intended to optimize care by improving the continuity of care and by emphasizing the complementary approach to care giving, with maximal coordination and communication. This kind of care was named transmural care in the Netherlands. It has been defined by the National Council for Public Health Care as follows [20]: “Transmural care encompasses those kinds of care which are tailored to meet patient's needs. It is provided by caregivers from primary and hospital teams on the basis of coordination and cooperation, with shared responsibility and specification of delegated responsibilities.” The development of such care at a regional level was highly recommended by the Dutch government [21].

It was thus hypothesized that by improving communication, coordination and continuity of care this transmural care would lower re-hospitalization. A desire also shared by patients 22, 23, 24. However, this should have no negative consequences for the patient's quality of life. Furthermore it should allow more patients to die at home.