Palliative care……..my thoughts.

Palliative care……..my thoughts.

With all the current talk about assisted dying laws in the state of Victoria here in Australia I thought it was time I put my thoughts to paper so to speak as I come from the point of view of the patient having not only been clinically dead but more importantly having dealt with a year of terminal illness and doing it all again.

The first time around I was lucky in that a donor heart was found with just a very small amount of time left. my organs were starting to shut down and my trips to hospital for tune ups became more and more frequent as kidneys started to fail completely in sympathy with my heart and lungs.

Whilst there was a happy interlude that time around unfortunately this time around is all bad news. Unlike cancer patients I don’t have the luxury of operations or treatments like chemo to save or at least put me in remission I am just going to die. Its just a matter of how soon.

We know that less than half of people in the western world who are diagnosed with a form of cancer actually die because of it.  Its in the 30’s in terms of percentages here in Australia. People who have the ailments I deal with have a 100% fatal outcome. We deal with just as much pain if not more and the treatments at the high end before it is decided nothing further can be done all involve being cut open and have the most horrific options. We learn to lay back and cope because if you don’t have the word cancer in your diagnosis people just don’t care.

I could go on about this but my anger towards the way heart and lung disease is treated compared to the various forms of cancer simply come down to both how funding decisions are made and how the unfortunately uneducated public perceive this very serious problem of lack of funding in the right areas.

For example over the last couple of years my body has started to fade due to my medical issues. I have and continue to deal with the most awful of daily problems that involve enormous amounts of pain, 24 hour a day oxygen at a high rate plus the organs that the diseases affect now fading in their function. People see me starting to feel the effects publicly as I can no longer hide it but for the most part tend to ignore it. During this time however I have developed a form of blood cancer called polycythemia due to my lungs not being able to keep up oxygenating my blood. This is deadly but out of all the deadly things that are wrong with me in some ways it is the least of my worries.

It is telling about the general community and how they perceive the seriousness of certain ailments that as soon as the polycythemia was mentioned in my posts that everyone started to show enormous concern. The classic “oh no you haven’t got cancer have you” closely followed by the equally irritating “thoughts and prayers” are with you. The fact that the far more serious heart and lung issues didn’t matter to them but that they only heard the word cancer is telling about how we perceive things in current society and it is not good.

The fact that people who have no qualification (and I include most medical people in this) are allowed to decide whether someone should be allowed to make their own decisions on life and death is frightening. As the patient and the one going through this living hell with constant all over body pain from the things mentioned above plus various forms of rheumatologic issues plus a very painful abdominal hernia that cannot be operated on due to the fact that I can no longer undergo general anaesthetic I simply see so called medical professionals that are overwhelmed when they see everything I have to deal with and cannot understand how I continue.   

Due to the discussions on voluntary euthanasia and the potential for laws being passed in Victoria, Australia I feel I am qualified to speak on this subject far more so than my former colleagues in the broadcast media and the so called experts they bring in to talk to.

The right to choose how and when we die when faced with terminal illness is a fundamental human right. You have no business deciding how I can live or die.

Here in Australia we have a federal health minister but out health system just like our law enforcement is broken up into what are effectively state run branches. To say they are a mess is an understatement but that discussion is for another time.

I live in the state of Queensland. The most spread out population and the only state where more people live outside the capital than within it. The system is falling apart here with doctors on a large scale having little in the way of empathy for their patients. When I was waiting on the possibility of a second heart transplant it was made clear to me by a doctor that I should watch what I say as she had been in committee meetings where it had been a deciding factor in whether patients got an organ or not. They will of course deny this but given what I have endured with certain other Queensland Health medical professionals I believe her.

I always say that the phrases “Queensland Health” and “pain relief” amount to an oxymoron. In the last 10 years I have not had a hospital stay where my pain relief has been taken care of. I am a big guy who soaks up meds like they are lollies. That is just the way my body deals with them. Am I ever listened to? No!

Back in 2012 I presented at Redlands Hospital in Brisbane with a particularly bad episode of gout with the skin breaking on my big toe to allow whatever was inside to come out. I was treated by an middle aged doc who could see I was in agony and he organised for my pain relief. I knew the drug and I knew the dosage well and this would have done the trick so I could go home and get his script filled. After he walked away the Slavic female doc with him looked at me and said I didn’t need it and halved my dosage and you guessed it I was in agony. This is the younger generation of docs and nurses coming through the Qld system right now.

The main aspect of palliative care that most patients care about is the loss of pain relief and dignity. Unfortunately Queensland Health have failed dismally in this area and are forcing patients to take matters into their own hands. if you or a family member have had a positive story to tell i don't care. Mine and others incredibly negative experiences are far more important as change needs to happen and patting these fools on the back means more people die in agony and without dignity.

If I choose to die at home at a time and way of my choosing that does not endanger anyone else then what business is it of yours.

It isn’t!

Despite what many doctors and nurses may tell you in this field there does come a time in a great many of cases where the pain killers don’t work anymore and as far as the patient is concerned (and frankly that is the only opinion that matters) there is too much of a loss of dignity too bear.

Why should the patient have to wait that long and start begging and then still get told no! Just because a few people may slip through the system does that mean the vast majority of those of us in this situation should die in agony because of some idiot's right wing beliefs?

I have one thing to say to Qld Health and the Palliative care people who are trying to save their jobs.

Bugger off and stay out of my death!