Nederlands-Vlaams Tijdschrift voor Palliatieve Zorg

Objectives To identify which factors determine the time when general practitioners (GPs) propose the use of hospices to palliative patients, the differences between the characteristics of palliative patients who are admitted vs. patients who are not admitted, and the reasons why patients on waiting list of hospices do not enter these care facilities.Methods Questionnaires to GPs, analyses on data from a hospice registration system (REPAL), and interviews with experts.Results All GPs found that if the palliative care a patient receives at home is no longer optimum, hospices should be discussed. Moreover, a very large proportion of them found that this issue should be discussed whenever its use is requested by the palliative patient, if the patient is in the terminal phase, or if intensive nursing care is needed. Referral factors included insufficient home care as well as the patients’ request for hospice facilities. “Estimation of the patients’ life expectancy”, and “poor acceptance of the palliative phase” were barriers for the discussion as well as referral to hospices. Palliative patients who needed intensive care and/or symptom control and patients whose caregiver needed to be relieved, were more often admitted in the hospice included in this research than palliative patient without these characteristics. More than half of the patients on waiting list died before they got a chance to be admitted.Conclusions Many GPs discuss the possibility of the use of hospices with palliative patients. However, this discussion is presented (too) late. It is very important that the first discussion about the use of hospices occur in the palliative phase and not in the terminal phase.

How familiar is the Flemish population with palliative care?Until recently, there were no data on the acquaintance with palliative care (PC) in the Flemish population. To gain some knowledge on this domain, the Federation for Palliative Care Flanders commissioned a study, performed by the University of Antwerp in 2010.Evenly spread over the five Flemish provinces, 600 face-to-face street interviews were performed. Four out of five respondents (n=480) had already heard of PC. When the other 20% of the respondents were read a definition of PC, another 10.7% (n=64) answered that they recognized the notion of PC. There were 55 respondents (9.2%) who did not recognize the notion of PC, even after having heard the definition.In the 480 respondents who spontaneously answered to be familiar with the notion of PC, we can see remarkable differences according to age and educational level. Respondents above the age of 29 are far more familiar with the notion of PC (87.2%) than those from 15 to 29 (64.9%) and respondents with a college or university diploma score higher (87.8%) than those with only a diploma of higher secondary school (73.5%) and those with a diploma lower than higher secondary school (68.7%).When asked which the target groups of PC are, terminally ill are mentioned by 80.2% of the respondents. On the other hand, family of terminally is only mentioned by 8.4%.Most respondents know that PC can be performed in the hospital (86.9%). However, only 44.4% mentioned the home as a possible location for PC. Almost two out of three respondents know that PC is supplying physical and psychosocial care (66.4% and 61.8% respectively). On the other hand, spiritual care and practical help are much less known as possible services offered by PC (12.1% and 12.9% respectively).The most preferred information sources for PC are the internet, the GP and the hospital.In conclusion, we can say that the Flemish population is for a great deal familiar with the notion of PC. However, in the younger age groups and the lower educated, there is some need to give more information. This information could be offered by means of the internet, which is a preferred information source, especially in the younger age groups. Besides, it is important to inform the population that also family of terminally ill people belong to the target group of PC and that PC can also be performed at home.It is hoped that this study can be repeated in the future, to validate this first bench-mark.

Palliative day care has been since years a regular health supply in England and Scotland. The first organisation in the Netherlands that offers this kind of palliative care is Academical Hospice Demeter in De Bilt. Palliative day care is meant for patients in an early palliative phase with the aim to improve their quality of life. Data were collected from june 2006 until june 2010. This article aims to answer the following questions:

1. Which patients participate in palliative day care?

2. Why and for how long did they take part?

3. What were the reasons for enrolment and what were the reasons for terminating participation?

4. What problems in accessibility were experienced?

In this literature review we evaluated the feasibility and clinimetric quality of quality-of-life (QoL) measurement instruments suitable for use in palliative care. We conducted a systematic literature review to identify instruments measuring (at least one domain of) QoL. We selected articles that present data on patients receiving palliative care and at least one measurement property. A checklist was used to describe the characteristics of the instruments, and a widely accepted rating list was used to evaluate the clinimetric aspects. Twenty-nine instruments were identified and evaluated, most of which were targeted at palliative patients in general. None of the instruments demonstrated satisfactory results for all measurement properties. Fourteen instruments received positive ratings for construct validity. Thirteen instruments were tested for reliability, but only two were tested adequately and had positive results (ICC>0.70). Responsiveness was not tested adequately for any of the instruments. Very few of the studies provided information on the interpretation of the scores. Overall, the MQOL, followed by the QUAL-E and the QODD, received the best ratings for their measurement properties. Many measurement instruments were identified, but most had not yet been adequately evaluated. The evaluation of existing instruments with good content validity should have priority over the development of new instruments.