"Dying father's care questionable at Flinders Medical Centre."

My father was admitted to Flinders Medical Centre. When I arrived he was on a trolley in the corridor in the emergency department unattended. After hunting a staff member down I was told he had had a stroke, couldn't speak and had right sided weakness. Knowing that a stroke is time critical I asked about treatment and understood that as nobody was with him when he was found it was probably too late. Although it seemed that my family's knowledge of my father was ignored when it came to assessing the time of stroke given the circumstances in which he was found. This made me feel a little uncomfortable. We waited in the emergency department until a bed became available, during which time I had to ask about pain relief as my father was frowning and rubbing his head. Twice I had to inform both nursing and medical staff that oral panadol wasn't an appropriate medication given that he couldn't speak and in all probability had trouble swallowing as well. This made me feel more than a little uncomfortable.

My father became increasingly agitated, which has been a frequent pattern in his previous hospital admissions. The ward to which he was admitted was a specialized stroke unit. On this ward he was shackled as he tried to get out of bed. My father is hearing impaired which made the situation more difficult. This meant that between my sister and I we spent shifts at the hospital as if a family member was there it meant that he did not have to be shackled which made him even more agitated and quite frankly I suspect frightened. He also had a naso-gastric tube for feeding as I believed his swallowing reflexes were not strong enough and he was at risk of aspiration. One morning my sister arrived on ward to find the bed flat and him positioned head down which she thought was to prevent him from trying to get out even though he was shackled. He developed aspiration pneumonia and had to be treated with antibiotics. I had a meeting with the nurse in charge of the ward to be 'reassured' that yes that probably wasn't appropriate and that it wouldn't happen again. I also brought up the fact that nurses I saw were constantly complaining about being busy and that as a visitor that spent most of the day there, I had almost felt like I should be getting paid for things like rescuing wandering patients as they took off out the door and I felt were at risk of falling and ringing bells for patients that were crying out. I found this rather traumatic. My father was eventually specialed after what we thought was considerable agitating by my sister and myself. For this we were grateful. Although there was another incident where a nurse tried to give oral medication even though it was documented that my father was nil orally.

The road to recovery was particularly rocky. The physio's I saw on the ward were particularly wonderful. They offered encouragement and compassion. The speech therapist's we saw seemed to be always busy but also were encouraging, but we believed missed some days because of their workload. This we found distressful because my father's ability to swallow was particularly important. Every day there seemed to be a battle with care. When telling nursing staff attending my father that he was in a wet bed to be seemingly told that they were busy writing notes and would be there when they were finished I found particularity distressing and wondered how they prioritized or rather who was responsible for teaching them how to prioritize.

My father was moved into a side room as he had developed a bowel infection. After 3 days of being in bed he was being sat out of bed and going for small walks. I asked the two nurses who were looking after him one morning if he might have a shower on the shower chair instead of a wash. I received what I thought was a grunt and she appeared to rolled her eyes in disapproval. I thought it was not an unreasonable request, especially as the day before he had had a shower without incident.

My father was stripped naked, put on a shower chair and sat over the toilet before having a shower while they proceed to make his bed and I thought, chat about what they had bought at the local shopping centre the day before. I will never forget the look on my father's face as he tried to hide his genitals and tried not to shiver - it was pitiful. It had to be pointed out that I think perhaps that this wasn't good nursing care as I found a blanket to put around my father. His temperature which was recorded after this incident was 35 On so many different levels to me this was plainly wrong.

A decision had to be made whether to put a PEG in to feed him or palliate. Both my sister and I felt we were being rushed into this decision. We felt pressured because we were told that he had been in the ward for some time. Which we took as code for 'he's taking up a bed". The social worker became involved and she was wonderful as we told her our story. It seemed we almost had to go into battle with the medical staff dealing with my father to keep him alive. When discussing the idea of a PEG with the doctor on the ward he told us that he might not survive the anaesthetic. Both my sister and I felt comfortable with this and decided that he was not not for resuscitation. Our understanding was that this would require a lot of paper work if it did come to that and would be a coroners case. I was flabbergasted with this response, especially as this conversation took place in a four bed ward in front of my father and the other people in the ward. It was my father's wishes that he be given every chance of survival if sometime he was in a situation where something could be done. Knowing this was how he felt as a family we felt that his wishes had to be honored.

I spoke to my father regarding treatment. Told him that it was important that the naso-gastric stayed in until it could be replaced by something more permanent because his swallowing wasn't strong enough just yet to enable him to have enough intake to sustain him. Unsure about how much of this he understood I asked him to nod his head if he understood and he nodded his head. My father was cognisant of what was going on. I felt he recognized and smiled when we entered the room.

My father's naso-gastric tube 'fell out' we believe one afternoon as he was being transferred back to bed. The exact circumstances were a little unclear. At the same time we felt pressured into making a decision to palliate or PEG. We were told he would be a nursing home candidate with little quality of life. We were also told he would not walk..... but had been doing laps around the ward with the physio's.....so understandably it was a difficult decision with medical input not being the only consideration to be taken into account. We were offered the opportunity to speak to a palliative care physician which we were grateful for. Although he just seemed to reinforce the idea that my father's quality of life was what mattered not quantity. Which was a bit of a no brainer really.

We were contacted by the social worker to be told that we should be prepared to expect a request for a definitive answer in the family meeting which was arranged for that morning. I will forever be grateful to the social worker for her support and for her advocacy on our behalf. In the family meeting I felt as if I had to justify my father's existence and plead for his life really even though I knew ultimately the family has the final say. Even so, if we decided to PEG my father as soon as this was done we would be discharged into the first nursing home vacancy and there are some nursing homes we feel leave a lot to be desired and this was something which we as a family feared. Again, there was the overwhelming feeling that my father had occupied a bed for far too long and the hospital needed a bed. Which is something which I can understand on one level.

The decision was made to palliate. Not withdrawal of treatment but rather comfort care. All medication was withdrawn. Fluids were withdrawn. Oxygen and nebulizers were withdrawn. Anything he could tolerate orally was allowed. Pain relief was written up. This was decided on a friday and it was our understanding to hold off on anything oral until the speech therapist had come to do a further assessment, which we thought was meant to happen that afternoon. Needless to say nobody showed up and when we finally asked for them to be paged we were told that everybody had gone home and there would be somebody in the next day. So much for comfort care.

The next morning my father was semi conscious, prior to that to us he had seemed to be awake and alert. It appears that he had been written up for 5mg of morphine SC, and even though he did not appear to have obvious pain he was given this to settle as he was again trying to get out of bed. My immediate thoughts were if I had not had anything to drink for over 24 hours I too might be wanting to get out of bed to get a drink. It became obvious to me that he had been over sedated to the point of unconsciousness, this was particularly distressing as my brother was returning from overseas and we were hoping that my father would be awake enough to both recognize and spend time with him before he died.

Hours later it appeared my father was rousable and wake enough to recognize my sister and myself. We fed him some pureed apples which he not only seemed to enjoyed but beckoned for more. Hours later the nurse looking after him stood at the end of his bed and inquired if we thought he was hungry, the empty pureed apple pot was produced as proof that he was, as he had consumed the entire pot and had managed to swallow it without incident. Later the nurse in charge of the shift appeared with a piece of paper for me to sign saying that I took responsibility for my actions. I also received what I thought was a lecture on what might happened, i.e aspiration and death.

Two people in the ward remarked that they thought the nurse had been rude and that they were shocked by her behavior. On her second attempt to get me to sign a form I asked her to step into the corridor to discuss this as I felt it was not appropriate in the middle of a ward. There I had to explain to her that comfort care meant just that. If comfort care was to be commenced it was to commenced in its entirety. If my father had to wait for 3 days to be given the go ahead for oral comfort care then all medications, fluids, and oxygen were to recommenced until the speech therapist could come and he could be afforded the proper comfort care which he was entitled to receive. And if this wasn't the case I believed she had failed in her duty of care towards my father and presumably others who had gone before him and those who would come after him.

When this was eventually sorted out my father was moved into a side room to wait for death. Some staff members were wonderful bringing in CD player and CD's and dropping in to see how things were going. Luckily the palliative care physician paid a visit so we could sort out more appropriate medications. All my fathers medications were withdrawn and as a result he suffered lots burping which usually indicated that he was suffering from reflux and epigastric pain. It was just all to hard to agitate for something else again for my father. I informed the nursing staff but I felt it got me nowhere. So I gave him his nexium for a few days until the burping subsided. I don't believe I should have had to do this. I did it because I thought it relieved my fathers suffering.

My father died from respiratory failure.