Dagmar Center of Excellence in pediatric palliative care
In recognition of children with life-limiting conditions who, like shooting stars, shine bright but are gone far too soon.
Our Core Mission is to provide in a home-from-home environment free of charge, offering expert nursing and medical care, including the management of difficult symptoms, for children and adolescents at end of life, alongside practical and emotional support for their families.
Sadly, not every child is able to be cured or recover from a serious illness. Sometimes a disease or condition continues to worsen, despite every attempt by the medical community to help the child get better. Other times, a successful cure might not be available when an illness is too widespread or severe.
When this happens, the primary aim of a child’s care shifts from seeking a cure to making the child more physically and emotionally comfortable and as free from pain as possible. This is known as palliative care. Hospice care is a specific type of palliative care that helps children and families cope with terminal illness compared to the care a hospital is offering, which focuses on the child only.
Cancer requires long-term and harsh treatment, which sometimes spans several years, which is why about 500-600 Danish children and adolescents are treated for cancer every year.
In Denmark, an average of 309 children die every year of a serious illness like cancer or a birth related disease.
Cancer in children is a malignant disease, as in adults, in which the diseased cells divide and spread throughout the body, however, unlike in most adults where the cancer originates from surface cells, a child’s cancer predominates in the internal organs. Therefore, childhood cancer diseases are often extremely aggressive, and the cancer cells have often spread already at the time of diagnosis.
Sources: Shooting Star Children’s Hospice, ‘Status Children’s Cancer’. Bornecancer Fonden, April 2020, Danmarks Statistik.
There is a need for additional capacity with End-of-Life care for Children with Terminal Illness in Denmark.
An average of 309 children die every year of a terminal illness. Add to this number the 500-600 children that are receiving treatment for cancer every year and the need is staggering.
There are 8 hospice beds dedicated to palliative care for children. Four are currently offered at Lukas House in Copenhagen and four beds will become available when construction is completed on Strandbakkehuset in Jutland, the end of 2020.
Within the first year after extending its palliative care to include children and adolescents, Lukas House had to reject applications due to lack of capacity.
Approximately 77% of the 309 children die at the hospital and 11% die at home.
To providing Pediatric Palliative Care. It is our goal to support families across Denmark from diagnosis to end-of-life and throughout bereavement with a range of nursing, practical, emotional and medical care, which will be provided for the entire family and offering bespoke service to suit their needs. Our symptom management will enable extremely sick children to be supported and cared for under the advisement of leading doctors in Pediatric Palliative Medicine, the child’s personal GP and a team of nurses, physiotherapists, creative therapists, psychologists, and counsellors.
Caring for a life-limited child or young person is emotionally and physically exhausting, particularly at times of change or when a child is nearing the end of their life. Our facility will provide planned respite, which will allow families an opportunity to leave their child overnight in a safe environment where they will receive all the specialist care they need as well as lots of opportunities to socialize and have fun. Emergency respite will also be provided when a family may require short notice support due to an unexpected situation that arises.
Sources: Lukashusset. En 1 En 1 år evaluering by Mette Raunkiær, REHPA., Videncentre for Rehabilitering og Palliation (REHPA).
We can and we will do a great deal together, by building a Centre of Excellence in Pediatric Care that will have:
Five bedrooms for children and adolescents with terminal illnesses
Five family flats that will have dining and lounge area and the child’s bedroom
Two palliative bedrooms with family suites
A reception, meditation garden, a chapel, a cinema room and a hydrotherapy pool with a lighting and music system
Activity rooms for arts and crafts, music, and drama therapy
A Centre of Learning
There is no comparable service in Denmark
We can build the leading pediatric pallitative centre caring for children and young people with life-limiting conditions and their families
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