Research project SO/02/022 (Research action SO)
In general, the project aims to bridge the gap which exists between the doctor-expert and the patient-layman with regard to one very important aspect of health care: terminal care. This gap is clearly manifested in the highly specialised health care provided towards the end of a patient's life. The HALP [Handelswijzen van Artsen rond het Levenseinde van Patienten = physicians' actions about the end of a patient's life] research in Flanders, for example, clearly revealed that HALPs which strive for a gentle and dignified death occur significantly more often among the higher-educated. This indicates that - if one wishes to receive life-terminating assistance - the patient must perhaps be familiar to a certain degree with the medical discourse, and that those who, as patients, lack these skills, receive a different form of terminal care.
Thus, the concrete development of a protocol for HALPs in primary health care has the following objectives:
- Achieving the participation of all parties involved in the terminal decision-making (overcoming of the doctor / health worker - patient / next of kin asymmetry);
- Defining how the communication about HALPs preferably takes place between care provider, patient and family;
- Defining how the referral of terminal patients to hospitals and from hospitals to home should preferably take place;
- Defining how care providers should preferably respond to a request from the patient or his representatives to discontinue or not initiate a given treatment, for potentially life-shortening treatment of pain and symptoms, and for termination of life;
- Defining how HALPs are preferably prepared and implemented, and which forms of co-operation must be sought with the various primary care providers;
- Defining how family members are preferably involved in the decision-making about HALPs, including referral procedures for psychosocial accompaniment and grief counselling;
- Comparing the practice of the HALP protocol with the practice of palliative protocols.
One has opted for a qualitative method because of:
- the exploratory character, whereby one seeks an in-depth analysis of pressure points and obstacles standing in the way of an ethical-medical quality assurance of HALP;
- the importance of understanding how the involved parties themselves perceive the problems.
The data is collected on the basis of:
- semi-structured interviews with primary care providers (general practitioners, nurses, palliative teams, etc.);
- semi-structured interviews with care recipients (patients with life-threatening conditions and their family members, and relatives of deceased patients);
- focus-group interviews with a "mixed group" (doctors, nurses, relatives, etc.).
In a first phase, the data collection is oriented towards drawing up an inventory of needs and requirements for high-quality decisions about the end of life. This phase should result in a draft protocol "Ethical quality assurance for HALP in primary care". In a second phase, data are collected in a similar manner to test the validity of the protocol.
The specific tasks of the PROJECT are the following:
A. Preparatory phase
A1. Literature study
A2. Secondary analysis of the HALP research data file (Lancet, 2000)
A3. Composition and selection of research population, consultation with W.V.V.H. [Wetenschappelijke Vereniging van Vlaamse Huisartsen = Scientific Association of Flemish Family Doctors]
B. Exploratory research phase
B1. Data collection (interviews, focus groups with doctors, patients, nurses, etc.)
B2. Data analysis
B3. Draft of protocol
C. Validation of protocol
C1. Testing of protocol among doctors
C2. Supplementary data collection (interviews and focus groups)
C3. Adaptation of protocol
D. Reporting
D1. Discussion of the internal drafts of reports with the research group and the promoters
D2. Draft of final reports
D3. Discussion of drafts of reports with OSTC
D4. Draft of a summarising brochure aimed at policymakers
D5. Social utilisation of the scientific results
Zorgzaam thuis sterven : een zorgleidraad voor huisartsen
Deschepper, Reginald - Vander Stichele, Robert - Mortier, Freddy ... et al Gent : Academia Press, 2003 (PB6007)
Bien communiquer au sujet de décisions de fin de vie avec ses patients compétents qui souhaitent mourir à leur domicile: recommendations aux généralistes : résumé
Bruxelles : Politique scientifique fédérale, 2003 (SP1193)
[To download]
Kwaliteitsvolle communicatie over beslissingen rond het levenseinde bij wilsbekwame patiënten die thuis (wensen te) sterven: een zorgleidraad voor huisartsen : samenvatting
Brussel : Federaal Wetenschapsbeleid, 2003 (SP1194)
[To download]
Quality communication about end-of-life decisions in competent patients who wish to die at home: guidelines for general practitioners : summary
Brussels : Federal Science Policy Office, 2003 (SP1195)
[To download]
Bibliografic references :
