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Research
Experience of acute noninvasive ventilation—insights from ‘Behind the Mask’: a qualitative study
  1. Tracy A Smith1,2,
  2. Meera Agar3,4,
  3. Christine R Jenkins5,6,
  4. Jane M Ingham1,7 and
  5. Patricia M Davidson8,9
  1. 1 Faculty of Medicine, UNSW Australia, St Vincent's Clinical School, Sydney, New South Wales, Australia
  2. 2 Department of Respiratory and Sleep Medicine, Westmead Hospital, Sydney, New South Wales, Australia
  3. 3 Palliative Care Unit, Braeside Hospital, Hammond Care, Sydney, New South Wales, Australia
  4. 4 Discipline of Palliative and Supportive Services, Flinders University, Adelaide, South Australia, Australia
  5. 5 Department of Thoracic Medicine, Concord Repatriation General Hospital, Concord, New South Wales, Australia
  6. 6 Faculty of Medicine, University of Sydney, Sydney, New South Wales, Australia
  7. 7 St Vincent's Health Network, Sydney, New South Wales, Australia
  8. 8 School of Nursing, Johns Hopkins University, Baltimore, Maryland, USA
  9. 9 Faculty of Health, University of Technology Sydney, Sydney, New South Wales, Australia
  1. Correspondence to Dr Tracy Smith, Department of Respiratory Medicine, Westmead Hospital, PO Box 533, Wentworthville, NSW 2145, Australia; Tracy.smith2{at}health.nsw.gov.au

Abstract

Objective Non-invasive ventilation (NIV) is widely used in the management of acute and acute-on-chronic respiratory failure. Understanding the experiences of patients treated with NIV is critical to person-centred care. We describe the subjective experiences of individuals treated with NIV for acute hypercapnic respiratory failure.

Design Qualitative face-to-face interviews analysed using thematic analysis.

Setting Australian tertiary teaching hospital.

Participants Individuals with acute hypercapnic respiratory failure treated with NIV outside the intensive care unit. Individuals who did not speak English or were unable or unwilling to consent were excluded.

Results 13 participants were interviewed. Thematic saturation was achieved. Participants described NIV providing substantial relief from symptoms and causing discomfort. They described enduring NIV to facilitate another chance at life. Although participants sometimes appeared passive, others expressed a strong conviction that they knew which behaviours and treatments relieved their distress. Most participants described gaps in their recollection of acute hospitalisation and placed a great amount of trust in healthcare providers. All participants indicated that they would accept NIV in the future, if clinically indicated, and often expressed a sense of compulsion to accept NIV. Participants' description of their experience of NIV was intertwined with their experience of chronic disease.

Conclusions Participants described balancing the benefits and burdens of NIV, with the goal of achieving another chance at life. Gaps in recall of their treatment with NIV were frequent, potentially suggesting underlying delirium. The findings of this study inform patient-centred care, have implications for the care of patients requiring NIV and for advance care planning discussions.

  • Heart failure
  • Chronic obstructive pulmonary disease
  • Respiratory conditions
  • noninvasive ventilation
  • Advance care planning

https://doi.org/10.1136/bmjspcare-2015-000908

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    Introduction

    Noninvasive ventilation (NIV) is used to treat acute and acute-on-chronic respiratory failure. NIV improves gas exchange and ‘buys time’ while other disease-directed treatments reverse acute physiological disturbances.1 ,2 In Australia, in 2013–2014, acute exacerbation of chronic obstructive pulmonary disease (COPD) was responsible for 64 000 hospitalisations.3 Up to 20% of such admissions may be complicated by hypercapnic respiratory failure,4 potentially indicating a need for ventilatory support. NIV is also used to manage patients with other causes of hypercapnic respiratory failure including heart failure, motor neuron disease and other conditions.5 ,6 This study focuses on people with a range of diagnoses who are treated with NIV.

    The decision to initiate NIV is made in clinically critical situations. The need for NIV may be a marker of poor prognosis with several studies suggesting that the 1-year survival following NIV for hypercapnic respiratory failure is ∼50%.7–9 The medical term ‘non-invasive’ is used for NIV as intubation is not required. However, the patient perception may be of an intensive treatment delivered through a tight-fitting mask constantly applied to the face, and as such it may be perceived as invasive or burdensome. The application of this treatment can risk adding emotional and physical discomfort for an already distressed patient.10

    Patient-centred approaches to chronic disease are increasingly emphasised in clinical practice, policy and research.11–13 Additionally, the importance of advance care planning (ACP) is increasingly appreciated in the management of chronic cardiorespiratory disease.14 ,15 ACP discussions may include the role palliative approaches could play in the patients' current management and their preferences about care towards the end of life.

    Although some authors have suggested the use of NIV to relieve symptoms at the end of life, concerns remain regarding the comfort and patient acceptability of this approach.16

    Clinicians who understand patient experiences can better respond to the complex interplay among evidence, clinical need and patient preference. While two Scandinavian qualitative studies have described the approaches that patients use to adapt to NIV,17 ,18 and an English qualitative study suggested that delirium was prominent,19 we have not identified any studies that describe the range of subjective experiences of patients treated with NIV. The relative paucity of evidence in this field has led a recent commentary to call for more research.20

    We undertook semi-structured interviews of patients receiving NIV for hypercapnic respiratory failure due to a variety of aetiologies, aiming to describe their subjective experiences of NIV.

    Methods

    The study was approved by the South Eastern Sydney Illawarra Area Health Service Human Research Ethics Committee—Central Network (approval number 09/STG/128) and participants gave informed consent. Methodology and reporting of results align with the consolidated criteria for reporting qualitative research guidelines.21

    Interviews were undertaken by a single member of the research team (TAS) who is a female respiratory physician with extensive training and experience in palliative care. In her clinical role, she has observed a spectrum of responses to NIV. These have ranged from some patients appearing more settled after starting treatment to those who appeared uncomfortable on NIV, necessitating cessation of therapy. She undertook the study to better understand the patient perspective. While efforts were made to minimise bias in collecting and interpreting qualitative data, an observer's perceptions of patient discomfort or relief may influence their interpretation of qualitative data. TAS had no clinical relationship with participants at the time of interview. Patients were interviewed in a private space during hospitalisation once they were able to comfortably converse and no longer required constant NIV. Interviews were scheduled to occur when patients were alone.

    A convenience sample of participants were recruited from a larger mixed methods study. This larger study prospectively audited the use of NIV in patients with acute hypercapnic respiratory failure (demonstrated on arterial blood gas assessment) and managed outside the intensive care unit. At this hospital, NIV was delivered in three sites—the high dependency unit, the emergency department and the respiratory ward. English-speaking patients who were able to give informed consent and remained in hospital long enough to be interviewed by the research team were invited to participate. The challenges of interviewing critically ill patients during their index admission has implications for recruitment, but efforts were made to ensure that patients invited to be interviewed were representative of the range of aetiologies of respiratory failure and the spectrum of experiences with NIV (from those who adapted easily to those who struggled with NIV). Potential participants were excluded if they were too unwell to converse or declined involvement. The common reasons for the latter were that the patient felt too unwell or was uninterested in participation.

    The interview guide, available in the online supplementary material, was tested for face validity by an expert panel. It consisted of nine questions exploring the patients' memories from becoming unwell to the present moment, focusing on NIV treatment. Interviews were digitally recorded, transcribed verbatim and field notes collected. Ongoing consent was managed within the interviews by informing patients during the consent process that withdrawal at any time was acceptable and by sensitively reflecting on participants' responses and offering patients an opportunity to pause or terminate the interview. No interviews were terminated for this, or any other, reason.

    Supplementary material

    Analysis focused on understanding the experiences of individuals treated with acute NIV using thematic analysis. This technique facilitates the identification and analysis of themes in a qualitative data set and allows for the description of important themes in the phenomenon of interest.22 The philosophical perspective applied to this study was that of patient-centeredness.23 Validity was sought by two researchers (TAS and PMD) independently analysing the transcripts line by line using a reflective, iterative process. Resultant codes were repeatedly compared within and between participants, looking for commonalities and anomalies, as well as consistency with the transcripts.24 PMD and TAS grouped codes into candidate themes. These candidate themes were discussed with a third researcher (MA) until consensus was reached.24 Refining and finally naming the themes was performed by discussion and consensus involving all authors.22 Throughout this process, the themes were repeatedly compared with the transcripts to ensure that the identified themes accurately reflected the data. Sample size was determined according to qualitative methodology, with interviews conducted until no new themes emerged (ie, until ‘thematic saturation’ was achieved).25 A process of reflection and discussion between all members of the research team was used to explore and minimise bias. Trustworthiness was ensured throughout the design, analysis and reporting by adherence to the principles of trustworthiness set out by Elo et al.26 Themes were not identified a priori, but instead evolved directly from the transcripts.24 The results of line-by-line coding were stored in Microsoft Word (2010). The development of candidate themes and all further analysis was performed manually.

    Results

    Thirteen interviews were completed, with a mean duration of 28 min (SD 9.7 min). The clinical and demographic characteristics of participants are detailed in table 1. The mean age of participants was 72 years (SD 11 years), eight were women and seven lived alone. One participant had motor neuron disease; the remainder had underlying obstructive lung disease and/or heart failure.

    View this table:
    Table 1

    Demographic and clinical characteristics of participants

    The mean time from starting NIV until the interview was 10.4 days (SD 5.1 days). Participants had acute hypercapnic respiratory failure at hospital admission with a mean arterial pH of 7.32 (SD 0.08) and a mean arterial CO2 of 57.8 mm Hg (SD 11.5 mm Hg). The most common reasons for exclusion were that participants did not speak English, declined consent or had cognitive impairment precluding informed consent. Thematic saturation was reached after 11 interviews; 2 further interviews revealed no additional themes.

    After carefully reviewing the 140 codes derived from line-by-line review of the transcripts, six overarching, interrelated themes were evident:

    • A passenger on a journey

    • Balancing benefits and burdens of treatment

    • Looking to another chance

    • Struggling and suffering

    • Knowing what relieves my distress

    • Feeling vulnerable and trusting staff

    These themes and illustrative quotes are presented below. Figure 1 illustrates diagrammatically how these themes interact with each other. The intent of the figure is to contextualise and illustrate our findings within the chronic illness journey. Supporting quotations are presented in table 2 and referred to in the text with a ‘Q’ and a number.

    View this table:
    Table 2

    Quotations from transcripts to support the derived themes

    Figure 1
    Figure 1

    Diagrammatic interaction of themes related to the experience of NIV for acute hypercapnic respiratory failure. NIV, noninvasive ventilation.

    A passenger on a journey

    All participants described sentiments consistent with this theme. Most expressed a passive acceptance of their medical condition and the inevitability of declining health.

    Participants generally described feeling they had little choice in treatment decisions during exacerbations. Their descriptions suggest an external locus of control and deference to health professionals (Q1). Most participants expressed a sense of compulsion to have NIV. For some, this was driven by a sense that NIV was life-saving (Q2). For others, this compulsion was allied to complying with health professionals' recommendations (Q3).

    The unpredictability of health on a day-to-day basis was described by many. Some rationalised that they had had a good life and implied that whatever lay ahead for them was something they would accept and was largely out of their hands (Q4, 5). The inevitability of death was acknowledged by most, with its timing seen as uncertain (Q6).

    Balancing benefits and burdens of treatment

    Many participants described mentally juggling the benefits and burdens of NIV (Q7) and articulated balancing this dialectical perspective. They described a complex interplay between symptoms, fear and NIV. All but one participant described intolerable dyspnoea prior to NIV initiation. Other symptoms described included fatigue, pain, fear and anxiety. In this context, many reported that they thought they might die.

    The primary symptomatic benefit of NIV was dyspnoea relief. For some, relief was prompt (Q8), whereas others reported NIV initially worsened dyspnoea, however as they became accustomed to NIV, their dyspnoea improved. Six participants reported that NIV aided sleep, while two reported worsened sleep. Sleep deprivation prior to hospitalisation was frequently mentioned and participants expressed relief at being able to sleep once NIV started (Q9). Many perceived that NIV reduced anxiety, particularly if they had experienced symptomatic relief with NIV in the past.

    For participants, the burdens of NIV revolved around discomfort, predominately related to the mask, claustrophobia and the ‘air’ (or more precisely the air/oxygen mix) rushing over their face, sometimes associated with noise. A few articulated fear of the ventilator itself, especially a larger machine used in this hospital's emergency department. Some participants focused their description on benefits, whereas others perceived higher burden. Despite the burdens, all patients expressed that they would accept NIV again if clinically indicated.

    Looking to another chance

    Many participants saw NIV as something to be endured, not only to relieve symptoms (Q8) but also to secure another chance at life (Q10). Participants reflected on recovery from past exacerbations, and this appeared to reinforce the possibility of recovery from this exacerbation, leading to another chance at life. NIV was seen as instrumental in facilitating recovery, although there was a sense that patients felt compelled to accept treatment (Q11). The assistance of family in managing acute illness and aiding adaptation to NIV was also noted (Q12).

    The notion of another chance is also displayed in the way participants looked to the future. Many hoped that increased mobility, more exercise or improved diet would maintain their recovery. Some looked with regret to past behaviours (eg, smoking, poor diet and not exercising) to explain their current predicament, emphasising what they would change in the future to make use of another chance (Q13). They described hoping to return to enjoyable activities (Q14) or to live longer, so they could spend more time with family (Q15).

    Struggling and suffering

    Participants moved freely from describing their experience with NIV to describing their struggles in daily life. They appeared not to distinguish between their chronic ill health and acute exacerbations, even those requiring NIV. Symptoms were heightened at the time of exacerbation, and this increased individual's feelings of struggle and suffering. In daily life, symptoms caused suffering, and functional limitation led to struggle and suffering (Q16, 17). There was a sense of loss and grief articulated that arose from this struggle and suffering.

    Knowing what relieves my distress

    Participants displayed insight regarding understanding their body, knowing when they needed medical assistance, managing sleep and self-soothing. This was apparent in times of clinical stability and exacerbation, and related to NIV, medication use and self-care. Several participants described a clear understanding of practices which soothed, enhanced coping and treatments which provided symptomatic relief (Q18, 19). Unsurprisingly, participants who used NIV at home had well-informed views regarding mask application and pressure settings. However, some patients who were new to NIV described telling staff when they no longer needed NIV (Q20), what pressure settings they would accept and asking for NIV to be gradually increased from a low pressure to aid acclimatisation (Q21).

    Feeling vulnerable and trusting staff

    When participants were asked to recount their experiences starting from when they became unwell at home up to the time of interview, most were unable to recall parts of their acute presentation. They sometimes could not recall the initial application of NIV and occasionally described ‘waking up’ on NIV several hours or days after NIV initiation (Q22). Many participants described feeling vulnerable during exacerbations and lapses in recall amplified the sense of vulnerability and lack of control (Q23). Some articulated the crucial role of trusting clinical staff in ‘feeling safe’ (Q24). Others described health professionals who were less experienced with NIV and, in this context, described physical discomfort and fear. Participants who described receiving reassurance and/or perceived staff as experienced in applying NIV, described being able to better tolerate NIV (Q25) and reported symptomatic improvement.

    Discussion

    The aim of this study was to describe the experience of treatment with NIV for acute hypercapnic respiratory failure triggered by a range of underlying aetiologic conditions. Our study enriches understanding of this complex experience by shedding light on the burdens of, and motivations to endure, NIV. Patients described symptomatic benefits (particularly relieving dyspnoea and facilitating sleep) and simultaneously perceived NIV as enabling another chance at life. This builds on Scandinavian research which described how patients' adapt to NIV.17 ,18 While all participants indicated that they would accept NIV again if clinically indicated, this finding needs to be considered in the context of participants' reported sense of compulsion to accept NIV, in order to pursue another chance, but also to adhere to the guidance of their treating team. Participants described feeling passive—as ‘passengers on a journey’—however, they sometimes had accurate understandings of what would relieve their distress. The experience of treatment with NIV was also one characterised by vulnerability that was exacerbated by memory lapses. In this context, the perception that health professionals were experienced in NIV aided the patients' tolerance and adaption.

    An important strength of this and other qualitative research is that it allows deep exploration of a topic facilitating the development of insights, which can be used to drive further enquiry, qualitative and quantitative (detailed below). Although interviewing patients during the inpatient stay in which they underwent NIV is difficult, this is a key strength of this work, as interviews in this time frame have the potential to achieve more accurate recall. In terms of limitations, all participants were recruited from a single centre (albeit with a socioeconomically diverse population) and were English speaking, suggesting some sociodemographic homogeneity. The experiences of potential participants who were too unwell to converse, declined participation, had cognitive impairment or do not speak English may be different. The selection of patients with different causes of hypercapnic respiratory failure might be considered a weakness, but the data underscore the commonality of the experience of acute hypercapnic respiratory failure treated with NIV. In addition, although we have attempted to identify and address potential investigator bias, as in all qualitative work, this is difficult to completely eliminate.

    We describe patients balancing the benefits and burdens of NIV. A Scandinavian qualitative study describes a process similar to this in NIV adaptation.18 Patients in our study reported that NIV often alleviated their breathlessness. A recent systematic review found that the quality of data from randomised clinical trials of NIV did not allow a conclusion as to whether NIV relieved dyspnoea.27 This discrepancy in findings attests to the utility of qualitative studies in capturing lived experience beyond the quantitative symptom assessment measures and speaks to the need for ongoing work in this area. Our study also highlighted the importance of sleep to patients with respiratory failure. While the importance of sleep in stable COPD is increasingly appreciated,28 the suggestion that NIV may aid sleep, and the importance participants place on sleep is novel. The patient descriptions in our study of struggle and suffering related to functional limitation have been elsewhere described.29 ,30 The novelty in our data is that in an acutely ill population, despite these difficulties, participants seek another chance at life.

    Regarding clinical implications, at a minimum, the poor recall described in this study suggests reduced attention during a period of respiratory failure. Interestingly, a study in intensive care patients has correlated lack of recall with delirium.31 As mentioned above, a British study of the experience of NIV reported delirium as a prominent finding.19 With respect to the acute admission, this suggests that clinicians should be alert to the possibility of delirium, sometimes subtle in its manifestations, and treat this important clinical syndrome as needed. Poor attention also has implications for conversations with patients during the acute admission, particularly those conversations that address the patients' preferences for ongoing acute care.

    Taking a longer term view, findings of this study have implications for ACP. Poor recall may inhibit a truly shared understanding between patient and clinician regarding NIV and thus impact discussions about decision-making that may occur after the acute episode. Additionally, the suggestion of impaired cognition during NIV suggests the importance of appointing a proxy decision maker when the patient is well, so this person can assist with decision-making during the acute episode.

    The finding that patients look to ‘another chance’ suggests that they may be receptive to conversations regarding their future, although patients may prefer to discuss this after the acute care episode.32 Health care professionals (HCPs) will be aware that whatever else happens, these patients are likely to experience future episodes of ill health. HCPs might consider using this understanding, along with the insight that patients' aspire to another chance, to develop plans with patients and their families for care during ‘usual exacerbations’ as well as plans for an exacerbation that appears terminal. Framing discussions within the context of ‘another chance’ and/or care for future exacerbations may enable movement away from the ‘prognostic paralysis’ described by others in advanced non-malignant disease.33 These conversations could potentially include discussion of concomitant disease directed care, including life-sustaining treatments (like NIV) along with strategies that aim to alleviate symptoms and suffering (ie, the relevant elements of a palliative approach).34

    Like others, we found that skilled assistance from HCP's was important in facilitating adaption to NIV.17 ,18 Recent work has suggested understanding illness through a lens of health-illness transitions.35 In this model, HCPs, especially nurses, have a critical role in assisting patients to adapt as their health changes.35 The model of health-illness transitions further suggests that one goal for patients who are chronically ill is to become effective managers of their condition(s).35 Patients' understandings of what relieves their distress suggest an avenue towards such self-management.

    Our finding that patients do not clearly distinguish between chronic ill health and exacerbations aligns with the work of Pinnock et al.36 Using the perspective of illness narratives, these authors have suggested that the lived experience of COPD is a ‘chaos narrative’, characterised by the patients' not distinguishing between periods of health and illness, but rather seeing ill health as a part of their life story.36 While our population extends beyond COPD, our finding appears congruent with this perspective. This understanding of illness suggests a different understanding by patients of ‘usual health’ and ‘exacerbation’ to that held by most health professionals.

    Qualitative research allows the development of hypotheses and highlights opportunities for further research. First, the balance between benefits and burdens requires further exploration, with the dual aims of amplifying benefits and identifying patients for whom burden predominates. Following this, treatment strategies that address the needs of patients for whom burden predominates can be developed. Second, the observation that participants ranged seamlessly between describing their experience of NIV and their experience of chronic illness suggests that more research regarding patients' understanding of their ‘usual health status’ versus ‘exacerbation’ might enable clinicians to better understand the patient perspective and thereby better tailor interventions. Third, the prevalence, subjective impact and clinical implications of delirium in this population require further exploration. Finally, the observation that patients' perception of NIV was influenced by staff behaviour raises questions regarding which staff behaviours are and are not helpful in assisting patients with NIV.

    In summary, this study highlights that the experience of treatment with NIV is complex. Patients described balancing the benefits and burdens of treatment in pursuit of another chance at life. The attitudes and behaviour of HCPs may influence patients' adaption to NIV. Patients' poor recall of NIV treatment has implications for their acute care and ACP. An enhanced understanding of the person-focused perspective has significant potential to inform clinical care and drive further research.

    Acknowledgments

    The authors thank the staff of St George Hospital for their support of this project, especially Ms Mary Dunford, Dr Elizabeth Clark and Dr Steven Lindstrom. They specially thank the participants for their willingness to be interviewed, their honesty and their insights. Without these participants, this research that allows them to help others would not be possible.

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    Footnotes

    • Contributors TAS involved in literature search, preparation of figures and tables, study design, data collection, data analysis, data interpretation and writing of manuscript and is the guarantor of the study. MA involved in the preparation of figures and tables, study design, data analysis, data interpretation, editing of manuscript and expert palliative care input. CRJ involved in the preparation of figures and tables, data interpretation, editing of manuscript and expert respiratory medicine input. JMI involved in the preparation of figures and tables, study design, data interpretation, editing of manuscript and expert palliative care input. PMD involved the preparation of figures and tables, study design, data analysis, data interpretation, editing of manuscript and expert cardiological and nursing perspective.

    • Funding JMI's research work on this paper was undertaken, in part, with funding support from the Cancer Institute New South Wales Academic Chairs Program.

    • Disclaimer The views expressed herein are those of the authors and are not necessarily those of the Cancer Institute NSW. There are no other sources of funding for this work.

    • Competing interests TAS has received personal fees from Astra Zeneca, Novartis, the Hospital Pharmacists Association and GlaxoSmithKline for educational symposia to medical, nursing and allied health staff. JMI reports grants from The Cancer Institute New South Wales Academic Chairs Program during the conduct of the study.

    • Ethics approval South Eastern Sydney Illawarra Area Health Service Human Research Ethics Committee—Central Network.

    • Provenance and peer review Not commissioned; externally peer reviewed.