Peter Jenkin (pictured above), who works for the SA-Based Not For Profit Resthaven, has told the Commission that providers are missing out on funding that could be directed towards providing palliative care services because the process of making a claim for a dying resident is too onerous.
Mr Jenkin made the statement as part of an 80-minute panel with Nikki Johnston OAM (pictured below), who works at the Calvary Public Hospital Bruce’s Clare Holland House, an inpatient palliative care unit run by the Little Company of Mary Healthcare and funded by the ACT Government that provides services to 29 aged care facilities, on how to deliver specialist palliative care services into residential care and upskill staff.
Mr Jenkin – who has been in his role since 2013 and was also the project manager and clinical consultant for the Palliative Approach (PA) to Care Toolkit for residential aged care – said a snapshot he did of their 1,200 residents before the Royal Commission showed just one had an ACFI claim for palliative care.
“I imagine we’re no different than other organisations that – we will chase that, if we can, because it’s dollars,” he told Counsel Assisting Brooke Hutchins.
“Sometimes it is because you don’t need to, because the person is – I hear the term “maxed out”. They’ve already reached the highest capacity, but it’s just so restrictive. It ultimately is only there in terms of the definition of it for when someone is about to take their last breath, is actively dying, and the amount of work often to put in another claim for that is onerous, and you could be spending that time with the nurse, actually providing the care in the first place.”
Noting he is still the only palliative care nurse practitioner employed by an aged care provider in Australia, Mr Jenkin says this funding is further restricted by the lack of items able to be claimed under the Medical Benefits Schedule (MBS) for residents requiring palliative care.
“Barely 10 per cent of my income – of my salary is – comes from Medicare at the moment for that reason,” he added.
The nurse practitioner said while the MBS is being reviewed with a focus on providing better care to older people, more needs to be done including adding item numbers for case conferencing for advance care planning.
Until then, Mr Jenkin says the Resthaven model wouldn’t be able to be rolled out nationally – but added that ‘care is care’ and providers should not rely on outreach or-in-reach services to provide palliative care they should be doing themselves.
“I think it’s difficult if you are the only registered nurse on a shift to be able to manage everything when you have a number of people who have complex needs, not just in palliative care as well,” he qualified. “But, clearly, there are some organisations, as the Commission’s already shown, that are not meeting those standards absolutely.”
Mr Jenkin pointed out that of the 400-plus Resthaven residents who die each year, he sees less than 50%.
“Really, the majority of care should be able to be provided by the registered nurse, the carers, the GP, the lifestyle staff and everyone else,” he said.
He referred to the toolkit he developed with Dr Deborah Parker (from the Australian College of Nursing who gave evidence at the first Adelaide hearings) which every facility in Australia has and includes guidance on advance care planning, a tool to detect when a resident’s condition starts to deteriorate and an end-of-life pathway which provides a ‘road map’ for later care.
“At 10 o’clock on a Saturday night when suddenly someone has deteriorated and maybe they’re dying now, when we ring the family up, the last thing we should be saying is should we be sending Mum to hospital and putting it onto the family or the decision-maker,” he stated. “We should be saying to them, look, do you remember when we had that conversation, however long ago it was, hopefully some months, these are the things we talked about that we could put in place. You know, they’re no longer able to swallow medicines any more, you know, we’ve got the medicines here, this is what we can do, and that stops people ending up in an emergency department in the middle of the night. It’s a systematic process.”
The nurse practitioner also supported the Commission’s idea for a requirement for providers to assist residents with putting an advance care directive in place if they want one.
“I think care needs to be that it’s not just a tick box of a standard to say yes, we gave them the brochure and we said there was someone they could talk to if they wanted to. If that’s all that happens, then it’s not worth even pursuing,” he said. “In our organisation on admission we visit the person’s directive with them. At the six-monthly care evaluations, we come back and – it used to just be when I started, you know, is there one or not, and it was a tick. These days we are getting – we’re having a conversation about, ‘So is it still relevant, I see you’ve got one, what’s changed in the last six months in terms of your health. Is this still relevant, do you think it’s important that you need some help to change it or not’? That is still something – it’s a process. It’s not just an outcome of a form.”
The idea of advance care planning – and ensuring residents receive quality care at the end of life – was clearly on Commissioner Lynelle Briggs’ mind, perhaps spurred by Ms Davis’ earlier evidence.
“It’s something that has been bugging me throughout this Royal Commission,” she remarked. “We’ve heard many occasions when people who are in serious pain from serious things happening to them, and the health professionals do not provide pain relief. What’s going on? I would have thought this is core business, particularly for a hospital.”
Ms Johnston – who is also the Clinical Leader of a research team involved in training specialist palliative care in aged care facilities in Canberra called the Palliative Care Needs Rounds and was recognised for her contribution to nursing in this year’s Australia Days honours – attributed this to an “opioid phobia” among GPs.
“If we rang the afterhours general practitioners – they are reluctant to prescribe opioids for people 10 that aren’t their patients. I see this a lot,” she said. “Also having – not having stock of those medicines in residential aged-care – so in Canberra, there’s only allowed stock of five ampules of morphine for the whole facility, and that’s it. And that’s legislation which we need to change.”
Mr Jenkin also pointed to the letters sent by the Federal Government’s Chief Medical Officer to GPs who were high prescribers of opioids warning them against over-prescribing.
“I’m aware of a few GPs that it scared, and I have anecdotal evidence from nurses in our facilities, where GPs were coming through and ceasing opioid patches for long-term chronic pain and other opioid drugs for other reasons,” he related. “I also work with some GPs, though, who got those letters and were quite happy to say ‘I’m doing this, because I care, and these people need good symptom management’. So, there’s – there is a bit of that regulatory stuff as well. There’s another issue around cognitive impairment, people with dementia and other illnesses where they don’t have the capacity to understand or communicate. Sadly, there are still people out there who think that they don’t feel pain the same, which is just plainly ridiculous, and there’s no evidence to suggest that it all. It’s more difficult, to assess their pain, but there are so many tools out there to help, even at the carer level, to be able to do that. So there really is no excuse.”
Case closed.
