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.
Palliative care is the stance of being comfortable with the unknown, a stance that leads to the development of confidence, resilience, and empowerment in patients and families receiving the best care. The fact that we are all vulnerable, all subject to suffering, old age, and death, makes strategies of avoidance through domination and control both futile and painful for all parties, particularly those outcast by serious illness. An individual’s, family’s, community’s, capacity to embrace the unknown is transformative and evolutionary, and can be expressed as the classical political virtues of magnanimity, honesty, courage, and friendship. These virtues buttress resilience and sustainable development.
The meta-ethic of palliative care aligns with Jesuit priest and paleontologist Pierre Teilhard de Chardin’s definition of evolution: the process whereby the universe becomes conscious of itself. Indeed, palliative care is a discipline that demands its practitioners become conscious of themselves in order that they may be properly vulnerable to the vulnerability of the other. By definition, becoming conscious of oneself requires the courage to be with, to live into the truth of suffering, no matter how unpalatable or dis-grace-ful. Only then can pathology be transformed, alchemized, healed by grace, etymologically related to gratitude for Being itself.
The universe only becomes conscious of itself through unmediated and intimate encounters with its bare heart, which reveals itself in the particular, the actual, the enfleshed – not the ideal or abstract –being of the suffering other. Such is the global pandemic of untreated pain, the collective being of the suffering other that is our own self. Approached with courage, friendship, and honesty, the shared pain is transformed and eventually healed.
This is the pearl of great price that is palliative care.