A historic gathering in Rome called upon the world faiths to reaffirm that children’s palliative care safeguards the dignity and best quality of life possible for children affected by life-threatening and life-limiting illnesses and their families, Silvia Lefebvre D’Ovidio, leader of the Maruzza Foundation, Italy, explains.
On 10 November 2015, at the Vatican, representatives of the main world religious faiths, leading palliative care experts, human rights activists, and young patients and their families gathered together in support of children’s palliative care. The outcome of the one-day workshop was the Religions of the World Charter for Children's Palliative Care, signed by all the participants.
The workshop, organized by the Maruzza Foundation, was entitled ‘Defining the Essence of Children's Palliative Care', and was held in the Pontifical Academy for Life in Rome. Regardless of their backgrounds, participants upheld a common principle that all children are precious and the concept that children's palliative care offers the best solutions to the needs of children with serious illness and their families.
The Religions of the World Charter for Children's Palliative Care originated from those barriers that prevent child patients with life-threatening and life-limiting illnesses from accessing care that is appropriate to their age and disease and that significantly improves their quality of life and promotes dignity. It is a universal obligation of all faiths to share the responsibility of caring for those who are suffering or vulnerable; therefore, we believe that the main religions can provide fundamental support for children's palliative care provision through four actions:
The preparations for the Charter had begun three months previously, following a process overseen by the project's Scientific Director, Dr. Franca Benini. Having received enthusiastic approval of the project and an offer to host the event from the Pontifical Academy for Life, a list of participants with a broad range of experiences and perspectives of children's palliative care was compiled. For practical reasons, the final panel of contributors was divided into four different working groups: Clinical Voices; Children's Rights; the Patients' and Families' Perspective; Religions and Spirituality. For each group, a preparatory document, conceived to stimulate the participants' involvement and input, was devised and four group leaders appointed to coordinate the circulation and collection of material/feedback in preparation for the face-to-face roundtable discussion in Rome in November.
In the morning of the 10th December workshop, the working groups met in four simultaneous roundtables. The ‘Clinical Voices' working group, led by Prof. Joanne Wolfe, brought together some of the most prominent children's palliative care experts from around the world to define the fundamental aspects of effective palliative care delivery for children. The ‘Children's Rights' working group, led by Prof. Kathleen Foley, examined the issue of children's palliative care as a human right. The ‘Patients' and Families' Perspective' group gave voice to a wide spectrum of issues regarding dignity and respect. The group leader, Prof. Myra Bluebond-Langner, worked alongside families from different cultures and backgrounds with experience of children's palliative care and two ‘Young Ambassadors' for children's palliative care: Sara Pavan (affected by SMA1 (spinal muscular atrophy) and Francesco Ostellari (affected by muscular dystrophy) who, the next day, met with Pope Francis during the Papal Audience. The ‘Religion and Spirituality' working group led by Prof. Richard Hain united voices from the main world faiths: Hinduism, Judaism, Buddhism, Islam, the Catholic, Lutheran, Anglican and Orthodox Churches. The roundtable highlighted how physical, psychological, and spiritual sufferings are intricately linked.
In the afternoon, a plenary session was devoted to the composing and signing of The Charter.
A website dedicated to Religions of the World Charter for Children's Palliative Care was launched on 13 January. Please visit the website and sign the Charter.
This story is brought to you by the team at Pallium India
Bali – the name brings to mind images of sandy beaches, beautiful mountains and breathtaking greenery. A true Heaven on Earth. But there is a "Hell within this Heaven" says Ms. Kurnia Ito, the founder of Bali Cancer Care Community.
In a narrative titled ‘Pain in Bali’ published in the Journal of Pain and Palliative Care Pharmacotherapy, Dr. M. R. Rajagopal and Ms. Kurnia Ito first take us to a small house at the end of a narrow winding lane – where a woman, a mother of two, is suffering from advanced cancer and is in unbelievable agony. Her helpless husband and little children are also victims of the illness – as they watch her writhe in pain, day after day, night after night, unable to do anything to help her.
The authors try to get her medicines to reduce her suffering, but there are restrictions on pain medications. The result? Essential medicines like morphine that can relieve her pain are available in hospitals, but do not reach her or other patients like her. Dr. Rajagopal, who has been practising palliative care for over twenty years, writes, "Palliative care doctors see a lot of pain. But I had not seen many people with pain of this magnitude. Here was suffering at its worst."
Dr. Rajagopal suggested a medicine, which could be obtained without difficulty, and that relieved her pain a little. The patient is later taken to a hospital where she is subjected to more chemotherapy that worsens her situation. No-one attended to her pain and suffering until the end. The only relief she got came from a volunteer with no schooling in medicine or palliative care.
This is indeed not just the story of one patient, or only of Bali. The situation is not any different in India and other developing countries. Countless people continue to suffer due to the ignorance of the medical profession about pain management and because of unnecessary regulatory restrictions on pain medicines.
The Journal of Pain and Palliative Care Pharmacotherapy in which this story is published, is an indexed journal that has made the narratives like these free access. Read all the narratives here.
The Journal invites narratives on pain, suffering and relief. Tell your story to the world and help improve palliative care awareness.
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