"Lack of palliative care for my parent"

Recently my parent was taken to hospital, gravely ill with a chest infection. My parent was in their early 90’s and had a history of advanced emphysema and colonization. The ED staff at Caboolture Hospital, in particular the registrar Simon, was incredible. After speaking with the medical registrar we agreed on a plan, that given the very serious state of my parent’s presentation, that their chances of surviving were slim, and that we would trial 24 - 48 hours of IV antibiotics and then if no improvement, offer palliative care. We also agreed that my parent was not for resuscitation. My parent was in and out of consciousness, but when awake was aware of who we were and able to make sounds but not speak. My parent was given a dose of IV morphine to make their breathing less distressed and remove pain. My parent was moved to another ward and on arriving there a very competent nurse, whose name we don't know, checked my parent from head to toe, made them comfortable and ensured pressure area points were covered. Unfortunately this is where praise for the hospital staff ends.

Later that night my other parent, partner and I returned home to have something to eat and have a shower. The medical registrar from the hospital called and said they thought we should come in as they thought my parent was about to die. We went in and when we got there my parent opened their eyes and asked for a glass of scotch. My parent talked about what they wanted for us to do at Christmas. We told my parent we loved them. My parent was no different to how they had been when we left them. I noticed that my parent’s IV cannula had been removed and so I spoke with a nurse who said my parent’s hi-flow oxygen was also to be removed. There was no discussion about this and as we were all in shock about what was happening I didn't think to question what was happening at this point.

During the course of the night (my other parent and I stayed overnight) and the next day the only time a nurse entered the room was when we requested pain relief for my parent, on one occasion to turn my parent and once to bathe them. Pain relief was not offered and was only provided when we asked for it after asking parent if they were in pain and my parent nodding. They were injecting my parent with subcutaneous morphine into their stomach and on the third time I questioned whether they could place a butterfly needle so my parent didn't have to keep receiving injections. The night duty nurse agreed this would be sensible and placed one. On one occasion during the night nurses came to turn my parent (the only time in his entire stay they attended to do this was the day after they were admitted) and they gave no pain relief prior to doing so. On lying my parent flat they became extremely distressed and managed to sit themselves up, screaming out "please help me".

I spoke to the night nurse about my parent’s oxygen being removed and asked if they could have it back in place to ease the distress. We agreed that it wouldn't prolong my parent’s life and would make them more comfortable so my parent was given a small amount of oxygen 1l/min through nasal prongs.

The next morning two nurses bathed my parent, my sibling went for a walk and when they returned half an hour later, the nurses had left. My parent was gurgling and had a lot of secretions, which was causing distress and we asked three times if my parent had been prescribed anything like Atropine to dry these up. On the third time we asked, some was administered. That afternoon the medical team came to review my parent. Both my sibling  and I spoke to the medical team about the sub optimal management of my parent’s pain and distress and the extremely poor nursing care. They agreed they could do better and said they would start an infusion pump with a mixture of midazolam, morphine and another agent. They also said they would speak with the nursing staff. About ten minutes after they left, the two nurses returned and said they were going to turn my parent. I advised I would prefer them to give my parent pain relief and then come back in twenty minutes after it had worked to turn my parent, as on the other occasion they had been turned and had become very distressed. One of the nurses barked at me sarcastically and said; well that's your choice. I said I thought it was a reasonable request and that as my parent had been in the same position since early that morning that morning I didn't think another twenty minutes would make any difference. The nurse became argumentative about the time and said it was actually later in the morning, to which I said nearly six hours in the same position was just that, nearly six hours.

I went out to speak to the nurse in charge of the shift, whose name I don't know. I told them that I was not happy with the nursing care and in particularly my family did not need a nurse being rude and argumentative with us while my parent was dying. The nurse agreed they should do better.

After the infusion pump commenced, my parent became unconscious. The secretions in my parent’s lungs were so bad all you could hear was gurgling, as if my parent was drowning in their own lungs. It was the most horrific death I have ever seen, and as I used to work as a nurse in oncology, I have seen hundreds. That night my parent passed.

To summarise the issues:

1. Most nurses did not wear identification so you didn't know their name, and as there were so many different types of uniforms it was very difficult to tell who was a nurse. At one point my sibling went looking for a nurse and found someone who turned out to be a physio.

2. No one came to check on my parent voluntarily, ever, apart from bathing them one morning. No one asked my family if we were ok, if we needed anything or how we were coping with the situation

3. My parent’s medical plan changed without any consultation with us, from 24 - 48 hours of antibiotics and then review for palliation, to just removing all treatment. My other parent felt very angry about not being consulted. It's not that we believed my parent would live, just that the opportunity to talk together with medical staff and change the plan, was not afforded.

4. My parent’s palliative care was a joke. Their death was riddled in pain, distress and indignity. My sibling is experiencing intrusive flashbacks and I cannot get the sounds of my parent calling out for help out of my mind. I feel we failed my parent because we didn't advocate strongly enough for them. At the same time I was distressed and not thinking clearly.

5. At one point at night as I was walking down the hall, a patient who had their buzzer activated called out to me and said, please tell them to hurry, I am about to soil myself. I went and told two nurses who were standing talking at a mobile workstation and neither of them made any movements to attend to this patient.