“It was brutal,” said ’Carine’, a care home nurse from near Paris. Just a week ago she had told Mediapart about the measures put in place to deal with residents who might catch Covid-19 at the nursing home in the Hauts-de-Seine département or county west of the French capital where she works. Fast forward seven days and she now finds herself in the front line of the epidemic.

For in that short space of time three people have died in the home and eleven others have tested positive for the coronavirus. “It’s spreading at an incredible speed,” said Carine, who asked Mediapart not to use her real name. “I was on a break last weekend and looking at their traumatised faces on Monday I had the impression that they’d all lost 10 kilos. When I go home I’m afraid I won’t see them alive again.” None of them can be transferred to local hospitals as these are all, as she put it, “oversubscribed”.

Carine described the sudden deaths that had occurred in just a few hours at the home. “We weren’t at all prepared for that,” she said. “One resident had a few symptoms, a stomach ache, a slight cough. She died in two hours. It happens quickly, very quickly.”

With the government only now starting to react, and drawing up a list of requirements and rerouting some of its resources to France’s 11,000 or so care homes - known as EHPADs, standing for Établissement d’Hébergement pour Personnes Âgées Dépendantes – the reality on the ground appears not to have changed at all. For example, on Thursday April 2^nd Carine was looking after 37 residents on her own, 11 of them with Covid-19. This is despite the fact that what is called the ’réserve sanitaire’ [1]- a voluntary network of health professionals – had been activated for the care home.

This made it impossible for Carine to offer the most personal care for the residents. “Yesterday we had none of the paper gowns left which we use when we go into the rooms. We managed to find some at a hospital and that will do for a week. But afterwards ?” wondered Carine. “Even the special boxes we use to throw our contaminated medical waste in are starting to run out. Medicines are all right for the moment, we’re managing.”

Stéphanie Lévêque, a doctor covering three care homes in the Haute-Garonne département or county in south-west France, is not so fortunate when it comes to medicines. She was worried last week that they did not have enough supplies to offer proper palliative care for residents. “In one of my care homes there will soon be no Valium or scopolamine, a medication used for bronchial congestion,” she said. “We’re also going to be short of sedatives. I’m in the process of building up a supply to share between my three establishments to help with the most urgent cases.”

The doctor is also worried about the slowness of administrative procedures ; for three weeks she has been asking for the town’s health professionals to be able to get their own supplies of the drug midazolam from hospital pharmacies. This injected medicine, which is used under the terms of the 2016 Claeys-Leonetti law [2] - which introduced the right to deep and continuous sedation and forbids euthanasia for end-of-life patients – allows for a sedative to be administered in two particular sets of symptoms ; haemorrhages and acute respiratory distress.

While the health authorities are aware that they need to give care home practitioners access to these drugs so that their patents do not have to be transferred to hospitals - where there are no places anyway - the decisions on their use are still awaiting an official decree from the Ministry of Health. “I hope that this administrative time will not lead to painful deaths through asphyxia where relief is not given,” said Stéphanie Lévêque. Midazolam is also one of the drugs which is now a priority medicine for patients with Covid-19 in hospital intensive care units, meaning that its “allocation” to health professionals in the town is limited.

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« Il n’y aucune demande de limitation de recours de la morphine auprès de qui que ce soit » : Olivier Véran, le ministre de la Santé, répond à la députée LFI Mathilde Panot en séance à l’Assemblée nationale

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Health minister Olivier Véran, responding to questions from the opposition, denies there is a shortage of medicines. © franceinfo

According to a report from one regional health authority or ARS that Mediapart has seen, there have indeed been “tensions” over supplies of midazolam. That same report also suggested that “alternative medical treatment in order to allow palliative care in care homes” was being drawn up.

The Ministry of Health has confirmed to Mediated that some doctors and care home directors have now started to receive such instructions from regional health authorities or hospital palliative care services – sometimes passed on via local expert groups. These instructions involve adapting the usual medical treatment for patients suffering from acute respiratory distress and who cannot go to hospitals that are at full stretch.

One such local document, dated March 20th and seen by Mediapart, states that these new proposals are “different from recent recommendations when it comes to doses and methods of monitoring”. It then goes on to make clear that the main aim of this new advice is to offer relief to patients during an “exceptional period”.

“The aim of the proposed therapeutic steps is to ensure the comfort of the patients faced with a state of asphyxia whose progression we know will quickly become unfavourable,” states the document, referring to a context in which the “regular re-evaluations habitually practised by the care teams cannot be guaranteed”. It then adds : “This is not about steps seeking to hasten the deaths of patients but rather to assure them relief.”

’Nathalie’ – not her real name – a nurse at a specialist care home or MAS (maison d’accueil spécialisée) in a psychiatric hospital in the east of France, is not greatly reassured by this final sentence. The MASs are specialist units where long-term patients with mental illnesses, and who are usually very dependent on help, generally end their lives. In Nathalie’s unit, where the average age is close to 75, there are already ten residents with suspected Covid-19.

“Yes, they must be given relief, but at what cost ?” worried Nathalie. At her unit, too, the medical staff have received files – seen by Mediapart – which indicate the different protocols to follow in case the illness gets worse and the patient cannot be hospitalised. “We are being asked to put our patients under sedation but without a ventilator as they do in hospital, it’s the road to death !” she said with alarm. “They tell us to manage them, to take care of them, but how can you do that with just a little oxygen and morphine ?”

The nurse is distressed about the situation. “I hope I won’t have to carry out the fatal act. The issue of liability is going to be huge. If one decides to extinguish [the life of] a patient in respiratory distress, if the family knows and makes a complaint, will management support us, given that nothing is written in black and white ?” she asked.

’Some means of chemical or physical restraints’

The health crisis caused by the Covid-19 outbreak has led to other ethical dilemmas too. Since the first cases and deaths appeared in nursing homes, residents have generally been confined to their rooms. But some older people, and in particular the many residents suffering from cognitive disorders such as Alzheimer’s, have great difficulty respecting this rule. They can forget from one minute to the next what the care worker has just told them and leave their room to wander in the corridors.

Aware of this problem, some regional health agencies have also started to suggest protocols to help in the use of the “chemical or physical restraints” that are already sometimes used - under medical supervision and for limited periods - in cases of temporary aggressiveness on the part of a resident or where staff and other residents are put in danger.

In one document seen by Mediapart, which is headed “Wandering and the need for confinement : proposed responses”, it states that in the context of the Covid-19 outbreak in which “the collective interest takes precedence over the interests of the individual, it might unfortunately be necessary to confine the resident/patient to their room … Depending on how this confinement is tolerated, some means of additional chemical and/or physical restraints could be envisaged.”

Chemical restraint means the use of anti-anxiety medication or tranquillisers, or even neuroleptics – antipsychotic medication. When it comes to physical restraints the document advises “abdominal restraints” which refers to a chair with a Velcro lap belt, used for residents who have repeated falls.

Louise – not her real name – who is a psychologist in a care home in the Aude département in south-west France, confirmed that these instructions had been sent to all the nursing homes in her area. She said angrily : “There’s a lethal risk in these confinements ! People eat less with these medications and there is a big danger of things going down the wrong way and also a loss of balance. Being strapped into an armchair all day is bound to cause pressure sores.” The monitoring and “regular clinical re-evaluation” of this kind of treatment, which the document recommends “every 30 to 60 minutes”, also seem completely fanciful, especially in establishments that are notoriously under-staffed.

The director of one care home in the Aude, who from the start of the crisis has criticised the “health only” approach of the authorities, said he had not received any particular advice on this issue in relation to his residents. But he warned : “Confinement is anything but care. So how can one find alternatives ? We have one case of a person with Alzheimer’s who wanders around and who is presenting signs of Covid-19. We are paying him particular attention so that he doesn’t walk around. But it’s difficult and demanding in terms of staff time.”

The psychologist Louise pointed out that since the outset the crisis has been managed on the basis of shortages [3], on this issue as well as others. “As we know, the major problem is the protection of carers who are the only ones – or just about – who’ve been able to go into care homes for weeks,” she said. “Yet we don’t have enough masks in my establishment and no FFP2 masks [editor’s note, higher specification masks which protect the wearer from infection]. Isn’t that the priority, rather than recommending measures that are harmful to health, for people who don’t even have Covid ?”

The issue was deemed sufficiently serious that it prompted a new guidance note from the scientific ethics advisory body the Comité Consultatif National d’Éthique pour les Sciences de la Vie et de la Santé [4], (CCNE), published on March 30th, which was devoted just to care homes. It had been sent three days earlier to the national authorities. “The measures envisaged at the level of establishments should take into account the health requirements for the residents and those around them, as well as the strong ethical and human requirements which are equally essential,” said the committee, which “renewed its alert to collective organisations”.

This report repeatedly highlights the importance of tests, which like masks are in short supply everywhere, as well as the different possible measures of collective confinement, in what it calls “dedicated zones”, in place of individual confinement which would produce “psychological risk factors of increased mortality or changes in state of health”. Being kept in one’s room “raises not just important health issues but ethical, legal and, more broadly, social issues too. [Being confined in a room] leads to depriving the residents of what often constitutes the meaning of their existence at the end of their lives,” the report concludes. In fact, many care home residents have not received any family visits since March 6th.

“At the end of the crisis we might delight over not having had cases of Covid in such and such a place,” said Louise, the psychologist from the Aude. “But we won’t talk at all about what results from these confinement restraint measures, about those people who are going to become bedridden within a week !”

Many carers are in any case likely to resist calls for such measures. “The residents are confined to their rooms and yes in the Alzheimer’s units that’s difficult to respect,” said Tatiana Dubuc, a nursing assistant in Le Havre in northern France and also a local representative for the CGT trade union. “But all the while that the doctors don’t give a precise medical prescription to do it, we will not restrain, that’s not our policy at all.”

In Aude in the south-west of France, Louise pointed out : “Giving medication to patients or tying them to a chair or to a bed, that’s what was done in hospitals of old, and for the last 20 years the sector has sought to pursue a philosophy in the other direction, producing lots of charters of good treatment. So this is not only a rejection of that but a huge leap backwards.”

The nagging feeling in the care home sector that they are, as this crisis has once again shown, the Cinderella service, is quite widespread. Last week the daughter of one resident of a care home at Viroflay, south-west of Paris, where there have already been two deaths and ten others are under close monitoring, was once more seeking to get her hands on protective equipment. This followed an appeal by the home for families to find masks, gowns, protective foot covers and hydroalcoholic hand gel. Though the home has been closed to visitors since March 6th the virus is still circulating there. “My mother is 92, it’s awful,” said her daughter, who is so angry about the lack of equipment that she has written to President Emmanuel Macron about it.

Carine, the nurse at a care home near Paris, said she is “disgusted” by the current situation. “It has taken a cataclysmic health crisis for people to realise the situation which we’ve been in for years,” she said. On Thursday April 2^nd the country’s leading health official, the director-general of health Jérôme Salomon, published for the first time the data from care homes since the start of the crisis, though this information is still incomplete. It showed that there had been 14,638 “confirmed or possible” cases of Covid-19 and 884 deaths in nursing homes since March 1st. By Sunday April 5th that number had reached 2,189.

Mathilde Goanec

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