The grief my 91 year old dad and I have gone through while watching her [mum] approach death has been magnified by seeing her in pain. We’ve felt pretty ignored. My mum has experienced preventable pain when she can’t advocate for herself. We felt the nurses waited for us and were never proactive themselves to manage her pain. The culture is pain is normal.
carer of person in residential aged care
It seems so obvious that pain is a major contributor to quality of life. Perhaps it is too obvious? When you consider the need to offer quality aged care, it seems inconceivable that there is no measurement or reporting of pain, and yet that is where we are now.
We have known for some time that if we want to improve something, we need to both measure and monitor it. Without any measurement or monitoring, we may well be perpetuating failure. And it seems that is what we have been doing in many residential aged care settings. The provision of quality pain management is not measured, not rewarded, not even acknowledged. In this kind of system is it any wonder that so many residents are in pain?
This week the Royal Commission into Aged Care Safety and Quality has released a new report detailing some of the failings in aged care. It is particularly interesting to Painaustralia that within this report there is new research from the South Australian Health and Medical Research Institute (SAHMRI), showing that a large range of quality outcome indicators can be produced from existing data without any significant new burden to aged care providers. One of the indicators that could be reported on is indicators of pain.
For some time, a number of aged care providers have pushed back against quality indicators in their services, including measures of pain. Their argument has been that such measures are too difficult to put in place. For many years, this argument has been accepted by government and others. It is time governments, consumers and their families pushed past this inconvenience to providers argument and put in place what we all know the system most needs – indicators about the quality of care being provided to our most vulnerable older Australians.
The Royal Commission into Aged Care has heard many stories from consumers about the difficult decision family members make to seek an aged care residential bed for their loved one. Such decisions can be very difficult for everyone involved. Many family members then feel as though they have failed when the quality of care provided by the aged care facility they chose is inadequate.
The question we need to ask here is how can people know about the quality of care that is delivered by a particular aged care provider? How is it possible to see beyond the glossy photos, the linen on the dining tables, the tiling in an en-suite? The reality is that purchasing care is not like purchasing real estate and no matter how nice the physical environment, if the care is not provided the resident will suffer.
Governments will argue that some aged care quality indicators on issues like; the extent of pressure injuries, use of physical and chemical restraint, and weight loss have been mandatory and publicly reported since 2019. Unfortunately accessing this data is not always straight forward and the indicators themselves are inadequate reflections of whether the resident experiences quality care.
In most human service systems, the customer experience is what matters. This is why whenever we have our car serviced, enjoy a restaurant, or buy a product we are often asked about our experience as consumers. These feedback processes enable the service to both monitor and improve its performance.
The active engagement of consumers in residential aged care to provide feedback as part of monitoring and improvement programs is not considered important. In fact, some of the evidence presented to the Aged Care Royal Commission suggests residents and families are fearful of complaining about the services they receive, afraid their complaint will lead to worse treatment and more suffering.
It’s been a very stressful nightmare. Polite requests, repeated meetings and even the first visit from palliative care weren’t enough. You shouldn’t need to threaten ministerial complaints that eventually made the nursing home stress out about bad press during a Royal Commission to get effective pain management
carer of person in residential aged care
Pain does not have to be a part of ageing, either in the community, in our homes or in residential aged care. We have the knowledge and skills to be able to offer better ways to treat and manage pain in aged care. At the very least, we should expect that this knowledge and expertise to be available to older Australians living with pain. Yet we know, this is currently not the case in many aged care settings.
What gets measured gets done. The first step in ensuring less suffering is to actually measure pain and its treatment within aged care. It is not hard. It can and should be done.
The second step is to acknowledge that the aged care system is not there to serve the needs of governments or providers, it is not about generating profit or sets of tick and flick administrative tasks. Aged care must serve the needs of older Australians and their carers. This means putting our older Australians at the centre of the performance monitoring, of the measures around quality of care. It means not only seeking their views and the views of their loved ones, it also means publicly making this information available to ensure real accountability for the quality of services provided.
We have a long way to go in meeting the needs of older Australians, particularly those living with pain. As a civilised society that values the knowledge, experience, and contribution of those who have gone before us, surely the least we can expect is that we will provide quality in our aged care services? If we are not prepared to actively monitor and report the quality of aged care services in Australia, we are not only failing older Australians, we are failing our fundamental values.