"From home to hospital to aged care"

This is a typical journey so am sharing this story to better understand some of the end of life processes in our hospital and aged care systems, and in the hope of raising awareness for others.

My elderly parent was admitted to hospital via Emergency at Sir Charles Gairdner and was well looked after and diagnosed.

Interestingly, on their My Health Record, a Goals of Care document appeared in the Advanced Care Planning documents section.

It notes that there was patient agreement to upload to My Health Record but I feel that isn't quite right. While my parent and my sibling spoke to many people and had a number of conversations about care preferences, they were not explicitly aware that this would be encoded into a Goals of Care document which would then be uploaded to My Health Record. Also, from time to time it was not quite accurate, e.g. it says there is no EPG but in fact there is. Another confusing thing was the Goals of Care document is endorsed until a certain date, but I had understood it to be a document specific to each occasion of care.

My parent was transferred to Osborne Park and then home, and we were aware that we could set up an admission to the RAILS team so that if my parent needed another hospital stay so they could go straight to Osborne Park without having to go to Sir Charles Gairdner. This involved a slightly convoluted process trying to get GP endorsement and as their regular GP was on holiday it wasn't in place before their next admission was required. We were able to get it sorted but it was more difficult that it needed to be, in my opinion. It was so worth it though to be able to transfer my parent from home to Osborne by car, into a wheelchair at Reception and straight up to the ward where their bed was awaiting.

The medical, nursing and allied health care was again very good. I don't think I ever saw a bell unanswered, and the staff were, generally speaking, kind and skilful. Unfortunately my parent was sharing a room with another patient who was very confused and disoriented. This undermined any curative opportunity being in hospital provided my parent. Eventually my parent experienced delerium, which was very scary for all of us and convinced my parent that they could no longer return home. I found a leaflet about delerium which was very helpful and left it by my parent’s bedside for others to look at.

We decided it would be better to get my parent to a private hospital where they could at least have a private room. At this stage we were not sure how long we had my parent, and the Palliative Care Team were included in the discharge process. There was a comprehensive discharge summary uploaded to My Health Record which helped us to smooth the transition.

The room at Hollywood Hospital was a better environment, but interestingly I found the staff were not very plentiful or attentive. What was really difficult though was the meal ordering system. In amongst the stress of getting my parent to Hollywood for what we thought might be their last weeks on earth, we were faced with a choice of using the paper based meal ordering system, with many fewer choices, or we could phone in meals three times a day and give my parent more varied options for their meals. Whatever choice we made we had to stick to, we couldn't then change our minds. With food as one of the few comforts we could offer them, of course we chose the option requiring me to call in their order three times a day. So I got very used to the music, waiting on hold, and then putting in my parent's order. I put alarms on my phone three times a day so I didn't forget. The one time I did was so distressing to me but luckily a family member was on hand to get them something from the canteen. My parent felt like this meal ordering system was a huge burden on us and it bothered them.

After my parent was reviewed by the team, we had the good news that they were in no immediate danger - but it was definitely time to get a residential aged care bed for them. This is the moment all families dread. We were very lucky that a bed turned up with 48 hours and we were able to transfer my parent via car and their wheelchair as they had improved so much after their two weeks of good meals and care.

When we got to the residential aged care facility, we waited in vain for the discharge summary to appear. Apparently Hollywood Hospital do not have any obligation to upload discharge summaries to My Health Record. This has definitely made the very choppy transition just that little bit more stressful.

Overall I am so very thankful for the many wonderful professionals I met over the last two months.

Here are my questions:

- Have we got the Goals of Care process right, and how that is transferred into My Health Record?

- Why isn't there a focus on making sure there is consistency across public and private hospitals (remembering that we as consumers are constantly encouraged to use the private hospital system) about uploading documents to My Health Record? As I understand, our taxes pay heavily for both hospital systems and I feel they should surely be held to the same account.