Pharmacists are vital in giving the dying a more dignified death. This National Palliative Care Week, May 23–29, Australian Pharmacist outlines six projects that help pharmacists in this end-of-life role.
For many patients at the end stage of their lives, access to medicines that would ease pain or distress is far from guaranteed in a non-hospital setting.
In fact, research by KPMG has found that only 1 in 50 residents in a residential aged care facility (RACF) receives palliative care under the Aged Care Funding Instrument.1 It is their predicament, and that of Australians who die at home, that Helen Stone MPS hopes current initiatives highlight and eventually lead to a best practice model for palliative care.
‘One of the key aged care royal commission report recommendations is that people receiving end-of-life care have the right to fair, equitable and non-discriminatory access to palliative care,’ says Ms Stone, who is PSA’s State and Territory Manager for South Australia and the Northern Territory.
‘I can’t tell you how important it is for me to be able to run medicines past a pharmacist.’
‘But you can’t have good palliative care without access to information about medicine. While we have palliative care pharmacists in acute care settings such as hospitals, there is no funding for a palliative care pharmacist to be sent to your home, which is really what’s needed not just at end of life, but earlier when someone is first diagnosed with a life-limiting disease.
‘In the terminal phase, medicine needs might change quickly, which is where access to appropriate medicines is very time dependent, but also access to advice and education about those medicines.’
While accredited consultant pharmacists can see palliative care patients at home,2 with a GP referral, the rules around the provision of a Home Medicines Review (HMR) or in-pharmacy MedsChecks mean they may not be able to be repeated as often as needed for a palliative patient, Ms Stone says.
Simply put, the existing funding models for these, as well as Residential Medication Management Reviews (RMMRs), are not flexible enough to best assist terminally ill patients, she adds, with many aged care pharmacists undertaking palliative work that is not necessarily recognised.
‘While Australia does have community palliative care teams that provide nursing, they do not include pharmacists, and are not widespread, especially in regional and remote areas.’
Palliative care nurse and Palliative Care Australia’s National Clinical Advisor Kate Reed says that the pharmacist’s role in palliative care ‘is incredibly underrated by everyone, often by pharmacists themselves – they are an essential part of a multidisciplinary team’.
‘When I see my patients at Canberra Hospital, I currently advise them to go to one community pharmacist and get to know them. That pharmacist will then ring me if they have concerns about how people are coping, or about what kind of medications they need to be getting in so patients can get things fast,’ she says.
‘A pharmacist with an interest in palliative care has an understanding of how these medicines can reduce suffering and how we prescribe them for off-label [use] too. At the same time, I can’t tell you how important it is for me to be able to run medicines past a pharmacist.’
Ms Stone says: ‘What I would love to see is a community palliative care team that includes a pharmacist who is able to deliver palliative care in residential aged care facilities and in homes in every Primary Health Network.’
Community pharmacists who deal with palliative care issues in-store, she adds, also need to be kept informed by the GP, to be aware of the plan for symptom and pain management, to have the medicines needed on hand, and to be paid for their time.
‘In the end, I think we will need a combined federal and state government approach to ensure we have funding to provide services to the most vulnerable members of our community.’
Easing carer anxiety
Dr Amy Page FPS, an NHMRC Early Career Research Fellow at Monash University and Alfred Health, recalls the distressing experience she had when her grandmother needed end-of-life care. Dr Page’s mother and uncle were upset because her grandmother, who wished to die in her own bed, was experiencing increasingly severe pain.
Although they had the liquid morphine her GP had provided, the instructions stated only 1 or 2 mL every 4 hours.
They tried to contact the GP to ask if they could increase the dose, but he was not returning their calls, so they rang Dr Page for support. As a pharmacist, Dr Page was able to convince the GP’s receptionist to have the GP contact her.
‘So ridiculously, unnecessarily distressing!’ she recalls. The situation deteriorated with the GP, inexperienced in end-of-life care, who was uncomfortable about sanctioning a dose increase.
Dr Page’s grandmother was transferred to hospital specifically for pain relief. But by the time they arrived, the bed that was supposed to be available was not, and her grandmother ‘was left on a trolley until she could be assessed’, Dr Page recalls.
‘I was trying to coordinate her getting the medicines … and she ended up dying an hour or so after she got there – still without having anything for pain relief.
‘It was so, so, so distressing – and so much worse, just because of the medicine access problem.’
Improving access to core medicines
Aimed at developing a best practice model, PSA, in partnership with the Adelaide Primary Health Network, has spearheaded initiatives designed to identify the problems and potential solutions in end-of-life provision of medicines.
A significant project has been Palliative Care Access to Core Medicines (PCAM)6 in which Paul Tait MPS, Lead Pharmacist within the Southern Adelaide Palliative Service, and Ms Stone played a major role.
It aimed to improve access to five subcutaneous medicines from the Core Palliative Care Medicines List, through community pharmacies for people wishing to die at home, by raising awareness of communication between health professionals and anticipatory prescribing.
Mr Tait says the medicines on the Core Palliative Care Medicines List address six symptoms commonly seen during the terminal phase of life: pain, terminal restlessness, anxiety, nausea, dyspnoea and noisy breathing.7
However, while they are listed on the Australian Pharmaceutical Benefits Scheme (PBS), research shows8 that many of the 5,000 registered community pharmacies across Australia are unlikely to stock many of them because of poor turnover, inconsistent prescribing practices that send mixed messages about which medicines to carry, and a sudden deterioration in the patient’s condition that catches clinicians off guard.
Ms Stone says: ‘Having the medicines available is a real enabler to controlling the symptoms of most people at the end of life.’
The development of a statewide Core Palliative Care Medicines for Queensland Community Patients list has also been key in an initiative funded by Queensland Health as part of its COVID-19 preparedness, with PSA supporting the initiative and raising pharmacists’ awareness of this new resource.
The palliPHARM project9 aims to establish processes that ensure residents of RACFs and community-based palliative patients have timely access to palliative care medicines, says Megan Tremlett MPS, a Queensland-based senior consulting team pharmacist at PSA.
Pharmacists can obtain a factsheet10 on the medicines and are being encouraged to sign a letter of intent to indicate their willingness to stock them. More than 190 community pharmacies across Queensland have signed to date, says Mrs Tremlett.
Using QFinder 2.0711 and PHN channels, palliPHARM is also assisting the Queensland public, GPs and other health professionals to locate community pharmacies likely to stock these medicines.
‘RACFs are being encouraged to take part by establishing palliative care imprest systems comprising medicines from the list, tailored to the prescribing preferences of visiting general practitioners and nurse practitioners,’ Mrs Tremlett says.
FIGURE 1 – Example core medicines list
Dyspnoea and noisy breathing
Reference: NSW Health, QLD Health, SA Health3–5
For some community pharmacists who are stepping in to fill a needs gap, confidence around palliative care can be an issue.
Accredited training activities, including interactive workshops and live webinars, to build a better-skilled community pharmacist (and GP) palliative care network, are a crucial part of the palliPHARM initiative, Mrs Tremlett says.
‘Most people who go into aged care should be supported by health professionals with palliative care training.’
Helen Stone MPS
‘Evidence-based resources and tools related to anticipating and managing end-of-life symptoms, such as the Therapeutic Guidelines: Palliative Care, the palliMEDS app and the caring@home program12 are also being promoted,’ she says.
Accredited pharmacist Laura Dean MPS coordinates an online postgraduate unit in palliative care offered by the Faculty of Pharmacy and Pharmaceutical Sciences at Monash University.
It focuses on the therapeutics of managing pain and other symptoms in patients with palliative care needs. Confidence is built over the 12-week semester using several strategies – for example, examining case studies in discussion forums which are moderated by experienced palliative care pharmacists.
The palliative care unit is an elective subject in both the Graduate Certificate in Pharmacy Practice and the Master of Clinical Pharmacy courses offered by the university, or can be completed alone.
‘Feedback from students,’ says Ms Dean, ‘shows increased assurance in practical medicines management around palliative and end-of-life care, and in the terminal phase.’
Ms Stone adds: ‘As a community, we are uncomfortable talking about death, but we need to give pharmacists access to the tools they need to increase confidence.’
Additionally, on the education front, PSA has secured funding through the NSW Health Clinical Excellence Commission for a PSA Essential CPE on Palliative Care,7 as well as free Palliative Care Medicine Management masterclasses funded by the South Australian Department of Health and Wellbeing.13
In three key regions of the South Eastern NSW Primary Health Network – Goulburn, Illawarra and Shoalhaven – PSA is also supporting community pharmacists with delivery of a palliative care training course, through a project supported by funding from the South Eastern NSW Primary Health Network (COORDINARE).14 The project is called ‘Building capacity in the community pharmacy setting to improve access to appropriate end of life medicines for residents of SE NSW’.
The four-module training course, which focuses on the Core Palliative Care Medicines List,15 the Last Days of Life Toolkit,16 NSW Ambulance Authorised Care Plans17 and the caring@home program,12 aims to improve their knowledge, skills and capacity as part of a multidisciplinary palliative care team.
‘We would like to see pharmacists brought into the palliative care conversation earlier to enhance support for patients, their carers and the multidisciplinary team,’ Mrs Tremlett says.
The training course is accredited by PSA for inclusion in pharmacists’ Continuing Professional Development plans.
BOX 1 – Language matters
Frameworks for use in RACFs
Although most RACF clients are approaching the end of their life, only 4% of allied health professionals working in aged care hold specialised qualifications in palliative care, according to Palliative Care Australia.
PSA project consultant Julian Soriano MPS, a board-certified geriatric pharmacist, is currently writing a framework for the role of palliative care pharmacists in RACFs as part of PSA and the SA Department for Health and Wellbeing 2020 Palliative Care Pharmacists in Aged Care Project.18
Mr Soriano says the framework focuses on how not only specialist palliative care pharmacists, but aged care and community pharmacists, can support patients at end of life, as the amount of specialised palliative pharmacists is low, especially in regional and rural areas.
‘The goal is to describe how pharmacists can help give patients choice and control over how they die, as well as establish a network and communication pathway between specialist palliative care pharmacists, aged care pharmacists, community pharmacists and GPs,’ he says.
‘This includes looking at case conferencing, working with a medication advisory committee to monitor and review medicines, and how to communicate with other health professionals involved in end-of-life care.’
Ms Stone says that while SA Health is the biggest provider of aged care beds in regional South Australia, most of those facilities don’t have a pharmacist working within the facility.
PSA also has a project embedding pharmacists in regional aged care facilities, funded by the Country SA Primary Health Network.
‘We are also making sure those pharmacists are really aware of the needs of palliative care patients. Most people who go into aged care should be supported by health professionals with palliative care training. Often, it’s just little things, like changing a dosage form, that make a big difference.’
FIGURE 2 – Six palliative care projects for pharmacists
Embedding pharmacists in the end-of-life team
Ms Stone hopes to soon be able to embark on a research trip that will allow her to further articulate a framework for the role of the palliative care pharmacist in aged care, as well as the community, having been awarded a 2020 Churchill Fellowship. With it she will look at palliative care pharmacist programs in Canada, Scotland, Wales and New Zealand.
In a recent editorial in the Medical Journal of Australia,19 Professor Justin Beilby, a general practitioner and Strategic Advisor for the Global Centre for Modern Ageing and Deputy Vice-Chancellor Research at Torrens University Australia, said that as the number of frail, older Australians increase, so will the opportunity for employing pharmacists in primary care teams.
‘Their skills in post-hospital review, difficult medication regimens and their effect on disease states, quality use of medicine audits, face-to-face medication reviews, and independent prescribing complement those of the primary care team,’ he wrote. ‘The benefits for the pharmacist are also clear: increased professional autonomy, meaningful engagement in a healthcare team, and personal interactions with patients in an environment less constrained than the pharmacy.’
Terminal phase medicines misadventure in an RACF
In the fortnight leading to her father’s death in an RACF, Monash University’s Dr Amy Page was horrified to learn he was sent to an Emergency Department for acute pulmonary oedema, despite a documented ‘Do Not Transfer’ order.
And when he suffered a similar episode several days before his death, her father was still charted for PRN benzodiazepine and PRN antipsychotic as well as PRN morphine.
Agitated and unable to communicate following an acquired brain injury from a myocardial infarct, a nurse sequentially administered – over a 1-hour period – the antipsychotic, then the benzodiazepine, and only when both had failed did she finally administer the morphine. There had been no consultation with his GP.
When the GP was informed of the nurse’s actions by his daughter – who happened to be dining out with Dr Page that night – the GP drove to the RACF.
Dr Page recalls: ‘He told the nurse that if she wasn’t going to use [the antipsychotic and benzodiazepine] appropriately, then she wasn’t going to be able to administer them to him again and crossed them off the chart. He explained to the nurse that it was important to understand and acknowledge that just because Dad couldn’t communicate didn’t mean that agitation equals psychosis and that the agitation equals a physical problem. The GP wasn’t going to risk Dad having to go through that again.
‘I was so grateful to him,’ she remembers, ‘for being caring and proactive, but I was sad that it only happened because I knew them [the GP and his daughter].’
- Palliative Care Australia. KPMG Palliative care economic report. 2020. At: https://palliativecare.org.au/kpmg-palliativecare-economic-report
- Pharmaceutical Society of Australia. Guidelines for pharmacists providing Home Medicines Review (HMR) services. At: www.https://bit.ly/3sYSkQh
- NSW Government. Health. Factsheet. Core palliative care medicines list for NSW community pharmacy. At: www.health.nsw.gov.au/palliativecare/Factsheets/core-medicines-list.pdf
- Queensland Health. palliPHARM. Core palliative care medicines list for Queensland community patients. At: https://bit.ly/32cWV6j
- SA Health. Prescribing guidelines for the pharmacological management of symptoms for adults in the last days of life. At: https://bit.ly/3g8UqtT
- phn Adelaide. Palliative Care Access to Medicines Project. At: www.adelaidephn.com.au/assets/PCAM_Project_-_RFP_Guidelines-FINAL.pdf
- Pharmaceutical Society of Australia. Palliative Care Essential CPE. 2019. At: https://my.psa.org.au/s/article/Palliative-Care-Essential-CPE
- Tait P, Morris B, To T. Core palliative medicines. Aust Fam Physician 2014;43(1):29–32.
- Pharmaceutical Society of Australia. palliPHARM. 2021.
- Queensland Government. palliPHARM Factsheet. At: https://bit.ly/3aEEv2P
- Queensland directory of health and community services.
- Caring@home. At: www.caringathomeproject.com.au/tabid/4877/Default.aspx
- SA Palliative Care. Palliative care. www.psa.org.au/sa_palliativecare/
- Coordinare. Funding to support palliative and end of life care. 2020. At: https://bit.ly/3xld2gl
- NSW Government. Health. Core palliative care medicines list for NSW community pharmacy fact sheet. 2019. At: www.health.nsw.gov.au/palliativecare/Pages/core-medicines-list.aspx
- NSW Government. Clinical Excellence Commission. Last days of life. 2017. At: www.cec.health.nsw.gov.au/keep-patients-safe/end-of-life-care/last-days-of-life
- NSW Ambulance. Authorised care plans. 2020. At: www.ambulance.nsw.gov.au/our-services/authorised-care-plans
- Government of South Australia. Palliative care 2020 grants program. 2020. At: https://bit.ly/3azyjcs
- Beilby J. The general practitioner and the pharmacist: a policy enigma? Med J Aust 2021. Epub 2021 Mar 15.