Better community-level planning needed for remote palliative care

Imagine living in remote Victoria, in the final stages of a terminal illness and in great pain. Your nurse offers to travel the two hours to the nearest pharmacy to get the medication needed. When she arrives they are out of stock.

In remote and rural Victoria, community nurses are at the front line of managing the palliative care of their patient, including the prescribing and access to emergency medicine that may be needed urgently to deal with difficult symptoms like pain.

Community nurses poorly trained in anticipatory medication use

A survey of community based nurses in the Gippsland region to provide what are called anticipatory or emergency medicines for those in palliative care has been conducted by the School of Rural Health has found that, while these nurses are often the only people available to provide access to medications for those with terminal illnesses in remote and regional Victoria, they are poorly trained in the use of these medications and often lack support from doctors unwilling to prescribe these medications and pharmacies failing to stock them. One nurse surveyed said she had to travel two hours to obtain medication for a dying patient only to find, on two separate occasions, that the medications weren’t available.

Findings inform new state-wide guidelines

The findings of the survey have been key in the development of Victorian state-wide anticipatory medications guidelines.
Anticipatory medicines are those these are kept in the home in anticipation they will be needed for symptoms such as pain particularly in those in terminal stages of illness. Reasons for their use include a worsening of existing symptoms; the appearance of new symptoms; a decrease in the ability of the patient to take oral medications and patient distress. The survey found that most palliative care patients needed opioids for pain relief and antiemetics for nausea and vomiting to be available as and when needed.
Palliative care in the Gippsland region is currently in the sights of the newly appointed Latrobe Health advocate Jane Anderson who has said drug and alcoholism, mental health and improvements to palliative care will be her priorities for the next 12 months.

Access issues lead to unnecessary hospital admissions and stress

According to the lead author of the research, published in the Journal of Palliative Medicine, Dr Hanan Khalil, lack of access to anticipatory medicines “can lead to unnecessary hospital admissions, increased patient and family stress and anxiety by nurses and care givers of their capacity to manage palliative care in the home.”

In rural and remote areas access to palliative care services and practitioners – as well as hospitals should things take a turn for the worst – are very limited.

One third of community nurses don’t have specific guidelines

The Monash Rural Health researchers surveyed 29 community-based nurses in the Gippsland region, an economically disadvantaged rural region in south-east Victoria. Community-based nurses are registered nurses who work in care home environments and/or aged care facilities. They provide advice and support to patients and caregivers in the management of symptoms.

Most of the nurses who completed the survey were involved in mixed practices providing community palliative care and district nursing while almost one third worked in a remote setting.

The survey found that almost three quarters (72%) were involved in administering anticipatory medicines in the home.
While most believed it useful to organise these medications in the home setting, a third of all nurses in the survey did not have specific guidance regarding the use of these medications for their patients.

The survey found that opioids were the most commonly used anticipatory medicine (55%) followed by antiemetics (45%).
The most common decisions taken by nurses to administer these anticipatory medicines were:

  • Patient deterioration or in terminal phase (66%)
  • Fluctuating levels of anxiety and agitation of patients (48%)

Doctors unwilling to prescribe anticipatory medications

A third of all surveyed nurses said that it was often difficult to access anticipatory medicines for terminally ill patients because doctors were not willing to prescribe these medications for fear of drug abuse/misuse as well as other factors such as pharmacy shortages and an inability to access medications  particularly for those in remote regions who had to travel large distances to obtain the medications.

According to Dr Khalil, the main concern of those surveyed is a lack of formal training with only five out of the nine nurses surveyed who work in remote areas having formal education in medication handling – and three of these nurses reporting a medication incident such as giving the wrong medication, a shortage of the medication at the pharmacy level and not being able to administer the drug on time and expired medications given.

Call for better community-level planning

The authors also call for improved community level planning and agreed protocols “to ensure the provision of timely anticipatory medicines which improved the quality of life of patients and their care givers.”

Dr Khalil’s work has informed the development of a Victorian state-wide anticipatory medications guidelines. The guidelines will be piloted shortly before their release to be used in health care services.

Challenges Associated with Anticipatory Medications in Rural and Remote Settings, Journal of Palliative Medicine March, Vol 22 Issue 3, March 2019.