Grief in NARS
Research type
Research Study
Full title
Perspectives on Dying with Non-Invasive Advanced Respiratory Support and Its Impact on Grieving – a qualitative exploration
IRAS ID
346191
Contact name
Jennifer Creese
Contact email
Sponsor organisation
University of Leicester
Duration of Study in the UK
1 years, 6 months, 1 days
Research summary
This study, "Perspectives on Dying with Non-Invasive Advanced Respiratory Support (NARS) and Its Impact on Grieving – a qualitative exploration," aims to understand how the use of NARS in end-of-life care affects the grieving process of bereaved loved ones. NARS, such as continuous positive airway pressure (CPAP) and non-invasive ventilation (NIV), is commonly used for treating respiratory failure in patients with conditions like chronic obstructive pulmonary disease (COPD), heart failure, and obesity hypoventilation syndrome. While NARS can prolong life, patients who require it are critically ill, and mortality rates are high. For example, the mortality rate for older adults with COVID-19 using CPAP can be as high as 85% and NIV for COPD carries a 12% mortality rate. The process of dying while using NARS is complex and can be distressing for both patients and their families, with significant symptom burden and challenges in providing care.
The study, led by Dr. Jennifer Creese and Dr. David S. Wenzel, will involve interviewing 10-30 bereaved loved ones who have experienced the death of a loved-one who used NARS. These interviews, which can take place in person, over the phone, or via video call, will explore their perspectives on the care provided, communication about prognosis and treatment decisions, and the overall impact on their grieving process. By using interpretive phenomenological analysis (IPA), the researchers aim to deeply understand how these loved ones make sense of their experiences and identify ways to improve support during and after the end-of-life care process.
The study will be conducted over one year, and all data will be anonymized and securely stored. The findings will be published in academic journals and presented at conferences to inform better practices in end-of-life care. This research is crucial for developing interventions that can alleviate the emotional burden on families and enhance the quality of care provided to patients in their final days.Lay summary of study results: This study explored the experiences of bereaved loved ones whose relative died while receiving, or shortly after receiving, non-invasive advanced respiratory support, (NARS - tight fitting oxygen masks). Although only two bereaved loved ones were interviewed, their accounts were analysed alongside a wider corpus of data, including staff interviews, and ethnographic data (bedside observation) and a review of hospital guidelines. The purpose was to understand how this form of treatment shaped dying, decision-making and bereavement.
The findings suggest that NARS can be difficult for loved ones to witness. The mask, machine noise, alarms and visible breathlessness could make the bedside feel frightening and medicalised. For some families, the treatment represented hope and an attempt to save life; for others, once it became clear that the patient was dying, the priority shifted toward comfort and relief of suffering.
Loved ones were not passive observers. They often helped provide comfort, interpreted the patient’s distress, supported communication, and sometimes became involved in practical aspects of care around the mask. However, their role in decision-making was complex. Families were often asked to understand or support decisions about stopping treatment, but the clinical judgement that treatment was no longer helping usually remained with healthcare professionals.
A key finding was that families often made sense of withdrawal when staff could explain that the patient was very unwell, that treatment had been tried, and that continuing it would not help. Clear, compassionate communication appeared central to whether the death could be understood as appropriate and caring rather than as abandonment.
Overall, this work package found that dying with NARS affects not only patients and staff, but also the memories and grief of those left behind. Better care should include earlier conversations about prognosis, careful explanation of what the mask is doing, attention to the distress caused by the equipment, and support for loved ones before, during and after withdrawal decisions. These findings should be interpreted cautiously because the bereaved interview sample was small, but they are consistent with the wider corpus findings.
REC name
Wales REC 7
REC reference
24/WA/0284
Date of REC Opinion
30 Sep 2024
REC opinion
Favourable Opinion