Working in Nepal with children and families with Polio gave me a huge regard for its vaccine creator Jonas Salk. However, it is his question posed in 1992 that has been preoccupying me most recently “Are we being good ancestors?”(1)
Salk asserts that while we cannot choose our parents we can choose, or at least have more influence on, our ancestors. As a recent grandparent and a palliative care doctor approaching the end of my career the question is unnerving both personally and professionally in the two areas which are most likely to cause my grandchildren to ask, “Why did you do nothing?”, the climate emergency and most uncomfortably, racism, – the focus of this editorial.
We all have our own relationship with racism, by which I mean, ‘a belief that race is a fundamental determinant of human traits and capacities and that racial differences produce an inherent superiority of a particular race.’
Growing up as a white, protestant from the Unionist Community in Northern Ireland during the troubles it took me many years to realise just how much the dice was loaded in my favour to support my privileged upbringing, (being a heterosexual, middle class, grammar school boy were also factors). Aside from my naïve obtuseness the systems, structures and culture of that time did not encourage critical reflection on the justice of my taken for granted entitlements.
In a divided society, particularly a society actively engaged in a civil war, concerns about racial, or indeed any sort of equality, can be quickly tempered by those of safety. Liberal values were fine so long as they didn’t cost too much and little actual power or real change to the infrastructure was seceded.
At school our banter and name calling were, “Just what boys do”. We learned the skills to deflect bullying from ourselves by reflecting it onto others and to races, creeds and colours deemed worthy of our scorn as lesser people thus preserving our own position and self-esteem. At the front of our school is a statue of a hero from the British empire, famous for the brutal way in which he helped crush the first Indian War of Independence, to preserve the Raj and his belief in the superiority of the values of white Victorian Britain. At a time when Britishness was under attack locally neither his statue, his honoured status nor his documented violence was never questioned.
At University in Edinburgh, I never once connected some of the grandest buildings and statues that I walked past on a daily basis with the trade in slaves responsible for raising the vast sums of money needed for the buildings and the institutions contained within. If I had, what would I have done? The weight of human suffering created by the heartless trade in human beings based on racism and the profit that many generations have benefitted from is so overwhelming it is hard to know how to process it. It can cause guilt and paralysis in the realisation of what has been done by my ancestors and in untangling just where my own culpability lies and what is an appropriate response today.
Working in Nepal in a mission hospital for eight years further challenged the unconscious biases and entitlements that I had grown up with. The benefits of being white, male and wealthy in comparison with our Nepali neighbours posed different and uncomfortable questions as to the complex nature of my racial biases, while at the same time not wanting to be disloyal to the very community which had given me so many opportunities in Ireland and were supporting me in Nepal.
It is an uncomfortable and overwhelming impasse and one with which I suspect many can identify, but how will it seem to my grandchildren?
Einstein is quoted as saying, “No problem can be solved from the same level of consciousness that created it”,(2) and in seeking ways forward which do not perpetuate the “them and us” narratives which are so often repeated throughout history we will need a new consciousness intrinsically linking our wellbeing to the wellbeing of all.
Such a way forward does not come easily and we use different techniques to dampen the discomfort raised in facing our biases and our fears of being taken over by “them”. In palliative care part of the energy for establishing the movement was in correcting the discrimination to the ‘incurables’ who were left to die, isolated and ignored by a medical system preoccupied with new cures and treatments.
That sense of our own moral goodness in palliative care, empowered by the gratitude of patients and families, can deafen us to the reality that for many diverse communities in our areas palliative care services remain irrelevant. After innumerable reports and calls to action and some examples of truly inclusive services the vision of improved end of life care for all, irrespective of race, social status, wealth, religion and disease, remains only partially fulfilled.
The Fransciscan Richard Rohr writes “Humanity consistently has to face the problem of unity and diversity. We’re not very good at understanding it. That’s why we continue to struggle in our society with rampant racism, along with sexism, homophobia, classism, nationalism, and more. We habitually choose our smaller groups, because we don’t know how to belong to a larger group.” (3)
The shocking morbidity and mortality statistics of non-white communities during COVID show that accusations that our health systems are institutionally racist may not be ill founded. Further, a recent BMA survey showed 75% of Doctors from minoritized communities had experienced racial discrimination during the first two years of COVID.(4)
Have hospices and palliative care services a better record? The lack of data in relation to Equality, Diversity and Inclusion (EDI) in the sector may be significant in itself and at the very least leaves gaps for speculation. The personalised care that we deliver to our core constituency can signal to those outside the core that our space is not a space where they will ever be understood, safe, truly welcomed and respected. In the past we have called such diverse communities, “hard to reach” with the inference that there is something particularly inward looking about such communities as opposed to questioning if there is anything exclusionary about our services.
Drs. Jamilla Husein, Sabrina Bajwah and Jonathan Koffman showed tremendous courage in raising the issue of Racism in Palliative Care in an editorial in Palliative Medicine in 2021 (3) The inherent structural and institutional biases built into health systems that they highlight have opened the eyes of many to how systemic racism is a daily reality for significant numbers working within and treated by our services. “Once you open your eyes to racial inequality, you start to see it everywhere”.
So with opened eyes what is the way forward?
Hussein and her colleagues see little value in triggering guilt within majority communities as guilt tends to stifle vital action. The COVID death rates among diverse communities has struck a chord across the palliative care community. A recent Hospice UK poll of the Hospice and Palliative Care community placed EDI issues as the number one concern. There is an intention from many within the palliative sector to become more inclusive but there is also much uncertainty as to how to move forward as so many previous initiatives have failed.
“I do not know what I do not know and I need help to develop service models which are inclusive and safe for all”.
Through the Project ECHO everyone a teacher everyone a learner methodology there is the opportunity to create an EDI virtual palliative care community of practice who could commit to working together to learn, share and explore practical ways to engage with diverse communities and to discover together ways to make our services more inclusive. (6)
Rohr’s global vision is that if we can find our place securely in the family of man we do not need to invest energy in fear preserving our smaller interests.
The vision of the Racism in Palliative Care Editorial is for services which are confident in embracing diversity, not as a kind thing to charitably bestow on ethnically diverse communities but because without the total engagement of the populations that we serve our services, and our practice will be impoverished. Preventing Polio was an amazing achievement but If such a positive, inclusive approach to truly delivering inclusive palliative care for all can be embraced what a legacy that would be also for future generations.
Professor Max Watson
Director Project ECHO Hospice UK
Consultant Palliative Medicine Western Trust
alimaxuk@me.com
- Jonas Salk World Affairs: The Journal of International Issues Vol. 1, No. 2 (December 1992), pp. 16-18 (3 pages)
- https://www.brainyquote.com/quotes/albert_einstein_130982
- Rohr Centre for action and contemplation : https://cac.org/we-are-all-christs-body-2022-02-06/
- Doctors consider high levels of racism in the NHS to be a ‘debilitating’ problem, finds largest survey of racism in medicine BMA Press Release https://www.bma.org.uk/bma-media-centre/doctors-consider-high-levels-of-racism-in-the-nhs-to-be-a-debilitating-problem-finds-largest-survey-of-racism-in-medicine
- Hussain JA, Koffman J, Bajwah S. Invited Editorials. Palliative Medicine. 2021;35(5):810-813. doi:10.1177/02692163211012887
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