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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”.
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“Nurses are constantly involved in mediating, every day, the autonomy and the will of the individual with the care the individual requires.”
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.”
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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.
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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It smells like political posturing to me. The info in the paper during was in direct contradiction of what the minister said before Christmas – ruling out tax credits because as he said in a parliamentary question a system of tax allowances would not benefit parents working in the home and could be seen as discriminatory. In addition, tax reliefs would favour the high paid while those on the minimum wage or in part-time work would not benefit to the same extent. Secondly he ruled out the second ECCE year now it back on the table. He’s doing a political cha cha because of the growing momentum for the Association of Childhood Professionals petition and 17th February rally which is even more reason to keep the pressure going. These hollow promises are just to attempt to quieten voices but I for one was raging when I read the article. This committee too is just a stalling tactic too, it will take several months for the committee to be formed, compile the data, launch it, then it will gather dust for a bit and hay presto it’s election time and they’re gone. Surly there is enough reports done of the years that can be dusted off and acted on. I for one will be at the Dail on 17th Feb with the ACP using my voice and looking for positive change. #oneunitedvoice (rant over)
Course it is, it’s the same government that threatened to cut child benefit if we didn’t sign up to IW, “but childcare services are important to them” pffffft
The first thing they need to do is look at the childcare subvention scheme and community childcare.
Why oh why are the government subsidising childcare for those who choose not to work.
Yes I know there will be do-gooders who will say the child needs it, that maybe these parents are looking for work etc. there is millions wasted, I work in the community sector and as a working parent there is nothing that drives me mad than meeting parents (who choose NOT to work) leaving their kids off at crèche a few mornings a week, so that they get ‘a break’ and pay between €20-€30(and complain having to pay this) for the privilege as the government subsidises this. Yet I have to pay full crèche fees of a grand and pay tax. While there are numerous families struggling to pay bills and childcare, there are huge numbers of subsidised crèche places being taking up by parents who do not work or train and do not want to!!
Selita, maybe the fact that some people ‘choose’ to stay at home and take responsibility for the majority of their childs care should be praised and not criticised. Of course people who do this have less money and that is why they need subsidised fees, or are they simply not entitled to a ‘break’ because they don’t put their child in crèche for 8+ hours a day and subscribe to a societal norm that is about as anti-family as it gets!
No I see her point Henry, and have no problem with the cost of childcare coming down for working families, but I didn’t like her comments in relation to parents who don’t work!
I am not undervaluing the stay at home parent, it is something I would aspire to be!!! Rakel I am talking about parents (both) who CHOOSE NOT to work and have no intention of working, having numerous kids….claim social welfare benefits, social housing etc. Parents not wanting to work and putting there child into a crèche 20-25 hours per week is hardly looking after their children? if I didn’t have to work I wouldn’t have my kids in crèche, why would I? as a working mother when do I get a break, im up at 6am, kids feed and clothed, dropped off, in work run of my feet, work through lunch so I can get out early, pick up kids, spend time with them, make dinner, bed time routine, clean up and finally sit down at 10pm and off to bed at 10.30, woken at least once a night by my baby.
I HAVE to work in order to keep a roof over my kids head, if I gave up work we would lose our home, I cant sell as we are in negative equity, I would love a large family, but that is not possible.
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