It’s election time again! Honestly, we have not had a new Prime Minister for ages in Australia. We sadly can’t have Jacinda Ardern, but there it is.
Dr Benjamin Thomas (@andiyarus)  has been tweeting up a storm putting pressure on the powers-that-be and the powers-that-wannabe in advocating for #palliativecare patients in the upcoming election. He visited the @Palliverse to answer a few questions for us.

Palliverse – There’s been a big focus on health in the upcoming federal election. Tell us what prompted you to tweet about the needs of palliative care patients. 

Ben – I admit I find that health is always a focus in a federal campaign, if only because federal Labor considers it a strength or ‘core’ differentiator. As you mention, this time around there’s been a large focus – a whole week of the campaign the ALP has been talking about their cancer care package, with extra billing numbers for consults, more subsidised medical imaging, pathology, etc.
As I was watching this all unfold on both traditional and social media, I was wondering – where are we? Considering that there is excellent data now that palliative care improves quality of life, especially in advanced cancer patients, should we not deserve ‘a look in’, so to speak?
Additionally, in an aging population with more medical complexity, one would think that a focus of care that is symptom and Quality of Life driven should be a priority.

When this didn’t happen, I decided to reach out – both to the Labor and the LNP health shadow/ministers respectively, although Greg Hunt does not have a publicly available email and only a web form. I chose an issue to discuss that has been bubbling under the surface for me for a while; that of equity and access to medication particularly at the end of life.
Often, we as doctors prescribe without thought for cost, and as a community advanced trainee this has been brought to the fore for me as I travel around my area – always being mindful of prescribing not only within the PBS rules but also seeking to make things as accessible for patients as possible.
Naturally (albeit disappointingly) I haven’t heard back via email /other from either party, so I chose to publish the text of my email online as I feel the cost burden on patients and families isn’t widely considered in the community.

As an example, a patient for whom I was visiting for end of life care at home required an emergent visit due to terminal agitation. He was very agitated and distressed at home. We took some medication with us from our Palliative Care Unit – levomepromazine, injectable clonazepam, etc, as his wife was running out at home. At home he had a veritable pharmacy. He had boxes of (injectable) methadone, hydromorphone, haloperidol, midazolam, buscopan. For a refresh, buscopan has a streamlined item code for palliative care; you can call for a manual authority of methadone and hydromorphone and haloperidol (up to a month at a time). However, midazolam, one of the medications he really needed to support his care at home,  is NOT listed on the PBS at all so it’s expensive for patients to buy.

Palliverse – a small cost though, compared to the cost of him being transported to the Emergency Department and admitted to hospital!

This gentleman had had difficult-to-control symptoms with respect to pain and distress, so had been using both CSCI hydromorphone in escalating doses (different vial sizes) and adjuvant methadone; as well as ramping up doses of midazolam.
Each box of 10x ampoules of midazolam at his local pharmacy was costing around $35; and between his syringe driver and his additional use he was going through easily a box a day. Given he and his wife were retired pensioners, this was naturally quite difficult – I mentioned it to his wife and she acknowledged it had been a struggle. Their children had been pitching in a bit with money to help out, but they were all taking time off work as well and so it was not the easiest thing in the world.

Us bringing with us a few “spare ampoules” made a huge difference that afternoon, in more ways than one.

Palliverse – If more resources went into supporting people at home, how would this impact the health system?

Ben – I think that this is a difficult global judgment to make. There is a ‘financial benefit’ to the health system to providing end of life care at home, because hospital-based care is so expensive – bed days are more expensive in acute care than in subacute (palliative) care and much more expensive than care at home. Naturally, if the patient is at home, those figures disappear from the  hospital budget so the hospital systems (State) love that. The costs of course do not disappear; medication costs shift firmly onto the PBS, with either the patient paying the full price (if below the subsidy) or above the price and community-based services pick up as much as is practical of the care load. Patients and families have high out of pocket expenses.

If there were more resources available I suspect that there would be more of a shift towards people being able to manage at home for longer, which would decrease demand on the hospital system.

Caring for a family  member at home is of course a challenging (if rewarding) task, and more support to do this, especially with hands-on-the-ground support would help boost the confidence of people who are teetering on the edge of not quite managing. This lack of confidence I think does lead to patients who are not necessarily symptomatically complex not able to remain at home and having to come into hospital,  which can be devastating to someone towards the end of their life.

In my area, as in many others, we are spread quite thin, and even at the end of life in the community the limit stretches to about 2 hours in 24 being physically supported at home with some phone outreach around that. This can be difficult for many families to cope with: the time without someone around, the uncertainty. If there were funding and staff in place to provide more frequent nursing, allied health and medical care at home, I do wonder if remaining at home would become a more attractive option, for both families and patients. This would decrease the load on the acute system (ambulance, emergency departments, hospital) as well as the inpatient palliative care system. We could then increase access for patients who are more complex, whose needs can’t be met at home,  to access inpatient care.

Palliverse – What else would you like to see the Federal parties commit to, in order to improve palliative and end of life care in Australia?

Ben – The first thing would I suppose be the subject of my email – more fair access to end of life care (and by fair I mean, less cost shifted to patient or carer) at home for families. This could be via a specialised subsidy like a Centrelink Health Care Card for palliative care patients, or via direct funding to palliative care departments to supply medication to patients. I suspect the former is more ‘efficient’ than the latter, as not everyone needs specialist involvement and specialist departments do not exist everywhere.

Secondly, I would like to see a firm commitment to developing a broader level of community service – ensuring that the community availability of skilled allied health, patient care assistants, nursing and medical staff is deepened and extended to all patients.  I am very aware that my GP colleagues do the lions share of palliative care in the community; but for those that are complex and referred to a specialist service there needs to be more help accessible and available.

Thirdly, there was an interesting feasibility study published in the RACP’s Internal Medical Journal about an ‘extended care unit’ model, which I think deserves attention and more development… for the patients that don’t need the complex skillset of the inpatient PCU, don’t need the acute care of the hospital, aren’t able to go home, but prognostically it would not be fair to go through the aged care assessment process. Somewhere like a half-way house, where care can be provided, possibly as an expanded palliative medicine skillset – longitudinal sub-acute palliative care, in an inpatient-esque setting. I know the feasibility study showed a cost-benefit (which I’m sure makes administrators happy), the lack of stress associated with moving a relative to an aged care facility would surely make families and patients less concerned, and the availability of care and access would help promote dignity and comfort.

Thanks Ben! Please follow us on Twitter at @palliverse and Dr Ben at @andiyarus and support his efforts to get #palliativecare onto the Federal Election agenda in Australia. 

Sonia