How pharmacists can support patients in the end-of-life period.
The important role that pharmacists play in the entire journey of palliative care is not fully recognised even in international studies.
Yet pharmacists in hospital, community pharmacy or aged-care settings all have stories about a lasting impact they have had on patients, carers and their families.
‘We play a fundamental role from the time of diagnosis right through to bereavement,’ says Paul Tait MPS, a South Australian researcher and pharmacist in a specialist palliative care service.
‘Yet when I conducted a literature review over a year ago (into the community pharmacist’s role with people with palliative care needs), I could only find research on specific aspects of care, not the whole journey.’
Mr Tait has now completed a survey on the role of pharmacists throughout the spectrum via a federally funded End of Life Directions for Aged Care (ELDAC) project. The results were published last month in the international journal, Healthcare.1
‘When you have an older person who is on a number of medicines, there’s always the risk of misadventure,’ he says.
‘Throw in a palliative care illness on top of age and polypharmacy, and you introduce a whole new set of risks. Having pharmacists along that journey can help with foreseeing some of the issues that might cause problems.’
In the hospital
Pharmacist Penny Tuffin FPS has worked in palliative care for 30 years. She divides her time between Royal Perth Hospital, Fiona Stanley Hospital and Bethesda Hospital in Perth and has her own clinic.
‘It can be challenging,’ she says of the work. ‘Communication is the most important skill to have in palliative care.’
Ms Tuffin says often families will blame the medicine for the deterioration of their loved one’s health in the last days of life.
‘People are particularly worried about opioids causing drowsiness and speeding up the dying process, whereas good pain relief may extend a person’s life.’
Ms Tuffin says it’s inappropriate to blandly state that it’s not the medicine, as, of course, medicines may be contributing to drowsiness.
‘You need to have a conversation with the family, and this will take time and may need to happen over a couple of meetings. It is important to understand how they see things changing for the person and what they understand, before you can offer information and choices about medications.’
Ms Tuffin finds the time of discharge the most challenging for caregivers. This is where the pharmacist can play a critical role.
‘People feel overwhelmed by the medicine regimen, as there may have been many changes during hospital admission,’ she says. ‘It’s important to explain the medicine regimen and provide a written medication list and extra information for a backup record of their medicine schedule. Dose administration aids may also be helpful for some people.’
Involving the carer – who could be a family member, neighbour or spouse – is vital. ‘Make the medicine plan simple and explain it clearly,’ she says. ‘It has been repeatedly demonstrated that one of the most stressful issues when caring for a person with palliative care needs is managing medications,’ she says.
Hospital pharmacists also provide a nexus among a host of healthcare professionals. Ms Tuffin recently cared for a woman who had 10 different doctors prescribing medicines which had been dispensed at four different pharmacies.
‘It was important to ensure that all her prescribers were aware of the other medicines prescribed for her, and I contacted several of the prescribers to rationalise the medications – especially duplicate analgesia.’
Mostly, Ms Tuffin works closely with an interdisciplinary team to plan care in hospital and for discharge. ‘All medication changes are discussed as a team, with pharmacist knowledge on pharmacology, pharmacokinetics, interactions, availability and cost important for these decisions.
‘I work towards having a pre-emptive medication regimen that will facilitate the person being comfortable in their place of choice and being able to stay there until they die.’
Other factors that affect this are organ function, other medicines being taken by the patient, the ability to swallow, and the ability to manage the regimen at home, or – if carers or a residential aged care facility are involved – whether they are able to administer and monitor the medications.
In the community
With more than 5,000 community pharmacies across the country, many Australians have close contact with a pharmacist, but many pharmacists are unaware of the impact they can have on the delivery of healthcare beyond the dispensing of medicines, Mr Tait says.
One of the problems people encounter is timely access to end-of-life medicines.
Bente Hart is part of a PSA-led project in south-eastern New South Wales, which is funded by the SE NSW Primary Health Network COORDINARE, to help pharmacists better address that issue. It is called ‘Building capacity in the community pharmacy setting to improve access to appropriate end of life medicines for residents of SE NSW’.
Under the leadership of PSA Project Manager, Megan Tremlett, a team has developed a palliative care training package for community pharmacists which it took to the road.
‘We are talking to them about the palliative care resources available, giving them tools to engage with their local palliative care team and educating them about the Core Palliative Care Medicines List for NSW Community Pharmacy.
The significant benefit of keeping core stock is that prescribers can be reassured that the pharmacy can supply at short notice, says Mrs Hart. And families prefer sourcing their loved one’s medicines from a known place and familiar face during times of stress.
The NSW Clinical Excellence Commission recommends that community pharmacies in NSW stock five injectable medicines on the Core Palliative Care Medicines List for NSW Community Pharmacy. These are:
- clonazepam 1 mg/mL for anxiety and terminal restlessness
- haloperidol 5 mg/mL for terminal restlessness and nausea
- hyoscine butylbromide 20 mg/mL for noisy breathing
- metoclopramide 10 mg/2 mL for nausea
- morphine 10 mg/mL for pain and dyspnoea.
‘Pharmacists intending to stock the Palliative Core Medicines list should check with local palliative care teams for any local variations to the list,’ Mrs Hart points out. For instance, in some areas clonazepam is prescribed, but local teams are using midazolam 5 mg/mL.
Ensuring a timely supply of medicines, says Mr Tait, can prevent patients being delayed important symptom control or, worse, sent back to hospital.
Mrs Hart says the project has proved that other healthcare professionals benefit from involving pharmacists more.
‘I see it as very important that community pharmacists are notified of their patients under palliative care so they can inform the palliative care multidisciplinary team of any concerns that may arise,’ she says. ‘Pharmacists can advise on matters such as medicine availability, deprescribing or formulation changes to take into account swallowing problems and discuss what options are available.’
Other solutions for pharmacists to help patients and carers are the use of real-time prescription monitoring and My Health Record, and making any inquiries with compassion and empathy.
Mr Tait recalls having a patient with neck and head cancer who had swallowing problems. ‘The person was in tears when I told her I was a pharmacist getting an up-to-date list of medicines. She said, “I can’t swallow my medicines – I’m really struggling”. So, I rang the community pharmacy and explained the situation. They looked up their profile and realised that particular brand of antidepressants needed to be swallowed whole. By switching to a different brand, they could make it easier to swallow. So, the pharmacist took the lead and contacted the GP about getting a new script in a different formulation.’
Being proactive with prescribers, says Mr Tait, is often a good strategy.
‘I would say something like: “We have a number of people with a life-limiting illness using our services, and we want to be on the front foot. These are the medicines we’re going to hold and wonder how you feel about that?”’
He suggests pharmacists consult the Australian & New Zealand Society of Palliative Medicine’s Consensus-based list of medicines suitable for the management of terminal symptoms in community and residential aged care facilities in Australia, which lists medicines including clonazepam liquid and metoclopramide and morphine injections. (Visit www.palliaged.com.au/Portals/5/Documents/medicine-List-update.pdf)
Palliative care pharmacy, of course, is not just about end-of-life patients, but dealing with those situations can be the most taxing. Ms Tuffin says she is not the one delivering the news when care needs to change direction from cure to symptom management, however she may be present as part of the interdisciplinary team when those conversations occur.
‘I will often be standing there, listening and watching, making sure everybody’s comfortable and that nothing has been missed. When you get out of the room, you’ll often have a conversation with your colleague and may provide feedback and support and say something like, “You did a really good job in there”.‘
Positive feedback from families can be one of the saving graces in such stressful situations. Mr Tait recalls having a young patient on the autism spectrum who was approaching end of life.
‘I was involved in making sure things were set up for the family to care for him at home. I put all the information in writing about how to manage things. Even though a nurse was coming to the home, I wanted them to be empowered. I found that particularly rewarding.’
‘Our care doesn’t end when a person dies,’ Ms Tuffin says. ‘We also provide bereavement follow-up for families.
‘If we are concerned about a family member, one of our team might ring up a few weeks later and ask: “How are you going? How was the funeral? How is everyone in the family?”’
Self-care, says Ms Tuffin, therefore needs to be built into everyday routines.
‘I am lucky that I work in a very supportive, interdisciplinary team. We each have a different way of looking after ourselves: some have formal debriefing with counsellors, whereas others do yoga or meditation, or take time out to walk on the beach. You have to maintain your self-health to have the ability to go back and care for the next person and their family.’
How important is the relationship with GPs?
Good communication ultimately benefits the patient. Early advice of a patient’s palliative status allows support to be tailored. If GPs and nurse practitioners can be encouraged to prescribe anticipatory medicines, it can alleviate suffering and prevent transfer to hospital.
How important is it to stock end-of-life medicines?
Community pharmacists should aim to stock the medicines included on their locally relevant Core Palliative Care Medicines List and ensure nearby prescribers are aware of this. Engage with local GPs and find out who is on the local palliative care team; reach out to them and let them know the pharmacy would like to be involved when one of their patients has been diagnosed with a life-limiting illness.
Explore how best to communicate with the palliative care team.
What can community pharmacists do to help patients in the last days of life?
Undertake further education in palliative care. PSA’s free Essential CPE: Palliative Care activity is available to all pharmacists in Australia. Know your palliative care resources, including the Therapeutic Guidelines: Palliative Care, CareSearch and the palliMEDS smartphone app. The Program of Experience in the Palliative Approach (PEPA) also provides funding to participate in clinical placements or interactive workshops. Its aim is to enhance the capacity of health professionals to deliver a palliative care approach through participation in either clinical placements in specialist palliative care services, or interactive workshops.
- Tait P, Chakraborty A, Jones K, et al. What is the community pharmacists’ role in supporting older Australians with palliative care needs? Healthcare 2021;9:489.
- caring@home: www.caringathomeproject.com.au
- Pharmacists Support Service: www.supportforpharmacists.org.au
- palliAGED: www.palliaged.com.au/tabid/6147/Default.aspx
Build your skills with PSA Short Courses at psa.org.au/psashortcourses