Representatives of all main religions and palliative care experts joined together in Rome, Italy, in March 2017 to promote the rights of all older people affected by advanced chronic conditions to receive palliative care. Dr Katherine I Pettus, PhD, International Association for Hospice and Palliative Care (IAHPC) Advocacy Officer for Palliative Care Medicines, reports on two important meetings.
Last month, several representatives of different non-governmental organisations and academic institutions met at the Vatican for two international palliative care meetings: the first was convened under the leadership of Silvia Lefebvre, of the Rome-based Maruzza Foundation, and the second by the Pontifical Academy for Life (or PAV) under the leadership of Monsignor Vincenzo Paglia. The Maruzza Foundation invited participants from all the major faiths and palliative care disciplines to draft and ratify a ‘Religions of the World Charter on Palliative Care for Older People’, similar to the ‘Charter of the Dying Child’. The PAV invited an expert working group (many of whom had also participated in the Maruzza meeting) to participate in a multi-year project whose goal is to develop a strategy to ensure availability of palliative care worldwide.
The largely unspoken subtext of both meetings, and the Holy See’s welcome interest in universalising access to palliative care, tracks the growing political influence of the euthanasia and physician-assisted suicide movements in the US, Canada, Australia and Europe. The Maruzza Foundation meeting, which included faith leaders from the world’s major religions, human rights experts, palliative care providers, and ethicists, finalised a document with global credibility that “affirms life and regards dying as a normal process,” as per the World Health Organization (WHO) definition. Moreover, the final plenary voted to retain the entire WHO definition stating that palliative care “intends neither to hasten nor to postpone death” in order to clear up any confusing assumptions among the uninitiated that palliative care includes, or could be a proxy for, euthanasia or physician-assisted suicide.
The Maruzza meeting comprised four working groups: Clinical, Patients and Families, Human Rights, and Spiritual and Religious. Each group’s members had done some preparatory work in their home countries under a designated group leader during the months preceding the actual meeting. At the Rome meeting on March 30-31, groups finalised their specific sections based on drafts prepared by the group leaders. All four groups then converged with Maruzza Foundation staff in a final plenary to review each other’s sections, fine-tune the language, and sign the final Charter.
The human rights drafting group, in which I participated, was careful to ensure that the final text explicitly charged governments with the responsibility to respect, protect and fulfil older persons’ right to palliative care. We noted that settled international law and human rights experts now recognise access to palliative care for older persons as a human right. We required governments to include essential medicines, such as oral morphine, on their national medicines lists and to remove unnecessarily restrictive barriers to access. We described the inalienable right to free and informed consent, to refusal or suspension of medical or surgical treatment, and to clear and timely information about the potential consequences and risks of such a decision.
The human rights group benefited from the experience of many experts, particularly the extensive policymaking experience of Baroness Ilora Finlay who sat as an independent advisor, and Ms Bethany Brown of Human Rights Watch and Help Age International, who had assisted in drafting the Convention on the Rights of Persons with Disabilities. The group carefully considered broader structural issues, such as older persons’ right to justice, which includes the elimination of ageism, and the enactment of regulations that facilitate a person’s right to live well in their preferred place, and to support for management of their affairs. Photos of the signing ceremony are available on the Maruzza Foundation website and a list of signatories is forthcoming.
Challenges and realities of developing palliative care worldwide
The Pontifical Academy for Life (PAV) invited an expert working group (many of whom had attended the Maruzza meeting) to participate in a multi-year project whose goal is to develop a strategy to ensure availability of palliative care worldwide. This meeting gave birth to a consultative group to study how palliative care services might be expanded and developed around the world. The group comprised PAV members and palliative care leaders from different regions whose agenda was to study the current situation in all the world’s regions, evaluating opportunities and challenges to the universal development of palliative care. Experts who gave educational presentations on the ‘challenges and realities’ of their respective regions included: Dr Eduardo Bruera (North America), Liliana De Lima (Latin America), Sr Jinsun Yong (Asia), Dr Emmanuel Luyirika (Africa), Dr MR Rajagopal (India), Dr Samy Alsirafy (the Arab world), Dr Daniela Mosoiu (Eastern Europe), Dr Carlos Centeno (Western Europe). I presented on palliative care advocacy in the framework of international law and organisations, including how the Holy See could influence the developing palliative care narrative at the United Nations and regional organisations.
The PAV website describes a related ongoing project in detail: “In addition to the information that these experts supplied, the Pontifical Academy for Life has begun an “internal” study within the Church environment to determine how many Catholic-related care and assistance facilities deal with terminal illnesses.” The PAL-Life Group is tasked with forming a committee to organise a global conference in late February 2019.
Acknowledgement: All photos are courtesy of the Maruzza Foundation.