“The ground of ethics in humanitarian action is a profound feeling of compassion and responsibility towards others who are living and suffering in extremis. It is a feeling of identification and sympathy that demands some reasonable and effective action as a response to suffering. Humanitarian feeling can be born out of a warm glow or a cold shiver. It may burst from the chill horror at outrageous cruelty and a strong passion to stop it; or it may spring from the depths of love and a burning desire to care for someone. It may arise between the two in a sense of sadness at suffering, and a desire to encourage and build up.”
Hugo Slim, Humanitarian Ethics: A guide to the morality of aid in war and disaster
On a recent visit to the Gaza Strip, a context enduring protracted conflict and blockade, I met with Eman*. Eman’s sister died from breast cancer four years ago. Three years ago, Eman held her seven-year-old daughter in her arms at home as she died from congenital liver disease. Two years ago, Eman was diagnosed with breast cancer. She is now in remission. Through each life-changing event, Eman received no professional social, psychological, spiritual support or home-based medical care. Formal palliative care services are limited and haphazard in Gaza and families are usually left to pick up the pieces of caring for sick or dying loved ones. I asked Eman what would have been the most important thing that someone could have done for her during her grief:
“If only someone had smiled at me when I went to the hospital to get my chemotherapy treatment. Nobody – the doctors, the nurses – nobody ever smiled. That is the one thing that would have helped.”
Eman found a local organisation set up by Gazan women with personal experience of breast cancer – the Aid and Hope Program – who gave her emotional and practical support. Eman now volunteers with the organisation to help others grieving from the loss of a loved one or living with cancer themselves. They are now her community and together they smile a lot.
Eman told me her story just as COVID-19 was beginning to spread throughout the world. Before COVID-19, palliative care was slowly gaining recognition as an important part of the healthcare continuum alongside life-saving treatment in humanitarian crises. COVID-19 presents an important opportunity to raise the urgency of palliative care in humanitarian emergencies. But there is a long way to go to lay formal foundations in places gripped by war or disaster where even basic needs like food, water and a safe home can be hard to come by.
And yet there is much communities like those in Gaza – and people like Eman – already do and can in fact teach us about caring for those who are suffering illness or dying.
In our response to coronavirus in Australia, most of us are discovering wide-eyed what it means to reach out to our vulnerable neighbours we may never have spoken with before, perhaps offering to duck to the supermarket or pharmacy; and to feel connected as a whole community as we collectively both endure and embrace this peculiar new, slow, and for some directly impacted by severe virus, immensely sad world.
This is not new for communities facing humanitarian crisis. Research shows that in crisis, people first turn to their own community for help. Humanitarian Hugo Slim has observed, “At any moment, in any day, somewhere in the world a person is suffering from the violence of armed conflict or the devastation of disaster. As surely as this person is suffering, it is equally certain that someone will be trying to help them…..this helper is usually a member of their family, a neighbour, or a friend.” As the quote at the beginning reflects, humanitarian action is a compassionate response to suffering and a treasuring of human relationships and spirit, borne out of painful adversity or intense love.
In our context, the compassionate communities movement recognises the capacity of our natural networks to respond with care in the face of illness, dying, and grief. Eman’s organisation, created out of the suffering experienced through cancer in conflict, already delivers on the cornerstone of palliative care – compassionate care. For Eman, the simple act of a smile or a friend to share her story holds this profound feeling of compassion and common humanity.
We can’t expect families and communities to take the whole burden of support in illness and death – professional help in basic medical care and in grief and bereavement remain important elements of holistic palliative care and must be aided through guidance and training. But we can do more to recognise the power of support that rises organically within communities in crisis – and learn from the small but potent acts of compassion (see my earlier paper) they afford their fellow community members every day.
*not her real name
Rachel Coghlan, PhD candidate, Centre for Humanitarian Leadership, Deakin University