Photography: Euromedia
Have you ever heard of palliative care? Do you know what it is? Are you aware of a number of people involved in it? Do you know that it is not a care for the dying but rather a care for the living? That it gives a chance for people with incurable illnesses to LIVE whatever time they have left instead of slowly fading?
These subjects – palliative care, LIFE of people often referred to as “doomed” – were a subject of a meeting on 11th October in a pillared hall of Kiev State Administration. The Ukrainian League of Development of Palliative and Hospice Care hosted a meeting entitled “Living Till the Last Breath”. The famous singers and performers, community and political figures showed their support. “I don’t wish to promote anything, - said Vasiliy Knyazevich, League’s President, - I simply want all of us to stop and think what each and every one of us can do to help”.
"What can I do?” – you have no idea how many times I asked myself this question. My job is to help children with serious conditions. I help them in their struggle for a healthy life. And sometimes this struggle is very hard, indeed. But I keep writing letters, making calls and trying to open doors… I’m looking for opportunities and money… I know how to get help and I do get it! But occasionally the need to rush around for help disappears… Because the illness is incurable… and the child doesn’t require hundreds of thousands for drugs, they just need care, painkillers and for their dreams to come true… This is the scariest moment for me. Because I know how to get funding for medical help, even when it’s a lot of money… but I have no means of helping someone who cannot be cured… A shocking sense of powerlessness hits me when I hear an exhausted mother on the phone: “No hospital will have us…” or a cry of a child in desperate need of painkillers… or… There are dozens of situations like that and every time I don’t know what to say to an exhausted mother. Since no children’s hospices exist where children could get comprehensive care and pain relief (we don’t have anywhere near enough of those for adults either). We offer no home visits of palliative teams which could help terminally ill children at home, and also educate and support their relatives. We have none of those things… so a question “What can I do? How can I make a difference?” is the one that comes up often…
And so I was thinking, as I was sitting in the pillared hall, that I couldn’t possibly create a palliative care system in Ukraine on my own. And none of us could. But we got together here – and this is a first step. We are bringing up subjects which people aren’t comfortable at discussing: because they’re used to avoiding death as a concept; somehow we usually expect death to sweep one away quickly and gracefully – here’s another step in the right direction. We are aware this is a problem that needs to be tackled – that it a huge progress in itself. I suppose, we will be progressing in baby steps but will finally arrive at a situation where mothers don’t need to call a charity fund asking how to care for a child in a coma… where relatives of cancer patients don’t buy drugs off drug-addicts because they couldn’t get a prescription for painkillers at a GP surgery… when patients with incurable conditions get adequate care and LIVE till the last breath, not fade slowly and painfully!
What can we do in this area? For starters, we need to stop hiding our heads in the sand… We must acknowledge that doctors are not gods and people are mortal. Also we need to understand that anyone can require palliative care at some point and so we’re all affected by an absence of this system in Ukraine; and realise that helping people who don’t have long left isn’t a pointless effort and a waste of time and money. It’s not even an act of mercy. This is a norm of a civilised society, since palliative care doesn’t just deal with pain relief for cancer patients in their last weeks. It helps a large group of people who have incurable illnesses that affect life expectancy. Palliative care isn’t about dying, it’s about living, about life till the last breath and the last heart beat…
