Two Canberra pharmacies got together to make life easier for palliative care patients and their carers… and it’s been an emotional journey
Samantha Kourtis, managing partner of the Charnwood Capital Chemist, and Elise Apolloni and Honor Penprase, owners of the Wanniassa Capital Chemist, were seeing patients in desperate need of help.
“We know the nature of palliative care is that it’s not stable – it can change any time,” Ms Kourtis told the AJP.
“As owners of pharmacies that work in the after-hours period in the ACT, we would often see patients who were under palliative care in crisis. When things change, they need timely access to the best medication to be pain-free and comfortable.
“But we were finding that families were ringing around pharmacies – saying, ‘Do you have this medicine?’ and driving from one side of Canberra to the other to get it.
“And when you’re caring for someone who’s dying, you should be spending time with them, not trying to track down medication.”
Both the pharmacies – Charnwood in Canberra’s north, Wanniassa in its south – were also being contacted by prescribers seeking pharmacies which stocked certain medicines, some of which were unfamiliar and rarely prescribed, and/or only available on private script.
These included molecules like Cyclizine lactate; Glycopyrrolate; Fentanyl – specifically Fentora ODT; and Clonazepam drops.
“Over the years, we’d said we’d put some of these medicines on our shelves, but they would just go out of date,” Ms Kourtis said.
“We had prescribers in crisis, families in crisis, and this vulnerable patient group not having access to medicines.”
So the pharmacists decided to do something about it.
A new approach
The ACT’s Primary Health Network opened up grants for after-hours health service innovation, with a particular interest in the palliative care area.
“Elise and I said, ‘You ripper, let’s go for it’,” said Ms Kourtis.
“Overall our aim for the grant was to provide timely access to medicines for patients residing in Canberra with a life-limiting illness, particularly in the after-hours period.
“The first step was a palliative care medicines list. We promised ACT Palliative Care that both pharmacies would stock this imprest of essential medicines, and that they could be accessed at any time the pharmacies were open, if the patient’s regular pharmacy didn’t have it.”
The list took a great deal of collaboration to prepare, Ms Kourtis said, and involved developing a new perspective.
“We discovered we were guilty of being ignorant,” she said. “When we thought ‘life-limiting illness’ we automatically thought ‘cancer’. And so we were being really narrow-minded about that, and missing out on helping people with different disease states: end-stage heart failure, multiple sclerosis, COPD. And the medicines we needed to access were quite different.
“We had several meetings with ACT Palliative Care in public hospitals and also at [Canberra’s hospice] Clare Holland House, and spoke not only with prescribers, but also their absolutely brilliant community nursing team, and found out what they needed.”
The end result was a list which contained six or seven “core” molecules which would be likely appropriate in any jurisdiction – 17 molecules all up, and 27 individual items, based on the preferences and unique needs of the Canberra prescribing community.
Ms Kourtis said it would be difficult to draw up a definitive list for all areas due to these needs, and that pharmacists interested in moving into this space should talk to their local prescribers to find out what they would like to see stocked.
This list gave prescribers the knowledge that there were two pharmacies open late at night, seven days a week, one in the ACT’s north and one in its south, which would be guaranteed to have the medicines in sufficient quantities for the whole Canberra region.
None of this stock has gone out of date since, Ms Kourtis said.
“We made it very clear that this service was not to replace the patient’s regular pharmacy – that’s really important, as they have those relationships with the patient. The intention is to avoid crisis and ensure timely access, especially in the after-hours period.”
The second stage of the program was organising an after-hours delivery program for patients with life-limiting illnesses residing in Canberra.
“We found this part incredibly personally and professionally satisfying,” Ms Kourtis said. “If you’re at home caring for a loved one who’s dying, it’s such a gift to be able to say, ‘You don’t need to drive all the way across Canberra to get this medicine, you stay home with your loved one’.
“This was 90% used at the very end of life. A lot of the time we would provide a delivery and the patient would pass away within hours.
“If you think about the time we gave that family, it’s incredible.”
The service was a subsidised delivery service to any patient identified as having a life-limiting illness, and only available in the after-hours time frame as defined by the Primary Health Network: before 8am or after 6pm, after midday on Saturdays and all day Sundays and public holidays.
No matter where in Canberra patients lived, the service cost no more than $6.30 and the cost of the medicine.
Deliveries were made to residential aged care, Clare Holland House or private residences as needed.
“This really meets the needs of patients who wanted to die at home with their loved ones, and not making the loved ones drive around to get medicines,” Ms Kourtis said.
“There’s also a lot of extra counselling with deliveries – it’s not just dispensing. For example, there’s been counselling on delivery of oral hydromorphone. If they don’t understand why something has been prescribed, you can talk with them about it.”
The pharmacists worked hard to ensure that prescribers in the ACT were aware of the service, and offered it to all eligible patients without the need to sign up to a register or fill out paperwork. Ninety per cent of uptake was through ACT Palliative Care.
The pharmacists set up Standard Operating Procedures and templates for users of the system to facilitate their calling the pharmacies to arrange a delivery, and finalise payment.
As well as the services the pharmacies created following the grant funding, an existing compassionate care program for local patients was already in place.
The new project dovetailed well with this existing policy, Ms Kourtis said.
“We already work within our local communities to identify patients with a life-limiting illness and personally assist them with access to programs, subsidised DAAs, deliveries any time – not just after hours – and we offer assistance with the affordability of their medicines as well.
“For example I had the spouse of a regular customer, who’s been coming here 30 years, come in with a private prescription for an off-label chemo drug.
“She told me, ‘Our oncologist told us to go to a discount pharmacy and get a price on this medicine, but my husband insisted that I come and ask you first’. They’d been coming here 30 years, we’d seen their children come through and grow into adults, and now this man was diagnosed with a Stage Three cancer and his oncologist was telling him to go to a discount pharmacy!
“The wholesale cost of this medicine was $5,500. I said, ‘I will charge you not one cent more than my wholesale price, and I’ll contact the supplier and see what we can do about a compassionate care program, and contact local cancer support agencies and see what we can do for funding’.
“She still went to the discount pharmacy and they quoted her $200 more than we did. We provided her private script and all was good.
“But at a time like this when everything is so challenging and people’s needs are complex, we’re looking at after-effects of treatments and all the polypharmacy that comes with it, people’s relationship with their local community pharmacy is so important.”
The pharmacies also ensure all their staff were trained in having difficult conversations, being compassionate and providing professional care with empathy.
This meant expanding their knowledge about what empathy truly is, Ms Kourtis said.
She was invited to undertake a Program of Experience in the Palliative Approach (PEPA) placement which allows health professionals working in the palliative care space to “essentially do work experience” for three eight-hour days.
This placement with palliative care workers opened her eyes to misconceptions health professionals may carry about showing empathy, she told the AJP.
“When I did this at uni, I would sit down and say, ‘This must be really difficult for you,’ thinking that this was being empathetic,” Ms Kourtis said.
“And it’s not.
“Spending time with the pastoral care worker at Clare Holland taught me that the best thing to do is just be with that person and let them experience whatever it is they’re experiencing, and be grateful that they’re sharing it with you.
“I learned that there’s no right and wrong, and I don’t have to understand – and never will – how this patient feels, but I can give them the space to be exactly what they’re being in that moment.
“I’m an emotional person, and I feel very emotionally connected to those patients, and I learned that it’s okay to cry when they die.”
The program has secured another 12 months’ worth of funding, and Ms Kourtis said that prescribers have been “delighted” with the outcomes. The pharmacies now have a “solid ongoing relationship” with ACT Palliative Care as well.
But it’s the difference to patients which really matter to the pharmacists, Ms Kourtis said.
“There has not been one patient where we haven’t made a difference.
“And I think for both our pharmacies, it’s an honour and a privilege to be able to provide care at this stage of life.”