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Coronavirus pandemic: compassionate communities and information technology
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  1. Julian Abel1 and
  2. Mark Taubert2
  1. 1 Compassionate Communities UK, Helston, Cornwall, UK
  2. 2 Palliative Care, Velindre Cancer Centre, Cardiff, Cardiff, UK
  1. Correspondence to Dr Julian Abel, Julian Abel, Compassionate Communities UK, Helston, Cornwall TR12 6DT, UK; abelju{at}yahoo.co.uk

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Introduction

The COVID-19 pandemic has stimulated new thinking, including suppression of individual freedom for the good of all. Terms like ‘social distancing’ have quickly entered the mainstream. Fast-tracked research highlights the risk of contracting COVID-19, correlating it to the number of people with whom an individual has close contact, duration of said contact and personal hygiene measures. In a matter of weeks, we have learnt much about this virus but are still on an uncertain path which will inform future interventions. Individual risk of infection will relate to the efficiency of government public health activities to slow the spread, but also public willingness to curtail individual autonomy and freedom. Health and social care services are likely to be overwhelmed. There is a need for public and community coordination to help those in greatest need (particularly in the home), the seriously ill and the dying. We examine the challenges and potential solutions to the crisis, including how caring networks may help and how modern technology may promote safer care.

Challenges

The immediate challenge for population health is how to reduce the risk of infection. Physical distancing and hygiene measures are the current mainstay, and there are international examples of best practice for both. The outcomes of different methods are unclear, and which is most effective long term has yet to be determined. However, physical distancing is a more factual description than social isolation. Human beings are social animals. More than merely a pleasant aspect of our lives, these social relationships are fundamental to our human health, our minds and well-being. Importantly, good social relationships are more effective in reducing the risk of early death than stopping smoking/alcohol, better diet, losing weight and drug treatment of hypertension.1 Evolutionary impulses stimulate the need for connection, seeing friends, gathering for exercise or reading groups, even affectionate physical contact. Being asked to reverse what we are hard-wired to do may seem unnatural but should be seen through the prism of the greater good. Government advice has been to limit social contacts to ‘flatten the curve’; while this makes sense at face value, it is important to limit this primarily to physical contact. Social contact via telephone, messaging, video, even virtual reality and gaming, a different non-physical form of contact, can continue while maintaining a safe distance and appropriate hygiene.

Compassionate communities can help

A population-based compassionate community programme resulted in a dramatic reduction in hospital emergency admissions.2 In addition, the ‘Great Study’, a longitudinal study into happiness that began in 1938 in Harvard, has provided evidence that good social relationships are associated with a longer, happier and healthier life.3 Emotional closeness and connectivity is a fundamentally important part of a good life.

The challenge to palliative care during this pandemic, in which physical distancing is a mainstay, is how to maintain this vital human contact without increasing viral transmission. Carer exhaustion is common in palliative care under normal circumstances. The resilience of caring networks can make the difference between a peaceful death at home and an inappropriate ‘emergency’ hospital admission. However, these are not normal times. Reducing hospital usage is a particular priority. Studies of how resilient networks function have demonstrated benefits, which in turn improves the morbidity of bereavement.4–6 Supportive compassionate networks, made up from family, friends, neighbours and community members who are prepared to help, have formed as a direct response to the COVID-19 pandemic. Help can be seen to be made up of two main areas of support. First, there are the practical tasks of life, such as shopping, cooking, cleaning and caring for those with an illness, and second, the human companionship of love, laughter and friendship. The active formation and enhancement of such networks is the groundwork of compassionate community initiatives.

Human beings have innate abilities to collaborate, even when close contact and face-to-face communication is limited. Such proclivities may outsmart the viral spread; teaching others to flexibly apply best practices in all settings—and by those who might not usually deliver them—is one example. An impulse to cooperate, combined with the ability to learn from each other, is vanishingly rare in the animal world. We must therefore, amidst all the calls for social distancing, come closer together.

There are two significant reasons for the development of compassionate communities in the dying. The first is practical. Physical and emotional support for the whole caring network assists caregivers and improves death experiences, including the dying process and subsequent loss. The second is that, through compassion, people improve their own health and well-being, including their immune function.7 Physical and emotional resilience of networks, with supportive relationships among network members, relies on health and the well-being of its members.

To maintain our social interactions, we must therefore find new ways to circumvent current physical barriers.

Practical solutions

Assistance to those in isolation is transformative. Support from family members, friends and neighbours is the mainstay, and this is supplemented by the many community groups that have sprung up in response to the pandemic. Such neighbourhood groups, many of which are via free social network messaging services, can be a useful way to help inform and find nearby support. A group called Covid-19 Mutual Aid has formed so that community members can seek their nearest support group. At the time of writing (April 2020) over 4000 community groups have registered in the UK with the online platform. A total of 1 million people have volunteered to support vulnerable people in their community through the NHS Volunteer scheme. The elderly relative of one of the authors received help to join such an online neighbourhood forum and was inundated with requests for help. He also discovered a public guesthouse near his home, which has set up a take-away grocery service (with time slots to avoid crowds) and has started using this regularly, something that may have eluded him otherwise.

Other ways of communication include video messaging applications, many of which are free. A daily phone call to self-isolating friends or relatives can make a real difference, compared with many days spent alone. Already there are how-to-do-it articles in light of COVID-19 that help those unfamiliar with the technology (see https://blogs.bmj.com/spcare/2020/03/15/using-skype-during-pandemic-isolation/). Palliative care services in Wales have started sharing, with patient’s consent, their preferred video or app-based messaging contact methods, so that palliative care community workers can make contact via video message, for instance. Palliative care services should be ideally placed to help those seeking such services. Primary care teams are conducting as many of their surgeries as possible via phone or video conferencing in order to avoid unnecessary close physical contact. Tablet computers and laptops with large screens can be a good way to connect to loved ones (even those far away) in a meaningful audiovisual way. The use of virtual and augmented reality is also increasing at home and at work, with students, for example, using this to access course work by non-traditional means (see https://www.theguardian.com/education/2020/mar/16/it-reduces-surgical-error-can-vr-train-better-doctors).

Gaming and virtual/augmented reality has gained huge traction during the isolation phase of COVID-19. Humans will always find ways to be social, even when not physically close.

Summary

Staying in touch with people undergoing caregiving and experiencing death, dying and loss is particularly important during this COVID-19 outbreak. The long-term consequences of deaths without adequate care will worsen bereavement.8–10 Bereavement is likely to be severe and further complicated when relatives are unable to attend to loved ones because of social isolation.

The old and vulnerable are at risk of dying alone. Minimising harm by attention to how we can all support each other is even more important now than in prepandemic times. We may need a national mourning day once the outbreak is over and look to other forms of community support for the longer-term psychological consequences, such as bereavement meetings and cafes. In the meantime, let us try to maintain physical separation while still maintaining emotional closeness through use of compassion in our communities, using the incredible technologies we have today.

References

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Footnotes

  • Contributors Orignial article: JA; editing and additions: MT.

  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; internally peer reviewed.

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