Coronavirus: The psychological impact of the pandemic on patients, families and caregivers

Please find below the recording and the transcript from the The International Academy for Clinical Haematology (IACH) webinar, which took place on April, 2020 with Prof. Mohamad Mohty and Dr. Yolande Arnaul.

The webinar focused on the psychological aspects of the pandemic.

Dr Arnault is a clinical psychologist and practitioner. She is part of the Department of Clinical Psychology at the Paoli-Calmettes Institute. Mohamad Mohty is Professor of Haematology and head of the Haematology and Cellular Therapy Department at the Saint-Antoine Hospital.

The webinar was in French, but English subtitles are available. Please find the English transcript below.

Coronavirus: "A tsunami which we were absolutely not prepared for"

[Mohty] Welcome to Yolande, thank you so much for agreeing to participate in this webinar of the International Academy for Clinical Hematology. Thank you. I structured this discussion this evening around three main questions.

Before we talk about the impact of this epidemic or pandemic on our patients, on their families and on medical staff, I would like you to talk a little bit about the general impact that you observed in terms of preparation and mobilization.

Many people have said that we are in a state of war, others have said it's more of a test of humanity. Personally, I think it's a mixture of a lot of things. What is your opinion, your observation now, with a few weeks of hindsight into this epidemic?

[Arnault] So first of all, thank you for welcoming me to this session, I am very honoured, and maybe we can, in any case, what I can say right now is that I think we need to stay humble about everything that is happening around us. In the face of this tsunami which we were absolutely not prepared for. Nobody was.

There is different information and news about confinement extensions, day after day, week after week, which really creates an atmosphere of uncertainty which is generating anxiety and even anguish in many of us, whether we're caregivers, or the sick.

So it's very, very difficult, there is a real challenge around this pandemic, and this situation in which we are immersed. It is a real challenge because, at once, we need to take all the protective measures that everyone knows: containment, barriers, etc etc, changes in our procedures for caring for our patients in hospitals, but also, as you said, we are at war.

Yes, we are at war, but we also must not forget all the human aspects; even psychological, that this health crisis is causing for everyone.

So it's a real challenge to make sure that we can come out of this crisis almost unscathed, because I think people are going to be really impacted by this, even afterwards.

"One should protect one's self, respect the restrictions, everything that's being imposed on us, confinement, renunciation of our lifestyles, the overworking of caregivers in hospitals, while staying attentive to the simply human aspect of relationships. Relationships made online and through all these apps which fortunately exist in our time."

I dare not even imagine what this pandemic would have been, I don't know, 30 or 40 years ago when all that didn't exist. So it's a real challenge for us in all of that.

[Mohty] So when we discussed it a bit by phone - since naturally due to confinement we can only discuss by phone or online - several times you used the terms 'new practices' of preparation; you just mentioned the challenges of things that are completely new.

I'm perhaps reluctant to use strong terms, but are we at the stage already where we have to mourn our past lifestyles? Or are we are not there yet?

[Arnault] I think we will have to mourn our past modalities of life. That's for sure. I think we will have to learn to create new practices, new forms of relationships...for example in hospitals, tele-consultations are naturally multiplying because we try to avoid people coming to the hospital. I believe that these are practices which will stay.

[Mohty] So to my question, you raise the tele-consultation, and in fact today we realize that we can do more than 80 or 90% of our consultations by tele-consultation, there is no need to move the sick.

In your opinion, in any case in terms of a purely technical and medical plan, is that a good or a bad development?

[Arnault] I want to say both. It's a good evolution because that can allow, I don't know, a speed of exchanges and decisions. But it's also worse because patients - our patients – have the need to be in direct contact with doctors who they see as their referring doctor.

Tele-consultation, while allowing speed, a certain efficiency, is also a kind of dehumanization of relationships. And that I think is really important to keep in mind.

I think it would be extremely harmful if we rush en masse, for example, into tele-consultation. Once again, patients have a real need to have a real relationship with their doctor. And I know that can be time consuming. I know that a doctor can't spend an entire hour with a patient etc etc. But he still needs real relationship.

For the patient it's a form of support, a benchmark, a form of insurance, of reassurance. The patients we follow in onco-hematology, who are extremely fragile, sick, in confinement which they're already familiar with by the way. Imagine we could only do - I don't think that's the goal - but that we could only do tele-consultations, that would be really damaging.

[Mohty] So we have already started talking about the sick, about their families, about the impact. I imagine that for several weeks many of the sick, those around them, their families, but also I imagine nurses, caregivers, other hospital staff at all levels - because it's an extremely robust chain and you need to ensure continuity of care according to the rules of the art.

The impact on patients: "The usual anxiety is amplified by COVID"

So the patients or people who reach out to you, whether they are professional or family or patients, what are they telling you? What questions are they asking you? What are the terms or phrases that come up often?

[Arnault] So what is certain given the flow of information, because we all have this over-saturation of information on covid; we turn on the radios, we hear about covid, we turn on the TV, we hear about covid. Even between us, we speak about covid. In families, when we work out, everyone is talking about covid. So we're really submerged by covid, by this sanitary crisis. So of course patients are talking about it.

Many patients tell me they've stopped watching the news because it gives them anxiety.

And suddenly what gives them anxiety when they're hospitalized is the prospect of release, for example. You know already when we decide on the release of a patient who was hospitalized for weeks after a transplant, after a leukaemia treatment, and to all of a sudden find themselves at home - these patients sometimes have the feeling of fear, of abandonment. And so now it's even more amplified by covid. If I get out – will I get infected? Do I risk going on resuscitation? I have a patient who told me 'I want to stay,' 'I want to stay here where I'm taken care of. Here there is a team of 24 people around the clock around me. At home what will become of me?'

"And so then there is a process to go through with them, to try and calm their anxieties, obviously, and also to bring them back to the reality that a patient, at some point if he can leave hospital, that's something rather positive, and he must leave. He shouldn't stay confined to the units, when given the opportunity to go home."

[Mohty] I agree, and we share the same experience. We actually saw reluctant patients who tell themselves 'I'm in a cocoon at the hospital, in a protected unit'.

But we also have the case, I got a phone call from a patient who politely apologized because he does not want to come back for his consolidation therapy for acute leukemia, because as he explained to me in a rational manner, it's heavy chemotherapy, it will weaken his immune system, and that maybe we could give ourselves a bit of time before launching into this heavy chemotherapy. And it's true I was a bit baffled with the idea as you can have a loss of luck if you don't do timely chemotherapy for acute leukemia. At the same time, his explanation was very rational and justified, because these are patients effectively at high risk for covid-19.

[Arnault] It's true that it's legitimate but that's what we have also noted in our institute: the number of patients who no longer come to appointments. Appointments for scans that are cancelled, even hospitalizations cancelled because patients are scared of coming to the hospital, because we've also always told them that the hospital is also a place of infections. To protect yourself when you come to the hospital, wear a mask etc. Things that they do regularly and that are standard in their pathology and that we've imposed upon them.

And so many patients hesitate in maintaining the continuity of treatments. And that is a danger.

I think we must communicate a lot more about that, and by the way we are starting to hear it a bit everywhere. At first everything was guided towards covid, the necessity of confinement, of keeping distance, etc. And suddenly patients holed up at home and didn't leave, which can be really damaging for patients. Because I think that when someone has acute leukemia, and has to have induction therapy, they must come to the hospital. It's not at home that it's going to be treated. So it's very serious.

[Mohty] So the patient I spoke to you about, if I had passed you the phone what would you have told him? To convince him in one way or another.

[Arnault] I would have told him that of course I understand his anxiety, that of course in the current situation these are legitimate thoughts and concerns, but that we also must know what the priorities are. It's very important to calm anxieties, but also to bring patients and those accompanying them into the reality of things. Meaning, calming a patient's anxieties doesn't necessarily mean doing what he wants.

It's also, I want to say – I'm a bit like this - the one who wakes them up, to say: attention. Your life is at stake. And in the balance of risk and reward – of should I go to the hospital or stay at home- one must really think about it. And that's something that really needs to be passed on to the patient. That's what I would have said. Because I am a bit direct. But I think sometimes it's important to be direct with patients.

The impact on caregivers: "Being a hero is something very heavy to carry"

[Mohty] But I think that's an important philosophy,I'm not a psychologist, but based on purely medical reasoning, for me it's important that the fear of covid-19 doesn't cause terrible damage to the natural progression of haematological illnesses, in terms of relapse or recurrence and the like. So that's the sick patients, but I imagine that the caregivers solicit your advice also.

What do they say, what do they for example, I won't hide from you, I regularly have caregivers who I pass in the hallways, and the biggest fear they have is bringing the virus home to their families and kids. What do they tell you?

[Arnault] The same thing. The caregivers... I first want to salute them. These are incredible teams. All of them, whatever their place or role they're taking care of things, there constantly in service, they relay between them, if one is tired the other takes over, there's really an absolutely incredible solidarity from the caregivers, among them and the teams.

[Mohty] I completely agree with you and I wish to underline also that it's true, in French we have these semantics where we talk about caregivers, and the reflex is to say caregivers are basically the nurse, the doctor, the assistant... but in my mind, and I hope you share this, caregivers are actually all the players in the hospital. That includes the secretaries, the administrative staff which ensure consistent functioning, that includes the caretaker at the entrance to the hospital who plays a remarkable role in the regulation of entrances and exits of personnel, the cleaning staff, logistics staff, the people in the kitchen who make sure the staff has meals, the staff at the nursery, it really includes everyone.

[Arnault]. Everyone. Technical staff. Everyone, everyone. And it's sure that all these people you mentioned are actually on the front line, and they are overused in this unique period of pandemic. They continue to carry out their missions with a lot of courage and selflessness in conditions which can be sometimes...we haven't seen it in our centres… but conditions I saw on TV, and it absolutely shocked me; these field hospitals in the countryside, hastily mounted, these centres for resuscitation overflowing with patients.

They're also working in very particular conditions. In our departments of oncology, haematology and transplant services we were already very prepared for wearing masks etc, but now it's more so, even if we're prepared for it, not for the pandemic but for the protection of the sick from infections, it's really taking on the look of a bunker.

It's really also the barring of families from coming. There are no more families in the departments, now, there are only caregivers, only us. Whether it be nurses, nurses aides, doctors, the precautionary measures are multiplied, more than before, and repeated one thousand times in a day.

At the same time we - the doctors, nurses, aides - continue to provide treatments, but also to deal with, in a certain way, patients in terms of their morale. To support their psychological state since they're cut off from the people close to them. To be there to greet and contain the fears that are of course multiplied, the anxieties of patients.

So they are really used, overused even, and I'd like to add for the caregivers – of course it's very beautiful, this mobilization at 8pm every evening to show thanks, not only for caregivers but also for all the people who work for the community, the supermarket cashiers, the workers who continue to supply us, these people are certainly heroes.

But I want to say that being a hero is something very heavy to carry. Meaning when we're heroes, we don't complain, if we have fears or we're not well, we shouldn't show it, because we are heroes. And I think that long term that risks having an impact, you know what I mean?

I think really we must be very attentive, we will need to be extremely attentive to the impact in the aftermath of this period, because people are becoming exhausted, they're exhausted but they continue anyway, because they're invested in a mission that's even bigger than usual, than taking care of people and protecting them.

The future after COVID: "We advance day after day, week after week"

[Mohty] Actually you're giving me a good transition to the last part of this interview that I summarised on this slide: now, what is next? What's next? Because colleagues who are virologists, epidemiologists specialised in public health, and we want to believe them that an epidemic ends eventually, and gladly so because otherwise it's catastrophic, and once all of this stops we will try to find a different rhythm from this state of emergency that you describe, from this constant mobilisation, where we don't have the right to complain, we just do the job, as said.

What's next, what do you anticipate we have to prepare, or not? Or eventually will everything go back into place easily?

[Arnault] It's complicated because we know when this began, and we don't yet know when it will end. You know it's a bit like our sick patients. They know when the illness began, but they don't know when it's going to end. We are really immersed in this uncertainty it's hard to project the future, like our patients. Like I said the beginning of my comments, we're advancing without knowing what's ahead.

We advance day after day, week after week. But when it comes to this health crisis I think we will have to really be very attentive to the impact afterwards, as I said before. That's to say that some people may be grappling with what's called post-traumatic stress. Having given so much, having held on so long. A bit like our patients who during their illness, advance from chemo to chemo, step by step. And who after, I want to say, allow themselves to finally let go, and break down. There's a level of breakdown.

And the cases of post-traumatic stress are at risk of multiplying. So it will be necessary to identify these patients, and the risk for certain patients who are more fragile that others. We are not equal when it comes to this, our fragilities, psychologies, life histories. So we need to really really be attentive to these potentially traumatising elements of this crisis, because many people will come out completely fragile on the psychological side, family side, but also the economic. Because there is also this aspect of things. We talk about recession, before it was just whispers, and now is louder when we hear news. Not only do we worry about the illness, but also for our economic future. How will I pay my credit card? Will I still have work? etc etc. So I think the psychologists, social workers are going to have their work cut out for them.

[Mohty] So these are the negative aspects, it's true, I believe this is a real disaster on different levels.

But I still want to be optimistic, is there something good that we can extract from this episode?

[Arnault] Already at the individual level, I said earlier there are people who are extremely fragile, and then there are people who have this capacity for - it's a term that everyone now knows of – resilience.

This capacity, you know this ability... in positive psychology they would talk about post-traumatic growth, it's another term that refers to resilience, the same concept. Meaning the same concept of this ability that some people have to get up from a situation that's difficult, impactful, traumatising.

The ability of certain people to create, to recreate new functions, to tap into resources in themselves, but also knowing how to use outside help to rebuild. And that really I believe in. The number of patients who are capable of that.Or if they're not immediately capable of it, psychologists, caregivers etc are there to help them move towards this. That's on an individual level.

On a global level, of course this crisis will bring us, I hope, to think of the world a little bit differently. To know how to prioritise what is important for us. Is what's important to us accumulating things in our homes? Or can we be satisfied with less, but better?

And I think confinement, this challenge we're all sharing, will make us think about that, and maybe we'll envision the post-covid period differently.

I wholeheartedly hope it happens like this and that we can create new practices, new solidarities, because we really need it.

This period which is eminently agonising and uncertain, in terms of duration, in terms of temporality. I believe that consciences are going to wake up a bit, I believe that. I think maybe we'll tackle things a bit differently and that we will not be taken over by our life before so easily, I think. I believe. We have to believe it.

[Mohty] One last word Yolande of conclusions for everyone watching us today, whether they be family, caregivers, doctors, industry players. Because the IACH has an extremely large and varied audience in over 100 different countries around the world.

If you must give us a few keywords, how can they get through this ordeal?

Arnaud: "Have confidence. In humanity, in humans. Take care of yourself, that's something that so obvious. So clear. And to stay in touch with each other, despite confinement, despite all restrictions which are our reality."

"Continue to share, to exchange, which is what we're doing right know. I find that absolutely magnificent. All these initiatives that allow us even in confinement, to share."

[Mohty] Really, thank you very much. I learned many things, and I really hope we're going draw all the positive aspects of this ordeal, to build - it may be utopian - but a better world.

Thanks again Yolande Arnaud for your words, for everything you been doing for so many years with patients with serious malignant hemopathies.

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