Staff at the Aged Care Complaints Commissioner have been listening to the stories of those dying in aged care since we first began on 1 January 2016. These stories help us to understand the needs of dying people and their families, and to work with service providers to ensure that their palliative care improves.
Most of the complaints to us about palliative care are from the families of people receiving care in residential facilities, and the complaints are usually made after the person has died. The complainants are often motivated by their desire to improve care for other people so that others don’t experience the same kinds of situations that triggered their complaint. They usually acknowledge that it is ‘too late’ to help their own loved one.
The complaints we receive about palliative care are usually about symptom management, especially in relation to pain, skin care and wound management, and medication administration. Where a service has robust guidance material around such matters, it is usually easy to identify if there was an underlying deficit in the care. And we find that most services, once they become aware that their practice is inconsistent with their policies or not up to expected standards, will take the necessary action to correct it.
The most difficult complaints to resolve are those where there has been a breakdown in communication between the service and the family, where neither side feels the other side is hearing them and they no longer trust each other. Without early, ongoing and skilful communication, families can have unrealistic expectations and services can find their staff unwilling to engage further with families who they believe are not listening. By this stage, a sad cycle has been perpetuated, where everyone genuinely wants what is best for the person dying but barriers are emerging to provide that care.
Early and ongoing conversations that include careful questions and listening to tease out and understand the wishes and expectations of residents and their families, are a great way to try and avoid such a situation. Expectations can be better managed, even if they are unrealistic, if you know what they are early on in the process.
Careful consideration of advance care planning is another important way to reduce the risk of communication and relationship breakdowns. However, such planning does not usually cover all potential scenarios. An example of this is when an advance care directive was given to provide end of life ‘comfort’ care to a resident in the home. The resident was 91 years old and had middle-stage dementia and end-stage lung disease. She began exhibiting symptoms of delirium. Her family, believing her delirium was not related to her lung condition, wanted her transferred to hospital. The service believed they were advocating for the resident in pointing to the advance care directive and insisting she wanted to be cared for without being transferred. In the end, her delirium was found to be related to a urinary tract infection and she was transferred to hospital for IV antibiotics. Unfortunately, she died in hospital from urosepsis. This was a sad death for her family to remember, and not a happy way for the service staff to feel they had provided her with the best possible end-of-life care.
In this case, the daughter’s complaint was that the service did not transfer her mother to hospital in time for her to respond to IV antibiotics. The service’s response was that the resident had said in a valid advance care directive that she did not wish to go. After some discussions, the daughter was listened to by the service. In acknowledging that they could have done this better, the service apologised to the family and invited the daughter to participate in its staff training program and tell her story.
A prompt and genuine apology can mean a great deal, particularly to a grieving family. In 2013, the NSW Deputy Ombudsman, Chris Wheeler, stated that we need to ‘recognise that the giving of apologies is not only the ethically and morally right thing to do when mistakes for which we are responsible have caused harm, but also in a very practical sense a very powerful risk management tool’. In our complaints work we often see that an early acknowledgement of a failure in care and a good apology goes a very long way to taking the heat out of these issues, allowing the parties to focus on resolving them. For families who are mourning a death, this must surely help them.
As the Aged Care Complaints Commissioner, we provide a free service for anyone to raise their concerns about the quality of care or services being delivered to people receiving aged care services subsidised by the Australian Government. The complainant can remain anonymous if they wish. Complaints can be made by telephone (1800 951 822) or via the website (www.agedcarequality.gov.au/making-complaint). There are also resources on our website to assist consumers and service providers to resolve complaints.
Jan McGregor, Director, Aged Care Complaints Commissioner’s Clinical Unit