"Community palliative care"

I feel let down by the healthcare system in relation to my spouse's care with the community palliative care at Bunbury regional hospital. As a nurse i thought maybe my expectations of the care were unrealistic but my spouse did not know what they were supposed to do so i know they did not do anything for us and I expected them to do more for my spouse.

They actually discharged a terminal patient from palliative care and when a palliative care Dr sent another referral they did not contact us until late the following month when my spouse was deteriorating because of their terminal diagnosis. The oncologist said my spouse should never of been discharged?

They would turn up for a visit and sit and chat. No assessment of health, discuss medication or anything of significance to my spouse's wellbeing. My spouse had concerns that they raised quite often and one occasion we saw a social worker as they wanted help with their “paper work” it took weeks for this to happen and there was no urgency when my spouse wanted to get this sorted before it was too late. The social worker just talked the whole visit. No paper work started and my spouse was told they would come back in 2 weeks. When i got home from work they told me this and said but i don’t  know if i have two weeks? I rang to escalate this and we got a response but only a health directive was done. My spouse needed help to complete a will, super etc and they did not even approach this with them as being a priority for a person with a terminal illness. This should be a topic of discussion when considering getting affairs in order and they never approached this subject at all. This left us both feeling frustrated and in the final week of my spouse's life it was still not sorted.

The nursing side of care I am really not sure what they actually do for patients? I felt they literally did nothing. One person, who came back in May 2024 to readmit my spouse to the service, even failed to drop a feedback form when they said they would as we expressed concern for what happened when my spouse was discharged. My spouse asked this person to explain what they was supposed to do and did tell them. Nobody has done anything for me!

The cancer care coordinator at the homemaker centre we saw in march actually said congratulations when we entered their office. We were both shocked as they did not even know my spouse was not well? The coordinator thought my spouse was in remission which as an oncology nurse i was angry as there was no such thing as remission for a terminal patient as you may only have stable disease. It is never a guarantee.

I was also shocked that we did not get support from the NET cancer group as this type of cancer is aggressive and has significant issues associated with carcinoid syndrome. The cancer secretes serotonin and effects emotions and heart function but nobody knew anything about this. I  educated myself in the last weeks of my spouse's life as they had symptoms we did not understand. When i found the NET cancer web page it made so much sense and this cancer is know as a zebra disease as it does not behave like your usual cancer.

I wish the palliative care team had a pathway to follow like what needs to be achieved in the terminal disease process of a “young” person that does not expect they would be dealing with this prematurely. I would hope they they were proactive in their care and preempt what is required in order to plan for death like will, super terminal payments, pain management and actual nursing care. The OT did not even help with acrod or equipment that was needed as my spouse declined. In fact the OT did not even see my spouse when we asked for care equipment. They claim they have palliative care doctors  to manage medication but we never saw them in community at all and we were told that a dr would come out when my spouse was in liver failure.

I rang and so did my child on the friday before my spouse passed and were told no dr on duty so we had to go to ED. I took them to ED where Dr L was amazing. She commenced treatment for fluid and toxins from liver failing. She encouraged us to go to ED for an urgent scan. My spouse didn't want to go but agreed to go after dinner and later that night. We were supposed to get more treatment to relieve symptoms but they did nothing until early hours of morning and they did do scan which confirmed ascites.

We were discharged in the early morning. No sleep, were expecting palliative care nurse to come late morning. They turned up while I was at vets with my dog that was in pain. My spouse told me when I got home that the nurse came but didn't do anything. I was soo angry. I believe they knew what was happening and had advised us to got to ED? We were told the dr would come to see my spouse the day following ED presentation too but no Dr apparently.

I called and they said yes we saw my spouse and would call tomorrow. I told them “no you wont!” They were supposed to organise treatment to relieve symptoms. My spouse had low platelets and Dr wanted an infusion because of bleeding risk and also IV albumin to reduce symptoms of toxin build up from liver. Nothing was done, I believe they could clearly see swelling in legs and bruising but did nothing. I had to tell them what needed to be done and we were supposed to be admitted to another hospital for care. They called us 2 hours later to say we had direct admission to ward. The staff there were amazing in my spouse's final days.