Jan Steyaert, Jurn Verschraegen, Leentje De Wachter

The original of this text was published 11^th of December 2020 in Flemish, as:

Steyaert, J., Verschraegen, J., & De Wachter, L. (2020). Vaccinatiestrategie in woonzorgcentra: ‘Krijgt vader een prik tegen corona?’. Sociaal.Net, https://sociaal.net/achtergrond/vaccinatiestrategie-covid-woonzorgcentra-dementie/

In Belgium, within a few weeks the corona vaccination will start, with priority for residents and staff of residential care centres. This gives perspective for the care of the older people and their quality of life, which has been severely affected by corona. But what if, for example, a resident with dementia decides that he does not want this vaccination? Staff of the Flanders Expertise Centre on Dementia look ahead to this issue.

Shall we have father vaccinated?

Emiel is 92 years old, lives in a residential care centre, has dementia and is mentally incapacitated. His partner has died. They were never vaccinated against the flu and were often looking for solutions in natural medicine.

‘Who is for, who is against?’

Emiel has three children: Veerle, Peter and Karel. They are struggling with the question of whether their father should be vaccinated. They turn to the Flemish Dementia Expertise Centre for advice. To outline their situation, they show us their WhatsApp conversation at the beginning of December:

For privacy reasons, these are not the real names of the people involved.

• Peter: We need to think about having father vaccinated against Covid-19. What is your opinion? Who is for, who is against?
• Veerle: Rather against. But yes, they won’t be able to laugh at that in the residential care centre. But I can’t laugh either with their strict visitor policy. Why does the regular visitor have to be the same for months?
• Karel: I am in favour. This is different from the flu vaccine. It feels like a moral obligation to the institution. The burden on staff is very heavy and vaccinating helps everyone. If we do not have father vaccinated and he is infected by corona, I would be very sorry. I also count the social cost of care. I think father and mother would have been for vaccination in this situation.
• Veerle: I don’t think so.
• Karel: I would have made an effort to persuade them to do it.
• Peter: It is clear that father will suffer if he is not vaccinated. He will have to go into isolation more quickly and the visiting arrangements can be made less flexible. The possible disadvantages of vaccination – given father’s age – will not play a role in the longer term. So I am slightly in favour of vaccination, but not from a medical point of view.
• Karel: I do not want to say from a medical point of view, but from a moral point of view. Mother would have asked for our opinion, I think.
• Veerle: I think the residential care centre is going to demand that father be vaccinated. I hate dictatorship! I suspect that the doctor will not leave much room either. He used to be in favour of flu vaccination, but he respected the opinion of our parents.
• Karel: Veerle, you love freedom, as I do, but that is exactly what this virus is taking away from us.
• Peter: I do not think the doctor’s opinion is that important. Doctors can never legally overrule the opinion of the family, confidant, administrator. But it is good to already have a shared view on behalf of the family.
• Karel: Yet we are looking at national legislation to see if we can make it compulsory.
• Peter: I am following this discussion with particular attention! The legal specialists agree that it cannot be made compulsory from a legal point of view. What is more, it would have to take a long legal route to the European Court, and we do not have that time. Vaccination of at least 70% of the population is sufficient.
• Karel: If you are vaccinated, you also protect some weak people who are not allowed to be vaccinated, for example people undergoing treatment for cancer. Let’s finish here. Veerle, can you find yourself in the greatest tenor, i.e. vaccination?
• Veerle: All right then

The question of these children: ‘Did we make the right decision, or did we overlook something? As is often the case, the answer is not a simple ‘yes’ or ‘no’. It is important to formulate a nuanced answer based on social and legal considerations.

2021 will be different

We are about to close a hellish year, a year in which corona attacked us unexpectedly and violently. Personally with a few weeks in hospital, but of course mainly as a society, also in terms of care for older people, and care for people living with dementia.

‘In addition to fighting and reducing infections and caring for those who became ill, we now have vaccines.’

We learned lessons [1] from the first wave. But unfortunately, we could not prevent a second wave. Fortunately, 2021 announces itself with the prospect on some well-functioning vaccines. In addition to fighting and reducing infections and caring for those who became ill, we now have vaccines.

Strategy and ethics

A well thought-out vaccination strategy will be crucial. The Belgian authorities presented their first version of a vaccination strategy on 3 December 2020.

Producing and distributing vaccines will be a major logistical challenge. But there are also ethical questions. In the short term, there will be scarcity. Not everyone can be vaccinated immediately. Who will get their turn first? And what do we do about people who refuse the vaccine? Do we respect individual freedom of choice, as set out, among other things, in the Belgian Patients’ Rights Act, or is it ‘overruled’ because vaccines only work once the majority of the population has been vaccinated?

No stranger

Although a corona vaccine is new, as a society we are familiar with vaccines. From the eighteenth century onwards they helped in the fight against smallpox, rabies, poliomyelitis, measles and whooping cough. The British Medical Journal rightly described vaccination as one of the most important milestones in the growth of health care.

‘Freedom of choice puts pressure on group immunity.’

Despite the medical successes of vaccination and much evidence of its efficacy, there is also resistance, including for religious reasons.

Make vaccine mandatory, or strongly advised?

In Belgium, only the vaccine against poliomyelitis is compulsory before the age of eighteen months. Other vaccines are optional but strongly recommended by, for example, a general practitioner or the Flemish Child and Family organisation. This gives room for individual choices. But this freedom of choice puts pressure on group immunity.

If there is freedom of choice, a large majority opts for vaccination. For example, the measles vaccine is not compulsory, but vaccination coverage is over 95%. In that context, the Belgian Advisory Committee on Bioethics also advised that vaccinations should only be made compulsory in exceptional cases, but that we should continue to work on high vaccination coverage in other ways.

And in Flemish nursing homes?

People with dementia, especially if they live in a residential care centre, are one of the top priorities in the vaccination strategy against corona. This is a special feature of the advisory report of the High Health Council last summer (people over 65) and was confirmed at the beginning of December by Flemish Minister of Welfare Wouter Beke. Rightly so: more than half of the corona deaths occurred in this group.

‘In residential care centres, the annual flu vaccination runs very well.’

In residential care centres, the annual flu vaccination runs very well. Only a very limited number of residents do not wish to be vaccinated. If this trend also applies to the corona vaccine, we easily achieve the necessary vaccination coverage and group immunity is created.

But what if residents refuse corona vaccination, verbally or non-verbally? For reasons of principle, because they do not understand, or simply because they are afraid of a syringe? And what if family members and relatives resist?

Dementia and mental capacity

For residents with dementia, a number of important points of attention are added.

One of the characteristics of dementia is a predictable decline in mental capacity. In order to fully respect the basic principles of the Patients’ Rights Act, it is important to start advance care planning as soon as possible in the event of suspicion or diagnosis of dementia and to regularly update its content. On the initiative of the Federation Palliative Care Flanders and Flanders Expertise Centre on Dementia, a guideline on this subject was published in 2016.

No need to start from scratch

Through early care planning, someone with dementia can express their preferences for medical treatment near end of life. In view of the progressive nature of dementia, it is strongly recommended to start these conversations at the first signs and not to wait for a diagnosis or moving to a residential care centre, for example.

‘Here, individual choices also have collective consequences.’

This early care planning can be done verbally or in writing. In the latter case, we are talking about advance directives.

Unfortunately, in the existing advance directives, few statements will have been made about vaccination, as we largely situate this in the early years of life. Nobody expected that we would suddenly have to vaccinate an entire population, young and old, against a new virus.

What is more, most of the statements in advance directives relate to individual choices and individual consequences, for example, whether or not there will still be a transfer to a hospital. But when it comes to combating infections, individual choices also have collective consequences.

When mentally capable

Nevertheless, we can still use the logic of advance care planning in dementia as a starting point. The basic principle remains that, when making choices, the person with dementia is informed and heard as much as possible. In addition, one must take into account the dynamic nature of mental capacity: one day it is easier to make decisions than the next.

‘The person with dementia must be heard as much as possible.’

On the basis of tailor-made information about corona, the coronary measures and the vaccine, the person with dementia can then make his or her choice whether or not to be vaccinated. If there is still mental capacity, their choice must be respected. The vaccine will not be compulsory for the general population, including high-risk groups such as people with dementia.

What if mentally incapable?

In the case of incapacity to act, the person with dementia must be given maximum information and be involved in the decision process. In addition, previous negative statements of will should be looked at and listened to, to the extent that they formulate guiding choices relevant to the current unusual situation.

‘The vaccine will not be compulsory for the general population, including high-risk groups such as people with dementia.’

It is also possible to look at this person’s recent past. Did they participate in the flu vaccination every year? Had they always indicated that they wanted to receive all the necessary medical care?

What if there is mental incapacity and there are no clear previously formulated choices? In that case, in accordance with the Belgian Patients’ Rights Act, it must be ascertained whether the person, when he was legally mental capable, appointed a legal representative, gave someone a power of attorney to make care decisions or whether a court appointed a trustee. They can then decide whether or not to vaccinate the person with dementia. If there is both a legal representative and someone with a healthcare authorisation, the former will take precedence according to Belgian law.

Once again, each of them must be given the necessary information about the situation and the risks. Moreover, these risks do not only relate to possible vaccine risks, but also to loss of quality of life due to, for example, less authorised visits or less room for movement. An observation that the children of Emiel also made.

The cascade

Over the next few months, certainly in residential care centres, we will see many situations in which people with dementia are mentally incapacitated, have no or unclear advance care planning and have not appointed a legal representative.

In that case, the cascade principle will come into effect. First, the spouse or cohabiting partner comes into the picture, followed by children of full age, the parents who are still alive and capable of expressing their will, and adult siblings in the last instance.

‘Vaccination readiness of staff, volunteers and visitors is also crucial.’

If, after this cascade, no one is to be found who can make decisions for the mentally incapacitated person with dementia, then it is up to the care team. The general practitioner and the coordinating and advisory doctor of the residential care centre have an important voice here. They take stock, both from the perspective of the person with dementia and from that of the residential care home.

Difficult considerations

From the point of view of the ethical principles of ‘not harming’ and ‘doing well’, this involves weighing up the pros and cons of the vaccine. This is a complex task.

Because we are talking about people with dementia, care staff must take into account both the past and the present person. There is a tool to make this assessment here: the guideline on early care planning in dementia refers to the ‘Framework for Weighing Previously Expressed Preferences vs. Best Interests’.[2]   

Individual in collective housing

Moreover, in this consideration not only the person is in the focus, but also their environment.

‘Autonomy in security’ is one of the six foundations of good dementia care, as described in our frame of reference. Given the current situation, full attention must also be paid to a care environment that is safe for all residents, employees, volunteers and visitors.

‘Residential care centres are collective forms of housing.’

After all, residential care centres are collective forms of housing. If you want to win the battle against the coronavirus here with vaccines, you need broad vaccination. This also applies to staff, volunteers and visitors. They are the bridge between the residential care centre and society. In order to prevent them from carrying the virus back and forth, their willingness to be vaccinated is also crucial.

Staff and volunteers

As far as employees are concerned, the advice of the Belgian Advisory Committee on Bioethics is guiding: strive for maximum vaccination through correct and nuanced information, maximum availability and affordability of the vaccine.

In a sector that was hit particularly hard in both the first and second corona waves, a heavy responsibility rests on the shoulders of healthcare personnel. They must help to ensure the highest possible vaccination coverage. Whether and under what circumstances health personnel can be compulsorily vaccinated is a labour law debate. At present, there is no obligation for health personnel to be vaccinated.

Think of the deontological or ethical codes of professional groups such as Ethical Code for Occupational Therapists (2018) and Deontological Code for Belgian Nurses (2015). Although there was no corona pandemic at the time these codes were drawn up, they are regarded as an important moral and deontological compass.

‘A heavy responsibility rests on the shoulders of health personnel.’

Volunteers are also an essential factor in the quality of life, housing and care in residential care centres. The same responsibility rests on their shoulders, but of course only when they are given the opportunity to be vaccinated. After all, for the time being only residents and care personnel have been included as priority target groups.

Visitors

As far as visitors are concerned, the question currently does not arise because they do not belong to the priority group for vaccination. It will be months before it is the turn of the general population.

Only then will it be possible to follow the same strategy as for healthcare personnel: calling for maximum vaccination coverage from the point of view of social responsibility. Here, too, a great responsibility rests on visitors, who, like staff and volunteers, are a bridge between residential care centres and the outside world. They can bring the virus into the residential care centre, but they can just as easily take it with them into their own world.

“Does father get a shot against corona?”

Too many tragedies have happened this year. Over the next few months, we must strive for maximum vaccination in our residential care centres, both of residents and staff. The next phase will be followed by volunteers and visitors, as soon as the vaccines are also available for them. Since these are new vaccines, it is important that sufficient, tailor-made information is provided. Government and umbrella organisations can take the lead in this, so that not every facility has to do this individually.

Most vaccines are not compulsory in Belgium, including the corona vaccine. Any choice not to be vaccinated must be respected, in accordance with the law on patients’ rights. There are also clear advice and guidelines here for people living with dementia.

However, just like the virus itself, the vaccination strategy is not static. In the next few months, more information will become available on the vaccines and on vaccinations in residential care centres, including from international experiences where largely the same vaccination priorities have been taken. These choices and expertise will also guide other sectors, such as residential care for the disabled or mental health care.

This text was written in the first weeks of December 2020. It is subject to developments concerning corona, corona measures and available vaccines.

Through ‘question and answer’ the Flemish television provides an overview of recent information on the corona vaccines.

With thanks to the family members who sent us the case and the colleagues who gave feedback on previous working versions of this text. In alphabetical order: Christine Aspeele, Olivier Constant, Charlotte Cool, Hilde Delameillieure; Ann Desmet, Robbie Dumoulin, Yvonne Denier, Geert Froyen, Chris Gastmans, Marc Holvoet, Erik Langerock, Ruth Piers, Joris Rombaut, Paul Vanden Berghe, Lieve Van den Block, Nele Van Den Noortgate, Karolien Verschueren.

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 [1]

Reference to: Steyaert, J., De Wachter, L., & Dely, H. (2020). Dementiezorg in tijden van corona. Antwerpen: Expertisecentrum Dementie Vlaanderen ISBN 978 94 6267 266 6 Full text available (in Flemish) at https://www.dementie.be/wp-content/uploads/2020/07/20200715_DementiezorgInTijdenVanCoronaEDV20.pdf

 [2]

Reference to Reference to Smith, A., Lo, B., & Sudore, R. (2013). When previously expressed wishes conflict with best interests. JAMA Internal Medicine, 173(13), 1241-1245.