EE-NARS

• Research type

  Research Study

• Full title

  An ethnographic exploration of the care of patients dying using non-invasive advanced respiratory support

• IRAS ID

  339785

• Contact name

  David Wenzel

• Contact email

  david.wenzel@nhs.net

• Sponsor organisation

  University of Leicester

• Duration of Study in the UK

  0 years, 4 months, 28 days

• Research summary

  "Research Summary"
  Non-invasive advanced respiratory support (NARS) is a type of oxygen device used for patients in respiratory failure. Though the treatment is intended to save or prolong lives the very nature of the illnesses it treats means many people will die using, or having recently used, NARS. NARS is very tight fitting, loud and the oxygen it delivers is pressurised.
  Even though this common treatment frequently complicates end-of-life care there is very little known about the experience of dying on NARS, or how to withdraw it peacefully at the end of a person’s life.
  As part of a wider body of research we have already interviewed staff about their perception of this care and found it complicated by high symptom burden, treatment burden and psychological trauma.
  This study seeks to further evaluate the provision of care as it is provided to dying and critically ill patients on NARS using ethnography. An ethnographic study uses direct observation of care by a researcher to find the ‘hidden obvious’. To evaluate, without pretence, how care is affected by NARS and narrate the journeys of patients and their loved ones.
  Data will be collected by the principal investigator (Dr David Wenzel) attending areas of the hospital where NARS is commonly administered and observing all staff members who provide care to patients on, or withdrawing from, treatment. Data will be collected through field notes and recorded, informal, interviews with staff on the wards.
  Data analysis will be undertaken by the research team in conjunction with PPI-collaborators recruited through our patient and public input groups.
  Understanding the dying journey is one of the first steps to being able to intervene, improve and personalise the care that these patients receive.
  "Summary results"
  The Role of Technology in End-of-Life Respiratory Care

  This study explores how healthcare professionals make decisions about using Non-Invasive Advanced Respiratory Support (NARS)—a machine-based treatment that helps patients breathe without requiring a ventilator tube. The research focuses on patients who are critically ill and may not survive, highlighting the emotional and ethical challenges involved in deciding when to continue or stop treatment.
  The study was conducted through ethnographic observation in a UK hospital, meaning the researcher spent time with doctors, nurses, and patients, observing their interactions and decision-making processes.
  Key Findings:

  Faith in the Machine
  Many healthcare professionals trust NARS deeply, often believing it "works" no matter what. If a patient does not improve, the failure is seen as due to the patient’s condition, not the machine itself.

  Balancing Treatment vs. Comfort
  Doctors and nurses face a dilemma: should they continue trying to save a patient with NARS, or focus on making them comfortable in their final days?
  The transition from active treatment to end-of-life care is often delayed because staff feel pressure to "do everything possible" before stopping the machine.

  Power Struggles in Decision-Making
  Senior doctors and specialist teams (such as respiratory experts) often make key decisions about NARS, while junior doctors and general nurses feel excluded.
  However, at night, when senior doctors are absent, junior staff must make life-or-death decisions without much support, leading to uncertainty and anxiety.
  The Role of Families
  Families often play a role in decisions but may not fully understand the limitations of treatment. When patients cannot communicate, doctors sometimes rely on families to encourage mask use, even when it causes distress.

  Conclusions:
  There is a need for better training for junior doctors so they can make more informed decisions.
  Healthcare teams should integrate palliative care earlier to ensure dying patients are not left suffering on machines.
  More emphasis should be placed on patient preferences and advance care planning, so treatment aligns with individual wishes rather than defaulting to aggressive medical intervention.
  This study sheds light on the complexities of end-of-life decision-making in hospitals and highlights the need for a more patient-centered approach.

• REC name

  Wales REC 7

• REC reference

  24/WA/0215

• Date of REC Opinion

  2 Aug 2024

• REC opinion

  Further Information Favourable Opinion