2015; Volume 16, No 10, October
Global Palliative Care Community Highlights – the column that brings you initiatives from across the world
Rev’d Varghese K. Abraham
Hidden Lives/Hidden Patients: Celebrating World Hospice and Palliative Care Day
Rev’d. Varghese K. Abraham, the Mar Thoma Church in Kerala, India, has been working in palliative care for the past 11 years and is a member of IAHPC. He reflects on what it means to be ‘hidden’ and urges us to take a wider view.
I was hungry
And you formed a humanitarian group
To discuss my hungerI was naked
And you wept quietly in your chapel
And prayed for meI was sick
And you knelt and thanked God
For your healthYet, still when you are so holy, saintly and peaceful
I’m still so hungry, lowly and wretched.
The theme of this year’s World Hospice and Palliative Care Day, Hidden Lives/Hidden Patients, reminds us of the hidden facts in relation to the patients and family in our community. On the surface, it would seem that the society around us is leading a normal life without bothering with any of the real issues. We can easily move on without facing the real problems and we can safely live on without addressing the real issues.
What we most need for the whole world is ‘Care’ – in all its different forms and levels. Palliative care is now spreading across the world. It extends far beyond physical symptom relief; it seeks to integrate physical, psychological, social and spiritual aspects of care. And yet, sadly, so many people are left out of mainstream care for several reasons.
The name, nature and seriousness of the disease are often hidden from the patients in certain situations. What medical procedures are being used for the treatment? Every patient has the right to know how sick he is, what disease he is suffering from, how advanced the disease is, any probabilities of survival and any available alternatives. But some diseases are stigmatized by society and they have to be hidden from the eyes of the public. Awareness of impending death is hidden from the patient who then leaves this world with unresolved issues.
As patients encounter the various roles they are forced to play within today’s complex medical environment, they may experience depersonalization and alienation. When we are able to pick up clues we will realize that patients wish to share their concerns with another human being and will react with relief and hope. Frequent breakdowns in communication leave patients and family members in a state of confusion, abandonment and ignorance. Many people are crippled with fear of so many things – including the future.
The father came back from the funeral rites.
His boy of seven stood at the window, with eyes wide open
and a golden amulet hanging from his neck,
full of thoughts too difficult for his age.
His father took him in his arms and the boy asked him,
“Where is mother?”
“In Heaven,” answered his father, pointing to the sky.
The boy raised his eyes to the sky and long gazed in silence.
His bewildered mind sent abroad into the night the question,
“Where is Heaven?”
No answer came: and the stars seemed like
the burning tears of that ignorant darkness.Tagore, from The Fugitive, Part 11, XXI
Human existence is too fragile. Human aspiration is too ensnared in emotion and desire. If there is consolation available to us in the world it is to be found in the mutuality of encounter between vulnerable and mortal beings. The spiritual dimensions of the patient and family are acknowledged, explored, and responded to appropriately. At the same time, the religious beliefs of the patient and family must be recognized and respected.
Impossibilities are possibilities that have not yet been attempted. This is not a matter of ‘hiddenness’ – it is a matter of ‘wideness’. As palliative care workers, we should try to widen the horizons of understanding for both human beings and society. “Not to be hidden but to be wider”. Palliative care becomes community care as well as clinical care. This is care beyond cure and should be continued and coordinated. Openness to the unexpected, unwanted and unrevealed will result in adding life to the days of our patients.
When life seems to be scattered and shattered, whenever hope is at the bottom – as hospice and palliative care workers it is our responsibility to meet people on the road of despair and pain. By keeping our eyes wide open, we can see the hidden realities and support those who are suffering. Let us join our hands together and have a better way of living for all, especially those who are at the last stages of their life.
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Tell us your story…
We’d love to hear from readers how you celebrated World Hospice and Palliative Care Day 2015. Tell us in no more than 100 words plus a picture what you did to support the event. Please keep your entries short – we are really looking for pictures and short explanations that we can publish in our newsletter. Please send entries to the editor.