key: cord-0692662-rdmxwvrq
authors: Kirby, Emma; McLaughlan, Rebecca; Wallworth, Lynette; Chappell, Louise; Bellemore, Frances; Chye, Richard
title: Connection, comfort and COVID-19 in palliative care
date: 2021-04-12
journal: Palliat Care Soc Pract
DOI: 10.1177/26323524211001389
sha: 48cca57e454a3e2e0d04f438d11a0740b1bb9168
doc_id: 692662
cord_uid: rdmxwvrq

nan

COVID-19 has made experiences of dying in isolation, or separated from loved ones, more visible. The pandemic has revealed the ways that families are kept apart -through forced restrictions on visitors, closed borders and other public health directives aimed at limiting infection -with profound implications for end-of-life care experiences, including grief and bereavement. 1, 2 Within hospitals, the physical barriers created by the use of personal protective equipment further limit human contact or communication. In palliative care, COVID-19 restrictions mean that families may not be able to touch or be in the same room as patients. 3 Indeed, for many palliative patients, the conditions imposed by COVID-19 may significantly limit patient autonomy, including decisions around place of care and place of death. 4 Such restrictions, while imperative during a pandemic, profoundly shape experiences and relationships between patients, families and clinicians, limiting forms of closeness, intimacy and proximity.

Across countries and a range of care settings, palliative care services have been forced to quickly and flexibly adapt to pandemic conditions. Such changes have included the development of new protocols and best-practice models of care, the redeployment of key workers to best support people within the community, and the seeking of new and creative ways of supporting patients and families. 5, 6 While clinical practices adapted, and compassion and communication remain at the core of frontline work, the social and relational experiences, for patients, their families and clinicians, remain less well-attended to. As Wang and colleagues 1,2 argue, the consequences of the pandemic for social desolation are clear: resource constraints, combined with infection-related restrictions or precautions make the alleviation of suffering, and achieving dignified or 'good deaths' much more complex.

The (ongoing) impact of the COVID-19 pandemic has triggered calls for renewed thinking about compassion, care and dignity. Some researchers have suggested that the urgency of COVID-19 may be a catalyst for new ways of easing suffering within global health agendas, 7 and for strengthening a human rights approach to death and dying. 8 One of the key challenges to providing quality palliative care during COVID-19 has been the sense of separation experienced and felt by patients and their families, as has been shown in previous pandemics. 4 How might we better enable forms of closeness, connection and intimacy for those moving towards the end of life, their loved ones and their clinicians? How can meaningful relationships and rich experiences in palliative care be sustained, adapted, complemented or facilitated that recognise the importance of closeness and familiarity, within the restrictive pandemic conditions? Recent work has charted some of the new and creative attempts to make palliative care (and other hospital) environments feel more familiar, more comfortable and less isolated/distanced from every day (home) life. Telehealth/care or video conferencing technologies have emerged, through which clinicians -who are rarely trained in these modes -try to foster intimacy and connection in communicating with patients and families. 2 These ways of enabling closeness while maintaining physical distance include 'virtual visits' where patients, families and clinicians can see each other (and where clinicians can practice their 'webside manner' 9 ), as well as virtual ministry visits. 10 The provision of familiar material objects, for example, small personal mementoes that can be appropriately stored to avoid potential viral transmission, have also been used as an attempt to comfort patients. Such creative responses to conditions of isolation also include provision of 'care bundles' (including 'comfort items' like personal moisturiser or personalised audio). 11 Indeed, the presence of items of personal value has been well articulated within palliative care research, as part of attempts to make hospital environments more familiar places for everyday life. 12 Another prominent approach to support patients and families include the integration of free wifi, smartphones and tablets, fostering communication and comfort, 11 highlighting the burgeoning use of technologies in enhancing palliative care experiences.

While video calls or conferencing have become common, virtual reality (VR) technologies are also opening up new possibilities for immersive experiences that may enable alternative ways for dignity and patient preferences to be honoured in palliative care. 1 A small but growing body of work has begun to explore the therapeutic potential of VR in palliative care settings, including as a form of distraction or diversion from pain, symptoms, or loneliness and isolation, and as a means for alleviating distress. 13, 14 For example, through simulating physical places, spaces and landmarks, patients can experience locations on their 'bucket list', or explore local neighbourhoods using Google Earth data. 14 As such, emerging technologies may bring comfort and connection to dying patients and their families.

Although promising, there are various points of notable caution. First, it is important to clarify that the spectrum of available technologies, from basic telephone calls through to immersive reality (XR) and VR are not considered a substitute for physical closeness and human connection or intimacy. Further research is needed to evaluate the acceptability and value of new technologies, particularly for patients and families themselves. Second, the imperative to improve global palliative care provision should be foregrounded as part of the acknowledgement that such creative ways of working within pandemic-related constraints are not available or accessible to all. Much more work is needed, across palliative care, public and global health, to bridge gaps in provision, equity and access, particularly across low-and middleincome countries (LMICs). 15 Finally, it is timely to remember that issues of distance and isolation also happen outside of pandemics or other crises: indeed, as Hanson 5 notes, developments in virtual communication with patients and families 'remind us that before COVID-19, many families were unable to visit due to lack of transportation or ill health'.

The pandemic has amplified various forms of suffering, including the consequences of restricting a patient's proximity to familiar people, places and things. Just as COVID-19 represents a key issue for public health and human rights, so does palliative and end-of-life care, shaped by social and structural factors, not just clinical expertise. Endof-life experiences are not simply reflective of health or medical issues, but also are spiritual, cultural, economic, geographical and political matters. Dying is a social and interpersonal experience, and a focus on improving patient-family experiences is integral to practice and care. Importantly, COVID-19 has again made visible issues of inequality and difference, including unequal power, access and opportunities for treatment and care, as well as illuminating the ways that the end of life is culturally, historically and collectively mediated.

Continuing discussion and preparation for future pandemics or other health emergencies is crucial for the improvement of end-of-life care experiences, particularly in grappling with how to balance caring for dying patients and their families with broader public health needs. Whether engaged therapeutically or artistically, as researchers and clinicians, we must be mindful to ensure that the use of new technologies as modes of support are not only tailored to the needs of individuals, but also recognise difference and diversity across patients and families.

Virtual reality as a bridge in palliative care during COVID-19

Pursuing a good death in the time of COVID-19

The Lancet. Palliative care and the COVID-19 pandemic

Pandemic palliative care: beyond ventilators and saving lives

We will all be changed: palliative care transformation in the time of COVID-19

The role and response of palliative care and hospice services in epidemics and pandemics: a rapid review to inform practice during the COVID-19 pandemic

The key role of palliative care in response to the COVID-19 tsunami of suffering

Palliative care, COVID-19 and humanitarian action: it's time to talk

Webside manner during the COVID-19 pandemic: maintaining human connection during virtual visits

Pastoral closeness in physical distancing: the use of technology in Pastoral Ministry during COVID-19

Upside down solutions: palliative care and COVID-19. BMJ Support Palliat Care. Epub ahead of print 17

A palliative environment: caring for seriously ill hospitalized patients

Virtual reality use for symptom management in palliative care: a pilot study to assess user perceptions

A novel palliative care approach using virtual reality for improving various symptoms of terminal cancer patients: a preliminary prospective, multicenter study

COVID-19, palliative care and public health

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