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Consent is crucial for coronavirus testing. But in nursing homes, it isn't always so simple

Patients must consent to be tested – but sometimes that can prove challenging.

A test sample is taken at a Covid-19 testing centre at Glasgow Airport in the UK.
A test sample is taken at a Covid-19 testing centre at Glasgow Airport in the UK.
Image: PA Images

AS HEALTH OFFICIALS scrambled to ensure that residents of nursing homes and residential centres were tested for Covid-19, one question loomed in the background – what if patients can’t consent?

Consent to testing is one of the hidden issues of Covid-19. While nursing home managers across the country have lived in daily fear of discovering a case of the virus inside their walls, that anxiety has been balanced with a recognition that however ill patients are, autonomy can’t be sacrificed. 

Testing has become an in-demand service in recent weeks. Dominating headlines and even being illustrated on the Late Late Show, it’s one of the most important parts of the government’s response to the pandemic. But it’s easy to forget that it’s an invasive, for some even distressing, procedure. 

To many, the act of consent isn’t even given a second thought. Indeed, the matter of testing is relatively simple – a swab is taken from the back of your throat and nose. 

But for others – who may suffer from dementia or a mental illness – actively choosing to have a test is a matter of much more complexity. 

In the same way that people don’t wake up after surgery not knowing how they got there, testing does not just happen to individuals, families or populations. They have to agree to it. 

“There is no legal, ethical or moral deviation from the requirement for consent even during a public health emergency,” Dr Edward Mathews tells TheJournal.ie.

Mathews, the Director of Social Policy and Regulation at the Irish Nurses and Midwives Organisation (INMO) and a former nurse, says that for any medical professional, especially those working in residential care centres, the idea of consent is a central preoccupation. 

There have been few more significant revolutions in medical care over the last 50 years than the shift towards recognising that patient autonomy should be paramount.

While the word ‘consent’ has been popularised by discussions over sex and relationships in recent years – featuring in everything from school curricula to debates about Normal People – in a health context the idea has long been a familiar one to healthcare workers, legislators and medical lawyers.  

This isn’t even the first global epidemic where questions of testing and consent have gone hand-in-hand – there have long been complex debates about the ethics and consent in HIV and AIDs testing. 

But in a crisis that many have compared to the Spanish Flu pandemic of 1918, the contrasts couldn’t be starker. 

The concern with individual autonomy wouldn’t have been much of a consideration in 1918, says Mathews. “There would have been much more of a focus on beneficence, as opposed to autonomy,” he adds. 

Describing consent as a “fundamental tenet of nursing practice”, he says that the profession has moved to a “broader understanding of consent”. 

“Nurses are constantly involved in mediating, every day, the autonomy and the will of the individual with the care the individual requires.”

Tweet by @The Late Late Show Source: The Late Late Show/Twitter

Consent

The decision to test staff and residents in every single nursing home came following growing concerns about a Covid-19 crisis in care homes. 

On 17 April, the HSE said that it would be prioritising testing staff and residents in long-term care centres – since then, testing has been carried out across the country. 

Consent quickly came up as an important consideration. In a document dated 28 April, guidance issued to nursing homes by the HSE for testing patients with dementia set out a step-by-step approach for how they might be tested. 

It suggests:

  • Using simple and clear language to explain the procedure around the test
  • Ensure there is no noise or distractions
  • Use short sentences
  • Repeat words if required
  • Illustrations can help

“The person has the right to refuse,” the document states. 

The HSE has a national consent policy, which stresses that “consent must be obtained before starting treatment or investigation, or providing personal or social care for a service user or involving a service user in teaching and research”. 

Guidance issued to nurses carrying out testing in residential care facilities, published on 1 May, details how exactly consent must be assessed. 

It states that residential care centre staff “should prepare a list of residents who they feel will be unable to take part and may become verbally or physically distressed as a result”. 

“In some cases where clinical presentation suggests a diagnosis of COVID-19 and it is not possible to gain consent or where it would be too stressful for the person,” the guidance states, “the medical officer may decide not to refer for testing”. 

In guidance on testing issued to disability services, the HSE stresses that a person “cannot be forced to take the test against their will. Any refusal or indication of an objection must be respected. Testing must only be carried out with the consent or agreement of the individual”. 

“Even if, despite all best efforts in the circumstances, someone lacks capacity to give or refuse consent for swabbing, any expression of their will and preferences, whether verbal or non-verbal, remains important,” a HSE spokesperson said.

“Hence, the person cannot be forced to take the test against their will, and any refusal or indication of an objection must be respected.”

Dementia

Staff who work with dementia patients are quick to stress that consent is complex. For staff who know the intimate moods and expressions of patients, consent doesn’t just have to be verbal. 

St Joseph’s in Shankill, a nursing home for dementia care patients, is managed by St John of God Hospital. Speaking to TheJournal.ie, CEO Emma Balmaine said that consent can be understood in a variety of ways – not just through words. 

“You have to come to it from a mindset that is very different to what it might have been 20 years ago,” she says. 

HSE staff arrived at St Joseph’s on 1 May. Over the course of a couple of hours, all residents and staff were tested. No patients withdrew consent, although one person only allowed their throat, not their nasal passage, to be swabbed. 

“You can never assume there is no capacity there,” says Balmaine. “A lot of people are able to say whether they want to do something or not.”

A lot has been changed by the not-yet-fully implemented Assisted Decision Making (Capacity) Act 2015, which upended Ireland’s approach to patient autonomy – basically broadening and nuancing the law on decision-making capacity. 

As Balmaine emphasises, someone’s capacity for decision-making and communication can change “moment to moment” – something many relatives of dementia patients will recognise.

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A healthcare worker at a different nursing home echoed these comments to TheJournal.ie. Where they work, every resident accepted being tested – but the presence of familiar staff, the worker said, made things much easier. 

However, while they said that they were always conscious of consent they acknowledged that there would be concerns if a family member refused consent for a patient to be tested – given the risk from Covid-19. 

Mathews stresses that family members can play an important role in making decisions for patients – but their views are not determinative. 

“Nominally and practically, we’re dealing with human beings who have rights and interests,” he says. Consent, he stresses, is never assumed even on a day-to-day basis. 

Some staff, he says, have contacted the INMO to check what exactly the appropriate approach is in the middle of a crisis like this. 

And while the practicalities of testing have not so far clashed with the principles of consent, scrutiny is likely to be needed in the months and years ahead as countries grapple with a post-pandemic society. 

Especially for people who are vulnerable, autonomy will always remain high on that agenda. 

“It has to be nuanced,” says Mathews. 

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