Open disclosure is needed in all aged care homes

18 April 2019

How often does an incident in an aged care home escalate because management is afraid of litigation?

When a mistake occurs in a public health service, the person who has been affected and/or their legal representative must be informed about the ‘adverse event’. This is known as ‘open disclosure’.

Open disclosure is defined as “the open communication that takes place between health practitioners and patients after an adverse event”.  An open disclosure process includes: An apology or expression of regret; a factual explanation of what occurred; an opportunity for the affected patient to relate their experience; and the steps taken to manage the event and prevent its recurrence.

Legislation mandates open disclosure in all public health services in Australia, though each state has different legislative requirements. In Victoria, for example, the Victorian Charter of Human Rights and Responsibilities Act 2006, requires health care practitioners to discuss an adverse event with the person who has been affected and/or their legal representative.

There are around 2,700 aged care homes in Australia. Only 5 per cent of these are government owned. The other 95 per cent are private or not for profit. Although government owned aged care homes require open disclosure, there is no legislative requirement for open disclosure in private or not for profit aged care homes.

When an adverse event occurs in an aged care home, some managers inform the resident’s legal representative. These managers also respond respectfully and in a timely manner to requests for information about the adverse event. In these cases, the situation rarely escalates.

In contrast, when a manager is not open about an adverse event and does not provide accurate information about what happened, the situation can quickly escalate. With the media’s insatiable appetite for horror stories about aged care homes, these stories often make headline news.

A month ago, a 94-year-old woman was resuscitated in an aged care home despite having an advanced care plan stipulating Do Not Resuscitate. The family watched their mother and grandmother die a slow and seemingly painful death in a hospital palliative care unit, rather than die peacefully after breakfast.

Despite numerous attempts to find out exactly what happened, a month later the daughter still did not know why/how/who resuscitated her mother.

The quest for information began two days after her mother was transferred to hospital. The manager of the aged care home phoned. He said to the daughter: “I heard your mum got resussed on Saturday”. This was the first time the daughter was told her mother had been resuscitated.

How did a woman with an Advanced Care Plan that clearly stated Do Not Resuscitate get resuscitated?

During a time when the daughter should be grieving, she instead tried to get information. Who made the decision to resuscitate her mother? Where was she resuscitated (in the lounge room or in her bedroom)? What did her doctor advise the staff to do? What did the Ambulance Victoria advise over the phone?

She phoned the aged care home’s head office. She left voice messages that were not returned. She sent emails that were not answered. Eventually she spoke with the District Manager who undertook to investigate what happened.

Aged care homes need to prepare themselves for open disclosure. Standard 6 of the new Aged Care Quality Standards states: “Appropriate action is taken in response to complaints and an open disclosure process is used when things go wrong”.

By the time the daughter contacted me, she had heard several different versions of the event. The Manager of the aged care home, the District Manager, the hospital doctors, the aged care home’s progress notes all provide different accounts about what happened that Saturday morning.

The daughter was so frustrated she was ready to tell her story to the media.

Instead, I suggested she lodge a complaint with the Aged Care Quality and Safety Commission and sought advice from Elders Rights Advocacy. I also suggested she requested an urgent face-to-face meeting with the District Manager.

The District Manager agreed to a meeting. She asked an employee of Elders Rights Advocacy to accompany her as a support person. However, this is not a service Elder Rights Advocacy provides after a resident has died.

I contacted the CEO, OPAN to ask where someone in her position should go for help. Although the National Aged Care Advocacy Framework focuses on the older person, the framework has recently been expanded to include families or representatives.

I agreed to be the support person in the meeting with the District Manager. Unfortunately, an hour before it was scheduled, the daughter received a phone call to inform her that the meeting had been cancelled. There were unforeseeable circumstances.

To prevent this escalating, I immediately phoned the aged care company. I left a message explaining the importance of the CEO returning my call. I did not feel confident that he would.

Much to my relief, the CEO phoned back. I told him the daughter simply wanted a factual explanation of what had occurred, a genuine apology and to know what steps have been taken to prevent its recurrence. She wanted ‘open disclosure.’

I arranged a meeting so the daughter could hear the truth about what happened to her mother. A month after her mother was resuscitated in an aged care home, the daughter now has a time-line to show exactly what happened. She also received a heart-felt apology. During the meeting, we discussed ways to prevent a similar tragedy.

This incident demonstrates an urgent need for aged care homes to have policies to ensure residents are not resuscitated against their wishes. Residents and their families are encouraged to make advanced directives to state their wishes for end-of-life medical care. These advanced directives are meaningless unless health care professionals respect an older person’s wishes.

Aged care homes must ensure direct care staff on each shift know which residents are, and are not, for resuscitation. Each handover sheet should identify residents who have documented Do Not Resuscitate in their advance care plan. This is particularly important for agency staff.

I once arrived at an aged care home to find a fire truck, 2 Mobile Intensive Care Unit Ambulances (MICA), a paramedic motorcycle and an ordinary ambulance. All these flashing lights heralded the death of a 94-year-old resident. This may suggest that Ambulance Victoria needs some education when they receive a 000 call from an aged care home.

A doctor once told his colleagues that, when he reached a certain age, he would have “NOT FOR RESUSCITATION” tattooed on his chest. This would undoubtedly guarantee his wishes were respected.

Currently, residents in aged care home must ‘opt out’ of resuscitation. They do this by indicating Not for Resuscitation in their advanced care plan and advanced care directive. It may be better to make cardiopulmonary resuscitation an “opt in” for residents in all aged care homes. Only those residents who choose to be resuscitated will be. Others will be allowed a dignified death.

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