December 22, 2017.
As 2017 comes to a close, palliative care is still unavailable in more than 80% of the world. What hospice and palliative care services do exist in the Lower and Middle Income Countries is provided by charity funded and faith based hospices, operating hand to mouth, on a wing and a prayer, just as they have since medieval times when the first hospices were founded by religious orders. Christians have always spent scarce resources caring for the sick because doing so is a corporal work of mercy — it amounts to caring for Jesus himself (Matthew 25). How can these ethics be secularised for modernity? What arguments can be used to persuade secular governments that spending scarce resources on (religionless) palliative care — a stipulated human rights obligation — is good public policy?
First of all because the “incurables” abandoned by health systems built to address trauma, triage, cure, and infectious diseases, are the citizens of those governments, if not refugees and migrants who are resident in their countries. The charity funded hospices that still struggle to meet the needs of dying patients, such as Hospice Ethiopia pictured above, can’t possibly care for all the palliative patients in need, given the global increases in life expectancy combined with the proliferation of complex chronic and drug resistant diseases. Since less than 12% of modern deaths will be “sudden,” the vast majority of people will need long term and palliative care as they age out of the workforce. How can governments justify public expenditures on care for them when most allocate less than 5% of their GDP to health? Unlike mothers with newborns who have the potential to work, the seriously ill and dying have no apparent agency: they contribute little or nothing to society or the economy, so are considered a drain on working families, public services, and insurance designed to deliver good health and restore people to productive lives.
Making the case for publicly funded (religionless) palliative care means reframing the concepts of utility and agency in terms of the social impact of providing palliative care to children, the frail elderly, and the terminally ill. First of all, just because those who need palliative care are not “contributing” now, does not mean they never did, and that they still cannot. Most of those who are now elderly, ill, and abandoned, have raised families, paid taxes, fought for their countries, created art, and served their communities in multiplicities of ways. Their frailty and dependence qua dependence, represents a invaluable social and human resource that collectively mirrors the humility we must expect to learn as we enter older age. The agency of those apparently without agency consists in their teaching younger generations who are given the opportunity to serve them (through taxation, the labor force, volunteering, etc.) the value of giving without repayment in kind; palliative care patients provide societies as a whole with the opportunity to accumulate the social capital of civic trust, compassion, and generosity: the connective tissue of resilient communities.
There are, of course, more easily measurable clinical and epidemiological impacts that can be used to persuade policymakers and health economists that “upstream spend” on palliative care is rational and cost-effective once hope for expensive cures or futile, life-prolonging courses of treatment is gone. Because palliative care focuses on the family and caregivers as well as the patient, it reduces overall health system costs and increases the chance that survivors (caregivers) will have better mental and physical health outcomes. It does this through providing accompaniment, support, and professional attention to caregivers and families of dependent patients.
In secular societies, where by definition, faith and a sense of mystery is a personal/private choice rather than a given, individuals have trouble assimilating the suffering that inevitably accompanies life-limiting illness. Suffering is generally either medicalised or denied/repressed, often surfacing as problematic substance use disorders (behaviours with harmful public health and social impacts). Palliative care can address these dimensions of repressed and refracted suffering, which almost always surface with death, dying, and serious illness. By accompanying patients and families into the unknown territory of suffering, rather than abandoning them to navigate it alone, the palliative care approach, as the World Health Organisation calls is, makes societies more resilient and “fit for purpose.”
The evidence shows that family and caregiver stress — sometimes post-traumatic stress after a hospital death — from looking after dying patients with poor communication and no support from professional staff, is creating a slow motion epidemic of mental illness in survivors. The untreated depression, trauma, and pain of unaccompanied patients and families, generates a (downstream) public health crisis of its own, given that for every palliative care patient, there are at least four or five (paid or informal) carers. These newly vulnerable populations will be more susceptible to both communicable and non-communicable diseases, including cancer, dementia, substance use disorder, and heart conditions. The antidote is upstream palliative care services that strengthen health systems and stimulate the development of skilled health workforces, promoting gender empowerment, quality education, and inclusive societies, all key goals of the 2030 Agenda for Sustainable Development.
In his Letters from Prison, theologian and pastor Dietrich Bonhoeffer, martyred by the Nazis in 1945, pondered the phenomenon of “religionless Christianity” in a world that has “come of age,” one where people driven to perform concrete works of mercy and justice no longer need the churches with their assurance of private salvation in return for piety. Publicly provided palliative care, Matthew 25 in action, could be seen as one such instance of religionless Christianity (or any other faith for that matter). In this day and age it is essential to supplement the “remnant” of faith based hospice care that still tends to the body of Christ, with religionless, publicly and insurance funded, palliative care. Advocating for this is what Bonhoeffer had in mind when he talked about proclaiming God’s word through the power of secular language.