- Early Palliative Care is for the benefit of the patient
Unfortunately, it’s really all about costs, much research is going on to demonstrate that early palliative care can reduce costs. This is great news for governments and health services. This is also great news for agencies making money from Palliative Care and for those with a career in Palliative Care. However it is not necessarily the case that it is good news for the patients.
Health services are under an extreme amount of resource pressure as healthcare funding is not given the priority it should get. Dying people, the disabled and those over 65 are not considered important by society and there is a tendency to blame the sick person for putting pressure on resources. People are being pushed on to Palliative Care months or years before they need it.
Before my families’ experience with palliative care, I thought palliative care was a good thing that strove to help people. I now realise just how naïve I was. While all people need good end of life care in the last few weeks of life, palliative care is no longer about end of life care. It has become a process of seeing how quickly people can be taken out of the acute care system and encouraged to die as quickly and cheaply as possible, they are told it is the dignified thing to do.
2. Palliative Care will provide good pain relief
While this may be the case in theory. In practice palliative care patients are seen as a drain on resources, and once they are labelled as “palliative” they are not seen as important, they can be pushed into a corner and forgotten. While in hospital for a surgical procedure, my family member was given no choice but to have Palliative Care manage pain. The only doctor that came near him to manage pain was a brand new intern just weeks out of medical school. It seemed to me that palliative care was the only area of medicine that the hospital did not provide supervision for interns. ( In other hospital departments, I have always seen interns followed by a more senior doctor ). The intern had no expertise in pain management, she used a table that any hospital intern or cleaner could follow if need be. On one occasion, she carried out a pain assessment without walking in and seeing the patient. I was not able to get a response about this from senior palliative care doctors, the health ombudsman, or the health minister, I assume they all see palliative care patients as unimportant.
3. Palliative Care Doctors and Nurses are caring and compassionate.
If one believes this, as I did, then one may be terribly disappointed. I do not doubt that there are many very compassionate and caring overworked, under resourced carers and nurses whose role it is to provide end of life care and many people find this a great help especially concerning the death of elderly relatives. My family member who was not elderly received good end of life care in a private hospital and there were good doctors and wonderful oncology nurses. However prior to this , we had months of terrible experience in the public health system where specialised palliative care staff seemed cold and uncaring. They also seemed to have no awareness that they lacked basic communication skills.
Having had a terrible experience, I tried to talk to senior palliative care doctors. I was shocked by what I perceived as their arrogance and highly defensive attitude. They seemed caught up in their own importance and unwilling to listen. I could not see any concern at all for the welfare of patients.
4. Palliative Care cares for the family and carers
This was totally non existent. Having attended public hospital outpatients appointments and seeing palliative care staff at the hospital, as a 24 hr carer, no one ever asked how I was coping or what help I needed. However palliative care staff love to promote themselves by saying that they care for families.
5.Peak bodies advocate for Palliative Care Patients
When I contacted the peak body, Palliative Care Queensland, I was shocked by their complete disinterest. I wrote a number of times to Palliative Care Queensland to ask why they were not interested given that they claimed in their Mission Statement and in their Objectives that they advocate for consumers. They just referred me to Health Consumers QLD who told me they had no funding for palliative care. Palliative Care Queensland gets its funding from service providers and I assume this is why they only advocate for service providers. I noticed that the then President of Palliative Care Queensland was also the Director of the health service with the most to gain financially from contracts to provide palliative care services to QLD public patients. After a letter from the Health Minister, Palliative Care Queensland changed their Mission Statement and their Objectives on their website to say something about collective advocacy. They also wrote me a very patronising letter. I could not find any organisation that advocates for palliative care patients in Queensland.
This blog is my personal perception based on my family’s experience in Brisbane, Australia.