Democratic psychiatry and cooperation with relatives ¹
Since its founding, ApK Berlin has been committed to promoting democratic processes in psychiatry. Participation is an important guiding principle in this regard. It is based on involvement and contributes to people being included in all decisions that affect their own lives. In order to successfully implement this in psychiatry, the ApK Berlin has developed a “concept for cooperation with relatives” that is intended to provide impetus for the further development of the psychiatric care system.
In contrast to “involvement of,” “cooperation with” relatives means that ....
- Family members can speak with their own voice,
- cover their own legal interests,
- help shape the future/relationships...
while taking into account the personal rights of patients, in particular their right to self-determination, while at the same time preserving the personal rights and self-determination of their personal social network.
Background
Social support is considered an important protective factor for mental health (RKI: DEGS 2010: Mental Health in Adults in Germany), and the same applies to a person's recovery. This is because how well each individual is integrated has a favourable/positive effect on health behaviour and the course of crisis events. For this reason, it is important to cooperate with the patient's personal network, especially when circumstances make a successful relationship difficult or impossible.
In order to strengthen the protective aspects, a conceptual framework for cooperation with relatives is required, while safeguarding the legal rights of each individual in the relationship structure and taking into account the framework conditions of service providers and service carriers. The aim is to avoid the functionalisation of relatives and to strengthen the self-determination of those involved in the personal network. Network discussions in open dialogue have proven helpful in this regard. Mutual references can also be experienced in trialogical discussions.
Relatives find themselves in a highly individual relationship constellation (1. children of parents with mental illness, partners, friends, parents, siblings; 2. living in the same household or not; 3. responsibility; 4. role) with the person in crisis, and they too experience a great deal of individual stress. To cope with the manifold challenges, they need their own strategies, but first and foremost information and education.
ApK Berlin has established itself as a point of contact for relatives of people with mental health crises/illnesses in Berlin. Its work is based on peer expertise from relatives. The association offers independent information and education for relatives in various formats (discussions, workshops and seminars, self-help groups) on the basics of the psychiatric care system and everyday challenges and problems.
If intervention is ultimately considered and a stay in a clinic is required, this also means a major change for relatives, especially for children of parents with mental illness. Social ties are not simply severed, but require special support during this period of uncertainty.
¹ Relatives include both members of the family of origin and chosen relatives who, due to their close ties, are also affected by the psychological trauma and are prepared to take on social responsibility.
- Conceptual anchoring for cooperation with relatives
Recommendations for a practice that includes family members and friends
Collaboration with family and friends
1. Integrated part of the strategy: quality standard
2. Concept (treatment tailored to needs)
3. Implementation of the concept (network counselling/trialogue)
4. Regular review
Staff competencies
5. Trained staff: role awareness when dealing with the social network
6. Responsibilities, accountabilities and competencies clearly defined
Building relationships with family and friends
7. Empathy and appreciation: health professionals understand the burdens faced by family and friends
8. Differentiated handling of the confidentiality requirement
9. Collaboration from admission to discharge: shared responsibility
10. Consideration of the interests of family members and friends: strengthen the (relationship) system
Information for family and friends
11. Clear clinic information policy (contact point, ward responsibilities)
12. Information material: particularly referencing ApK LV Berlin e.V.
13. Comprehensive, timely information
based on and further developed from: www.angehoerige.ch
- Cooperation with relatives using the example of a hospital
It is essential to establish a conceptual framework for the collaboration with family and friends (see below).
General: In the interests of participation, it is recommended to establish a contact person for family members and friends outside the wards in each hospital. The personal rights of patients are thus protected and those of family members and friends are promoted. The mission is to provide family members and friends with basic information (not referred to the patient) even in times of unsuccessful relationships and when contact has been broken off, thereby facilitating their personal coping processes. The aim is to strengthen natural and chosen relationships, to recognize each person's rights to self-determination and co-determination, and to acknowledge and protect the respective boundaries. The involvement of a peer is useful, networking with ApK Berlin is helpful.
In the wards: Working with the patient's personal social network requires clarification of responsibilities and clarity about shared responsibility and its limits (concept). Accordingly, differentiated handling of confidentiality is required.
Collaboration with family members and friends requires trained staff who recognise and acknowledge their various concerns, especially those of children. Transparent collaboration from the beginning of the hospital stay until discharge can help to reconcile the different interests of those involved and build mutual trust.
Each ward provides information material for family members and friends, in particular information about ApK LV Berlin e.V. and its services.1. In-patient, day care, home treatment (StäB) – General
1.1. Establish a conceptual framework for the collaboration with family and friends
1.2. Establish a contact person outside the wards
2. Ward(s)
2.1. Clarify responsibility (nursing service? social service? doctor?)
2.2. Adult family members/friends
− Implementation/measures:
1. Differentiated handling of the confidentiality requirement
2. Network counselling/Open Dialogue
3. Trialogue talks (all-party and equal)
4. Ward rounds addressing concerns/questions of family members and friends
− QM procedure for collaboration with family and friends −>
A) in case of hospitalisation of a patient
B) in case of institutionalisation of a patient
C) upon discharge, considering confidentiality requirements/waiver
2.3. Children of parents with mental health problems:
− Parent-child services in the clinic: A) Mother-child ward, B) Playroom/family room
− Collaboration with the contact person (other parent, grandparents, siblings) of the minor and the child itself
− Implementation/measures:
1. Differentiated handling of the confidentiality requirement
2. Network counselling/Open Dialogue — with the child
− Provide information on outpatient support services for children and their parent who has a mental health problem, initiate such services if necessary
− QM procedure for collaboration with family and friends −>
A) in case of hospitalisation of a patient
B) in case of institutionalisation of a patient
C) upon discharge, considering confidentiality requirements/waiver
−> These measures enable family members and friends to contribute their lived experience and clarify the areas of responsibility of the three perspectives involved (patient, family member/friend, healthcare professional) with the central question: Who is responsible for whom, for what and, most important, for how long?
By answering these questions, we explore the possibilities and limits of each area of responsibility, build trust, and strengthen the self-efficacy of the whole network.
Source: G. Weißenborn – Lecture at the Aktion Psychisch Kranke Dialogue- Impulses for quality management in hospitals
Recommendations for Hospital Quality Management
A. Procedure for collaboration with family and friends in case of hospitalisation of a patient (confidentiality requirement/waiver)
1. Collaboration with family and friends is an integral part of the wards’ concepts and the quality standards of the clinic.
2. The starting point for collaboration is a holistic approach: We treat each other as partners. The aim is to talk to each other, preferably in the form of network counselling. The clinic offers a suitable framework for such counselling. This also applies in coercive situations such as restraint, compulsory medication, institutionalization or appointment of a legal guardian. The basic principle of a partnership-based approach continues to apply. This means that persons of trust should be involved in coercive situations if the patient and their family members/friends consider this to be appropriate. Subsequent reflection should also be done together.
3. During the admission interview with the patient, ask about (minor) family members and explain the clinic's concept for involving family and friends to the patient.
4. Information and education for family and friends:
4.1. At the beginning of the treatment, both the patient and their family/friends will be informed of who will be the responsible contact person (primary nurse, psychologist, doctor).
4.2. Consultations with the patient and the designated family member/friend will take place shortly after admission and discharge, as well as whenever necessary (network counselling). The involvement of underage family members and their specific concerns must be addressed separately.
4.3. The following will be addressed in a joint consultation:
a. It is made clear who is responsible for what (laws, procedural instructions, responsibilities, imminent danger, expectations -> from the perspective of staff, patients, family and friends including any underage family members)
b. Measures taken or planned
c. Discharge and transfer arrangements
d. Initiated connection to outpatient/complementary structures
e. Post-hospitalisation housing and work situation
f. Confidentiality waiver for clearly defined cases:
− This waiver vis-à-vis specifically designated persons should be clarified with the patient as early as possible.
− The waiver may also cover specific aspects. These could comprise information about admission, transfer or discharge, about the client’s health problem and condition, or a joint exchange about treatment and target planning.
− If a patient refuses to release the clinic from the confidentiality requirement towards third parties, this will be communicated to the family members and friends upon request. At a later stage, the confidentiality waiver will be discussed again with the patient, and the clinic’s concept explained.
5. In order to protect the personal rights of family members and friends and to address their specific concerns, they require further information and reflection on their situation for their own relief -> see 4.3. b-e
Particular attention must be paid to the needs and concerns of minor children with single parents suffering from mental health problems (measures must be taken).
6. Third-party anamnestic information provided by family and friends is marked separately in the medical history and in the doctor's letter. It should be ensured that this information is only used in the interests of the patient and their family members and friends.
If the patient does not currently wish to release the clinic staff from their duty of confidentiality towards third parties, the staff are, of course, bound by this duty.
In the interest of quality assurance, the ward will continue to seek collaboration with family and friends.
7. If contact between the patient and their family and friends is currently impossible, or if the patient does not waive confidentiality with regard to their family and friends, the latter still have the right to consult with health professionals regarding matters such as:
a. appointment of a clinic contact person outside the treatment team (clarify who is responsible for acting as a contact for family and friends)
b. comprehensive information on the mental health condition/disorder and related medical, social and legal issues (empowerment)
c. asking about and confirming family and friends’ own perceptions
d. finding (further) contact options/support/networks (in-house groups of family members and friends, information on self-help groups, information on self-help structures in Berlin, information on ApK Berlin, contact referral etc. via social worker etc.)
e. how to deal with the situation
8. The clinic also provides regular general information for family and friends
9. The clinic gives the relatives and friends’ association ApK Berlin the opportunity to provide information about its services on the clinic’s premises and to offer independent advice, if necessary.
10. In order to meet the requirement to cooperate with family and friends, the clinic staff are trained once a year by ApK Berlin.
11. Review of quality standardsB. Procedure for collaboration with family and friends in the event of institutionalisation of the patient
1.1 In the event of institutionalisation in accordance with the provisions of PsychKG (Mental Health Act):
The patient is given the opportunity to notify and involve a person they trust.
Collaboration with family and friends in the respective legal situation of consent to the release from confidentiality (paragraphs A.4–10) and in the event of refusal to release from confidentiality (paragraphs A.5–10).
1.2 In the event of institutionalisation in accordance with BGB (German Civil Code):
The patient is given the opportunity to notify and involve a person they trust.
All matters relating to treatment (leaving the premises, escapes, medication, discharge, etc.) must be discussed with the legal guardian, provided that they have the relevant responsibilities. (This must be verified.)Collaboration with family and friends in the respective legal situation of consent to the release from confidentiality (paragraphs A.4–10) and in the event of refusal to release from confidentiality (paragraphs A.5–10).
C. Procedure for collaboration with family and friends for diagnostic purposes (clinic-centred): Collection of third-party medical history
Third-party medical history with confidentiality waiver
− see also paragraph A.6 above. Third-party anamnestic information provided by family and friends is marked separately in the medical history and in the doctor's letter. It should be ensured that this information is only used in the interests of the patient and their family members and friends.
Third-party medical history even without the patient's confidentiality waiver
− The clinic/staff has its own reasons for collecting third-party medical history without the patient's release from confidentiality.
Contact with family and friends for this reason must be distinguished from the quality standard of collaboration with family and friends, which includes the goal of empowerment. Paragraph A.6 must be observed.D. Procedure for collaboration with family and friends for patient therapy in case of a confidentiality waiver
• Offer family and friends to attend the ward round, with due consideration of their concerns
• Joint consultation with the attending physician, ideally in a trialogue format
• Prefer network counselling / Open Dialogue
• Inform family and friends about the treatment agreement between the patient and the clinic
• Joint preparation of the hospital discharge processE. Procedure regarding services for family and friends in the clinic:
Collaboration with/without confidentiality waiver
• Contact point / contact person in the hospital
• Dialogue-based, cross-indication support groups facilitated by families and friends (recovery seminar)
• Inform about possible future emergencies (contacting the police, institutionalisation according to PsychKG and BGB)
• Services in collaboration with Apk Berlin (independent advice)
• Self-help group in the district (ApK Berlin)F. Information and contact
• On ApK Berlin (Association of relatives and friends of people with mental health problems in Berlin) www.apk-berlin.de
• Self-help groups throughout Berlin/Self-help contact and information centre Berlin (Sekis) https://www.sekis-berlin.de
• Children of parents with mental health problems https://www.netz-und-boden.de
• EUTB: EUTB-Neukölln https://gut-beraten.berlin/
• Information/flyer
© ApK Berlin Gudrun Weißenborn