Hospital Advocacy - October Newsletter
Grandma was in hospital for the 20 hours before she died and was unfortunately in a lot of pain. The condition that took her life caused excruciating pain and over our time in hospital, she required significant levels of pain relief in an attempt to make her more comfortable. Whilst the staff tried their best, it was an ongoing battle throughout our time there.
Having been in aged care for 15 years now and spending time in acute care settings with clients and my own family, I know the gentle balance required to agitate towards a positive outcome. Polite and persistent advocacy is key.
And whilst I know we didn’t get it perfect with Grandma, I wanted to share some tips/tricks I’ve learnt across the years about how to advocate for your loved ones. Because having been on both sides of the advocacy fence, I know which ones are more productive.
For this reason, the theme I’ve chosen for October is
‘Hospital Advocacy’.
I want to preface this whole topic by acknowledging the stress and strain our health professionals are under. We have long existing issues for hospital staff with burnout, staff shortages, high workloads and are now looking towards a projected short-fall of 70,000 nurses by 2035. I am a big believer that the doctors, nurses and allied health staff are all doing their best in a very complex and overrun system. Everything I say in this newsletter is with acknowledgement of that macro-level issue. However, due to this stretch on staff, sometimes patients can be overlooked and there are few things worse than seeing your loved one in agonising pain and feeling like it’s not being resolved.
Whilst in this newsletter I’m referring to ‘hospital advocacy’, please note that these principles apply regardless of the care setting. Whether your loved one is in residential care, hospital, hospice or receiving home care services, sometimes advocacy is required to get improved outcomes for your loved one.
WHAT NOT TO DO
I want to acknowledge that seeing a loved one in pain or not cared for in a way they see fit can be incredibly distressing. I have worked with families as both the care provider and the advocate, so I feel I can empathise with all perspectives of the advocacy juggle.
Firstly, please don’t yell.
I would like to think in 2026 this would be considered common sense, but yelling, swearing, shouting or waving down staff in corridors should be saved for emergencies only. Unless there is an immediate risk to your loved ones life, please speak calmly and respectfully to the staff - they are doing their best.
Secondly, try to avoid being Dr Google.
I get how tempting it is to search every symptom or message a family friend that is a nurse or doctor for a second opinion and I’m not saying you can’t do that. I do however feel there is a delicate way to discuss your own findings with health professionals that isn’t ‘well Google said you should’ve given him morphine when we first arrived!’. Google, ChatGPT or even your family friend won’t have every piece of information that your health care team do. There is so much more than just blood results, pain levels or patient presentation. Doctors are usually assessing all these things combined. There is a reason emergency physicians train for 5 years and then another 5 to specialise - health is incredibly nuanced.
Thirdly, don’t try to gang up on your care team.
You may feel supported having someone with you when you discuss concerns with the nurse or doctor and that’s okay. However, bringing a team of 5 people to interrogate your dear nurse who is only following the doctors orders is nothing short of intimidation and bullying. Again, be respectful and consider the other persons perspective too.
Now I know we have an incredibly special, respectful Navigate community so I have no doubt you’re reading all of that thinking, well of course! But I don’t think it hurts to spell it out.
SO, HOW DO WE ADVOCATE?
The four words I come back to are polite, respectful, persistent and curious.
But before we break these down, it’s important we understand why family advocacy can be so important. Family participation in clinical advocacy has been studied in relation to bedside handovers, medication administration, ward rounds, pressure injury prevention and recognition of clinical deterioration. A 2021 study acknowledges that family member engagement is especially valued by health care professionals when they are caring for vulnerable, elderly, critically ill or cognitively or hearing impaired patients.
This is all to say, you know your loved one best. They might say their pain is a 8/10, which you know is actually a 12/10. The doctor might ask how they are and they’ll say ‘not too bad’ at which point you can jump in and explain the 13 different symptoms they’ve been experiencing that morning.
POLITE
This is a basic one, but use your manners, keep interactions kind and give staff the benefit of the doubt where possible. It’s important to keep in mind how overrun staff might be, whilst also expressing your loved ones needs. Whilst ‘the squeaky wheel’ might be attended to first, I find you’re going to have far more compassionate, understanding care if you approach staff with a level of empathy and understanding. Health care professionals will always try their best to help their patients, however I feel it’s only human nature that they’re more likely to go above and beyond if they feel safe, respected and valued too.
RESPECTFUL
This might sound similar to polite, but I think it has more to do with respecting the persons role in your loved ones care. Understand that the nurse is simply following the doctors orders, they can’t run and grab more pain relief that isn’t written up. When the specialist explains why they’re only giving a certain dose of something, listen to their explanation and then ask questions.
If you genuinely feel they aren’t understanding the problem or providing a reasonable solution, then escalate the issue.
PERSISTENT
Just because we’re being polite and respectful, doesn’t mean we have to sit back and wait to be asked what we need. If you feel your loved one has a need that isn’t being seen to, gently bring it up every time a nurse/doctor/specialist comes into the room. This might look like:
I’m not sure if it’s been handed over to you, but Mum is in quite a lot of pain right now. The nurse mentioned it would be escalated, I’m just wondering if you had any update of where that’s up to?
OR
While you’re here doing Dad’s obs, I’m wondering if you could please check his cannula? He said it’s causing him some discomfort.
OR
I appreciate this might not be your domain, but a few hours ago the doctor administered some new pain relief however it doesn’t seem to be helping. Could you please escalate this for us as Grandpa is reporting 9/10 pain?
You are well within your right to seek out medical staff if they’re not regularly visiting your room/bed. Again, we want to do this in a respectful manner - not interrupting them (unless an emergency) and politely asking them to follow-up previous requests/concerns/results.
CURIOUS
I’m a big advocate for asking as many questions as you need. The doctors and specialists are there to help you and I find it helpful to understand all my options so that I can best advocate for my loved one. Some regular questions I use are:
‘If we didn’t do anything, what would the potential outcome be?’
Especially in aged care, I think it’s helpful to question if the treatment is necessary or beneficial to the individual.
‘Are you able to provide a rough timeline until X happens?’
This could be in relation to a new medication starting, their situation deteriorating, you see the next doctor etc. Having a rough timeline can greatly help inform decisions.
‘Are there any other treatment pathways?’
This is again making sure you have all options and information available to make a decision. Health care professionals will usually provide you with options to start with, but it can be helpful to ensure you’ve covered all bases.
‘How much time do we have to make a decision?’
In time sensitive scenarios, it can be helpful to understand the urgency. Sometimes it can feel like you need to decide immediately, but when you ask they’ll say you have hours to decide.
‘What would you recommend if you were in our situation?’
Doctors don’t tend to give their personal opinion, but they will usually draw on previous clinical experience to recommend a treatment option. This might not necessarily be best for your loved one with your knowledge of their situation, but it helps give you a professional opinion.
AND WHAT IF THAT DOESN’T WORK?
If you feel like you’ve tried all avenues and you’re still not getting anywhere, there are systems built into every hospital, aged care home, hospice, care setting that will tell you who to escalate complaints to.
Hospitals will have signs on the wall advising how to escalate complaints. Within the Central Adelaide Local Health Network, you can contact 1800 111 333 which escalates to a Medical Emergency Response.
If you’re within a residential care setting, the Aged Care Quality and Safety Commission can be contacted on 1800 951 822.
However, please ensure you have raised concerns and complaints at site level before contacting these complaints lines. As a general guide, initially ask your nurse/carer. Then request to escalate to a doctor. If that’s still not working, you can ask for senior doctor/specialist. If you express to each of these individuals that you’re concerned for your loved one and feel they’re not addressing their needs, then the complaints line are a safety net.
In my experience, most concerns can be managed by staff at the site level. However, it’s helpful to have external measures available if needed.
In other exciting news, I am officially transitioning back from maternity leave!
At this stage I am predominantly taking on aged care planning clients (home care services, seeking aged care assessments, finding home care providers etc), but will be back to placement clients in the new year too.
It’s so lovely to be back client facing and as much as I know I’ll miss this baby bubble we’ve been living in, I’m excited to be back in work mode too :)
As always, please feel free to pass this newsletter on to friends or family. If they want to subscribe, they can do so via my website. If you have any questions about the info above, please reply to this email. I’d be happy to discuss!
You can listen to previous episodes of ‘The Truth About Ageing’ in your favourite podcast app (Apple Podcasts, Spotify) or you can stream it at
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Thank you again for being part of the Navigate gang.
Big love,
Kate.
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