When a family member has to be treated for severe brain damage, this is also a difficult situation for relatives, who are usually unprepared. For relatives of patients in the neurointensive care unit and in early rehabilitation, it can be very helpful to have a family counselor at their side as their main point of contact. Dr. med. Volker Ziegler, Clinic for Early Neurological Rehabilitation and Neurological Intensive Care Medicine Rhön-Klinikum Campus Bad Neustadt, and his team will provide insights into how relatives can be personally involved in therapy and care from admission through the hospital stay to discharge.

What help can family care offer if a family member is in a neurointensive care unit or has to be treated in early rehabilitation?

Dr. Ziegler: It is a particularly difficult situation for relatives, as patients in the intensive care unit are often ventilated and, at least at the beginning, are not aware of what is happening to them. This makes it all the more important to “pick up the relatives and take them along”.

Seeliger: First of all, we have to point out that very few of our patients’ relatives come from the immediate vicinity of Bad Neustadt/Saale. Daily visits are often not possible due to the long distances involved. We actively contact the relatives and involve them in the treatment from the very first day. We deliberately only do this after the patient has been admitted and we have met them in person. We could be described as guides at the side of the relatives during the clinical stay.

Anding: The relatives’ advisor provides important information about how to reach her, the necessary contact details, structures and processes as well as the services offered by the hospital, such as pastoral care. For example, she explains the phase model of neurological rehabilitation, i.e. phase A + B hospital, phase C + D rehabilitation in the actual sense. We give the feeling that we are interested in the patient and their situation, not just a case.

Relatives of patients in an acute situation are in an exceptional situation. What support do you offer for relatives?

Seeliger: The first thing we need to do is find out whether the patient has made provisions for the situation that has arisen. In other words, is there a power of attorney or living will? The joint compilation of the ICF-related social anamnesis not only serves to obtain information about the patient before admission to hospital, but also to determine the support needs of the relatives. The planning and structuring of e.g. planned medical consultations creates trust and no relative has the feeling of wandering through the clinic in search of information.

Schlegel: Relatives receive information material on how to deal with our patients. We offer them nursing and therapeutic instructions so that they can take over small parts of the process themselves. This means that relatives are not helpless at the bedside, but have the feeling that they can do something themselves. Relatives have the opportunity to contact us at any time and talk to us, sometimes several times a day, to relieve their burden.

What are the advantages of family counseling as an integral part of your clinic for the processes and those involved in medicine and nursing?

Dr. Ziegler: The relatives have a fixed contact person who is there to answer all questions and problems. Many minor issues that relatives often want to clarify in a doctor’s consultation can be dealt with without a doctor. Medical consultations are planned with sufficient time and can essentially be limited to the medical content. The doctor can concentrate on the medical issues, as the other problems have usually already been discussed and dealt with. Calls to the ward are considerably reduced and nursing care is not interrupted.

Seeliger: Interdisciplinary exchange is an important part of our work. Information about the patient is equally visible to all members of the team – nursing, doctors, therapists, social services – and can be included in the process. The patient’s relatives are sometimes very insecure and have many questions or problems. The fixed contact person can also have a very de-escalating effect and problems can be dealt with promptly. A good example of this would be the organization of a relatives’ guide in early rehabilitation with a formulated goal. This makes it easier for the team to adapt to the needs of relatives and act accordingly. Other examples would be the involvement of the hospital chaplaincy or the scheduling of medical consultations.

Anding: Visits can be planned individually, taking into account the private situation of the relatives, for example visits with underage children. Therapies are planned in such a way that the tracheostomy tube is unblocked immediately before an announced visit so that the patient can talk to their relatives.

Schlegel: The social anamnesis enables all professional groups involved to better understand and respond to the private, family and social life situation and the family’s reactions, thus avoiding unintended conflicts.

How are the family care services accepted?

Dr. Ziegler: In my conversations with relatives, I always hear that the processes in the clinic are very structured thanks to the relatives’ advisory service and that the relatives have a contact person who can help them.

Seeliger: The family counseling services are well received, as it has been a constant normality for the relatives since the day they were admitted to us. Relatives feel that their problems and fears are taken seriously. The relatives’ consultation also makes life easier for the interdisciplinary team. Problems on our part can be solved promptly and actively. This leads to greater mutual understanding. The fact that the relatives rate the care for relatives as very useful and sensible can be seen from the positive feedback, even after the patient has been discharged.

With regard to emotional stress, existential questions, therapeutic decisions –
what are the biggest challenges in caring for relatives?

Dr. Ziegler: A major problem is understanding the clinical picture and the resulting disability. In addition, there is the acceptance that nothing is as it was before. It can’t be what it shouldn’t be. Teaching them that everything is different now is always a challenging task. If the illness of the relative is at least understood, even if not accepted, further matters can be discussed. Perhaps there is a living will and a clearly defined patient’s wishes. Is it necessary to discuss a change in treatment goals? What happens after the hospital stay? Is care at home possible or do you have to look for a nursing home?

Seeliger: We can’t take the emotional burden off the relatives. We can only try to provide them with sufficient information and support them according to their needs. If, for example, there is a living will, the relatives can, so to speak, adhere to the patient’s formulated wishes. As a relationship of trust has usually been established since admission, relatives are often able to talk to us about their fears and give free rein to their emotions. Together with the team, we then create the opportunity for the relatives to accompany the patient with dignity if they wish. Fears about the future can be dealt with promptly, for example by involving the social services to provide information about the possibilities of the post-inpatient concept.

Anding/Schlegel : Keeping to our time management is always a challenge. Some relatives need a lot of communication in order to recognize and accept the illness and the problems it causes. Young patients with young families, especially with small children, are very time-consuming. Involving them is difficult both emotionally and in the child-friendly presentation. Intercultural conflicts often make our work more difficult. Relatives’ expectations of the clinic are becoming ever higher, not only in medical terms, but above all in non-medical, social terms – interpreters, laundry, care and therapists in the mother tongue are expected, care only by women or men, consideration of their own culture of dying.
Another problem is dealing with feelings of guilt and accusations on the part of relatives towards the clinic, but also towards themselves. We must not just appease them, because they are there for the relatives. In the case of self-accusations, we should be aware of the problem and try to refute them with medical arguments if necessary.

In your experience, which measures for supporting relatives of patients in intensive care units and in early neurological rehabilitation have proven to be particularly useful?

Dr. Ziegler: Just having the same contact person for relatives is a great relief. General questions are answered immediately and relatives have the feeling that the patient is being looked after. The relatives’ questions and problems are forwarded in a channeled manner so that these questions are answered competently by the responsible persons. However, every further hospital reform with the aim of saving money makes it more difficult to finance advice for relatives.

Seeliger: We developed the concept of family counseling based on our work with relatives of patients in intensive care or early neurological rehabilitation. It is not a static concept, but has been and continues to be developed flexibly. In any case, active contact has proved to be very useful. Relatives are told straight away how the process is structured and what personal items are required for the inpatient stay. Of course, this concept also makes it possible to find out very quickly if a patient has no relatives or if there are relatives who are unable to look after the patient. In this case, a completely different support structure must be developed for the patient.

Anding/Schlegel: There is a password system to enable relatives to obtain information by telephone. The authorized contact person assigns an individual password for each patient. This gives the authorized relatives the opportunity to control the group of persons entitled to receive information themselves. Only those who know the password receive information. Another important point in the support of relatives is the guidance of relatives. This involves arranging a day of support with care and therapy so that relatives can see and feel whether they can cope with the real situation.

Why is support for relatives important for patients in all phases – during healing, recovery, care and longer-term rehabilitation?

Dr. Ziegler: Family counseling guides and accompanies relatives through the illness and healing process. Questions and problems are taken on board, passed on and solved where possible. Even in times when we can only provide nursing and medical care with international staff, relatives have a contact person who understands them and tries to find a solution. This has considerably reduced the number of complaints from relatives.

Seeliger: Advice for relatives is necessary if the patient remains in a persistent state of not being able to look after themselves. A good example of this is the development of the post-inpatient concept, which would not be possible without relatives or authorized representatives.

_{Editorial office: X-Press Journalistenbüro GbR}

Gender note. The personal designations used in this text always refer equally to female, male and diverse persons. Double/triple references and gendered designations are avoided in favor of better readability.