The world’s first book addressing the legal aspects of palliative care was launched by the Hospice Palliative Care Association (HPCA) of South Africa in Cape Town in July.
Legal Aspects of Palliative Care, showcases a joint effort in the fields of law and palliative care to make key legal and medical issues accessible to anyone seeking to improve their understanding of the impact of life-limiting illness.
Constitutional Court Judge, Edwin Cameron who wrote the foreword for the book, describes it as “a practical reference guide for use in palliative care services and legal practice” and says the manual “contributes to developing palliative care to guide hospice personnel as well as lawyers”.
Book is world-first
Dr Liz Gwyther, CEO of HPCA said the book is the first of its kind and has been eagerly anticipated worldwide. “A number of my colleagues in other countries have said they want this manual to see how they can adapt it in their own countries with their own laws and regulations.
“The manual was conceived to assist patients who have legal problems at the end of life. It’s very accessible, patients can read it but the main readership is for palliative care practitioners to understand the legal aspects of care and for lawyers to understand palliative care.”
The right to palliative care
She said the book addresses patients’ basic human rights. “We believe palliative care and pain relief to be a human right, so we’ve written this also into the book and to emphasise the marginalised groups who find it difficult to access care.”
The book also addresses the legal rights of children and young persons and their right to palliative care. Joan Marston, Chair of the International Children’s Palliative Care Network (ICPCN) says we are only scratching the surface of palliative care for children. Only about 5% of children with palliative care needs are being reached through the 40 palliative care sites in the country.
Children need to be protected
Marston says children at the end of life often aren’t given the opportunity to talk about the way they feel. “We need to recognise that children with life limiting conditions actually have such very special needs that they require laws to protect them.
She says while HIV and Aids is the biggest problem, children with other life-threatening illnesses also require attention and funding. “It’s HIV and TB but it’s also children with cancer, children born with genetic conditions, children who have severe disabilities that limit their life expectancy and also their capacity to live normally, its children who suffer from severe malnutrition which is very much a life threatening, and children with neuromuscular conditions as well.”
Contributions from palliative care and legal practitioners also cover the ethical issues encountered in palliative care, the impact of poverty on the daily lives of palliative care patients and their families, barriers to care facing refugees, migrants, sex workers and others, the role and status of community caregivers, the preparations that should be in place when faced with death, as well as the legal issues associated with death and dying.
Palliative care section
Caring for the caregiver