Hospices in Slovenia - breaking the taboos around death

The Slovenian Hospice is a non-governmental, non-profit humanitarian organisation caring for patients - and the families of patients - facing a life-threatening illness. It tries to meet the physical, emotional, and social needs of the person who is dying and of their loved ones. It's a free service and helps people at home or in hospital. Ksenija Samardzija-Matul visited the hospice in Slovenia's second largest city - Maribor:

Breaking the taboos around death is another issue tackled by hospices in Slovenia with the aim of shaping a more natural relationship to death - something that was normal when people were more closely connected to nature. Staff of hospices turn to children by visiting schools and preparing workshops entitled 'circle of life' where pupils can talk about disease, severe illness and death, and there are training courses for the broader public on how to talk to dying people and how to cope during the process of mourning. Breaking taboos is extremely important for the professional staff as well, because they can only help if they overcome their fears and their denials to develop a true and close human bond. Therefore the staff itself has regular supervised sessions where they can talk about their experience and the emotional problems they encounter during their work.

The driving force behind hospices is the desire to transform the experience of dying. The terminally ill are comforted by volunteers who are trained in how to talk and how to listen to them. Professional medical care is given and symptom relief provided. In what way the medical team, social workers and volunteers help depends on the patient's individual wishes and family's needs. I visited the hospice in Maribor and talked to its director, Majda Brumec. I immediately felt comfortable in the friendly rooms where many family members meet with the staff of the hospice to talk about their fears. I asked Majda Brumec how families come into contact with the hospice:

"The patient's physician, friends or other family members advise them to contact us. People in distress need either emotional help or organizational support at home and often the family members are not sure whether or not they are able to take care of the dying. The nurse visits the patient whenever he or she is in need; it depends on the condition of the patient. In the last days a nurse will go and visit the dying patient twice a day if necessary. A volunteer usually spends 8 to 10 hours per week with the family."

Hospices regard dying as a normal process and neither hasten death nor prolong life artificially. The goal of the hospice team is to be sensitive to the special requirements of each individual and family. Care for the terminally ill typically involves a physician, a nurse, a social worker and a volunteer. The hospice nurse makes regularly scheduled visits to the patient, social workers provide assistance with practical and financial concerns as well as emotional support. However the work of the volunteers should not be underestimated.

I talked to Vesna Zigon one of the volunteers in the hospice in Maribor and asked her about her motivation to work for the hospice:

"The motive for me to be a volunteer at the hospice is actually to help people. I like people and so I want to be close to them. Disease and death are things that we try to avoid in everyday life and I believe that it is important to be human to fellow men during their hardest moments."

It is obvious that not everyone can become a volunteer. The selection has to be carefully made and the person wanting to become a volunteer must be mentally stable and strong. I asked Vesna whether she knew she would be capable of helping:

"Before I started the training programme for volunteers I was not sure that I will be able to do it. But my confidence grew with every week. It is a learning process and a form of personal growth, and of course it changes ones personal relationship to illness, dying and death, as well as ones attitude towards life itself as the basic philosophy of hospice is life."

The training of volunteers is a gradual and gentle process stretching over 11 weeks. The future volunteers meet once a week to discuss several issues: first they have to clarify how they themselves feel towards dying, death and life, and then they learn how to communicate and listen to people. At the end of the training process they have to decide whether they feel strong enough to be a volunteer working with dying patients and supporting their families.

The staff of the hospice only take care of the patient in the last months of his or her life. At the point when the patient's physician decides that the illness can no longer be actively treated, the hospice takes over. It is important not just to take care of the dying is, but also to help the family members who are under a lot of stress. Majda Brumec the head of the hospice in Maribor explains:

"We are aware of the needs of the family members and often they need to talk to someone with the patient being present. They need a lot of support and we let them know they will be able to manage the situation. The care for the family starts even before the patient has died. There is mourning before the actual death. We let them mourn we listen to them, we do not teach or direct them how they should behave."

The hospice staff also provides help for the families after their family member has died, by visiting them and offering programmes of mourning and support groups, which meet once a month, or they offer individual counselling. A fact that is often forgotten is that children mourn, too. Hospices in Slovenia provide for children's needs by organizing creative workshops and individual counselling. Twice a year they even organize a camp for children and this has been quite a success: Majda Brumec:

"These camps, which are well received, help children, who are often neglected in the process of mourning. We forget that children mourn, not only when they loose a parent but also when they loose their grandparents, a brother or a friend."

At the end of our talk I asked Majda Brumec if it is at all possible to be prepared for death:

"It would be an illusion to think that we can prepare ourselves or every patient for death but we allow them to go their own way in coping with dying and death and this is our major task. Older people in general are more prepared as death is a logical consequence to them, and also for the staff it is easier to accept."