Unfortunate Reality in Australia's Palliative Health Care Service

Here is a copy of a letter that was sent to the Palliative Care Association of NSW. The issues raised were quite serious. Despite a letter of sympathy for this horrible experience in Braeside Hospital - Palliative Care facility in Prairiewood, NSW, it appears the issues addressed, weren't particularly addressed.

Judge the situation for yourself, Have any of you experienced this type of neglect and poor standard of service for your loved one?

The Executive Officer
Palliative Care NSW
PO Box M48 Missenden Road
CAMPERDOWN NSW 2050

Dear Sir/Madam,

I wish to voice my dissapointment with Palliative Care services in NSW. There clearly are issues with these services, lack of funding, not enough staff and and inconsistancies in the standard of care from one facility to another.

In fact, if you happen to live in the wrong postcode you are discouraged or even refused consideration by another facility because you don't live in their geographical area, even if you can afford the service with the better reputation. Considering care in one facility maybe better than another (and I assure you this is the case), and should one have the best in private health cover, How is it that a public facility (ie Palliative Care) is able to deny you access to their facility? Something seriously stinks with the entire system if either an elderly or terminally ill patient with private cover cannot choose their own facility or doctors in that facility to treat them at the time in their life where they should be afforded this right.

I am a daughter of an Advanced Prostate Cancer patient who has been fighting for and alongside my father for a period of almost 5 years. I have fought to get him the best in doctors, specialists and treatments in this country and I have seen with my own eyes the lack of duty of care in alot of cases when it comes to the treatment of those with terminal illnesses - those the medical field have basically given up on and just want to shove into a palliative care facility because as in one practitioner's words to me - it's the end of the road.

It didn't matter that for 4 of those years, there was alot of misinformation, lack of communication and doctors that didn't seem to treat his illness aggressively and didn't diagnose changes in his condition which cost him his mobility and he was basically plugged with painkillers, it didn't even matter that I understand doctors are overloaded with patients and that even getting appointments for chemotherapy or radiotherapy or even his medical oncologist took weeks. But now he is in his final stage of his illness and the indignity he has to suffer not only from his illness but from lacklustre staff at faciliites who seem to promote a culture of "well this is a place people come to die and we'll treat pain but we won't bother addressing any other medical issues in conjunction with the particular illness" is glarlingly obvious and rather painful to watch.

But what I do have issue with is the definition of palliative care and how its practiced and how it appears to be governed.

a) Why are palliative care services only offered in conjunction with public hospitals? I understand palliative care is a fairly new concept in this country but I am surprised that private palliative care centres aren't offered in this country.

b) Why are those with private insurance not able to choose which public facility they wish to be treated at? Why are they told where they need to be treated and not given an option at which facility of their own choosing? And why do geographical boundaries exist? This I intend on pursuing with private insurance providers. Because if for instance a private patient from the south western suburbs isn't accepted into a facility in the eastern suburbs because they don't live in this area, then private insurance coverage is clearly a falsehood and offers no benefits to those suffering terminal illnesses.

Ideally all palliative care facilities should provide equally good care, but the fact is they don't. Why should my father be penalised because he lives outside a petty geographical area, after all he still lives in the Sydney metropolitan area.

I had been caring for my father at home with the help of my husband, brother and close friends who stepped up to the plate to help our family, Dad got a urinary tract infection from the incessant use of a catheter. I had him admitted into Fairfield Public Hospital. He had pain control issues and the hospital didn't want to know, and kept pressuring (and I don't mean suggesting, I mean pressure, constant) our family to have him admitted into Braeside. I had initially resisted as I had heard alot of terrible things about the hospital itself, it was a miserable place, I had heard from those I knew who had put their loved ones in their and either withdrew them or they had lost them quickly as treatment seemed to be, doping them to the eyeballs with hardcore painkillers.

I felt this psychologically would not be a good move, dad may have terminal cancer but he is only 67. How awful, being put into a place that supposedly offers palliative care, but no hope, just death from those much older than himself all around him in a haze of painkillers. It sure was the last road, even those that could have been helped or rehabilitated physically or mentally to live as well as they could, being left to die like lepers in a living morgue with the bare minimum being done, food, medicine and nothing more.

And this is whats left when you are deemed incurable and too old to live in society?

I had to my eventual regret placed my father into Braeside, after continual prodding and pressure from Fairfield Public Hospital, they didn't want to deal with him, they made it clear they wanted him out, they didn't have the facilities to deal with pain management and kept telling me over and over again they are a acute hospital and aren't able to treat him. They kept pressuring us to put him into Braeside with assurances that this was the best facility for my father. I knew then they were passing the buck and its only then I understood the whole procedure with the elderly and those terminally ill was. It seemed to me that hospital policy seemed to be, if you were over 70 and sick or terminally ill that you were told to go to Braeside. And I figured could it be any worse than the treatment he received at Fairfield Hospital?

Perhaps a pain management doctor could help him and I could bring him back home. But Fairfield did tell me that Braeside practiced no resusicitation, I thought this was illegal. How could it be that if someone had a heart attack they would not assist them? In other words if don't agree to this you cannot be admitted to Braeside, I discussed my concerns with Dr Megan Best at Braeside and she explained in greater detail, that a) my father wasn't deemed to be a cardiac risk and b) We could get him over to Fairfield Hospital if that was our wish.

What I found out was certainly an eyeopener. They were so desperate to get him to Braeside, as soon as the family agreed they wheeled him over in a wheelchair within an hour and from what I saw it seemed like just another hospital, except the smell of excrement and other bodily fluids overcame me, and all the patients were old and 90% were all asleep. To be fair, some nurses were very caring, but alot were just doing their job and quite a few were student nurses. Doctors were only seen when there was an issue with a patient and Dr Best who convinced us to give Braeside a shot was only in 2 days a week. This to me seemed to be a mobile nursing home or hospice. And it's not what I imagined palliative care to be. I can't speak for everyone and I am no doctor but the patients in the same ward as my father were in their 80's and were about to die, most were doped up the entire day and night and I had quit my job as an HR officer to look after my father as his carer, so I spent alot of time at Braeside and I got to see alot of what I didn't want to see.

Yes they should make my father comfortable, but my father despite his illness wasn't on his deathbed as yet and went through emotional turmoil each time a patient around him passed away and this was guaranteed twice a week. My father is terminally ill and required pain management control and he was placed there for a short stay, but somehow he was surrounded by death and by patients that could barely communicate with him they were under so much morphine and some slept 23 out of 24 hours and didn't touch the pittance they were fed. My father knew their stories from their relatives who came to visit. How can this atmosphere be good for any terminally ill patient with a will to live?

It seems like a lack of resources and just patient dumping the sick and the elderly together in a place waiting to die or be killed by the amount of painkillers given to them and little else. Now some relatives may wish this for their parents but not I. I wanted to give the best care for my father and keep him alive as much as I could whilst he was still very lucid, and had some kind of mobility, I wanted to bring him home to his family.

As soon as he went into Braeside his condition deteriorated rapidly, I would say a part of it was his illness and lack of care regarding it, Braeside didnt' care about his illness just his pain medication and partly the morbid, miserable atmosphere. In fact he would get so distressed they would need to give him something to calm him.

I would notice staff who didn't want to lift my father to take him to the toilet and would just tell them they he can only use a bedpan despite the fact that a week ago he was able to walk with the use of a frame, but they said, due to OH&S reasons they wouldnt' allow it. My father would cry and get distressed and would tell them, he is not an animal and wants to be assisted up onto the walking frame so that he could go to the toilet just a few feet away, yet they refused him on many occassions, until I questioned this. And I heard about OH&S over and over again, yet when he was at Fairfield Hospital this wasn't an issue, they did assist him and allowed him to use the walking frame to walk.

There were other occassions where the poor man soiled his bed because when he asked for assistance to go to the toilet he was told, they were busy and didn't have enough staff to help. I saw my father's spirit broken and I was very upset by watching him cry in shame and I felt his indignity. Meanwhile, during his stay there he continued to get infections, and considering his illness they didnt' see an urgent need to get him the acute care he required, for instance, they didnt' spot a urinary tract infection, yet my brother and I knew the symptoms from the previous experience, the nurse we told at the desk that we were concerned he may have another didn't seem to worry about his 104 F temperature and waited till the next morning to inform someone.

The poor man suffered a night of delirium and wanting to get out of bed. And he continued to get infections, I knew for a fact his sheets weren't changed daily and I would commonly see urine stains on them and on his clothing. The man was ill with infections and would soil his underwear, to add insult to injury the nursing staff would simply put it in a bag and tie it. So when I took these items of clothing home, imagine my horror to discover faeces inside his underwear, not even common sense was practiced where for OH&S reasons they should rinse out his underwear before tying it in a bag. I didn't take his laundry home each day to wash, sometimes it would be a few days, yet this would be sitting at the side of his bed or in his cupboard. Disgusting. Palliative Care indeed.

The final straw came when 3 weeks ago I walked into Braeside at 9.30pm and my father's room was opposite to the nurses desk. I had counted 5 nursing staff at the desk just chatting amongst themselves. The light was turned out in my father's ward, I saw my father half way out of the bed moaning at the top of his voice, almost screaming, I walked over to him switched on his light and his face was bright crimson, he kept speaking incohrently, asking me to give him tablets and to help him and he continued to moan, I was horrified and rushed to the desk and said, What on earth is going on here? my father is very ill? I want the doctor here now. I was advised he had an infection and was given oral antibiotics - they obviously were not working, he was suffering so much and he was ignored, by no less that 5 nursing staff. I said he needs acute care now. I want him transferred to Fairfield Hospital asap. I was told they needed to call the doctor, and after they had done so told me that the doctor can give him anitbiotics intravenously and they will check on him tommorow morning. Not good enough, he was burning, had an obvious very high temperature and needed the care now. I was told they could give him antibiotics intravenously but not fluid through the drip as he was dehydrated badly they didn't have a drip? not does it appear a doctor on hand as I was forced to negotiate my father's care in an urgent situation with a doctor over the phone.

I refused to accept this and I advised I have an enduring power of attorney and my wish is for him to be transferred to Fairfield. They then called the doctor back who spoke to me and tried to do everything in his power not to have my father transferred. I finally said, Doctor are you telling me that you will not organise for an ambulance? Of course he said no, and said he would organise for an ambulance. It took 1 hour for an ambulance to pick him up - Fairfield Hospital is next door, less than 3 minutes away, yet I had to wait for 1 hour. It appears that my father had a bad infection in his left leg where he had dvt and he had a blister on his heel that broke open with liquid pouring out of his leg.

Is this what palliative care is? I vowed never to admit him into Braeside again, I am convinced I saved my father's life that night and it had nothing to do with the palliative care offered at Braeside, the fact is, it wasn't offered adequately. And I've wondered how many other patients are dealt with in this way? Palliative care may ideally be for caring and the comfort of those, but I am not convinced that a terminally ill cancer patient should be placed in an area where this is the standard of care. I am not in favour of a palliative care system that offers morhpine but little else and still does not treat the underlying illness with regards to those suffering from one, as opposed to the elderly that are about to die in a week or so time.

There seems to be shortfall that isn't addressed properly, my father may require palliative care, ie pain management but he is not a right off and I will not accept him being treated as one, the illness itself should still require treatment and monitoring which is NOT being done by the so called palliative care facility and I am certain I am not the only one who realises this and expects more by way of care for those who deserve better at this time in their lives.

And this is how those who have been given a life sentence tend to pass away, their underlying illness isn't being treated at facilities such as Braeside, and they only focus on end of life and pain mangement care, therefore, once you stop treating the illness or monitoring it, it does end up killing one sooner than if they had received continual treatment for their illness (if possible) and the fact is, terminally ill patients should be treated at a facility where they do have care for their pain management and symptoms as well as still being treated for that very illness and not simply be put out to pasture in a facility where the aim is to help you die with morphined comfort.

The fact that I have to chase around his oncologist to see where the cancer has gone and to see if it requires or can have treatment and then have to deal with the palliative care part of his care in two different facilities with two seperate teams of doctors is incredible. And this is the best Australia can do in 2009? I have lived in the United States where this just does not happen, no matter what stage of terminal illness you are at, you are given the facilities, hope and treatment should it be worth having and you aren't dismissed to a living morgue to be doped up on morphine until your body can no longer take it and you pass away. In fact, if treatment like what I experienced was given in the US, lawsuits would be flying all over the place and for good reason.

I am just one voice describing my experience as a carer, imagine a patient who can't speak for themselves or has nobody who can. There is alot that isn't being done by way of palliative care services in this state, and I realise there is a lack of funding, but terminally ill patients deserve so much more, and frankly, I worry about getting old or terminally ill here. Having to suffer such indignity, lack of care and nursing staff who are just doing their job here.

I want better for my father and whilst I realise you represent palliative care facilities in NSW, but there should be representatives who represent families and carers who may want to push hard enough like myself to improve the unacceptable situation in this state.

Regards,