Religionless Palliative Care Comes of Age

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.

Advertisements

Gratitude for my daily yoga discipline! And a ticket to Antigone tonight.

Gratitude for my daily yoga discipline! And a ticket to Antigone tonight..

Faith and harm reduction. What defiles and defines us.

cypriot jesus

Jesus summoned the crowd again and said to them,

“Hear me, all of you, and understand. Nothing that enters one from outside can defile that person; but the things that come out from within are what defile. Do you not realize that everything that goes into a person from outside cannot defile, since it enters not the heart but the stomach and passes out into the latrine?” “But what comes out of the man, that is what defiles him. From within the man, from his heart, come evil thoughts, unchastity, theft, murder, adultery, greed, malice, deceit, licentiousness, envy, blasphemy, arrogance, folly. All these evils come from within and they defile.” Mark 7:14-23

People who use drugs that are illegal are not “defiled” by the substances, although they might be harming their health, since the drugs enter their physical system but not their “heart” – and end up back in the sewer. The ones who are defiled are the people whose hearts generate “evil thoughts” – particularly the arrogance and folly that condemn the most vulnerable to a life of stigma, shame, unemployment, prison, or worse because of their drug use.   They are the politicians and elites who continue to support policies that benefit powerful constituencies while hurting the weakest, easiest targets.

So what is the best approach to those evils that come from within? I’m afraid – since I must do it – that the best approach starts by being aware of the “evil thoughts” in myself, watching them as they arise and motivate me.  I certainly have my share of thoughts that are full of judgment, arrogance, and folly.  I am no stranger to licentiousness, unchastity, adultery, greed, envy, blasphemy or deceit, much as it embarrasses me to write those words.  I too am defiled from within.  So how I can I judge the ones who make policies that cause harm?  My spiritual practice teaches me to pray for those who persecute me (Matthew 5: 43) and to bless those who persecute; bless and do not curse (Romans 12:14).

My humanist friends will no doubt gag at such a sentiment and practice (as do I initially), but then people of faith are “fools for Christ” and tend to do things upside down from the perspective of the secular worldview.  Praying for those who persecute us and being aware of our own defilements in no way prevents us from working for justice, though.  We can bless and not curse while still taking whatever steps need to be taken in public life to ensure that people who choose – or are no longer able to choose – to put certain substances in their bodies that are designated illegal are not treated as though they were defiled, stigmatized, punished, and executed.   We can still ensure, by taking practical steps, that people are treated with friendliness, dignity, and compassion, rather than contempt.  I’m on the right track if what comes from my heart doesn’t defile me, or anyone else when I do my work, which is always a challenge as someone who has been brought up, and professionally trained to be a critic.

Drug Policy, Faith and Vulnerability: Salt and Light

A meditation on drug policy and the Word: security, vulnerability, and light. 

Katherine Irene Pettus, PhD 

If you remove from your midst / oppression… then light shall rise for you in the darkness, / and the gloom shall become for you like midday.

 Isaiah 58:7-10

I came to you in weakness and fear and much trembling, and my message and my proclamation were not with persuasive words of wisdom, but with a demonstration of Spirit and power, so that your faith might rest not on human wisdom but on the power of God.

I. Corinthians 2:1-5

Much of the talk about “drug policy” in local, national, and international circles I move in focuses on the concept of “security” and indeed, much of drug policy is now “securitized” – meaning that politicians connect the threat of “drugs” with threats to national security, combating it with increased law enforcement funding and intelligence services.  The rationale is that drugs not only threaten individual and public health, but that trafficking and money laundering destabilize good governance, sustainable development, human rights, etc.

There is no doubt that many individuals, families, and communities experience the very negative and often tragic effects of illegal drug use and trafficking. My family is only one of the millions suffering the effects of prohibition and mass incarceration.  The question, though, is whether it is “drugs” themselves – the plants and pharmaceutical preparations that cause narcotic effects, that are the problem, or the fact that they are illegal and therefore unregulated. By definition, their illegality puts the drug economy in the hands of criminals and international criminal networks. People who use drugs, whether for pleasure, because they are “dependent,” or are “addicted” must then also participate in criminal networks, often at the cost of their health and their lives.

What on earth, or in heaven’s name, you might be wondering, might this have to do with faith, or with religion, or even today’s readings?  A lot.  The oppression Isaiah names, which must be removed, is the illegality and stigma that accompanies drug use.  That oppression brands people who use drugs as outsiders, as separate, or unholy, and is reminiscent of the illegality, ostracism, and repulsion that branded the lepers and “demoniacs” Jesus healed from his compassion.  Purity laws, whether Talmudic, Christian, or secular (in the form of drug prohibition) by definition separate people considered ‘unclean’ from the body of Christ and the Kingdom.  Jesus very intentionally turned those laws upside down when he touched the ‘impure’: bleeding women and sex workers, paraplegics, schizophrenics, the dying, and even the dead.  It seems self evident that, as Isaiah said, and Jesus demonstrated, removing oppression from our midst brings light.

Paul’s disarming admission of weakness, which he (counter) intuitively understands as Power, combines two apparent opposites that generate the paradoxical resource of vulnerability. This universal, incredibly uncomfortable, aspect of the human condition, makes us shriek as infants, and use substances or activities (alcohol, coffee, tobacco, sex, shopping, or narcotics] as young people and adults. Paul’s letter puts us on notice that our search for the (individual or collective) security that temporarily offsets our vulnerability is futile. As one who oppressed the vulnerable himself – Saul, Saul why do you persecute me? –would have rung in his ears through his dying moments, Paul learned at a molecular level on the road to Damascus that the current of Power only flows through the fabric of utter defenselessness.

Jesus tells the disciples that we are the salt of the earth and the light of the world, a light that must not be hidden. Apparently speaking in riddles, he asks what salt can be seasoned with once it loses its taste.  His/our vulnerability is our saltiness: even our tears are salty, and the moment we try to armor ourselves against the “weakness, fear, and much trembling” Paul describes, by scapegoating and sacrificing others, we lose our savor and dim our inherent and collective radiance.   Societies that support rather than punish vulnerable people who use drugs are more resilient and have better public heeclipsealth outcomes than those that try to stamp them out in the futile effort to create a “drug free society”.

The apparent power of the state (us) to criminalize drug use only empowers traffickers, police, and prison guards. Admitting and sharing our individual and collective defenselessness in the face of our very human desire to alter our consciousness, paradoxically returns to us the power to remove oppression, casting a very different light on the “drug problem” and allowing us to begin resolving it together, in the parliament of the Kingdom that admits of no outsiders.

Katherine Pettus, PhD is an independent scholar and consultant who represents the International Association for Hospice and Palliative Care as an NGO at the Commission on Narcotic Drugs in Vienna.  She is also a convert to the Roman Catholic faith and a member of the English community of Sacred Heart church in Budapest.