Bereaved relatives’ end of life experiences during the COVID-19 pandemic

WE’RE DELIGHTED TO PRESENT THIS MONTH’S ‘EDITOR’S CHOICE’ FROM PALLIATIVE MEDICINE, THE OFFICIAL RESEARCH JOURNAL OF THE EAPC

Each month, Professor Catherine Walshe, Editor-in-Chief of ‘Palliative Medicine’, chooses an article that readers may find particularly interesting or useful and invites the authors to draw out the key points on the EAPC blog. Focusing on research that is novel, a robust review, from a specific country or just slightly left of field, the ‘Editor’s Choice’ post aims to share experience and stimulate ideas. We hope you’ll read the longer article in ‘Palliative Medicine’.

Dr Jeff Hanna, Department of Psychiatry, University of Oxford, UK, explains the background to the longer article, of which he is first author, selected as ‘Editor’s Choice’ in the May 2021 issue of ‘Palliative Medicine’. And it’s Open Access…


Dr Jeff Hanna.

We are delighted our paper has been selected as ‘Editor’s Choice’ in Palliative Medicine. As palliative care researchers and clinicians, we understand the importance for relatives to be involved in their family member’s end of life experience. Research shows that if the needs of relatives are met when a family member is dying, they report higher satisfaction with end-of-life care, adjust better in their grief, and report better psychological outcomes.1 COVID-19 is likely to have had a major impact on the experience of death and dying for families bereaved during the pandemic in the United Kingdom. We explored the impact of restricted visiting to hospitals and care homes on families during this time and identified how best families can be supported at end of life.

In our qualitative study, pandemic-related restrictions meant that many relatives had not seen their dying family member for weeks or months, and they described their ongoing pain of being absent at end of life. Relatives wanted to physically be with their dying family member at end of life and provide personal aspects of care. Additionally, many reported struggling emotionally and practically as a consequence of reduced social networks. While some bereaved relatives had the opportunity to physically spend time with their dying family member before they died, others could only connect virtually; however, this relied on healthcare teams facilitating the call. More often, relatives stated they did not have the chance to ‘say goodbye’ to their dying family member. It seemed many of the factors which can help bereaved families were absent during the pandemic which has implications for post-bereavement services. Some families were unsure how to tell their children someone in their life was going to die during the pandemic; many children were not prepared for the death of a significant adult. It appeared that healthcare teams were predominately focused on clinical care during the pandemic. Bereaved relatives were appreciative of the care from health and social care professionals, given the multiple demands on them during the pandemic, but identified practical changes that could have made a difference to their experience of bereavement and loss.

“The actual fact that we could go there and see her, because we hadn’t seen her for so long. It was important being able to touch her one last time and talk to her.”

“We got the call saying, ‘how quick can you get over because your dad, we don’t think he’s going to last long’. So, I was halfway on the road, as it’s a 10-mile journey and got the call telling me he died.”

Our study makes important recommendations for health and social care professionals providing end-of-life care during a pandemic. These include:

  • Prioritise connectedness between patients and relatives using video and telephone calls.
  • Provide relatives with regular telephone updates about personal aspects of care (such as what their family member had eaten and if they had been able to communicate).
  • Offer advice and guidance about how to prepare children for the death of a loved one.
  • Facilitate opportunities for relatives to ‘say goodbye’ in person before death wherever possible.

We look forward to sharing two further papers from this study, which have been accepted to Palliative Medicine. One is already online and the third will follow soon (see ‘Further reading’ below).

References
1. Stajduhar KI, Martin W, Cairns M. What makes grief difficult? Perspectives from bereaved family caregivers and health care providers of advanced cancer patients. Palliat Support Care 2010; 8(3): 277-289.

Further reading
Hanna JR, Rapa E, Dalton LJ, Hughes R, Quarmby LM, McGlinchey T, Donnellan WJ, Bennett KM, Mayland CR, Mason SR. Health and social care professionals’ experiences of providing end of life care during the COVID-19 pandemic: A qualitative study. Palliative Medicine. Published online 18 May 2021. Open Access.  https://doi.org/10.1177/02692163211017808

In press: Mayland CR, Hughes R, Lane S, McGlinchey T, Donnellan WJ, Bennett KM, Hanna JR, Rapa E, Dalton LJ, Mason SR. Are public health measures and individualised care compatible in the face of a pandemic? A national observational study of bereaved relatives’ experiences during the COVID-19 pandemic. Palliative Medicine.

DOWNLOAD THE FULL ARTICLE IN ‘PALLIATIVE MEDICINE’ – OPEN ACCESS
This post relates to the longer article, ‘A qualitative study of bereaved relatives’ end of life experiences during the COVID-19 pandemic’ by Jeffrey R Hanna, Elizabeth Rapa, Louise J Dalton, Rosemary Hughes , Tamsin McGlinchey, Kate M Bennett , Warren J Donnellan , Stephen R Mason and Catriona R Mayland, published in Palliative Medicine Volume 35 issue: 5, page(s): 843-851. Article first published online on March 30, 2021. Issue published: 1 May 2021. https://doi.org/10.1177/02692163211004210

EAPC Members – login to the Members Area of the EAPC website and download your copy of the article here: https://www.eapcnet.eu/members/editors-choice/

Links


EXPLORE NEW DIMENSIONS  at 17th  EAPC World Congress Online from 6 to 8 October 2021. There’s a great line-up of plenary speakers, oral communications, posters and lots of opportunity for online networking, Science Slam, Yoga sessions and much else…
And you’ll have the chance to Dr Jeff Hanna. Alongside colleagues at Ulster University and King’s College London Jeff will be launching his ’10 useful tips to help parents and carers with a life-limiting illness have conversations with their children’ resource. The resource will be hosted by Marie Curie and freely available to all health and social care professionals. Find out more, and take part in many other great presentations at the congress…

 

This entry was posted in BEREAVEMENT, EAPC-LINKED JOURNALS, Palliative Medicine: Editor's Choice and tagged . Bookmark the permalink.

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