Experts love to label and dissect the grieving process as if they are unaware of the extreme complexity of human nature and human relationships which surpasses understanding.
Having seen too many people die younger than anticipated, and watched families struggle to pick up the pieces of broken worlds, I see grief as too complicated to begin to understand.
I can’t know what people feel but I see the damage. I see acute and chronic changes in physical health. I see unemployment and financial losses. I hear of suicides and I’ve seen the effects of disappointment and loss of hope.
For me, I know what made grief worse.
- Lack of good medical care
- Poor communication by health professionals
- Seemingly arrogant palliative care specialists who seem to believe that they always know best.
I was once very naive and believed that good care would be there when it was needed, but now I have seen how badly patients can be treated just because they have a life limiting illness. I have watched a family member have his hope destroyed as he was coerced on to palliative care months before they were expected to need end of life care. I watched their hope and control stripped away by palliative care staff who seem to think they are cognitively superior to clients and their families. Why should people be looked down on by those who are paid to care and respect ?
It’s heartbreaking to see that imposed care “choices” are really all about money and reducing hospital costs. To see patients treated as less than human just because they cannot overcome their cancer. To have no where to turn for help when patients are neglected. To be powerless while family members are treated badly. To find the health service seem so hostile to feedback, all the time while they love to say that they listen to patients and families. Then to find there is no effective health complaints system and that no one cares how much people suffer. The reality is- they just want to save money
I hear palliative care staff carry on about people in western society having to reconnect and accept death as a normal part of life. But dying early from cancer is not normal and poor medical care should never be seen as normal. I have a multicultural family and live in a multicultural society. I see no evidence that western people handle grief in a less healthy manner than others. I wonder what makes palliative care staff think that they have a right to tell people how they should face illness and death. All people, all cultures experience grief and I believe that lack of good medical care would cause anguish in any culture.
Prior to my family members illness, I had seen friends and relatives die after treatment in the private system. They got good care and support all the way through their illness. Nobody ever tried to push them on to palliative care. They were treated with dignity and respect while receiving good pain management. I thought this was normal. I thought we could take good health care for granted in Australia. I had no way of knowing that patients could be treated so differently in the Queensland public health system.
I never expected to see a family member pressured for months to accept in home palliative care that they did not need or want. This caused so much unnecessary added stress to what was already a very difficult situation. In home palliative care never became necessary so all this stress was for nothing. Why waste resources giving palliative care to people who don’t want it and cause them stress while so many elderly people desperately need good end of life care and can’t get it ?
This experience has destroyed my faith in our health care system. My pride in my country was shattered as I saw people treated as nothing more than a burden to the system. I saw people told that they wanted the cheapest treatment in such a way to make them feel they had no choices.
We are advancing quickly in health care. Financial pressure sees a global move toward “completed life” and “assisted dying”. No matter how pretty euthanasia is painted, it is chiefly an economic policy. As a society we do not want to pay the cost of caring for the sick. We have the resources to provide medical care and pain management but we don’t want to be burdened.