How many times have I heard that we need to talk about death ?
The truth is there is no one willing to listen.
For me, Palliative Care week is about hearing carefully chosen positive stories that only increase the terrible disappointment regarding the reality of just how bad public health palliative care experiences can be, especially in Queensland.
Many people do not have a positive story.
If organisations like Palliative Care Australia and the Cancer Council were really interested in improving the quality of palliative care that people receive, they would be willing to listen to the bad experiences as well as the good experiences. If my family had a good experience, then everyone would be willing to listen. But our experience was devastating and no one will listen. ( Their websites only seem willing to publish positive stories )
Our experience was crushingly disappointing and there was nowhere to go for help. This is not unusual. If we are serious about talking about death, then we must also face up to acknowledging that many people have a horrible experience with palliative care services. To focus only on the good, is not realistic. Seeing Palliative Care through rose coloured glasses will not improve the standard of care.
Our experience was all about destroying hope, being coerced into palliative care way too soon, taking control away from the patient, reducing choices for the patient, imposing the values of palliative care staff on to the patient, and failure to provide good care and pain management.
I have searched hard and found no organisation that supports palliative care patients and their families when things go wrong. There is no where to go for help. The health service, the Health Department, and the Health Ombudsman all seem disinterested and seem to automatically label anything to do with palliative care as unimportant. It seems the focus is on getting as many people as possible into early palliative care as this will have the potential to reduce hospital costs. I did not find anyone in the Health Department, the Health Service or the Palliative Care Industry who seemed genuine enough to care about the welfare of individual patients. I believe Palliative care experts presented as defensive, not willing to listen and not interested in anything except self promotion.
I was quickly judged as someone who could not accept death and come to terms with grief. Had they listened, they would have known that this was not the case. I just wanted our family member treated with respect and dignity, I wanted to see that they were receiving good care. This should not be too much to ask. Why is it that the medical profession seems to treat Palliative Care patients as less human than other patients?