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The pandemic changed death rituals and left grieving families without a sense of closure

A scholar conducted over 70 hours of interviews with people involved in the medical and funerary professions to understand the impact of changes in death rituals during the pandemic.

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A family takes part in shiva, a traditional Jewish time of mourning, on Zoom. Andrew Lichtenstein/Corbis via Getty Images

The unexpected death of a friend and colleague to COVID-19 in January 2021 led me to start researching how American death rituals were transforming during the pandemic. My friend was Hindu, and while watching his funeral on Zoom, I witnessed the significant transformations that had to be made to the traditional rituals to accommodate COVID-19 safety guidelines.

In the spring and summer of 2021, I conducted over 70 hours of oral history interviews with people involved in the medical and funerary professions, as well as grieving families and those who worked closely with them, including grief counselors, hospice workers and even spirit mediums.

As a historian of religion interested in how different cultures make sense of death, I noticed what appeared to be a momentous cultural shift happening in America in terms of death rituals as over 850,000 Americans died from COVID-19. During this period, funerary customs dramatically shifted and, in many cases, failed to bring any comfort to grieving friends and families.

What changed in funerary rituals

In my conversations, funerary professionals described the initial chaos as funeral size had to be dramatically curtailed, sometimes with only one to two hours’ notice. Eventually, many began to innovate with new technologies that allowed them to hold virtual funerals.

Richard Davis of the Cook-Walden Funeral Home in Pflugerville, Texas, described how early in the pandemic he utilized radio technology for grieving families who could be in their cars in the parking lot, tune the radio to a specific station and listen to the person giving the eulogy inside the funeral home.

Some funerary directors partnered with wedding videographers whose business was suddenly upended because most weddings were canceled or delayed. These videographers found that the high-quality equipment used to produce wedding videos could as easily be put to use broadcasting a Zoom funeral.

I also spoke with three spirit mediums who all described a marked increase in clients seeking postlife words from loved ones who died on ventilators. They described how anguished families sought to know that their loved one had not died alone and did not blame them for their death. One medium in particular also noted that the pandemic saw an increase in family members seeking to connect with those who had died of drug overdoses brought on by the stress of the pandemic.

The end-of-life work of religious leaders was transformed as well: Catholic and Episcopal last rites were performed via FaceTime, sometimes with consecrated oil being carefully administered by a Q-tip.

The Jewish tradition of sitting with a body before burial – usually performed by volunteers in shifts at the funeral home – became an at-home experience. Although the volunteers, called shomer or shomeret in Hebrew, could not sit next to the body as usual, they worked on the honor system to ensure that someone was always praying and keeping the deceased in their thoughts, even while far away.

Muslim leaders described working with local health agencies to obtain Personal Protective Equipment (PPE) and specialized training for those performing the full-body washing of a corpse known as ghusl in Arabic.

Virtual commemorations

These adaptations reflect a long history of transformations for the American funeral.

In the 17th and 18th centuries, most Americans generally prepared the body themselves and hosted the funeral at home. However, by the 19th century, more Americans were dying in hospitals as a result of the availability of medical care and because the corpse was believed to be carrying disease. This spurred the development of the funeral home. Individual funeral homes often personalize their offerings to the needs of local cultural or religious communities.

Funeral homes became most popular after embalming – a form of preservation performed by mortuary specialists – became the norm after the Civil War. The war spurred a crisis to preserve soldiers’ bodies while they made the long trip home, and embalmers would sometimes follow the military troops to accept payment in advance for the procedure.

Today, the funeral industry has grown to a whopping US$20 billion, and embalming remains the predominant treatment for the body after death.

With the rise of the internet, funerals are once more undergoing rapid transformations. Scholar of death and dying Candi Cann has shown how the internet gives rise to new forms of social remembrance after death. These can include mourners going to Facebook or Instagram pages on the anniversary of the death and leaving a message about how much they miss the deceased. Online marketplaces allow for the purchase of individualized mourning paraphernalia like T-shirts or bumper stickers, and public memorials at the site of death.

Photographs of people stacked one behind another in a park.
People tried to memorialize their loved one in different ways. Images of COVID-19 victims from Detroit are displayed in a drive-by memorial at Belle Isle State Park. Aaron J. Thornton/Getty Images

Such tools thrived during the pandemic. During my research, several individuals who lost loved ones explained creating memorial items, including stickers and face masks commemorating a lost loved one, as a way to encourage others to wear masks. Virtual online communities of COVID-19 mourners adopted the yellow heart as a public expression of loss of a loved one to the pandemic in the U.S. and Europe.

Unprocessed grief

Funerals and other rituals surrounding death are important to begin the grieving process. Research has found that performing rituals has a major role in alleviating grief through increasing feelings of control and transitioning mourners to accepting their loss. Funerals can provide important structures for families to say goodbye that have been correlated with better grief outcomes.

J.Z. Smith, one of the most influential theorists of religion in recent years, said that “ritual relies for its power on the fact that it is concerned with quite ordinary activities placed within an extraordinary setting.” In other words, ritual takes elements from the ordinary world – words, gestures, symbols, etc. – and imbues them with extraordinary meaning.

We might cry or wear black clothing every day for any number of reasons, but in funeral rituals these activities have special significance and bring a sense of closure. It is this repurposing of ordinary things that makes rituals so effective.

Psychological studies too have shown that the greater the difference between what happens in the ritual and “normal” life, the more effective it is for individuals.

But in my conversations with those who lost loved ones to COVID-19, it became apparent that for many, the transformations in funerals and rituals of mourning failed to help them in dealing with their grief. As one individual explained to me, “I knew my grandmother would pass away sometime, but I always imagined I would be there; I never imagined I would be watching it virtually on Facebook. It felt like a parody of a funeral.”

Another interviewee explained how the isolation necessary in the pandemic era fundamentally undermined the comfort these rituals could provide: “Because my family has been so terrified of COVID, we have not been able to gather together to process my mother’s death. That has been really hard for me culturally – especially in Indigenous families, you grieve together.”

Reverend Richard R. Andre, C.S.P. of St. Austin Catholic Parish in Austin, Texas, echoed these thoughts as he described assisting those losing loved ones in his own spiritual community: “The funeral helps you to start a process of closure. But without the funerals they envisioned, people are just getting stuck and are unable to grieve.”

The COVID-19 pandemic has forced us to consider how rituals can lose their extraordinary power when our sense of “normal” is shattered and remains shattered for years. As religion theorist J.Z. Smith noted, rituals work by framing the ordinary as extraordinary. But if nothing feels normal, then nothing can feel extraordinary either.

[The most interesting religion stories from three major news organizations. Get This Week in Religion.]

Natasha Mikles does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.

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Joined up thinking needed for joined up data plans

Joined up data could transform the pharmaceutical industry and help create a healthier Europe for decades to come
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Joined up data could transform the pharmaceutical industry and help create a healthier Europe for decades to come – but the route to change is far from smooth sailing.

Without careful consideration and full stakeholder input, the EU’s plans for a connected data system could end up being counterproductive.

That’s the view of the European Federation of Pharmaceutical Industries and Associations (EFPIA), which has published a list of recommendations aimed at helping the sector get the most of out of the data it holds.

“If the European Health Data Space (EHDS) and the rules surrounding access to the data are not carefully thought through, with the involvement of all stakeholders, there could be unintended consequences that limit the utility of the data for developing innovative medicines,” said the organisation.

Huge potential

The EFPIA Recommendations on a Connected Data System in Europe, published at the end of April, welcomes the proposals, which are part of the European Strategy for Data, to create common data spaces.

Said the authors: “A connected health data ecosystem has the potential to empower more effective and efficient research and development of new treatments and diagnostics. It would also ensure better planning and delivery of patient-centred care through personalised medicine.

“This, combined with value-based healthcare, can result in better allocation of resources and more sustainable healthcare systems.”

The value of this approach, which places real-world data in the hands of the right people at the right time, was demonstrated in abundance over the last few years, they went on.

It was, they explained, stakeholders from across the healthcare ecosystem coming together to share insights, whether from clinic, research, or genomics, that changed the course of the COVID-19 pandemic.

Applying the same ethos to healthcare in general, then, could give the drug development sector all the information it needs to contribute to a fitter, healthier Europe.

“For the research-based industry, access to data is critical at every step. From accelerating drug discovery to understanding patients’ behaviours and the outcome of treatment, the availability of data is essential to testing hypotheses, identifying trends and assessing proposed treatments,” they said, adding that improved access to, and transmission of, health data could “transform the pharmaceutical industry”.

“A connected health data ecosystem has the potential to empower more effective and efficient research and development of new treatments and diagnostics. It would also ensure better planning and delivery of patient-centred care through personalised medicine.”

 

Significant challenges

While EHDS is a lofty ambition, bringing it to fruition will not be without its challenges, both practical and regulatory.

As the EFPIA paper points out, health data is currently held in a wide range of repositories, from clinical notes and electronic health records to insurance claims, patient registries, patient-reported outcomes records, and continuous patient monitoring data from apps and wearables.

Unlocking their value, then, requires a high level of interoperability between different IT systems, providers, data sources, and software, all based in different countries with different levels of infrastructure maturity.

“Healthcare system information must be better connected. This will allow stakeholders to use this data for optimising and improving health outcomes,” said the paper, adding that interoperability was a “critical enabler of the digital transformation of healthcare in Europe”.

Conflicting national laws could be another important barrier to data access and use. Varying interpretations of the General Data Protection Regulation (GDPR), for example, present challenges for clinical development of innovative medicines, said the authors.

“Conflicting interpretations of Article 9 of the GDPR, and the additional limitations on processing of health and genomic data that member states have enacted under this article, cause significant delays in study start-up and patient enrolment.

“Some member states take the position that the only lawful basis for processing health data is when individuals have given their consent for its collection and use. Others… take the position that processing this health data, when necessary for scientific research, is lawful.”

EU Data Protection Supervisors, the paper recommends, must reach a common understanding of key GDPR terms if citizens are to enjoy the same rights across the EU.

Practical solutions

The EFPIA paper makes a number of recommendations on how the EU could embrace the full potential of the proposed EHDS.

First, it says that developing a shared understanding of the relevant requirements in digital health is essential, and calls for an EU-wide approach to how data is accessed, pooled, compared and used, while also protecting privacy.

In terms of possible solutions, it points to the use of Federated Data Networks (FDN), in which separate networks share mutual RWD resources.

“In an FDN, data is not moved from its host source, though hybrid models can exist with local and central data hosting. The research question or query moves to where the data is originally hosted, with results aggregated centrally or delivered to the researcher,” said the authors.

This, they went on, could unlock the power of data in primary or secondary care settings, in clinical care decision-making, and in research, whilst preserving the privacy of the RWD at a local level.

Common data models (CDM), which standardise the logical infrastructure of software systems to enable interoperability, are also required.

“CDM is essentially a construct, a means to an end to help organise RWD into a common structure, formats, and terminologies across diverse, heterogeneous, and multiple source datasets,” said the paper.

“It addresses a central need to be able to curate data for analysis on a contemporaneous and continuous basis (not on a per study basis) or for largescale, geographically diverse, network studies of multiple data sources.”

 Joined up approach to joined up data

Ultimately, building a usable EU-wide health data system requires input from all stakeholders, and decisions on FDNs and CDMs should be taken internationally, as a sector.

Because, as the EFPIA says, we all have one goal: using the power of data to improve the health of the citizens of Europe.

About the author

Amanda Barrell is a freelance health and medical education journalist, editor, and copywriter. She has worked on projects for pharma, charities and agencies, and has written extensively for patients, HCPs and the public.

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Large UK study suggests vaccination helps treat long COVID

An observational study in the UK has found evidence that COVID-19 vaccination can help alleviate the lingering symptoms
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An observational study in the UK has found evidence that COVID-19 vaccination can help alleviate the lingering symptoms that afflict some people who contract the virus, often referred to as ‘long COVID’.

There have been persistent anecdotal reports that vaccines can help people with persistent symptoms get better, but the study published in the British Medical Journal is the first to explore the connection in large numbers of patients.

It is based on responses from more than 28,300 adults who are taking part in the UK’s COVID-19 Infection Survey, carried out by the Office for National Statistics, and focused on individuals who reported symptoms that lasted for 12 or more weeks after infection.

The likelihood of long COVID symptoms was found to decrease after COVID-19 vaccination, and evidence pointed to an even greater improvement after a second dose. However, the authors say more data is needed before vaccination can be considered a treatment for the condition.

The team, led by ONS’ Daniel Ayoubkhani, found that before vaccines were available, the chances of experiencing long COVID were fairly constant after infection, but fell around 13% after a first dose, and a further 9% after a second.

The trial completed before the third booster doses were rolled out, and researchers say there is no data yet on whether the improvements reported after vaccines will be sustained with further follow-up.

They speculate that vaccination may “reset” immunity in people with long COVID who are thought to develop dysregulation of the immune system, similar to an autoimmune condition.

“Although causality cannot be inferred from this observational evidence, vaccination may contribute to a reduction in the population health burden of long COVID,” says the paper.

Further research is needed to look at the long-term relationship between vaccines and long COVID, and to gauge the effect of boosters and reinfection with SAS-CoV-2, particularly with the now-dominant Omicron variant, which had not emerged when the data was collected, according to the researchers.

Commenting on the results, Prof Penny Ward, visiting professor in pharmaceutical medicine at King’s College London, said: “These data broadly support prescribers encouraging patients with ‘long COVID’ to be vaccinated, or to complete the course of vaccination if they have not already done so.”

Meanwhile, Dr Peter English, a retired consultant in communicable disease control, said it is likely that long COVID is, in fact, a collection of different conditions, only some of which may respond to vaccination.

“The large scale of this study means that we can be fairly confident about what has been observed; but it does not mean we can be sure what it means,” he cautioned.

Nevertheless, faced with the potentially very significant consequences the condition could have on the health of the population, “anything that can reduce the burden of disease from Long COVID at reasonable cost is…important and valuable”.

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Moderna’s HIV vaccine prepped for trials in Africa

Moderna has joined forces with non-profit organisation IAVI on a third phase 1 trial of its candidate HIV
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Moderna has joined forces with non-profit organisation IAVI on a third phase 1 trial of its candidate HIV vaccine in Africa, where the burden of the virus is still being keenly felt.

IAVI (the International AIDS Vaccine Initiative) has started screening subjects to be included in the study, called IAVI G003, at centres in Rwanda and South Africa, said the biotech.

Moderna’s vaccines deliver HIV-specific antigens discovered by researchers at IAVI and Scripps Research that have already been tested in a proof-of-concept study carried out last year using an adjuvant protein vaccine approach.

There are hopes that its mRNA approach, which proved so effective against COVID-19, could succeed where traditional vaccine technologies have failed in HIV.

One candidate – mRNA-1644 – has already shown its potential in an earlier phase 1 trial (IAVI G001) run in the US. It codes for an antigen called eOD-GT8 60mer and, in the study, stimulated a targeted B-cell immune response in 97% of vaccine recipients.

Moderna says that B-cell activation should lead to the induction of broadly neutralising antibodies (bnAbs), widely considered to be a goal of an efficacious HIV vaccine, but that immunising with eOD-GT8 60mer alone will almost certainly not be sufficient.

The biotech is looking at a combination regimen of vaccines targeting different HIV immunogens such as Core-g28v2 60mer to try to boost the immune response further against HIV and improve the protective efficacy.

Earlier this year, the first healthy volunteers were dosed with mRNA-1644 in a second phase 1 trial (IAVI G002), which is being funded in part by the Bill & Melinda Gates Foundation and is being carried out in US populations.

IAVI G003 will enrol 18 healthy HIV-negative adult volunteers who will receive two doses of the eOD-GT8 60mer mRNA shot. They will be followed for six months to gauge the safety and immunogenicity of the vaccine.

Moderna said the trial is a “first-in-Africa” study, evaluating an mRNA-delivered HIV immunogen in Africa with African researchers leading the project.

Despite more than 30 years of research, the tendency of the virus to mutate means that classical approaches to vaccine design have been ineffective, and at least four prior vaccine candidates have failed in clinical trials.

In February, one of the front-runner candidates in the decades-long quest to find an HIV vaccine – Johnson & Johnson – reported that its candidate failed a phase 2b trial.

The Ad26.Mos4.HIV vaccine – which uses the same adenoviral technology as J&J’s COVID-19 vaccine and targets four HIV antigens – showed that the shot was safe but unable to meet its target of reducing transmission of HIV by 50%.

And last year, the HVTN 702 study of two co-administered HIV candidate vaccines from Sanofi Pasteur and GlaxoSmithKline, combined with GSK’s adjuvant MF59, was also discontinued due to a lack of efficacy.

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