The Advent of Palliative Care

The Advent of Palliative Care

On that day  I will gather the lame, and I will assemble the outcasts, and those whom I have afflicted. I will make of the lame a remnant, and of the weak a strong nation.  Micah 4:6-7

Palliative care makes of the weak a strong nation by gathering those who are cast out of the high stakes game of modern life, in which only the fit and un-afflicted can participate successfully, and placing them beneath the pallium, or cloak, of meticulous clinical, psycho-social and spiritual care. That cloak of attention and accompaniment dissolves the “structures of sin” that configure the sufferings of poverty, pain, disability, and stigma, replacing them with resilient structures of grace and solidarity.  The hands that are feeble are strengthened, the knees that are weak made firm, and those whose hearts are frightened hear the comforting words, we are with you: “Be strong, fear not.”  (Isaiah 35).

Structures of sin are those policies and institutions Catholic social teachings describe as producing injustice, such as the inequity in global palliative care provision that afflicts more than 70% of the world’s population. Social (as opposed to personal) sin, is defined as “sins of commission or omission-on the part of political [..] leaders who, though in a position to do so, do not work diligently and wisely for the improvement and transformation of society according to the requirements and potential of the given historic moment.” (Reconciliatio et paenitentia

The given historic moment we have arrived at now is one wherein political leaders and the medical profession have all the legal, clinical, and pharmaceutical tools they needs to relieve preventable health related suffering.  The development of palliative care in the last half century provides the opportunity to develop the necessary policies — to make the rough ground experienced by so many patients and families become a plain, and the rugged terrain of illness they struggle through, a broad valley (Isaiah 40:4).  

The Advent message of palliative care calls those immersed in social sin, to repentance, or metanoia, a change of heart that will enable them to develop publicly funded palliative care policies to relieve the suffering of all those in need. This message challenges the modern neo-liberal narrative that those who have lost social, political and economic agency through life-limiting illness, are not worth investing in.

The agency of the remnant honored by palliative care with clinical, psycho-social and spiritual services to strengthen them for the journey, is a collective voice crying out in the wilderness, calling health and pharma-industrial systems that invest only in cure at any cost, to take wider perspective that perceives the suffering of others as potentially their own. “Those who err in spirit shall acquire understanding, and those who find fault shall receive instruction.” (Isaiah 29)  This is agency in the truest sense.

Palliative care is prophetic, not profitable or prestigious, although the evidence does show that palliative care services save money by preventing unnecessary hospitalisations and what economists call “downstream spend.” Palliative care’s ethic of meticulous attention and inclusion erases the margins and categories of otherness, patient by patient, family by family, embodying the Beloved Community, in Dr. King’s words, to make each patient’s and family’s world a better place for as long as possible. It heals and strengthens the body politic in the same way stem cell therapy heals broken limbs and diseased organs. It makes straight the way of the Lord. 

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The Advent of Palliative Care for Persons with Disabilities

The first Sunday of Advent (December 3, 2017), fell on the International Day of Persons with Disabilities. The Advent of palliative care for people with disabilities was heralded in Monday’s Gospel reading of the Roman centurion mentioning to Jesus that his “servant lies at home paralyzed, and suffering terribly.” Jesus healed the servant without (a) being asked, or (b) even seeing or touching him, a technique palliative care practitioners have yet to master. The story can still inspire us to meditate, however, on how we can improve the availability of palliative care for persons with disabilities.

We must begin by asking people with disabilities what services they need to face life limiting illnesses, and how they would like to access such care. We need to ask, what does “healing” look like for you? Perhaps it begins with being seen, heard, and made visible by the rest of the world that does not yet have a disability. The vast majority of people with disabilities are not “paralysed and suffering dreadfully,” like the centurion’s servant in the Gospel, but the vast majority are invisible.

Until my sister Ruth had a stroke and was confined to a wheelchair, I didn’t give a thought to how disability un-friendly most cities are (I pushed her around the Baltimore neighborhood) or how negligent and disorganised the US health system is toward ageing women with disabilities, even when they have
plenty of resources and insurance!

Speaking of how the Convention on the Rights of Persons with Disabilities can support the right to palliative care, Maria Soledad Cisternas Reyes, now UN Special Envoy on Accessibility and Disability, said at an event at the Social Forum in 2016,

The right to palliative care is not subject to progressive realisation. Palliative care becomes a fundamental pillar for the right to life and integrity of the people who need it, and is not limited only to the exercise of their right to health.

From another perspective, palliative care is also essential for the exercise other rights such as freedom of expression and opinion, access to information (Art. 21), as well as enjoyment of the family environment (Art. 23), and inclusion in the community (Art. 19). Like the civil rights listed above, these are subject to immediate realisation and respect, and palliative care is a key factor in their enjoyment

Along these lines, the focal point and coordinating mechanisms for implementation of the Convention must develop actions specific to the promotion of palliative care, which also must be monitored by the supervisory mechanisms at the national level (Art. 33). Today, we are at a crucial moment for implementation of the Sustainable Development Goals (SDGs) and the Agenda 2030, with the motto “leave no one behind”. Therefore, also in the instruments concerning social development we can find a strong foundation of support for the promotion, development and implementation of the palliative care at the national level.

Advent cannot come too soon for persons with disabilities who need palliative care. The Palliative Care Association of Uganda is doing a wonderful job working with the deaf community in that country,
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and the European Association for Palliative Care is working with community groups to provide palliative care for persons with intellectual disabilities.
This Advent is just the beginning. We must do more for those paralyzed with suffering if no one is to be left behind as the Sustainable Development Goals (and the Gospels) proclaim.