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28 November 2022 | Country Update
Advance care planning for patients with an end-of-life disease
5.10. Palliative care
In Belgium, palliative care started to develop in the 1980s with the implementation of the first palliative care organization and the first in-hospital palliative care unit in Clinique Saint-Jean, Brussels (Institut Européen de Bioéthique, 2017). The decriminalization of euthanasia in 2002 (BS-MB 22 June 2002) forced palliative care to develop further (Vanden Berghe et al., 2013). Advance care planning, which aims to set a therapeutic objective based on the patient’s values and priorities, is the pillar of the palliative care process and encompasses four key communication principles: (i) to discuss the possibility of writing a negative advance statement including therapeutic limitations, (ii) to discuss the possibility of writing a positive advance statement (for example, an advance statement of euthanasia), (iii) to discuss the objectives of care with the patient, and (iv) to discuss the possible appointment of a legal representative or proxy (in case the patient is no longer able to decide for himself) (Fédération Wallonne des Soins Palliatifs, 2019).
Patients with a recognized palliative status have access to various financial benefits (including, a lump sum, the abolition of the patients’ co-payments for nursing, GP and physiotherapist visits) (NIHDI, 2019f). In 2018, 18 791 patients requested a lump sum for palliative care, which corresponds to a 33.9% increase from 2008 (NIHDI, 2018g).
More detailed identification criteria are now legally defined in a Royal Decree of 21 October 2018 (but not yet entered into force) (BS-MB 21 October 2018).
There are three palliative federations in Belgium: Federatie Palliatieve Zorg Vlaanderen in the Flemish region, Fédération bruxelloise pluraliste des soins palliatifs et continus in the Brussels-Capital region and Fédération wallonne des soins palliatifs in the Walloon region. They foster cooperation between representatives of front-line social and medical workers, organizations, institutions, associations and services for palliative care. Their mission is to promote communication between members, to organize education sessions, to stimulate the development of knowledge and research, and to be representatives for the authorities (MoH, 2017b).
In addition, 25 palliative care platforms are implemented in Belgium. They are responsible for the promotion of palliative care through raising awareness in the population, coordinating local care, educating caregivers and volunteers, and evaluating the needs for palliative care (Portail des soins palliatifs en Wallonie, 2019)
Various measures have been introduced to support the provision of palliative care at home – financial: abolition of the patients’ co-payments of certain home visits; support for informal carers: the option of taking palliative leave; and specialist care facilities: development of the multidisciplinary support teams to support carers providing home care (MoH, 2016g). Home care is performed by a team of health professionals (GPs, nurses, physiotherapists, psychologists), informal carers and volunteers. An external multidisciplinary counselling team specialized in palliative care can also provide counselling by organizing consultations with carers, coordinating palliative care, and supporting carers psychologically and morally. Although there are 28 such teams in Belgium, they are often overloaded because the demand for their intervention is growing and the staff of these teams is only calculated on the basis of the number of inhabitants of a region (Vanden Berghe, personal communication).
Five paediatric liaison teams support patients aged 0 to 18 years who have a heavy chronic pathology, as part of palliative treatment or terminal care (MoH, 2017b; Friedel et al., 2018; BS-MB 15 November 2010).
Palliative day care centres are complementary to home care, offering an adapted and specialized care programme, and organizing social activities to increase the social network of a patient receiving palliative care. In 2019, they were only implemented in Flanders (MoH, 2017b).
All nursing homes and some older people’s homes are obliged to offer palliative care. A staff member deals with palliative care, the aim of which is to heighten the caregivers’ awareness and provide them with education on palliative care. Their involvement in palliative care is limited to one third of full-time equivalent for 90 residents.
Respite units welcome children who require palliative care. The goal of such facilities is to relieve the patient’s family for a few days (MoH, 2017b).
In hospitals, there are specialist palliative care units that are mainly dedicated to the control of symptoms, the psychological accompaniment of the patient and the family, and the preparation for and accompaniment during mourning. Here, patients who can no longer stay in an acute hospital or cannot be looked after at home any more are offered individual total care by a multidisciplinary team. There are 51 palliative care units in Belgium, which corresponds to 379 palliative beds in 2017 (MoH, 2017b). There is also a mobile team that can be called upon for patients who are not staying in a palliative unit. This team does not take on the palliative care itself but advises the teams of the department to which the palliative patient has been admitted on the palliative care that needs to be provided. It is also tasked with continuous training and awareness-raising about palliative care among hospital staff. All Belgian general hospital departments have a mobile palliative care team (MoH, 2016g).
The evaluation of palliative care in Belgium showed that areas requiring attention are: considering alternative forms of accommodation and the development of competences regarding the management of palliative care for psychiatric patients and special populations (for example, those resulting from migration) (MoH, 2017b).
In 2018, there were 1.7 palliative care services per 100 000 inhabitants, which is above the European median (0.8/100 000 inhabitants) (Arias-Casais et al., 2019). According to the last HSPA report, the accessibility of palliative care has improved: more than half (53.4%) of all individuals with terminal cancer received palliative care in 2015, which represents an increase compared with 2008 (48.0%); see Devos et al. (2019) for more indicators.
In order to guarantee the quality of palliative care, from 1 November 2022 the NIHDI has decided to fully reimburse consultations for advance care planning for palliative care patients. During these ‘planning’ consultations, patients (identified as ‘palliative’ on the basis of the Palliative Care Indicator Tool, PICT) and their GP jointly determine the patient’s curative and palliative care desires (positive declaration of intent) but also the care not desired by the patient (negative declaration of intent), define individualized care objectives based on the patient’s need, and eventually designate a possible legal representative if the patient is no longer in a state to decide for himself/herself. This planning remains ever evolving and the patient can modify his/her choices at any time.
For more details see: https://www.inami.fgov.be/fr/themes/cout-remboursement/par-mutualite/palliatif/Pages/soins-palliatifs-parler-plus-tot-meilleure-qualite-soins-vie-advance-care-planning.aspx (in French) or https://www.inami.fgov.be/nl/themas/kost-terugbetaling/door-ziekenfonds/palliatief/Paginas/palliatieve-zorg-nu-bespreken-kwalitatieve-zorg-later-advance-care-planning.aspx (in Dutch).