Patient safety and hospital visiting at the end of life during COVID-19 restrictions in Aotearoa New Zealand: A qualitative study

Patient safety and hospital visiting at the end of life during COVID-19 restrictions in Aotearoa New Zealand: A qualitative study

An article written by Associate Professor Rachael Parke

During COVID-19 hospital visiting restrictions were put in place to reduce the spread of the virus and protect everyone working in and visiting the hospital. People nearing the end of life and those caring for them were separated from each other. People’s worlds were turned upside down.

We know that family members play an important role for people in hospital and that for people who are dying their caregiver’s presence can help them to feel safe and secure. We wanted to understand the experiences of families and clinicians of COVID-19-related restrictions for people with palliative and end-of-life care needs. [1] We interviewed 27 family members, doctors and nurses. 

We found that measures put in place to prevent harm had inadvertently caused harm from the perspective of participants of our research. Family members felt side lined from the care of their loved ones in hospital and felt they were relegated to a position of ‘visitor’.

Healthcare staff saw inconsistencies in how ‘rules’ were applied. Sometimes they questioned why ‘normal’ activities like large ward rounds continued with many people around a bed when families couldn’t visit someone who was dying.

There was an assumption that having no visitors meant hospital patients and staff would be safe. Families, however, saw their role as fundamental to the safety and care of the dying person. Their notion of safety included helping patients with tasks such as eating and drinking, hygiene cares and dignity, and being present as a support person, information gatherer, and advocate especially if their family member had a cognitive impairment.

Safety also included psychological, emotional, spiritual, and social support and healthcare staff felt unable to provide safe, high-quality person-centred care without the presence of family who knew the patient as a person. Participants in our study often took things into their own hands. They described how they would go to extraordinary lengths to be with their dying relative or came up with solutions to enable them to be there as this family member expressed:  

I was a risk, but, you know, to put a bracelet or something you know like around your ankle, like a prisoner I would have been quite happy to do that. (P022 Family)

Families also saw being with ‘their’ person at the end of life as a human right that should supersede any other policy. They conveyed distress and grief, if not with a person as they died. This also caused cultural, psychological, and physical issues for them as they felt they had abandoned their dying family member in circumstances beyond their control. Health care staff tried to balance the needs of patients and families with the risks of COVID-19 but enforcing visiting restrictions caused moral conflict and distress for them.

Healthcare staff and family members sometimes got creative with ‘work arounds’ to sidestep policies. On occasion a family member, spurred on by anger and frustration, and feeling that they had exhausted all other avenues, sought legal routes to gain access to their loved one.  Some participants highlighted the issue on social media.

These experiences raise questions around human rights and freedoms. During a pandemic and threat to public health and safety, ethics around visiting rights should be discussed openly. [2] Maybe restrictions on hospital visits override the protection of individual freedom and autonomy, [3] however there should be a balance between the rights and interests of the wider community and those of individuals. It is important that visiting policies be reviewed frequently during a pandemic and adjusted as levels of risk change. Future visiting policies must also provide support mechanisms for staff to alleviate the distress caused by having to play the role of both carer and enforcer.

Visitor rights and policies at the end of life require greater protection during a pandemic. Transparent, publicly available guidelines that are based on current evidence and designed by patients, families, clinicians, and ethicists, are needed. We want to prevent ongoing grief in future pandemics. The long-term effects of visiting restrictions on families including effects of delayed and complicated grief are not yet fully known and should be explored.   

We sincerely thank all who took the time and participated in this study. We recognise the clinicians who have cared for patients and families during the pandemic.

Funding
This study was supported by a Health Research Council of New Zealand activation grant (20/1280). They had no input into the design, conduct, or analysis of the study.

Ethical Approval
This study was approved by the University of Auckland Human Participants Ethics Committee (UAHPEC20032).

References

  1. A. Collier, D. Balmer, E. Gilder and R. Parke (2023). Patient safety and hospital visiting at the end of life during COVID-19 restrictions in Aotearoa New Zealand: a qualitative study. BMJ Quality Safety: bmjqs-2022-015471.
  2. Singer PA, Benatar SR, Bernstein M, Daar AS, Dickens BM, MacRae SK, Upshur RE, Wright L, Shaul RZ. Ethics and SARS: lessons from Toronto. BMJ. 2003 Dec 6;327(7427):1342-4. doi: 10.1136/bmj.327.7427.1342.
  3. Rogers S. Why can't I visit? The ethics of visitation restrictions - lessons learned from SARS. Crit Care. 2004 Oct;8(5):300-2. doi: 10.1186/cc2930. Epub 2004 Aug 31.

Profile picture of Rachael Parke
Rachael Parke, RN PhD
Associate Professor | Te Kura Naahi (School of Nursing) | Waipapa Taumata Rau (University of Auckland)
Associate Head | Postgraduate Research | Te Kura Naahi (School of Nursing) | Waipapa Taumata Rau (University of Auckland)
Nurse Senior Research Fellow | CVICU | Auckland City Hospital



 

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The views and opinions expressed in Palliative Perspectives are those of the authors and are not necessarily supported by CareSearch, Flinders University and/or the Australian Government Department of Health and Aged Care.