This article currently appears in the September-October 2013 edition of Australian Ageing Agenda
“The culture in aged care is not really set up to support people dying in aged care at all, which is incredibly problematic. We need to completely rethink the culture.” Dr Yvonne Luxford
When Linda Marlow, Rockingham Nursing Home’s Director of Nursing joined the high care facility eight years ago, end of life care was disjointed and sometimes delayed.
Staff said they felt ill-prepared to deliver palliative care. Some residents requiring urgent after hours pain relief were unable to get it and as a consequence, experienced unnecessary discomfort and distress.
However, under Marlow’s leadership and with the interest and support of clinical nurse manager, Sharon Magennis, the facility has since transformed its approach to end of life care, placing a focus on early planning and holistic care as part of an award-winning project.
With training from the Cancer Council of Western Australia and the state Department of Health, the Hall & Prior home has introduced ‘end of life pathways’ for all of its residents, aimed at identifying the terminal phase of life. A five-member palliative care ‘link team’ also provides expertise and guidance to staff.
“We talk about palliative care every day,” says Marlow. “At the 9am morning handover we discuss the trajectories of all of our residents and any signs indicating a change.”
Since commencing the project in May 2011, all staff have been trained in the home’s approach to palliative care with new staff introduced to the model from their first shift.
Staff are more confident about discussing end of life issues, Marlow says, and have fostered stronger relationships with families.
The facility has also earned the trust of GPs who are now engaged in a more proactive approach to palliative care. Medications are ordered in advance and in the past 18 months, late night calls to GPs or the Residential Care Line have reduced to zero.
Marlow says the end of life pathway model ensures that pain relief and comfort measures are planned for and available to staff at all times. “[In the past], it wasn’t uncommon for the treating GP to write down the requirement of palliative care for a resident, but they didn’t order medication in advance or trust that the staff could handle the end of life care,” she says.
“The relationship with GPs has improved, where they now have confidence in the staff, they can see care plans are current and case conferences with families have occurred.”
Most significantly, Rockingham Nursing Home has not transferred a resident to the local hospital since the palliative project was introduced, meaning that residents have been supported to ‘die in place’.
Marlow says by discussing end of life care from the moment of admission and involving the family sooner, staff can achieve better outcomes for residents and families and help support residents to die with dignity.
In recognition of the project’s success, the model has been rolled out to all of Hall & Prior’s 13 homes in Western Australia and in July, Rockingham Nursing Home picked up a Better Practice Award from the Aged Care Standards and Accreditation agency in the health and personal care category.
Still below par
While many providers like Rockingham Nursing Home are delivering high quality palliative care to their residents, CEO of Palliative Care Australia, Dr Yvonne Luxford, says access to palliative care in residential aged care is still well below par.
Luxford cites Australian Institute of Health and Welfare statistics that show that only 22 per cent of permanent aged care residents receive palliative care.
In 2010-2011, there were about 50,500 deaths in residential aged care, but in the same year only 11,083 permanent residents had an ACFI assessment indicating the need for palliative care.
Luxford says the latest evidence indicates that around 70 per cent of those who die each year would benefit from access to palliative care, a figure that would be even higher among older people because of ageing and chronic disease.
The National Aged Care Alliance’s (NACA) own national report on palliative care even states that the provision of quality palliative care in residential and community care, particularly for the majority who have dementia, is the exception rather than the norm.
NACA says conversations about dying are generally ad-hoc and remain largely taboo. Symptoms such as pain and dysphasia are often poorly managed; and end of life processes such as respiratory failure, dehydration and anorexia are too often treated as medical emergencies, rather than as normal components of a terminal process that can be managed appropriately by palliative care teams and aged care staff.
To improve upon this situation, Luxford says there needs to be a significant culture change in aged care to recognise palliative care as core business.
“If a third of all residents are dying each year, then aged care facilities really have to accept the Productivity Commission’s claim that palliative care should be core business for aged care and yet it still seems that the culture is often not set up to support that concept,” she says.
“It’s not really set up to support people dying in aged care at all, which is incredibly problematic. We need to completely rethink the culture of aged care.”
Luxford identifies poor linkages with GPs skilled in palliative care, a lack of direct linkages with specialist palliative care services and inadequate training of aged care staff as key issues.
“We hear of horror stories of old people in pain with extreme symptoms who are simply moved into a room that is marked palliative care, but it doesn’t mean that they are receiving any better care at all,” she says.
While recognising that the majority of facilities strive for high quality care, Luxford says individual cases of residents dying in unnecessary pain as aired on ABC’s Lateline have also been raised with PCA.
“One woman told me about her grandmother who was in great pain to the extent that she could be heard yelling throughout the facility but she was told that the pain specialist wasn’t available because it was a weekend and she wasn’t being offered pain relief.
“You do hear these stories and sometimes you hear experiences of people with dementia who aren’t receiving adequate pain relief and other symptom control.”
Pain management and ‘opiophobia’
Professor Colleen Cartwright from Southern Cross University says it is an abuse of an individual’s human rights to leave someone in pain.
“There is a still confusion out there in the community about what is and what isn’t euthanasia. People think if someone is given extra pain relief, which may risk hastening death, it’s some form of euthanasia. It has nothing whatsoever to do with euthanasia,” she says.
“The irony is if you leave someone in severe pain, you can hasten their death. To die free of pain is everybody’s right.”
Dr Yvonne Luxford, CEO of Palliative Care Australia says increased education for health professionals about opioids in palliative care is necessary to address some of the fear about their use.
“Some GPs, some nurses and other staff are simply very nervous about the use of opioids and misunderstand its use in palliative care.”
Palliative Care Australia CEO Dr Yvonne Luxford
An active pathways approach
Luxford says a static approach to caring in facilities is also failing residents and contributes to the distress felt by families and staff.
“It’s about recognising when people are dying and taking steps to ensure the best quality of life until the end,” she says.
“If the whole facility is conscious that a person is likely to die in the next few weeks, for example, then the whole of the facility can actually gear towards that and understand it, and it means that even the kitchen staff behaves differently in the kinds of foods they may be preparing for the person.”
Luxford says understanding that palliative care is not just about terminal care, but support for a person, weeks or even months before death, will also go some way to improving care. However palliative care funding via the Aged Care Funding Instrument currently does not support this concept.
“We have to accept that people are going into aged care with much higher levels of acuity then what we have ever seen before, often with multiple chronic conditions,” she says.
Luxford hopes that the new quality indicators to be published by the My Aged Care website will include palliative care or end of life care as a separate benchmark, and would rate facilities according to a number of factors including linkages with skilled GPs, transfers to hospital and compliance with advance care plans.
Education and staffing barriers
To help upskill the general aged care workforce to deliver care according to a palliative approach, the Living Longer, Living Better reform package has assigned $1.9 million over five years to expand the existing Program of Experience in the Palliative Approach (PEPA). A further $19.8 million will provide specialist palliative care and advance care planning advisory services for aged care providers.
Lifting the quality of training through ongoing, face-to-face education is critical to enabling a culture shift, says Luxford. As a relatively young field, advances in palliative care are rapid and continuous education for GPs, nursing and care staff is imperative, she says.
Luxford says the roll out of targeted training in palliative care must also take into account the high staff turnover of staff in aged care and barriers to take up of available training.
To embed higher training standards, the 2012 Senate committee report into palliative care recommended including advanced care training as a component of the aged care accreditation standards.
In addition to better training for staff, there are also strong calls for improved access to specialist palliative care services to support aged care facilities. However, the stretched capacity of specialist services to meet the needs of the community has meant in-reach services to aged care facilities have been limited.
The recent Queensland parliamentary inquiry into palliative care, which handed down its final report in May, heard evidence that some specialist palliative care services are restricting their delivery of services due to increased demand and that particular patient groups including residents of aged care facilities are missing out.
Specialist services in Queensland also often include criterion limiting services to clients with a prognosis of less than three months, which is difficult for older clients with non-malignant disease to meet.
This trend of restricting access to clients extends beyond Queensland and was verified by the PCA as a significant issue. While specialist services often provide phone consultations, it is increasingly difficult for specialists to conduct direct visits to residential aged care facilities.
To extend the delivery of specialist palliative care services, NACA has called for increased government support, both state and federal, to promote aged care providers becoming specialists themselves, given their infrastructure suitability for provision of hospice care.
To address some of these challenges, new models such as services utilising the role of the nurse practitioner are emerging. For example the Metro South Hospital and Health Service in Brisbane has established a nurse practitioner-led residential aged care facility (RACF) palliative care service that provides an in-reach service to 76 facilities. This service has significantly reduced the number of inappropriate referrals and admissions to emergency departments.
The hiring of salaried GPs by private aged care providers, which Bupa has recently commenced, may also present a new model to improve access for residents to GPs and palliative care, says Luxford.
The Queensland parliamentary inquiry also recommended developing medication ‘imprest systems’ in facilities as a way to facilitate the immediate control of symptoms for palliative care residents. In the absence of a GP, a medication imprest system would allow aged care nursing staff to access medications that are not labelled or stored for a specific patient but are available for potential administration, when necessary, after hours.
SA government reinstates palliative care funding
Following community outrage and a 5500-strong petition, the South Australian government has today announced it will continue funding the Philip Kennedy Hospice in Adelaide for another 12 months.
Last week Philip Kennedy Hospice, Australia’s only hospice operated by an aged care facility, was told it had lost $1 million of funding from the South Australian government forcing the service to close its doors at the end of the year.
However SA Health Minister Jack Snelling said this morning that he has reconsidered the matter and had directed his department to continue funding the hospice for another 12 months.
Approximately 300 patients a year are cared for by the service operated by Southern Cross Care, which has been running for over 25 years.