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‘I wish I knew more ...’ the end-of-life planning and information needs for end-stage fibrotic interstitial lung disease: views of patients, carers and health professionals
  1. Sabrina Bajwah1,2,
  2. Jonathan Koffman2,
  3. Irene J Higginson2,
  4. Joy R Ross1,3,
  5. Athol U Wells3,4,
  6. Surinder S Birring5 and
  7. Julia Riley1,3
  1. 1Department of Palliative Medicine, Royal Marsden and Royal Brompton NHS Foundation Trusts, London, UK
  2. 2Department of Palliative Care, Policy & Rehabilitation, King's College London, Cicely Saunders Institute, London, UK
  3. 3National Heart and Lung Institute, Imperial College, London, UK
  4. 4Department of Respiratory Medicine, Royal Brompton NHS Foundation Trust, London, UK
  5. 5Department of Respiratory Medicine, King's College Hospital, London, UK
  1. Correspondence to Dr Sabrina Bajwah, Department of Palliative Medicine, Royal Marsden Hospital, Chelsea, London SW3 6JJ, UK; sabrina.bajwah{at}


The importance at the end of life of developing effective communication and meeting information needs is recognised as being central to enhance patient and family centred experience. This qualitative study aimed to explore understanding of the disease, preferences regarding end-of-life planning, and views on communication and coordination of care in patients with Progressive Idiopathic Fibrotic Interstitial Lung Disease (PIF-ILD). Twelve semistructured in-depth qualitative interviews were conducted among PIF-ILD patients and carers attending two London hospitals. Six Interviews were also conducted among health professionals from one London Hospital, a palliative care service and primary care. There was good understanding of the terminal nature of the disease among both patients and carers, but a poor understanding of prognosis, and how the disease would manifest at the end stages. Both patients and carers expressed a wish to receive more information from clinicians. Health professionals recognised the difficulty of balancing information needs with maintaining hope. No participants were aware of any palliative care input, and no participants had considered important end-of-life issues, such as preferred place of care and preferred place of death. Our work shows that palliative interventions need to be developed for this group of patients which should aim to improve communication and coordination of care, while facilitating discussions surrounding information needs and important end-of-life preferences.

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There are at least 5000 new cases of progressive idiopathic fibrotic interstitial lung disease (PIF-ILD), including idiopathic pulmonary fibrosis (IPF) each year in the UK, with a similar number of deaths.1 Median survival from diagnosis in the UK is approximately 3 years.2 ,3 Only a minority of patients are suitable for lung transplantation, and there are no other viable treatment options once the disease is advanced and irreversible.4

PIF-ILD patients are reviewed in general and specialist respiratory clinics. The vast majority of their care is provided in the acute hospital setting. There is currently a deficiency in referral to palliative care services despite a high symptom burden and poor prognosis.5 In addition, nearly all these patients will die in hospital with repeated hospital admissions in the last year of life.5 There is a clear need to deliver effective end-of-life care.5

Research conducted in other non-malignant disease groups has identified that there is very little, or no discussion, between patients, carers and health professionals directly addressing patients’ and carers’ concerns.6 ,7 This, in turn, has been shown to affect psychological morbidity.8 Quantitative analysis of the perceptions of illness in IPF patients and their family members in one study is limited, as numbers were small (n=32), but has shown that most patients understand their disease to be a ‘serious condition’, and that family members understand the patient might not survive (n=16).9 Another quantitative study has shown that patients and carers in the USA feel there was a lack of information at the time of diagnosis.10 Qualitative methods have been shown to provide a richness of data, with emergent theories, and allow the researcher to delve deeply into issues.11 Previous qualitative studies in patients with IPF have shown significantly impaired health-related quality of life.12–14 However, none of these studies have involved carers and health professionals. Interviewing carers and health professionals would allow a deeper understanding of the issues involved and triangulation of findings. In addition, there have been no qualitative studies to explore PIF-ILD patients’ end-of-life preferences/planning and information needs. This information is central to enhancing end-of-life interventions.

This qualitative study aimed to explore (1) patients’ and carers’ understanding of their disease (specifically in areas surrounding prognosis), (2) patients’ and carers’ preferences regarding end-of-life planning and (3) patients’, carers’ and health professionals’ views on communication and coordination of care.

Material and methods

Study design and setting

Semistructured interviews were conducted among PIF-ILD patients and carers attending the Royal Brompton (RBH) and Kings College Hospital (KCH) NHS Foundation Trusts between December 2010 and March 2011. RBH is a specialist ILD centre in central London. The unit has one of the largest diffuse lung disease patient populations in the world, with over 500 new referrals a year from across London and the surrounding counties. KCH represents a tertiary hospital with a specialist ILD clinic in the southeast of London. KCH serves a geographical area characterised by material and social deprivation, in addition to a large population of black and minority ethnic communities.

Interviews were also conducted among health professionals from RBH, St Christopher's Hospice and those working in primary care. St Christopher's Hospice is part of a palliative care service which delivers palliative care across a number of settings in South London.15


We identified patients who fulfilled the following inclusion criteria: a diagnosis of non-specific interstitial pneumonia, IPF and idiopathic interstitial pneumonia, as classified by the American Thoracic Society/European Respiratory Society criteria16 with a percentage-predicted transfer factor <40%, and an ability to understand and speak English fluently. Carers and health professionals involved in the care of these patients were also identified.

A purposive sampling frame was developed to recruit a diverse patient population with respect to age, respiratory or cardiovascular comorbidities, community palliative care and carer support. SB attended ILD clinics to recruit participants. Those under 18 years of age with cognitive impairment, or those unable to provide informed consent, were excluded. For health professionals, a wide range of multidisciplinary members was sought from both the primary and secondary care setting.

The study was approved by the local ethics committee, and written informed consent obtained.

Data collection

The interviews were informal in style, and loosely followed a topic guide that was initially guided by review of the literature. This topic guide was piloted prior to use. Interviews began with a general discussion about what patients understood by their disease and its prognosis, and then progressed to explore end-of-life preferences and communication-related issues. Prompts were used to elicit further information. A list of questions appears in box 1. A similar adapted interview guide was used for carers and health professionals.

Box 1

Patient semistructured interview schedule

  • What is your understanding of your disease and how do you see your illness progressing in the future?

  • Have you made any decisions about your treatment and care when you are less well?

  • What do you think about current communication between health professionals?

  • What do you think about information provided to you about the disease?

  • Have you made any plans for when you are less well/end of life?


All interviews were audio-recorded, transferred verbatim onto a secure transcription database, and then imported into NVIVO 9 software to facilitate analysis using the constant comparative method.17 Each transcript was subject to line-by-line axial coding by SB. Codes were scrutinised for internal consistency through an iterative process. Codes and subcodes were tabulated during the charting process to allow abstraction and synthesis of themes. The complete coding frame and sample comparison were reviewed by SB, JK and IJH to confirm the analysis and interpretation. To maximise analytical rigour, a selection of the interviews was reviewed by a second researcher (JK), and consensus achieved.18 Excerpts from the interview transcripts are presented below, to illustrate themes. All participants’ names have been changed to preserve anonymity.


Sample characteristics

Twelve patients were approached during the course of the study. Four declined to be interviewed; two patients did not feel that they had the energy, and two did not have the time. Five carers were approached and only one declined (he did not wish to leave his wife). All health professionals approached agreed to take part in the interview. Eight patient participants (four from RBH and four from KCH), four carers (from RBH) and six health professionals agreed to be interviewed. The health professionals comprised an ILD physiotherapist, ILD clinical nurse specialist (CNS), ILD consultant, community palliative care CNS, palliative care consultant and a general practitioner. All interviews, except one, were conducted alone. The carers and patients interviewed had no relationship with each other. The main characteristics of the patients and carers are presented in table 1.

Table 1

Description of participant characteristics (names changed to ensure confidentiality)


Five main themes emerged from the qualitative analysis: (1) making sense of the inexplicable; (2) end-of-life information needs; (3) sources of information; (4) end-of-life planning, decision making and care and (5) coordination of care.

Making sense of the inexplicable

Patients and carers held varying views of what their illness meant to them. For example, Penny described how her husband who had advanced IPF had become fixated on his health since becoming ill. She recognised that the disease was at the forefront of his mind and that he needed to keep talking about it, but she felt that it had taken over his life. He talks about his health quite a lot … we can be talking about something completely different and it's suddenly back to (...) to the health … (Penny, wife of James).

Patients, such as Peter, in his 60s and with advanced IPF, were shocked at the profound changes the disease had brought to their physical state. Consequently, they had considerable difficulty coming to terms with the loss of who they had been and what they had now become: Looking at myself in a full length mirror and seeing those legs that used to score 20 goals a season, look as those they are a pair of (...) match sticks, so the weight, not weight loss, muscle loss in my legs came comes as a shock to me … (Peter).

Ruth, a younger Black Caribbean woman in her 50s, could not fully understand the rapid deterioration in her health. She felt challenged by the lack of control: You know (2) it's just (...) really frustrating to tell you the truth (1) these things are happening to my body (...) that I can't do anything about it (higher pitch voice). (Ruth).

Patients and carers all appeared to understand that the disease was affecting the lungs and restricting ability to breathe, but had limited understanding of the exact mechanism involved, its poor prognosis, or how the disease may manifest in the end/terminal stages. Most participants understood the gravity of the diagnosis, but this realisation had been gradual. Joan, in her 50s, and wife of Paul, who had rapidly advancing IPF, reported her realisation had been precipitated by the gradual deterioration in Paul's health, rather than any information provided. As Paul found it increasingly harder to cope, this had forced them both to accept that he was never going to improve, and that death ‘was not going to be pleasant’.

End-of-life information needs

All participants shared a common sentiment about the lack of information to help plan for the future. For example, two patients, Jim and Peter, both wished they knew more about their disease and its likely outcome. Central to this was a wish to understand exactly how they would deteriorate at the end of life. This is best illustrated by Jim who was aware he knew very little about his fate, but at the same time felt ambivalent about wanting to ask health professionals for information; he explained he was deeply apprehensive about their reply, and had, at times, wanted to remain in the dark: I haven't sort um I haven't really discussed (1) um (2) how it will develop with anybody, but you know that may be me me own fault um if I don't talk about it, to somebody, and you don't know then I've got nothing to worry about (laughs). (Jim).

Importantly however, patients wanted to have the option of gathering further information, and being able to discuss issues, if they wished, which they did not feel was currently the case.

All carers wanted to know more about their dependants’ situation, but also wanted to maintain hope. Health professionals recognised the importance of delivering information: Empowering the patient with information about what their disease is (...) eh … what's likely to happen and the treatment so you're involving them very early on so they have a good understanding of the whole … (...) package of what's wrong with them. I think that is the single most import thing that we can do (...) eh to help them to understand. (ILD consultant).

However, health professionals also recognised the complexities of delivering information in their attempt to preserve a balance between hope and realism: I think sometimes the delivery is wrong (...) which could be a problem. Um what you don't want to do is completely say ‘you're going to die’ what you want to do is give them some hope … (ILD CNS).

Sources of information

Despite health professionals recognising the importance of providing clear and complete information to patients to best prepare them for their end of life, patients and carers had resorted to obtaining information from other sources. For example, Jane, who had lived with her mother, Anne (advanced IPF) for much of her adult life, had been the one to break the news of the poor prognosis. She had found this distressing: Myself and my husband got on the internet and found out ‘well actually life spans 5 years,’ she had no idea, no one's even told her that (...) so we go ‘how do we tell her this’ (...) so actually the actual breaking the news was myself … (Jane).

Health professionals recognised this was occurring and the pitfalls of this: I think that the healthcare professionals involved tend to … (...) tell patients verbally a lot of information, but that's not the same as having written information that they can take away, digest and share with their family … they'll go and look it up on the internet and read lots of horror stories perhaps (...) and I think what we should be better at is providing our own … written information (ILD consultant).

The actual timing of information was a concern for both patients and health professionals. Patients felt that health professionals should be able to best judge when discussions about end-of-life planning, and care should take place, as they had developed experience in undertaking these difficult conversations. However, health professionals had reservations: People often um have (1) um (4) you know attend clinics where there's decisions taken about their management um but (2) maybe not um enough thought and enough time is given to giving them (1) information really about things.’ (Palliative Care consultant).

End-of-life planning, decision making and care

No patients, and no patients cared for by the carers, reported they had formulated end-of-life plans, or considered end-of-life preferences, such as preferred place of care or preferred place of death. A number of carers were aware of broad preferences, but in-depth conversations had not occurred. All patients, and all carers, realised the importance of such conversations, but did not know how to initiate conversations with their loved ones.

Worryingly, some participants, like Peter, held unrealistic perceptions of how they were likely to die, which had led them to not consider important end-of-life preferences:

SB: Have you made any decisions about how you want to be looked after? (2) In the time leading up to the big day? No no I haven't in that respect except that um no I haven't because I don't expect to be looked after, I just expect sooner or later I'm going pop off the edge of the cliff. So I won't need looking after. (Peter).

No patients, or carers, reported palliative care involvement stating that they were not aware of any such services. All health professionals felt that there was still an association of palliative care with malignant disease, and a failure to appreciate that fibrotic lung disease towards the end stage behaves much like malignant disease and causes unpleasant symptoms. However, all health professionals felt that all patients should be referred earlier for palliative input, and have more symptom control interventions. Interestingly, health professionals recognised when faced with a patient, they were not always aware of the need to deliver symptom control. The patients get used to the breathlessness, their doctors and nurses get used to the breathlessness, and (...) the penny doesn't drop that maybe they need to have um (1) to use drugs for the symptomatic relief of breathlessness. (GP).

Coordination of care

Patients and carers reported being very satisfied with the specialist respiratory care received. However, communication between health professionals and coordination of care was flagged as a problem by all participants. Penny, wife of James stated: I think they try to liaise between each other but it so often falls apart … there is really a short coming amongst um getting information from one aspect of the medical profession to the other.

And also by Jane, daughter of Anne, whom it had clearly affected: The breakdown of communication over in [local hospital] has been (...) dreadful for someone who's got (...) supposedly um … you know a terminal illness, it's been dreadful.

This sentiment was supported by health professionals who were frustrated at poor communication, and recognised that vast improvements were needed to ensure adequate coordination of end-of-life care. We need to really (...) review the way we think about people who've got (...) um rapidly progressive non malignant disease or people who've got who are literally dying from non malignant disease, the kind of communication we expect around cancer (...) really should happen around (...) these other diseases, so take IPF (...) um (...) … I think that the quality of communication has got to be a lot better, these people don't get treated properly … (GP).


This qualitative study aimed to explore understanding of PIF-ILD, preferences regarding end-of-life planning and views on communication and coordination of care. This study adds to previous quantitative knowledge in these areas, and highlights important issues surrounding end-of-life preferences, inadequate information provision, and poor communication.

We identified a good general understanding from both patients and carers that PIF-ILD is a serious illness which is terminal. This finding supports what has been noted in a previous quantitative study.9 Interestingly, in our study, this realisation appeared to be a gradual process, and often precipitated by deterioration in health rather than any formal information provided. As a result, they were not adequately prepared, nor had they considered important end-of-life issues.

There is no previous literature on end-of-life planning and decision making in this disease group. In our study, no patients had made end-of-life plans. In addition, carers had not had conversations concerning end-of-life decisions, such as preferred place of care and preferred place of death with their loved ones. This supports similar findings in other non-malignant diseases, such as heart failure.8 Challenges were apparent. First, some carers did not know how to broach the subject. Second, patients had unrealistic perceptions of how their disease would progress, and what the terminal stages would manifest as. These led to unrealistic perceptions that they would not need care or help at the end of life. However, the willingness of participants to discuss their preferences was clear.

Clinicians caring for patients with PIF-ILD face a challenging task regarding information needs for both patients and carers. They are a group of conditions that the general public is, on the whole, unfamiliar with, and so, natural introductions to questions regarding prognosis and end-of-life care are usually not initiated by patients themselves. By contrast, with malignant disease, this places the onus for developing such conversations almost completely with the healthcare professional, in the main, a respiratory physician. In the context of busy clinic appointments, during which information regarding diagnosis, treatment options and medical care also have to be communicated, it is not surprising that the uncomfortable topic of end-of-life care is neglected. However, this study shows the importance that patients and their carers place on these issues.

Previous studies have identified that patients are often prescribed subtherapeutic doses of information; a recent quantitative survey of IPF patients and carers conducted in the USA reported that two-thirds of respondents felt there was a clear lack of information.10 In the cancer setting, clinicians tend to underestimate the amount of information that patients require.19 ,20 In fact, a large multicentre UK cancer study (2331 patients) showed that 87% of participants wanted to know all information, both good and bad news.21 In our study, all patients and carers felt that information provided about the future was lacking and could be improved. All health professionals recognised the importance of providing information about prognosis and end of life, with accurate prognostication and timely conversations to ensure that patients and carers had the opportunity to make end-of-life plans. Despite this, many carers reported receiving information from other sources, for instance, the internet; the delivery of difficult news that the disease was terminal was not from the doctor. Patients and carers felt it was the health professionals’ responsibility to provide them with information, and to be able to judge what information should be provided, and when. However, health professionals did not feel that this was done well. In addition, many patients in the cancer setting assume that the doctor would have told them everything relevant.22 This was similar to our study, where patients were trusting in the skills of doctors. Literature repeatedly states that patients have high information needs and wish to be kept well informed about their illness regardless of diagnosis.23 ,24 However, while the physical care skills of respiratory clinicians may well be excellent, this is not necessarily the case as far as effective communication of end-of-life issues are concerned.25 It may be the case that there is a purposeful non-disclosure of information which may result from poor training, or a lack of awareness of the impact that a failure to disclose has on patients and carers.25 Our study showed that patients and carers wanted to know, but might be too afraid to ask. Clinicians need to anticipate this, and continuously assess patients’ and carers’ information needs throughout the disease trajectory, and although discussions about prognosis in time-pressured clinics are difficult, healthcare professionals can learn effective communication skills to assist them in delivering this information sensitively.26–28 There is an increasing case for properly resourced ILD services to be developed, similar to those provided for patients with lung cancer, in which a specialist nurse and early palliative care involvement is easily accessible. This study supports such a model.

It has been noted that there is inadequate communication between health professionals.29 Our study also found that there was poor communication between the acute and primary care setting leading to frustration for patients, carers and health professionals alike. There was also a feeling that malignant diseases had much better communication surrounding end-of-life issues than was currently being seen in PIF-ILD patients. It is not clear whether this is due to non-recognition of the terminal phase, or inadequate provision for communication.

There are a few limitations to this study. The number of subjects interviewed is small. However, analysis showed no further new themes emerging, suggesting that there would have been no benefit to conducting further interviews. In addition, through integration of data from the three groups of participants, the triangulation of findings has contributed to rigour. All subjects had a percentage-predicted transfer factor less than 40%, indicating severe, if not terminal, disease. There can be marked heterogeneity in progression within the disease population. However, there are clear needs in all these patients and carers. The cross-sectional design of the study did not allow for exploration of the progression of end-of-life planning and information needs with time. Despite aiming to recruit patients who had palliative care input, and those who did not, this was not possible, as very few patients attending the clinics had been referred to palliative care. All patients and carers were recruited from specialist ILD centres. Patients and carers attending non-specialist respiratory clinics may have different end-of-life planning and information needs to the ones recruited in this study.

This is the first study to explore preferences regarding end-of-life planning and communication between patients, carers and health professionals on end-of-life issues in this group of patients. Our work shows that any palliative interventions developed should aim to improve communication and coordination of care, while facilitating discussions surrounding information needs and end-of-life preferences. Further research is needed to develop specific interventions and care pathways, and to evaluate outcomes for patients and carers that include end-of-life planning and communications needs.


Philippa Johnston and Shivali Trivedi for their verbatim transcription of audio to written.



  • Contributors All authors contributed to the conception, drafting of the article and had final approval of the version to be published. All interviews were conducted by SB. Analysis was conducted by SB and JK.

  • Funding This research was part funded by a Biomedical Research Unit grant from the Royal Brompton Hospital. Remainder of the funding was from the Royal Marsden and Royal Brompton Palliative Care Research Fund which is supported by charitable donations. None of the funders had input into analysis of results or drafting of manuscript.

  • Competing interests None.

  • Ethics approval South West London REC 4 ref: 09/H0806/74.

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