Death and dying during the pandemic

Yardley, Sarah; Rolph, Martin

doi:10.1136/bmj.m1472

Cited by 60 publications

(68 citation statements)

References 5 publications

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“…Meanwhile, EOL discussions might be even more important when helping people who are unlikely to survive COVID-19. 21 With regard to EOL discussions with relatives, these were more commonly documented in the hospitals than in the nursing homes, 87% and 82%, respectively. The lower figure for EOL discussions with patients than with relatives is explained by the fact that a considerable proportion of residents in Swedish nursing homes suffer from cognitive failure, many of them having severe dementia.…”

Section: Discussionmentioning

confidence: 99%

“…For family members, being forbidden to be present at the EOL for medical reasons makes the situation traumatic. 21 Being present is in a symbolic way a time for lasts, it is a time for goodbyes. 6 However, the family's presence implies much more than this: being present during the last hours means that the family can act as the patient's guardians and advocates, health historians, and informal caregivers.…”

Section: Dying Alonementioning

confidence: 99%

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Dying From COVID-19: Loneliness, End-of-Life Discussions, and Support for Patients and Their Families in Nursing Homes and Hospitals. A National Register Study

Strang

Bergström

Martinsson

et al. 2020

Journal of Pain and Symptom Management

101

108

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Context. Preparation for an impending death through end-of-life (EOL) discussions and human presence when a person is dying is important for both patients and families. Objectives. The aim was to study whether EOL discussions were offered and to what degree patients were alone at time of death when dying from coronavirus disease 2019 (COVID-19), comparing deaths in nursing homes and hospitals. Methods. The national Swedish Register of Palliative Care was used. All expected deaths from COVID-19 in nursing homes and hospitals were compared with, and contrasted to, deaths in a reference population (deaths in 2019). Results. A total of 1346 expected COVID-19 deaths in nursing homes (n ¼ 908) and hospitals (n ¼ 438) were analyzed. Those who died were of a more advanced age in nursing homes (mean 86.4 years) and of a lower age in hospitals (mean 80.7 years) (P < 0.0001). Fewer EOL discussions with patients were held compared with deaths in 2019 (74% vs. 79%, P < 0.001), and dying with someone present was much more uncommon (59% vs. 83%, P < 0.0001). In comparisons between nursing homes and hospital deaths, more patients dying in nursing homes were women (56% vs. 37%, P < 0.0001), and significantly fewer had a retained ability to express their will during the last week of life (54% vs. 89%, P < 0.0001). Relatives were present at time of death in only 13% and 24% of the cases in nursing homes and hospitals, respectively (P < 0.001). The corresponding figures for staff were 52% and 38% (P < 0.0001). Conclusion. Dying from COVID-19 negatively affects the possibility of holding an EOL discussion and the chances of dying with someone present. This has considerable social and existential consequences for both patients and families. J Pain Symptom Manage 2020;60:e2ee13.

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Section: Discussionmentioning

confidence: 99%

Section: Dying Alonementioning

confidence: 99%

Dying From COVID-19: Loneliness, End-of-Life Discussions, and Support for Patients and Their Families in Nursing Homes and Hospitals. A National Register Study

Strang

Bergström

Martinsson

et al. 2020

Journal of Pain and Symptom Management

101

108

View full text Add to dashboard Cite

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“…Moreover, the small living units of most settings do not resemble a real home as living units are designed to encourage communal living (Green and Ayalon, 2019). Finally, fear of dying in isolation, separated from their loved ones as was often presented in the media may be another source of stress and anxiety (Yardley and Rolph, 2020). These factors might result in higher levels of distress, helplessness, and thus, anxiety and potentially depression among LTC residents.…”

Section: Emotional Threats To Older Adults In Long-term Care Settingsmentioning

confidence: 99%

Long-term care settings in the times of COVID-19: challenges and future directions

Ayalon

Zisberg

Cohn‐Schwartz

et al. 2020

Int. Psychogeriatr.

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Long-term care settings in the times of COVID-19: challenges and future directions The term "long-term care settings" (LTCS) encompasses settings that provide a range of services to meet older persons' needs for social, personal, and/or health care. These settings may include nursing homes or assisted living facilities, which are designed for people who require assistance in performing activities of daily living, such as bathing or transferring; meals, cleaning services, and social activities are also provided. A skilled nursing facility differs from assisted living in that it aims to meet not only the residents' physical needs but also their medical needs. Hence, this setting provides in-patient medical treatment and rehabilitation services in addition to the services enumerated above (Sanford et al., 2015). Continuing care retirement communities, on the other hand, represent a residential alternative for older persons, who are independent, when first entering the setting. Residents are free to choose a variety of on-site services, including social activities, health care services, cleaning, and prepared meals. Depending on older persons' evolving needs, more intensive levels of care might be available to allow older persons to age in place (Ayalon, 2016). Hence, LTCS cater to a varied population of older persons, with very different care needs and resources. The nature of the facilities, the quality of care provided, the cost, and the source of funding may vary dramatically across settings.

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“…In the UK, deaths have been impacted on during the pandemic by social distancing and personal protective equipment requirements negatively impacting on family experiences and grieving. As Yardley and Rolph note 'hospitals have closed their doors to visitors, separating patients from family and friends' 45 with profound changes to the way we understand and cope with this event. Holistic and community care during the pandemic is also at risk, as discussed by Etkind et al who state that this type of care 'can be compromised by extreme pressure on [healthcare] services' 46 potentially adversely influencing lived experiences of dying at home.…”

Section: Dyingmentioning

confidence: 99%

The dying patient: taboo, controversy and missing terms of reference for designers—an architectural perspective

2020

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Contemporary society has grown seemingly detached from the realities of growing old and subsequently, dying. A consequence, perhaps, of death becoming increasingly overmedicalised, nearly one in two UK nationals die institutional deaths. In this article we, two architectural scholars engaged in teaching, research and practice and a nurse and healthcare scholar with a focus on end-of-life care and peoples’ experiences, wish to draw attention to a controversy resulting from a paucity in current literature on the terms of reference of the dying ‘patient’ as we navigate the future implications of the COVID-19 pandemic. This contributes to a relative lack of touchstones for architects to refer to when designing person-centred palliative care environments. Unlike common building types, architects are extremely unlikely to have lived experience of palliative care environments as patients; and therefore, require the help of healthcare professionals to imagine and empathise with the requirements of a person dying away from home. This paper includes a review of ageing and dying literature to understand, and distil from an architectural perspective, who, design professionals, are designing for and to remember the nuanced characteristics of those we hold a duty of care toward. We ask readers to heed the importance of accurate terms of reference, especially when commissioning and/or designing environments of palliative care. Furthermore, we put forward an appeal for interdisciplinary collaboration to develop a framework for codesigning positive experiences of person-centred care and environments at the end of life.

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Death and dying during the pandemic

Abstract: New expressions of humanity help dispel fear and protect the mental health of bereaved families

Cited by 60 publications

References 5 publications

Dying From COVID-19: Loneliness, End-of-Life Discussions, and Support for Patients and Their Families in Nursing Homes and Hospitals. A National Register Study

Dying From COVID-19: Loneliness, End-of-Life Discussions, and Support for Patients and Their Families in Nursing Homes and Hospitals. A National Register Study

Long-term care settings in the times of COVID-19: challenges and future directions

The dying patient: taboo, controversy and missing terms of reference for designers—an architectural perspective

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