RK, 97, lives in a nursing home. He has dementia which is progressing rapidly and he’s losing his swallow reflex. So he’s more likely to aspirate food and saliva – inhaling them into his windpipe, causing pneumonia. And this is what happened, leading to fever, one night in late May 2021.
 
His daughter was called and told an ambulance was taking him to hospital.
 
“We’ve signed off on an advance care plan. It says ‘not for hospital’ but for care in the nursing home,” she explained.
 
But the ambulance staff were adamant, this was a case where RK needed hospital.
 
The daughter followed the ambulance to the hospital. They went in separate entrances and she waited for half an hour before she saw him. By that time treatment had started.
 
“Dad spent five days in hospital and as he was about to be discharged a doctor in the geriatric team contacted me. ‘What are your thoughts about your father?’ she asked.
 
Both agreed an ‘end of life discussion’ was needed. The doctor suggested an ambulance care plan be completed. This would help ensure RK wasn’t sent to hospital but that treatment was started at the nursing home by the ambulance staff. This would still include antibiotics if indicated but also more effective medications to calm him. The plan would be emailed to the daughter to sign off.
 
Two more conversations followed with a more senior member of the geriatric team, who explained the ambulance care plan needed to be filled in by the geriatric team before the daughter could sign it.
 
When the daughter called at the ward to collect the plan it wasn’t there. Must be in the bag Dad took back to the nursing home, she thought. But it wasn’t there either.
 
Later, the daughter spoke with many staff members at the nursing home and still no ambulance care plan. But wasn’t this crucial?
 
The daughter then checked the authorised care plans page for NSW Ambulance 
 
“We are currently working with NSW Ministry of Health as we review the Ambulance authorised care program,” the website begins.
 
She rang a number on the site on June 11 and a representative of the ambulance service explained the mystery of the missing ambulance plan.

Yes, RK’s form was lodged on May 27 but it’s still waiting to be signed off. This is because of the system review and the delays mean it could take two weeks for you to receive, he said.
 
“But did you say your father is in a nursing home?” the helpful adviser asked.
 
“Yes,” she said.
 
“Well I can give you a copy but they don’t apply for aged care facilities.’
 
He explained further: “In a nursing home if the staff member making crucial care decisions late at night doesn’t feel competent to handle the situation, then for the legal protection of everyone – particularly the elderly patient – the ambulance is called and the person taken to hospital.”
 
Ah, so that explained the disconnects, the daughter thought.
 
But he said there was an important additional point to be made.
 
“The emphasis is changing, as a result of the system review. Ambulance care plans are being phased out and instead, all those involved in the process will refer to the advance care directive instead. That paperwork overrides the ambulance care plan because it’s more complete and it’s a document designed for all aspects of the care system to deal with, not just the ambulance team.”
 
NSW hospitals are working on implementing this right now. Soon, patients coming into hospital will be asked “Do you have an advance care plan?” much earlier in the admission process.
 
At this stage, many people will say they don’t have one. Community education will be needed.
 
However, RK already had one, signed off by his daughter. Even though not prepared when RK had competence, it would still be followed because you are the person responsible, explained the ambulance rep.
 
It says in the event of a heart attack he is not for resuscitation. Other ‘boxes’ ticked include no PEG feeding. But this plan wasn’t referred to by the nursing home.
 
Was this a glitch? Maybe it wasn’t.
 
Since both the aspiration and the pneumonia put RK at a high risk of dying, his daughter thought that was what was happening that night

Later, I asked one of the nurses in A&E, when he was being settled: ‘Do you think he’s ready to go’ And she said “No. People who’ve reached that stage generally aren’t as responsive as your Dad. He responded very quickly as soon we started treating him and he reacted to people around him.”

RK’s daughter said many people said to her:  ‘He should just be allowed to go’. She’d even thought it herself.
 
“But here’s the thing, when I look back on it, I don’t think he was ready to go. He wants life, even though it’s not on the terms other people might like. He sleeps a lot and gets aggressive. But there’s a different side to him too. He still enjoys his meals and he can sometimes have lucid conversations, even if they only last a moment. He sometimes doesn’t know people, but other times he enjoys visits from family.”
 
The night that the staff called the ambulance, RK had a fever. He had become hypoxic, so his brain was not receiving oxygen and he was very anxious.
 
“Dad seemed afraid of dying that night and I think everyone who dealt with him sensed it,” his daughter said.
 
Later, his daughter spoke with his GP who confirmed the nursing home staff wanted him to go to hospital because they thought this was safest.
 
“But for the future, we’ve implemented a ‘hospital at home’ program for your father.”
 
This means a team would come from the hospital to deliver the care he needed in his nursing home – although she pointed out, that outside business hours, especially late at night, events might play out similarly to before.
 
Dr Nirenjen St George became involved in RK’s care because he is his geriatric psychiatrist. With Dr David Kumagaya, he has co-founded Sydney Psychogeriatric Clinic, following a new model in psychiatric care for the elderly in the community.
 
He will add his voice to the palliative care planning for RK: “Because the mental state of a patient is a key factor that needs to be considered at the end of life.”
 
He explained that the public health system: “Is designed to ‘fail safe’.”
 
Unlike the arrangement when someone elderly lives in their own home, there are more people involved in the care plan, more people who need to be involved in the decision processes.

Here are some lessons from this experience.

• When RK’s hospital treatment started, family were not allowed to be present. This is usual practice and unlikely to change. It allows the experts to make decisions.

• RK’s daughter raised the subject of the advance care plan, but the first real discussion about this only happened after RK was stabilised. In the future, expect to be asked ‘Is there an advance care plan?’ This will happen earlier – and hospital staff will be more likely to lead the discussion.

• There are many people with NSW ambulance plans living in the community who think these are used in nursing homes. Clarification on this is needed.

• Changes currently in play caught hospital staff and nursing home staff off guard. They did not know the status of the ambulance plan has already changed. More awareness about this is needed – including among hospital and nursing homes staff.

• RK’s hospitalisation happened in late May, 2021, a time when advance care planning in NSW hospitals is actually in flux. While it is changing to put more emphasis on the ‘advance care directive’ we are not there yet.