Evaluation of centers for information and support combining formal and informal care for patients with cancer: a systematic review of the literature.

PURPOSE: Clear information and supportive care are necessary for patients with cancer to effectively manage their condition. Traditionally, healthcare professionals offer information and support via the so-called formal care route. In addition, research has found favorable effects of informal care provided by volunteer programs and informal "walk-in support centers." Less research has been done on initiatives that combine formal and complementary informal supportive care for patients with cancer. This systematic literature study aimed to discover (1) which types of initiatives are described in the literature, (2) what type of care they offer, and (3). how they are evaluated in terms of outcome measures. METHODS: We performed a systematic literature search of MEDLINE, Embase, PsycINFO, and CINAHL. Studies were included if the collaboration between one type of formal care together with one type of informal care was explicitly mentioned in the article. The search was not restricted to a specific cancer type. RESULTS: A total of 4869 records were retrieved and 18 studies were included. In most studies, the care provided consisted of emotional support for, and/or providing information to, patients and their families. Initiatives were evaluated with interviews and questionnaires. Patients with cancer reported that they were satisfied with the care offered, including information, social and emotional support, help with activities of daily living, and family-related issues. Volunteers reported that visits they made were experienced positive and rewarding and the volunteers were confident about their contribution to general healthcare. Some negative experiences were reported by volunteers, e.g., interference of their own cancer diagnosis with volunteer work. The importance of proper training was stressed. CONCLUSIONS: Initiatives combining formal and informal supportive care hold the potential of added value in terms of providing emotional support for, and providing information to, patients with cancer. Support and specific training for volunteers can be viewed as success factors in the involvement of volunteers in formal care practices.

Management of recurrent malignant pleural effusions with a chronic indwelling pleural catheter.

Many patients with various forms of cancer develop sooner or later malignant pleural effusions, resulting in feelings of discomfort and reduced quality of life. Several palliative options exist, including repeated thoracocentesis and pleurodesis with a sclerosing agent. However, these "therapeutic" possibilities are not always successful and sometimes even contraindicated. Also, patients need to visit the hospital regularly or have to stay hospitalised for several days. A chronic indwelling pleural catheter could provide a simple, completely outpatient way to provide respiratory relief and improvement in quality of life in patients with malignant pleural effusions. We evaluated retrospectively the course of 17 patients with malignant pleural effusions who were treated with a chronic indwelling pleural catheter (PleurX). Eligible patients were selected in the years 2001-2003 from a single institution. In 70-80% of patients, catheter use was uncomplicated and provided significant symptom relief. Mean duration of catheter use was 2.3 (range 1-6) months. Mean fluid removal was 360 (range 150-1000 cc) per 24 h in the first weeks of treatment. Infection was seen in two (12%) patients, dislocation of the catheter in three (18%). In the final analysis, catheter use was unsatisfactory in two patients (12%). We conclude that a chronic indwelling catheter is a very useful tool in the management of recurrent malignant pleural effusions. Treatment can be accomplished completely at home, whereas complications are rare.

Clinical decision-making at the end of life: the role of the patient's wish.

Information about medical decision-making in the last stage of life and the wishes of terminally ill patients is scarce. At two hospital departments, we observed 16 multidisciplinary meetings and recorded 110 discussions concerning 74 patients. Thirty-three of these discussions concerned either starting or forgoing potentially life-prolonging therapy or applying potentially life-shortening medical interventions. The wishes of the patients were considered in 15 of these discussions. In 6 of these 15 discussions, the patient's wish was unknown. In five discussions the decision was postponed to enable discussions with the patients. Potentially life-shortening decisions were never made if patients were known to disagree. No decisions about physician-assisted death were made. The study shows that medical end-of-life decisions are commonly shared between the involved caregivers and the patients.