Palliative care aims to promote the quality of life, especially the comfort and dignity, of the individual patient in their own context.
When that need arises for extra support in complex care or palliative situations, the treatment teams at NMSC can call on the PST (Palliative Support Team).
This team consists of Corinne Cuvelier (palliative nurse), Sanne Van Crombruggen (psychologist), Hilde Zonderman (social worker), Stefan Vermuyten (hospital chaplain) and An van Nunen (PST coordinator, doctor). The members have gained competence in palliative care in neurological disorders through continuing education and specific training.
Principles of palliative care
- Each patient has his own history and personal values that translate into specific needs and wishes around the end of life. There are also the needs of their 'significant others' (family, children, close friends) who can help shape end-of-life care.
- Palliative care is therefore tailor-made care.
- Active, intensive and creative pursuit of the highest possible level of physical comfort:
The mission of the PST
The PST's function is to promote and further develop the palliative care culture through:
The PST is ready for patient and healthcare provider
Treatment teams on the wards can seek second-line advice from the PST in complex palliative situations (read: problems with symptom control or comfort care in both the non-terminal and terminal patient). The PST supports them in specific care aspects such as pain control, breathing problems, agitation, oral care, spiritual pain, ... .
The individual caregiver (doctor, rehabilitation therapist, nurse, healthcare professional, ...) can also submit a question to the PST. In some cases, this is a personal review and a request for more information. In other cases, this is concrete advice on symptom control in a patient. The PST encourages the healthcare provider to further team-level communication about palliative care in a specific patient and to shape the approach interdisciplinarily.
The PST also fulfils an informative role towards patients and family who want to be informed about topics such as end-of-life decisions (palliative care, living wills, euthanasia,...).
Link to end-of-life decisions, living wills and euthanasia
From comfort care to terminal care
In the context of palliative care, the last hours or days of life require special attention from healthcare providers.
These last moments are experienced as very intense by both the patient and the significant loved ones, and their smooth progression is important for saying goodbye. Each person does so in their own authentic way, and the hospital environment should, as far as possible, enable and support this process both practically and in terms of care attitudes.
The patient is entitled to professional care (symptom control, basic care, open communication about what is important to him/her, etc.), and the family should -as far as possible- be involved, informed and supported.
Because dying is a process that requires attention to several facets, it is opted for interdisciplinary care of patient and family even in a terminal phase. After all, the calm and comfortable course of this phase turns out to be crucial in the grieving process after death.
Here, too, the PST is ready to help with advice and assistance.
How to seek advice from the PST?
Requests for advice for the PST can be made verbally, by phone or by mail via the (medical) secretariat.
When a patient or family member has a request for information or guidance, an appointment can be made with the PST doctor, nurse or psychologist via tel outpatient clinic or secretariat.
Questions about palliative care and the end of life can be addressed to your treating physician or someone from your treatment team. The PST is also available if you would like additional information on topics such as end-of-life decisions (palliative care, living wills, palliative sedation, euthanasia, etc.).
Dr An van Nunen (rehabilitation doctor) is coordinator, Ms Corinne Cuvelier nursing expert palliative care and Ms Geraldine Janssens psychologist. The PST is further reinforced by Stefan Vermuyten (hospital chaplain) and Hilde Zonderman (social worker and confidential counsellor).
You can contact each of them at medischsecretariaat@mscenter.be or by phone at 02/59 78 647
The 'Patients' Rights Act' (2002) states that, as patients, we can choose to refuse a certain treatment. We can also make a request to perform a certain treatment as described in the 'Euthanasia Act' (2002).
When a person has the capacity of will (i.e. is capable of making independent judgements and decisions), he/she may choose to make an advance living will. A living will is a written statement of what one (no longer) wants in terms of care and treatment, at the time when one would no longer be able to express his/her will.
It may deal with the following topics:
Below, we clarify situations in which living wills can be useful, the types of living wills and the role that different people play in them.
As long as one can still express what one wants, one does not need a living will. After all, for every examination and treatment -after informing the patient- doctors must ask the patient's permission to carry it out.
If you have a clear opinion about what end-of-life care you want/do not want, it is best to put this on paper in the form of a living will.
If one has not drawn up a prior living will and does not designate a representative (see below), the law stipulates which family members or other persons may act on the person's behalf in communication with the medical team in the event of an impossible will.
The patient's refusal of certain treatments (as stated in the negative living will) is binding on the doctor. In case of impossible communication with the patient, the doctor makes an assessment on the basis of a written will whether its content is applicable to the current situation.
With a positive will, the doctor can decide not to perform the desired (act) if he does not consider it medically justified or useful. This positive will is not legally enforceable. For example, a doctor cannot be forced to prescribe a certain medicine, perform an operation or perform euthanasia if he does not consider it medically/ethically justified.
Wills must be dated and signed by the person making the declaration, by the witnesses (only in the case of a request for euthanasia in the event of an irreversible coma) and, if there are any, by the designated confidant(s) and/or representative.
It is best if the applicant prepares the document in more than one copy (copies of the original document with original signatures are sufficient). After all, it is in the interest of each of the parties involved (next of kin, trusted person/representative and the treating physicians) to be aware of the existence of the document in advance and to ensure that they also have access to it. The original is kept by the applicant.
The government also provides for registration of the will for euthanasia in irreversible coma at the Civil Affairs Department of the city or municipality where one is domiciled. This has the effect of including the documents in an electronic national database that can be consulted by healthcare providers (24/7). Registration is not mandatory. A negative living will cannot be registered.
All prior living wills remain permanently valid until amended or revoked by the drafter.
Note: However, for the living will for euthanasia in irreversible coma, this rule was only equalised to 'unlimited duration' in 2020 (previously it had to be reconfirmed every five years). This new rule only applies to living wills that were drafted, revised or reaffirmed AFTER the alignment with the law took effect (after 2 April 2020). Wills drafted before the amendment are not automatically "converted" to unlimited validity: they must therefore be reconfirmed one last time by the applicant.
A practical way to inform counsellors of the existence of a will is a LEIF-card . This plastic card (the size of a bank card) lists all the wills of the holder. The card also includes the name and contact details of a trusted figure who is informed. The LEIF card does not replace paper wills but refers to them. The contents of living wills are not visible on the card, but the contact person who has a copy of the will is listed. The card provides an additional guarantee that doctors and social workers can be made aware of a person's legal living wills more quickly so they can be taken into account.
Patient (applicant)
The patient makes the will freely and consciously. This person must have the capacity to will i.e. be able to reason about his/her situation and possible future health problems. On the other hand, there should be no question of drafting a will under pressure from third parties.
The attending physician is responsible for assessing the patient's consent and voluntariness.
Doctors can consult the central database of the FPS Health, Food Chain Safety and Environment to check whether the patient has a registered living will regarding euthanasia in irreversible coma.
The treating physician and the palliative support team at NMSC inform patients about possible end-of-life decisions.
Every patient has the right to be assisted during contacts with the medical team. Such a person is designated by the patient and may be anyone. This person is called the confidant and will therefore support the patient in communication with the medical team. However, this person will NOT decide anything on the patient's behalf.
When a person has drawn up a negative will in case he/she has become incapacitated, he/she can appoint a formal representative in it. This is anyone, including the former trustee - who discloses the "negative" will and also ensures that the patient's rights are not violated.
Both confidant and representative should respect the patient's wills. Note that the trustee mentioned in the euthanasia living will has a similar function to the representative mentioned in the (negative) living will concerning patients' rights. When drafting a will for euthanasia in irreversible coma, one can (but does not have to) designate in the will one or more fiduciaries who will inform the treating physician of his/her will.
The patient's attending physician, the consulting physician and members of the nursing team cannot act as fiduciaries.
The will for euthanasia in irreversible coma must be dated and signed by the person making the declaration, by two adult witnesses and, if there are any, by the designated trusted person(s). At least one of those witnesses must not be an heir or have a material interest in the patient's death. The witnesses' function is to testify that the will was freely and knowingly made. After it has been put in writing, they no longer have any function as witnesses. At least one of the witnesses must have no material interest in the patient's death. A trusted person or representative may assume the role of witness.
If the patient can no longer sign the will himself, he may have it done by a substitute i.e. an adult person he/she designates who has no material interest in his/her death. The will shall state that the person is unable to sign and why. A medical certificate is attached to the will as evidence that the person is physically permanently unable to make and sign the will.
Euthanasia is the intentional life-ending act by a doctor, at the express request of a person who meets the legal requirements.
The Euthanasia Act (28 May 2002) gives a patient the right to request euthanasia if he/she:
At the NMSC, patients can contact their treating physician and treatment team with their questions about euthanasia and the end of life. In addition to its palliative care functions, the palliative support team at NMSC also plays an informative role for patients, families and caregivers who wish to obtain information on topics such as end-of-life decisions (living wills, palliative sedation, euthanasia, etc.).
In the case of a euthanasia request, at NMSC we opt for a two-track approach in which medical management and rehabilitation in one track and counselling of the euthanasia request in a second track, run in parallel. The first track remains focused on hope, recovery, rehabilitation and supportive care. The second track focuses on counselling the euthanasia request.
With this vision, we emphasise the importance of allowing evolution in the applicant's emotional and thought processes. To shape the track of the euthanasia request, the NMSC's Ethics Committee (EC), in addition to the legal obligations, has developed a guidance for the doctor. This roadmap focuses on careful handling and interdisciplinary counselling of persons requesting euthanasia.
More information on living wills and euthanasia and the legal conditions can be found on the Life End Information Forum LEIF. http://leif.be/home/
Contact PST: Ms Corinne Cuvelier & Dr An van Nunen
Contact EC: Dr An van Nunen
You can contact Ms Corinne Cuvelier & Dr An van Nunen at medischsecretariaat@mscenter.be or by phone at 02/59 78 647