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What Palliative Care Is and What It Is Not

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My son, Brendan Bjorn, is 12 years old. He has complex needs, which I provide on a daily and nightly basis as a single parent carer. The care level he requires is referred to as palliative care. In short, his condition is life-limiting and the care he receives is to make his life as whole, comfortable, painless and as fulfilling as it can be.

What palliative care is:

Palliative care is a holistic approach which includes the family members.

Palliative care integrates the psychological and spiritual aspects of care, including grief counselling, prior to loss.

Palliative care enhances quality of life and allows the person to live as actively and as fully as possible.

Palliative care is a team approach involving a support network of doctors, therapists, social workers, mental health professionals, nurses and various social supports.

Palliative care provides the best quality of life possible for the person with the life-limiting condition — and their family — while they walk on this journey together.

What palliative care does not mean:

Palliative care does not mean the person — in this case my own precious son — is to be given up on, set aside with no hope, and thus put at the bottom of waiting lists for care.

Palliative care does not mean my son doesn’t deserve the chance to have as full a life as he possibly can. Yet — and this may ruffle some people’s feathers — I see time and time again that some agencies, charities, government bodies and even the public (for example, online fundraisers), are less willing to assist in providing needed care items or support for a palliative child compared to a child who has a possibility to survive. In fact, I’ve had people say this directly to me. And you know what? After 12 years on this journey, it seems many people think that way.

But just because my son receives palliative care, it does not mean he isn’t worthy of living life to its full potential. Nor does it mean he isn’t worthy of obtaining the special equipment that will facilitate him having that fullest life experience possible — items such as a proper ramp into the house, a safe bathing system, a reliable and safe wheelchair accessible van, and a home modified for hoist and wheelchair usage.

Palliative care does not necessarily mean my son will die tomorrow. Yes, he could, and that is the hard, cold fact I am faced with every single day. But he could also live for two, three, four or more years. No one knows; no one can predict when that time will come. So in the meantime, his life should be surrounded with the gold standard ideals of what palliative care is all about, and to do anything less is simply inhumane.

Palliative care does not give license for anyone to give up caring about my son. In particular, many government policy makers who seemingly would rather ignore his many profound, complex needs. I am often left wondering, do they secretly hope he will pass sooner rather than later to become less of a “burden on the State,” or do they just not care about children like mine at all?

Palliative care does not mean the family’s needs should be ignored. In fact, it is written into the gold standard of what palliative care is to be, as written by the World Health Organisation. Yet, if that aspect of proper palliative care is ignored, it is not just the person with the life-limiting condition who can suffer, but it is the family carer and the family as a whole that will suffer, all which ultimately diminishes the level of care provided to the person who needs it most. In this case, my son, Brendan Bjorn.

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Thinkstock image by Sohel_Parvez_Haque

Originally published: May 17, 2017
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