At times I wonder at and am disturbed deeply by our human capacity to not care for each other in this world of ours. I marvel at our ability, as carers, to disengage our empathy monitor and seemingly able to then ignore the distress of others. To not be mindful of the other’s desire to be treated with dignity, respect, empathy, and care. Especially within an environment where one could perhaps be forgiven to expect such care. Where how we care is often more indicative rather of how much we loathe the arrival of the other. The other in the form of what it is we fear and wish not to look at too closely in our own lives. The other, that shows up in so many forms. In the hospital that I work at the other shows up often in the form of distressed children. If Nelson Mandela said: “There can be no keener revelation of a society’s soul than the way in which it treats its children”, we are then sadly indicted by how poorly we treat children in our system, especially those in pain, in overt distress, and when not behaving as we wish them to.
Reading a book review written this week by Jerome Groopman on God’s Hotel, he invoked memories of another book, The House Of God, which I too had read as a medical student, like many others. Being reminded of GOMER (get out of my emergency room) terminology and realising how apt this acronym is to what I have experienced happen to some of the patients I’ve been involved with. Especially vivid this past week the experience of a little girl of 10, who has been in the ward with extensive burns. Her mother visits rarely. She is very needy of physical and emotional attention. Which should not be seen as abnormal in a young child, having experienced a traumatic event, with pain, in a strange setting, without a parent. In our hospital setting, when no family caregiver to attend to the child, the child will generally receive poorer quality care as no one advocates for them, sees that they eat their food, are generally cared for, washed, even receive all their medication adequately, including pain control medication which should be administered regularly. This young girl was not well controlled in her pain needs and expressed her distress loudly, crying and wailing for much of the day and night. Even to the point that the nursing staff put her alone in a side room one night and closed the door. On becoming involved our team attempted to help with pain control, but it was not easy, not being present 24/7. Even as other children and mothers on the ward would try attend to her. My experience one day, as she was wailing in distress with the pain and itching from her healing burn wounds, was that when I could make eye contact with her, have her feel safe, contained, and heard, she could find some capacity to settle. But as soon as I looked away the distress started, no matter how much medication anew I had administered or how much time I had spend with her in the moments prior with imagery, distraction, and breathing exercises. Neuroscience has shown us how young brains affected by trauma and neglect can fail to adequately develop a sense of ever being safe. That their amygdalas are in often perpetual arousal seeking out danger and that the hippocampal areas, needed to contextualise events appropriately, shrink. Even as science can explain this unfolding distress it is difficult to stay with in the reality of cold daylight and can only be held within a container of understanding, care, and compassion. Paradoxically resources that often are in short supply on paediatric hospital wards. Last week we returned to do our usual team ward round to find that after the last episode of unsettling distress our little patient had been summarily discharged. Definitely been GOMERed. But not only discharged home, but had also been told not to come back to the outpatient department for dressings but to attend the local clinic where little pain control or resources to dress her extensive burns could be accessed. It took a number of further calls and conversations to ensure the mother could bring this child back to the appropriate setting, to see the doctors, most of them young themselves, who could not hold their own distress in the face of managing the distress of this child. Their only way of dealing with this had been to disengage any capacity for empathy and treat her as an other, someone not part of the circle needing compassionate care.
The other overt case this week of othering happened over weekend to a family who had traversed the continent to seek care for their child. Coming here to access radiation therapy, as none was available in their own country. On arrival they found that their child had in addition an enormous brain tumour, previously undiagnosed, and options for any hope of curative treatment were limited. They also found they could not access medical care at our state hospitals as foreigners without payment and they did not have adequate resources to do this. This weekend, being faced with a fitting and dying child, they came to the emergency room and were denied admission to the hospital by the powers that be. The distressed residents on call gave what medication they could and sent them out into the night to search themselves for a place of care. Later that same evening the consultant on call phoned to discuss other possibilities for care but the only obvious one was to re-admit this family back to the hospital. To give the care that we are bound to by oath to give, despite the rules of the administrators, the rules that divide us into being family or being other. Fortunately this family could be found. The child was re-admitted and died on the ward shortly thereafter. A story that leaves me with profound feelings of sadness in how we treat those we deem not to be worthy of care – whether it be through finance, affiliation, or any other format we have of delineating access to care and dignity.
Sitting last night at dinner, in a most affluent part of our city, surrounded by the latest fashion, cars, good food, and smiling, seemingly happy and carefree people, I could only be struck by the extreme dissonance of our world, of my world: not unique at all only to our society, even as we have a large wealth inequality; how one part of society can be quite comfortable chasing the latest material must haves, as another part, completely separate, is struggling simply for a dignified existence; how our world is divided into very definite spaces with walls regulating access to care, to resources, to education, to health, to dignity, and whether one is one side or the other can make all the difference in being a part of family or an other.
There is very little more to say in these painful musings that challenge my every moment opportunity to engage in life. That demand of me an enquiring deeply into what it is that makes a difference in my life, that gives it meaning, that causes my distress? Do we really know what causes our distress? Do we know what is activated when we cannot witness the distress of others and need to turn either them or ourselves away? And can we challenge ourselves, perhaps even a little, to stay with that distress long enough to recognise it, to know it intimately, to offer it some kindness. And when this distress shows up in the guise of an other can we give love, care, kindness and compassion that allows respect and dignity to be known.
Rumi – the poet of love, urges us to be aware of this other, to put out the welcome mat always, and in so doing be a guest house to those in need. Whether it be our own others and demons, or those of others.
This being human is a guest-house
every morning a new arrival.
A joy, a depression, a meanness,
some momentary awareness comes
as an unexpected visitor.
Welcome and entertain them all!
Even if they’re a crowd of sorrows,
who violently sweep your house empty of its furniture,
still, treat each guest honorable.
He may be clearing you out
for some new delight.
The dark thought, the shame, the malice,
meet them at the door laughing,
and invite them in.
Be grateful for whoever comes,
because each has been sent
as a guide from beyond.