One reason global palliative care advocacy is so challenging is because it implies systems change. Palliative care is an approach, an ethic, a multi-disciplinary sub-speciality, not just a new element that can be added and stirred into health systems.
Palliative care doesn’t accommodate itself to the existing global health ideology, but challenges the ground of that ideology, which is fixated on fixing, on making populations fit to contribute to “development.”
From the development perspective, the distinct ethics of palliative care are perverse, claiming the inherent value of each person and family, from fragile neonate to frail elderly, those who don’t contribute to the bottom line.
More subversively still, palliative care advocates request that governments subsidize palliative care as part of the public health system, as a human right, rather than relegating the service to the mercy of charities and private philanthropic organisations.
Needless to say, such absurd petitions fly in the face of rational public policy and budgeting, particularly in this era of “scarcity” and “crisis’.
Why do we stubbornly insist that palliative care is the pearl of great price?
Pearls are created once an irritant such as a parasite, or grain of sand — something akin to a splinter — makes its way into the lining of a mollusk or shell. As a defense mechanism, a fluid is used to coat the irritant. Layer upon layer of this coating, called ‘nacre’, is deposited until a lustrous pearl is formed.
Palliative care advocates are irritants to systems largely focused on treatment, systems whose organising principle decrees that patients be abandoned when cure is no longer an option.
Palliative care invites us to explore areas of life beyond strict utility, as defined by ordinary standards in society, and the ultimate limits of life.
Such exploration is only possible if we recognise there can be great value in what is not useful (Vanistendael 2007)
How can what is not useful be valuable, and how can palliative care nurture that value, pouring layer upon layer of coating/care/pallium, on the suffering of patients and families, to produce a pearl of great price that can actually support the sustainable development of communities and nations?
The distinct social physics of palliative care dis-place vulnerable individuals from the margins to the center of public policy, shifting the political center of gravity from a rationality of control and domination of the body and its diseases, to one of accompaniment and equality in vulnerability.
In political terms, this shift represents the evolution from an oligarchic monopoly of knowledge/power towards a radically democratic and cooperative logic that can live into the questions, to paraphrase Rilke, because they are lived in common.
PhD, Political Theorist, Advocate for Improved Access to Internationally Controlled Medicines, Rights of Older Persons
This article was first published in the Huffington Post and is republished here with the permission.
Dr. Pettus holds a PhD in Political Theory from Columbia University, and a Masters in Health Policy and Law from the University of California San Diego. Her PhD dissertation appeared as a book, ‘Felony Disenfranchisement in America’, now in 2nd edition with SUNY Press, and her Masters Thesis studied the interface between international law and access to essential controlled medicines.
Katherine trained as a hospice volunteer in 2010 and joined the Leadership Development Initiative at the Institute for Palliative Medicine in 2011 in San Diego and Columbus. She began her international work in 2012, based in Budapest, and commuting to Vienna for regular meetings of the Commission on Narcotic Drugs, raising awareness about the “global pandemic of untreated pain” among government representatives and UN officers.
Katherine travels to meetings around the world, advocating for improved access to internationally controlled essential medicines such as morphine, as a component of the right to health. She also addresses palliative care issues for older persons, for children, in universal coverage, for non- communicable diseases (NCDs), and palliative care medications in national essential medicines lists.
Katherine writes regularly on policy issues for the IAHPC newsletter, the European Association for Palliative Care Blog, and eHospice. She grounds her European and US advocacy work in her visits to partners in Africa and India, where she participates ‘as often as possible’ in home care with colleagues and their teams who work in extremely challenging circumstances to deliver palliative care to the indigent and mentally ill.
She identifies her original role models/mentors as Dr. Anne Merriman in Uganda, and Dr. M.R. Rajagopal in Kerala. Katherine was appointed to the Civil Society Task Force (CSTF) for UNGASS 2016 (UN General Assembly Special Session on the World Drug Problem) as representative of “affected populations” with no access to internationally controlled essential medicines. In that capacity she will work with partners at the local, national, regional, and global levels to collect information to be presented to the UN General Assembly on the global issue of lack of access to essential medicines and best practices to ensure provision.
In her ‘down time’ Katherine enjoys reading, meditation, yoga, and long walks, preferably in the countryside. She particularly loves visiting her sons and young grandchildren in Taos, New Mexico and California.