Delve into the world of peadiatric palliative care and innovation with an insightful interview featuring Professor Boris Zernikow, MD.
Boris, thank you very much for the opportunity to talk to you about the following two topics: the founding and development of the first German Children's Palliative Centre in Datteln under your direction, and the upcoming eleventh Datteln Children's Pain Days, which will take place in March 2024, with the theme 'Human, Digital, Sustainable'.
In 2010, you opened the first centre in Germany for paediatric palliative care. The centre has been offering inpatient and outpatient palliative care since the beginning and is affiliated with the Datteln Children's Hospital, with an integrated education centre. Back then, when you were developing the project, you decided to have direct contact with the children's hospital. What are the advantages of this – and are there any disadvantages?
"The paediatric palliative care centre is home to an 8-bed palliative care unit for children, adolescents, and young adults. It is not a free-standing children’s hospice, even though it might look like one at first glance. Every single room of our paediatric palliative care unit has private access to the garden, the rooms are spacious, and parents can have their own bed in their child’s room if desired. Additionally, we offer a parent’s apartment on the first floor. These services are very similar to a free-standing hospice. But, in contrast to hospice care, the rooms are equipped like a paediatric intensive care unit. Many patients need ventilation – invasive and non-invasive – they suffer from complex epilepsies or other burdensome symptoms and need medically intensive treatments. Patients and families also receive specialised psychological and nursing care to manage their symptoms. Once the symptoms are under control, patients are discharged; they return home or go to another hospital or to a nursing home. Without the direct, daily, and intensive support of the departments of Neuropaediatrics, Gastroenterology, Radiology, Oncology, Intensive Care and Neonatology, Nutrition, Surgery, Neurosurgery, and others, we could not provide the complex care needed for those patients. Adult palliative care might be characterised by “low technology and high personality”, but paediatric palliative care is best described as “high personality and high technology”. That is why the close linkage with the children’s hospital is extremely important."
In some countries, there are independent organisations such as children's hospices. A change is taking place in Europe: while the first children's hospices are being established in some countries, they are being closed in other countries. What are your thoughts on this? To what extent can successful models from one European country be transferred to other countries?
"For most of their lifetime, children with long-standing, life-limiting conditions live at home. First of all, home care must be available nationwide and around the clock, in some regions with the help of modern technology. However, families often need more, such as respite time during the long illness journey and support at the end of life. Freestanding paediatric hospices are extremely important to offer both respite and end-of-life care for eligible families. They also have a political and psychological role, duty, and mission. They often are the starting point of a nationwide movement to improve paediatric palliative care and may symbolize the needs of the families. They might even provide a basis for further development in the country or region. However, freestanding hospices should be integrated into the nationwide network of paediatric palliative care. There should be a balance between this and other important services. Some countries have many (perhaps too many) freestanding hospices yet have huge deficits in home care or perinatal palliative care in hospitals."
Returning to your centre for paediatric palliative care. It has grown significantly in recent years. Recently, you opened an extension on the roof of the original building, including an operating wing. When and why did you take this step? Did you consider adding another floor to the building when you first started planning the centre? Can you provide an overview of what has changed since then?
"We have been working in the paediatric palliative care centre for more than 10 years and we are extremely grateful for all the support we have received and continue to receive. During the last 10 years the catchment area has grown incredibly. Patients from all over Germany are transferred to the paediatric palliative centre. These patients and their families are becoming more complex – medically, because they suffer from rare conditions, but also because there are constantly new treatment options being developed like gene therapies or medical devices that need to be discussed with families.
We are also facing more and more psychosocial challenges. We care for families from all over the world, such as refugees or immigrants in our country; many of them do not speak German, requiring us to learn a lot about their culture to effectively help them. When we initially planned the PPC-Centre, we had already considered adding a third floor, but not an operating theatre. This became necessary as many of our patients have multidrug-resistant organisms, requiring extremely complex medical care and regular operations, such as the implantation of a baclofen pump or fracture stabilization. Additionally, we offer dental care under general anaesthesia for non-compliant children, adolescents, and young adults with complex conditions, as well as performing stressful or painful medical procedures under general anaesthesia. The new operating area may save patients from having to be transported to other hospitals, reducing stress for patients, their families, and us as care providers."
Take us inside the centre. What would a patient and their close ones encounter?
"First and foremost, admission to our centre is well organized. You or your case coordinator would have filled out a questionnaire and sent us all the necessary documentation, so the team is well-informed about you and your child. Fresh flowers are on a table when you enter the building, and a multidisciplinary team welcomes you for the admission talk. The team consists of at least a registered and specialised nurse who is responsible for your child during their stay, the attending physician, and a psychologist. Together, the goals of inpatient treatment are discussed and written on a flipchart. Your child’s room is prepared, offering you and your child a free view of the garden. Later, you might meet with art therapists, music therapists, occupational therapists, physical therapists, or a dog therapist. A volunteer might invite you and your child to dinner or offer to take care of your child to give you a break. The team will work with you to plan the week and the daily therapies. Depending on the medical, psychological, or social challenges you and your child face, several experts will be involved in the treatment. Every day, the treatment and progress will be discussed with you and your child. Once a week, there is a 1-2 hour family session with the multiprofessional team. Volunteers will offer different free time slot options. In the second week, as parents, you might decide to spent time outside the PPC unit, perhaps at home or in your apartment. Modifications in medicine, therapies, or handling will be discussed and practiced to ensure they can be implemented at home. Before discharge, home care will be discussed extensively with you, and help from a specialised paediatric palliative home care team offered."
Your centre is a flagship for comprehensive patient care, including those close to the patients. Specialists from a wide variety of professions work together on equal footing. What can you share with organisations in other countries that would also like to work more holistically?
"From my perspective, working holistically means that every team member is valued equally. Traditionally, medicine has been physician-focused, considering registered nurses as the second important group. Psychologists, spiritual workers, or volunteers are often given less importance. Working holistically in paediatric palliative care means sharing the power – physicians in particular need to embrace this concept. Integrating different viewpoints and perspectives on the patient and family into a cohesive care plan requires honest and respectful communication with each other. Sometimes, physicians need to learn to step back a bit. Professional supervision can help during this process."
Funding for paediatric palliative care remains a challenge among EAPC members. You have been extraordinarily successful in fundraising. Please share with us how it is possible to financially secure a holistic service, such as art/music therapy, etc. How can one reduce dependence on donations?
"The world is extremely complex and rapid changes are the rule, not the exception. It is wise to have several sources to finance a paediatric palliative care team – a combination of regular income and donations. Being reliant on donations means constant communication with the community and your donors about what you are doing regarding paediatric palliative care or hospice care. That is a positive side effect of charity work. To secure regular income, you might have to work on a higher level – engaging with the communities in your university or hospital, addressing politicians or other leaders and decision makers. Both finance sources can synergize positively. Charity can help create and strengthen a professional person – which can be particularly beneficial if this person is a physician who symbolizes the topic and who stands for PPC. A well-recognized expert might have a better chance of securing regular funding for parts of PPC.
A last idea: PPC providers tend to expand their services and personnel each year by offering additional education, sibling projects, new bereavement groups, and by hiring multiple specialists like psychologists, social workers, etc. Instead of focusing only on the sustainability of their original unique service, consider collaborating with other providers for additional services. The latter could promote a more balanced growth strategy."
Your centre is also known for its focus on siblings. How did you create the necessary resources (financial, staffing, etc.) and how do you maintain them?
"We started our sibling project nearly 20 years ago, in 2004, and focused on fundraising specifically for this group. We decided to forego developing our own volunteer or bereavement groups. Meanwhile, we established our own fundraising department and, luckily, maintaining support for the SisBroJect is no longer a challenge."
The issue of a shortage of skilled workers is prevalent in many countries. Is this also a concern at your centre in Datteln?
"Yes, it has become harder and harder to recruit experienced nurses, physicians, psychologists, and social workers with the right PPC spirit. It helps to be a centre which offers continuing education, but there is intense competition among the various PPC employers. Our centre cannot necessarily offer a higher salary, shorter working hours, or free weekends and nights. So, what can we do? Currently, we run a huge campaign about our team’s attitudes and ethical values. As a team we have discussed and developed 10 attitudes that describe our team. For example, the third attitude is “love is the foundation of our work” and the seventh is “emotions are welcome in the team”. For each attitude we run a campaign featuring a team member’s photo, a video interview on social media, detailed explanations, and an article in the local press. This campaign is now followed by job advertisements."
What challenges are you currently facing (at your centre)?
"A few months ago, the CEO of our children’s hospital was replaced. Naturally, this requires organizational adaptations, which is always a challenge. We are also experiencing an increasing number of patients migrating from other countries and cultures. This is incredibly enlightening but also a challenge. Moreover, each year the number of patients requiring artificial ventilation is growing, and the number of patients transitioning to adult care is increasing. Both pose substantial challenges."
How has the range of paediatric palliative care in Germany evolved since the first paediatric palliative care centre was founded in 2010?
"Nowadays, nationwide free-standing children`s hospices, children and adolescent’s hospice home services, and specialised paediatric palliative home care services are available and funded by insurance companies. In Germany, we have three in-hospital paediatric palliative care units and several teams within large hospitals. What is still missing is a nationwide structured transfer service to adult care for young adults with special healthcare needs, residential groups for young adults with life-limiting conditions, and perinatal palliative care."
Datteln is also very well known for the Datteln Children's Pain Days, launched 20 years ago and now a 6-country congress. Due to the Covid-19 pandemic, it was postponed to spring 2024. Please give us a little insight into the program.
"That is a challenge. We have more than 100 talks and workshops, along with two groups visiting the Paediatric Palliative Care Center, where we also run workshops. The general theme of the congress is “HUMAN, DIGITAL, SUSTAINABLE”, featuring three separate sessions with three talks per session within this overall theme. One session, “DIGITAL”, focuses on topics like “Pain Apps”, “Palliative care and Telemedicine”, and “Telemedicine and Human closeness”. The congress encompasses nearly all aspects of paediatric pain and palliative care, from neonatal pain and advance care planning to paediatric chronic pain management, or workshops on psychiatric co-morbidities in adolescents with Duchenne Muscular Dystrophy. We cater to various professions and volunteers, culminating in a huge party on Friday evening – that is the part of the conference many people like most! Overall, we expect more than 1000 participants."
The congress, which covers current topics, will be conducted in German. However, the interest in the conference extends beyond German-speaking regions. Is there a way for our non-German speaking colleagues to access the congress?
"Regarding non-German speakers: learn German! It’s easier than you think! We once tried to run the congress in two languages but found that congresses run in English do not really work when they are organized in Germany."
To finish, please share with our colleagues: what you consider essential for the further establishment of paediatric palliative care?
"On one hand, the prevalence of children and adolescents with severe chronic and life-limiting conditions is rising, and these patients are becoming more complex. On the other hand, we are facing a shortage of experienced professionals in PPC. To further develop PPC in Europe it is essential to move beyond fragmenting services and instead bring them together under one common roof of complex care in paediatrics. This means that for artificially ventilated children living at home or children with life-threatening cancer in active oncological treatment who have different care needs, it might be wise to bring these different care challenges together and share resources. Another potential future development could be that PPC teams “officially” care for young adults with chronic complex conditions that originated in childhood. The third statement focuses on research – we urgently need high-quality research in PPC that includes cutting-edge research questions, that utilise defined research methodologies like lab studies, and that include prospective drug trials that follow the EU pharmaceutical legislation."
An informational movie
The Kinderpalliativzentrum Datteln has has produced an informational film in which they show what they think pediatric palliative care should look like. This video is available in 5 languages (German, English, Arabic, Turkish and Ukrainian) and explains, in a straightforward and engaging manner, the diverse services available in children's hospices and paediatric palliative care in Germany. It outlines where families can find assistance in coping with the situation and caring for their child.
Thank you very much!
Interview questions by Meggi Schuiling-Otten (Director of the Dutch Centre of Expertise in Children's Palliative Care) and Deborah Gubler (Paediatric Palliative Care, University Children's Hospital Zurich).