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Talking Head with Magdalene Schmitt and Annika Schwarzer, from The Barenherz Foundation, Germany

18 Mar 09:00 by Nicolai von Steinaecker and Sven Laacks

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The Laurence Simons Search Talking Head Series continues with a very special interview with Mrs. Magdalene Schmitt, Head of Children's Hospice and Outpatient Services and Mrs. Annika Schwarzer,  Children's Nurse, from The Bärenherz ‚‘‘Bear Heart‘‘ Foundation in Germany.

This amazing place is particularly close to our German team's heart. The heartfelt letter of thanks for our Christmas donation at the end of last year prompted personal contact and created a strong desire for our German team to focus on this incredibly important work at the Wiesbaden Children's Hospice Bärenherz.

Our Frankfurt based Directors, Nicolai von Steinaecker, and Sven Laacks, find out more about the daily work, how the Centre has been affected by the Coronavirus pandemic and what the future holds.   

LSS: Hello Annika, and Magdalene.  Thank you very much for taking the time to talk to us today. Please may we start with finding out more about Bärenherz and how you came to the facility?

MS: I have been working at Bärenherz for over 15 years.  I started the role accompanying the families of the sick children in the inpatient children's hospice, and then built up the outpatient services of Bärenherz. I currently run the inpatient children's hospice in Wiesbaden and the outpatient services.

My interest in children's hospice work was originally based on an encounter many years ago in an adult hospice in Marburg. At that time, the hospice work in Germany was still very unknown and the first hospices something completely new. As part of my work in an outpatient clinic of an adult psychiatry, I had visited a terminally patient I had known for a long time to say goodbye to her. I was inspired by the loving, deeply humane treatment of the hospice staff with the patient. It was this moving experience that inspired my interest in hospice work.

AS: I am 27 years old and I have been working at the Bear Heart since the Summer of 2018. I love the variety of my daily work, the care given to the children, as well as the contact and exchange with the families. I feel that I grow professionally every day at Bärenherz, and despite the physically and mentally strenuous work, this is a place where there is a lot of laughter.

LSS: Thank you.  How many people work at the Bear Heart?

MS: Our children's hospice, the actual nursing home and the outpatient services consists of more than 80 permanent colleagues.  There are also about 90 volunteers, without which our everyday life would not be possible. In addition to a few permanent employees, the Bärenherz  Foundation  also  employs volunteers.

LSS: This is much more than we thought, a medium-sized company!  You mentioned the Foundation, how does funding work for this important service?  

MS: It was a tough fight in the beginning, but we have achieved a lot over the years. At the end of the 1990s the first children's hospice was built in Olpe, in Germany. Bärenherz opened in 2002 as the second children's hospice a little later, and it was not clear at first how the services provided could be billed. Only after several years was the legal basis created to confirm contracts with the health insurance funds. Currently we have a grant for about half of our costs from our foundation and the other half of the costs incurred are usually borne by health insurance funds. Our institution has been in existence since 2002 and we are fortunate that the previous association, today the Bärenherz  Foundation, was able to receive start-up funding for the first few years, through which the construction of the hospice was also covered.

LSS: Please can you tell us more about the services Bärenherz offers to children and their families?

AS: We not only aim to provide the best possible medical care for the sick child, who sometimes have a very short lifespan, but we also support the whole family with special palliative care. This regularly leads to the fact that parents or siblings are accommodated in the hospice and we also take care of these family members. Sibling children usually sit on the sidelines, as the focus of the parents is mostly on the sick child. In such situations, the family is completely shocked, and it is really devastating for all involved.  We always offer our support, the parents then decide which form of help they may wish to take. We aim to bring some normality back into the everyday life of the families, this may also consist in providing guidance for home care or psychological assistance.

LSS: It says on your website about the children and their families are accepted regardless of their culture, origin, or religion. Do you notice any differences in this regard?

AS: Actually, hardly – at least not any differences that influence our work.   The situation creates a community of fate that quickly evaporates cultural, religious, or even linguistic barriers. It is clear that in some cultures there is a firmer, or at least a much more perceptible cohesion, within the family.   It is quite interesting to see how the farewell is handled. Sometimes religious guidelines in terms of burial, the addition of medication or even the role of men and women in everyday life challenge us, but we always try to take ourselves back here. This is the basic attitude of our hospice, to ask what the parents or the child needs, and not to dictate how it must be. There is sometimes a fine line between what the child receives and how the parents endure the situation.  After all, it is the parents and the siblings who sadly have to deal with this for the rest of their lives.

LSS: Do you receive enough feedback on your work, in a private or social environment? Do you feel it is valued enough?

AS: Firstly, with social recognition, I am already held in high esteem, especially from former colleagues who work in a normal clinic or nursing home. Working in palliative care for children is highly regarded and personally rewarding, however it is also a mental and occasionally physical effort. Therefore, a little more appreciation would be very desirable.

MS: Interestingly, I recently read a study that reported on the increased interest of young people in palliative care. However, this is not primarily due to the altruism of the young generation but is talking about crisis-resistant jobs! But why not? There is already a struggle for nurses in some places, even if we, as an employer, are certainly still doing comparatively well. But it is true what Annika is referring too, the clapping in the first wave of the pandemic was a nice sign, but many nurses struggle to pay the rent in the expensive Rhine-Main area. The so-called Coronavirus bonus was a good start, but we should think about how we can permanently increase salaries in care.

LSS: How does Coronavirus hinder your daily work?

AS: Well, on the one hand, due to the hygiene requirements in a nursing home, we simply have less capacity at the Centre.  It is the barrier of the mask that hurts me the most, so much of body language is lost through the mask, and I hate not smiling for my little patients right now! But we have to pay 110% attention to hygiene as most children at the Bärenherz are terminally ill an additional infection can quickly result in death.

LSS: In the last few months, has there been any moments that have affected you more than your day-to-day roles, or even a ray of light in your routines?

AS: Unfortunately, the whole last year, and especially the last two months, have been very stressful for our team as we have accompanied many parents close to each other palliatively.  But we received a boost just today, a little boy born in September last year has successfully managed a very serious operation and has therefore been stabilized. He was born with an almost "open head", and even if his chances are still in the stars, these small successes give you courage and confidence. To parents as well as us.

LSS: Please can you tell us more about how the name Bärenherz was decided upon?

MS: The name had not been planned at all from the beginning. To begin with, the Centre was going to be named Löwenherz and a little mascot of a Lion was drawn.  Then we noticed a name conflict with a facility from Northern Germany, so we asked our graphic designer to turn the lion into a bear. We like the bear very much, it is an impressive animal, and the children we accompany and provide for, are often great fighters. Getting to know them is always a gift for your own life.

LSS: You mentioned your many volunteers at the beginning of the conversation. How can people get involved at Bärenherz?

MS: Well, the possibilities are very versatile. Volunteers accompany a sick child or his siblings in the outpatient children's and youth hospice service and regularly visit them at home. Others support us in day-to-day inpatient life, help with events, or look after smaller siblings when the parents come to a consultation appointment. To volunteer in direct work with the families you will first attend a preparatory course in which the topics important for the work are addressed. But even those who do not regularly find the time to get involved, are always welcome to decorate our fir tree, to paint walls or to maintain our flower boxes or outdoor facilities. We are not picky! Many people also help us by planning and carrying out actions for Bärenherz or raise awareness to others about our work.

LSS: One final question to both of you: what would be your greatest wish for this year?

AS: I would like to finally be able to remove the mask and work with my smile again!

MS: I can only agree with that! And I personally also lack the closeness that is so important in our profession.  

LSS: Thank you so much for your time, and the many insights you have given us. Please do stay healthy, you are both doing really an incredible important and great work. Thank you very much.

For more information please visit www.baerenherz.de/de/