Objectives Communication and planning for heart failure (HF) care near the end of life is known to be complex. Little is known about how the patient experience of palliative assessment and communication needs change over time, and how this might inform management. Our aim was to explore experiences of giving or receiving a prognosis and advanced palliative care planning (ACP) for those with HF.
Methods We carried out a longitudinal grounded theory study, employing in-depth interviews with 14 clinicians (primary and secondary care) and observations of clinic and home appointments, followed by a series of interviews with 13 patients with HF and 9 carers.
Results Overall, the majority of participants rejected notions of HF as a terminal illness in favour of a focus on day-to-day management and maintenance, despite obvious deterioration in disease stage and needs over time. Clinicians revealed frustration about the uncertain nature of HF prognosis, leading to difficulties in planning. Others highlighted the need to deliver problem-based, individualised care but felt constrained sometimes by the lack of multidisciplinary ACP. Patients reported an absence of prognostic discussions with clinicians.
Conclusions This is the first study exploring the experiences of prognostic communication at all stages of HF. Findings raise questions regarding the pragmatic utility of the concept of HF as a terminal illness and have implications for future HF care pathway development. Findings support the incorporation of a problem-based approach to management, which recognises the importance of everyday functioning for patients and carers as well as the opportunity for ACP.
- Heart failure
- Chronic conditions
- End of life care < Ethics
- Terminal care
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There is a tension between regarding heart failure (HF) as a chronic deteriorating condition or as a terminal illness requiring palliative care. This distinction has implications for the way HF is managed and how patients are involved in their care. HF is a serious, progressive illness affecting around 750 000 individuals in the UK alone.1 Prognosis is poor and characterised by progressive functional restriction and limited quality of life.2 Around 50% of patients with HF will die within 4 years of diagnosis,3 and 50% of those categorised as having New York Heart Association class IV HF will die within 1 year.4 Advanced palliative care planning (ACP) is therefore recommended as a mode of care in HF, and according to the National Institute for Health and Care Excellence guidelines, palliative needs should be ‘identified, assessed, and managed at the earliest opportunity’.5 However, in the UK only a small minority of those with HF are referred to palliative care services.6 The majority die in acute hospital wards, despite the fact that many indicate domiciliary settings as their preferred place of death.7
The reasons behind low rates of palliative care referral and ACP in HF are likely to be complex and are poorly understood. HF is an unpredictable disease with an uncertain trajectory, making it difficult for clinicians to accurately predict the last six months of life. Talking about death is seen as ‘taboo’ by many clinicians, who often struggle to discuss prognostic issues with patients,8 preferring instead to focus on active management of HF. Recent work, however, suggests that communicating a prognosis to a patient reduces stress caused by uncertainty and ultimately enhances positive treatment outcomes.9 The preferences of patients to discuss their prognosis vary. Many are unaware of the serious, life-limiting nature of their condition10 and are most likely to prefer prognostic discussion during a disease exacerbation such as hospitalisation.11 Most, but not all, patients prefer and expect prognostic discussions to be initiated by their clinician.12 Sensitive discussions of palliative issues are complicated by the fact that many patients experience symptoms which confound their ability to think clearly—particularly during an exacerbation—and to communicate their wishes as the disease worsens.13 This suggests the need to discuss prognosis early in the disease trajectory. However, little is known about how prognostic discussion preferences change over time, and how discussions (and subsequent care management) are approached by clinicians.
This study is the first in the field to take a longitudinal approach to explore patient, carer and clinician attitudes and approaches to discussing palliative considerations with patients in different stages of HF. The aim of this study was to explore patients’, carers’ and clinicians’ experiences of giving or receiving a prognosis and managing the transition point to palliative care for those with HF.
A constructivist grounded theory design14 informed the conduct of a series of semistructured interviews and observations. Constructivist grounded theory, developed by Kathy Charmaz, differs from classical grounded theory in that more focus is placed on how individuals construct different realities and multiple meanings within their life-world, and embraces the role of the researcher themselves in constructing a grounded theory. Charmaz argues that classical grounded theory is an overly prescribed method, using inflexible coding frameworks and jargon, and represents an outdated requirement for methods to be aligned to a positivist paradigm. Prognostic communication and understanding is a particularly nuanced area of study, balancing clinical guidelines, appropriately timed and worded conversations, and the needs and expectations of patients, carers and clinicians. Hence, a constructivist grounded theory methodology was deemed most appropriate for the current study.
Patients with HF and their family carers were purposively sampled from a cohort of patients treated within a specialist HF clinic in a district general hospital in the northeast of England. Clinicians with a range of years of experience working with patients with HF in primary and secondary care, in the same National Health Service (NHS) trust in the northeast of England, were also purposively sampled and approached via existing direct and indirect links with Durham University. Patient appointments in the home, and in clinic with the HF team in secondary care, were observed prior to interview to provide an opportunity to discuss this clinical encounter at interview. A semistructured interview topic guide was developed, informed by published literature, advice from patients with HF and clinical colleagues, and pilot tested. Patients and carers were interviewed again 6 months after their initial interview to explore any changes in reported prognostic communication or management. All interviews were conducted by RS (MSc, female, PhD student at time of the study), an experienced qualitative researcher with no prior connection to interviewees. Interviews lasted between 30 and 60 min, were audio recorded and transcribed verbatim. Field notes were taken after interviews. Patients were purposively sampled within three diagnostic groups (based on clinical assessment of severity by their treating clinician); see table 1 for participant characteristics. A total of 17 patients or carers participated in a 6-month follow-up interview; at 6 months, one patient and carer dyad was uncontactable, another dyad withdrew from the follow-up interview due to ill health and one patient died. There were 53 interviews and 11 observations in total, and recruitment ceased once data reached saturation.
Interviews were held at patients’ and carers’ homes, or at the clinician’s primary place of work, between March 2012 and March 2013. Observations were held either at the HF clinic or at the patient’s home, depending on which form of clinical appointment the patient was offered. Patients and carers were interviewed separately where possible in order to privilege individual narratives but were given the choice of individual or joint interviews; 3 of 13 patients chose joint interviews.
Observation and interview data were analysed using constructivist grounded theory,14 using open, focused and theoretical coding. Open coding (line by line) was conducted by RS, with a subset of transcripts coded by HC. Inter-coder agreement was evaluated weekly at study team meetings, using an iterative, cyclic approach to refine codes. Codes, and later themes and theories, were stored and managed in Microsoft Excel. Focused coding to categorise and explain groups of open codes was then conducted, and intercoder agreement evaluated. The final stage of coding, theoretical coding, then refined focused codes further to allow a picture to emerge of relationships between categories, ultimately revealing core and subcategories from the data. Data saturation was evaluated regularly within the study team during the (concurrent) data collection and analysis, and was deemed to be reached once open and focused coding revealed no new codes emerging from the data.
In summary, most clinicians rejected the concept of HF as a terminal illness in their everyday practice. They expressed uncertainty about roles and responsibilities for palliative care, alongside a reluctance to actively plan for end of life for individual patients. In contrast, some clinicians discussed the need to deliver problem-based, individualised care but felt constrained by the perceived lack of multidisciplinary advanced care planning. Most patients and carers talked about death and dying in general terms but felt that HF-specific end-of-life considerations did not apply to them. They placed much more importance on understanding the emergence of their symptoms and negotiating everyday restrictions. Most patients had not made any decisions about advance care directives and reported no prognostic discussions with clinicians. This was borne out by the fact that during observations prognosis was only discussed once in the course of many hours of clinical contact. Overall, the majority of participants rejected notions of HF as a terminal illness in favour of day-to-day management and maintenance, despite obvious deteriorations in disease stage and needs over time.
Understanding the diagnosis
Hearing the words ‘heart failure’ was described as a shock to most patients and carers. Most did not understand the diagnosis, panicking at the word ‘failure’, subsequently seeking clarification and reassurance from their clinician. Patients and carers spoke of hearing, and appreciating, strong reassurances from their clinicians that HF did not mean the heart was going to ‘fail’ (interpreted as to stop abruptly). As a result, the term ‘heart failure’ was often avoided by clinicians, who felt it was too emotive or inappropriate for the patient to hear:
I mean, how would you … explain heart failure to someone? I don’t like the term heart failure because failure just sounds like you’re about to pop it which generally speaking they’re not. (GP4)
Appropriateness of clinical role
Specialists (ie, cardiologists in secondary care) felt that it was ‘not their job’ to consider and/or initiate palliative care, or to discuss it. Many senior clinicians felt that their role ended at the point at which symptoms indicated the approach towards end of life.
I tried to control it as best I can, and if I can’t do any more, it’s somebody else’s job to sort that out. (SP2)
Many specialists felt they did not have an adequate knowledge of the palliative approach, which then made them reticent to discuss palliative care. HF nurses felt that they were better placed to discuss prognostic and palliative issues, particularly during home visits as they felt they had more time to build up a relationship with the patient and their family, and to discuss these issues at length if needs be. This was supported by specialists who felt they had not had the opportunity to spend enough time with the patient to make an accurate prognosis, or to communicate that prognosis. Specialists in particular felt underskilled to discuss prognosis, particularly at earlier stages of the illness. This often resulted in the topic remaining hidden:
It’s something [communicating prognosis] that I’m probably not very good at really … I prefer to avoid it, if they’re coming in and saying I’m fine, then I can’t say oh well this may kill you in five years. (SP3)
Clinic appointments were regarded by all clinicians as an inappropriate place to discuss prognosis due to a lack of time.
Timing of information
Some clinicians discussed an underlying need in themselves to discuss prognosis early, ideally at the point of diagnosis, but felt that this was not achievable ‘at the coal face’:
It doesn’t always work that way in practice. If that patient is in shock or in denial or very upset still about the fact that they’ve got heart failure, because the term itself is a scary term. (HFN3)
This led most clinicians, regardless of specialty, to delay conversations about prognosis and palliative care until often very late in the disease trajectory, or at all:
Interviewer: At what point would you have the conversation about prognosis? Respondent: It tends to be when people are really, completely, immobile with breathlessness I think. When it’s very obvious. (GP2)
Some clinicians felt that this delay was suboptimal, and GPs in particular spoke of a comparison with cancer and how they would routinely discuss prognosis in cancer but not HF. The majority of clinicians regardless of clinical specialty felt it was inappropriate to discuss prognosis near to the point of diagnosis. Some GPs and specialists felt very strongly that it was cruel to discuss prognosis near to diagnosis:
It’s almost like saying, you know, I’m afraid you’ve got heart failure, you’d better start thinking about how you’re gonna die. I think that is almost cruel. (GP1)
Several GPs discussed their uncertainty about when to start involving palliative care services even though they felt that palliative care was part of their remit, being ‘ultimately the responsible clinician for that patient’ (GP1). This uncertainty led to delaying conversations about palliative care and the commencement of palliative care medications. GPs felt the distinction between active and palliative care in HF was not always easy to make, with a lack of clear criteria.
Requesting a prognosis
The majority of patients and carers said that they did not understand and/or did not want to know their prognosis. They described their increasing age in relation to death as a general concept; however, most participants did not speak of a direct connection between HF and a decrease in life expectancy. Younger participants spoke of wanting to know what to expect in the future, whereas older, more sick participants were more dismissive of the possibility of seeking a more direct prognosis:
I haven’t really done anything with that [discuss future with heart failure nurse]. I just thought in my own mind, I haven’t had any confirmation, that I will live till I’m 100 years old, so to speak. (PT12)
I wouldn’t want to know [about prognosis]. It’s something that is unsaid. I don’t think people would like to know. Well, some people do. There might be a few, but I think the majority of them are prepared to live on in ignorance. (PT10)
A minority of patients spoke directly about prognosis and death with their clinicians. These questions and concerns were reported as not being answered directly, which caused anxiety:
Well, this is going to sound really strange but the last time I went to see them, I said is this a serious condition? [Heart failure nurse] said it is a chronic condition. I asked am I going to drop down dead? She said not while we’re here to look after you, you won’t! And it’s always in the back of my mind that something might happen but they’ve assured me that nothing will happen. But it’s strange, you know when you get this it’s hard to see that nothing will happen, can you understand what I mean? It doesn’t feel right. (PT7)
Others spoke of the shock at hearing about end of life in relation to HF, and being reassured by the clinical team that it did not apply to them:
The only, the time when it was really brought home to me, was at one of the heart failure meetings. […] Suddenly I heard the words ‘end-of-life care’, and I was absolutely taken aback. Because I thought, oh my God, you know, it kind of hit me like a sledgehammer because I hadn’t thought that far ahead. [Heart failure nurse] just sat beside me and said, you know it’s not going to happen next week or next year, you know, you’ve got a long time to go yet. But it was just sort of, it was the first time that I’d ever sort of experienced those words in connection with my own situation. (PT15)
While specialists and GPs reported very few patients with HF asking directly about their prognosis, HF nurses reported this happening often. However, all clinicians felt that quite often patients and carers did not take on board prognostic information when it was offered:
Sometimes with some patients, despite your best efforts of what you think you’ve said, the patient clearly hasn’t taken it in, or doesn’t want to hear, or doesn’t understand what you’re saying. (SP1)
Framing and staging palliative care discussions
When palliative care discussions did occur, GPs and specialists discussed framing their conversations around a change of medication. This was in contrast to HF nurses who viewed it both as a change of medication and a change in the wider paradigm of treatment:
I would probably sort of say [to the patient] that there are other things that should help you, which keeps you comfortable, and we are looking at morphine which might help you with the pain, might keep you, reduce the breathlessness. (SP5)
All groups reported both ‘trickling down’ prognostic information and indirect/abstract communication about the progressive and/or terminal nature of HF:
I always say it can’t be cured. We can never cure it, a bit like diabetes, sometimes I say that, it can be an awful disease, it can be well managed but we can’t cure it. (HFN1)
Maintaining hope for the patient was regarded by all clinician groups as vital to the holistic treatment of HF. This was given as a reason why palliative care discussions were framed in an active care treatment paradigm (ie, change of medications), and indeed why much prognostic information was left uncommunicated:
And always, even if I have a dying patient, I still talk to him and to the family and say that there is still chance that he may pick up. I don’t give them the certificate that they will die very soon. (SP6)
An unknown future
Patients rarely engaged in discussion about palliative care; instead their focus was on negotiating everyday restrictions. However, death and dying was spoken about openly in a general manner (ie, without specific relation to their HF) by almost all patients and carers.
One participant described an unspoken understanding between themselves, their carer and their clinical team of the progressive nature of HF. When probed further on their understanding of prognosis, they replied:
I think, it’s a mutual understanding that it will gradually get worse as the years go on, and we’ve just got to accept that. [Interviewer: Would you prefer that [your clinicians] discuss prognosis with you?] I take it every day as it comes. I’m quite happy with that. (PT8)
Comparisons were often made between knowing vaguely that the disease would progress—with the shorter term, more important hope that the future would hold some improvements.
We just want some future, which at the moment we don’t seem to have one. You just don’t know what’s going to happen next. (CR10)
Well I mean, we haven’t really thought about asking [about prognosis]. But, as far as I know about longevity of life is, just the way they monitor it and keep her on the medication, and look after itself better, the better it will be. I don’t know whether she has another 30 years, 20, or 10 years. I don’t know. (CR7)
Early discussions about HF prognosis and palliative care needs are recommended within current UK and international policy guidance.15 16 This study demonstrates that patients and carers mostly preferred not to discuss prognosis with specific reference to HF, even in later stages of HF, and focused instead on managing everyday restrictions while accepting the future as largely unknown and unpredictable. Clinicians, particularly cardiology specialists in secondary care, felt underskilled in discussing prognostic and related palliative care issues, and were reluctant to conduct discussions in an outpatient setting (clinic). This supports existing evidence on this topic17 and highlights the importance of extending and investing in ‘breaking bad news’-type training to clinicians treating non-cancerous progressive illnesses.
An imperative to discuss prognosis earlier was recognised by most clinicians regardless of specialty at a hypothetical level, but most felt this was almost impossible to apply in practice. For many clinicians, palliative care was not a feature of their clinical approach to HF, and not a regular component of their interactions with patients and carers. Others, particularly specialists and GPs, felt it was unnecessary to discuss the prognosis of what they viewed was a chronic condition, and that to do so would impede patient and carer quality of life. Prognostic and palliative care considerations were often delayed by clinicians until the patient was very ill, with a concomitant delay in conversations on this topic, and subsequent advanced care planning or transitions.
This study supports prior work exploring clinician barriers to prognostic and end-of-life care discussions and advanced care planning. It does not, however, support research indicating that most patients prefer to speak about prognosis in HF,10 18 even when their illness is late-stage/serious. The reasons for this are complex. Patients and carers in this study were on the whole reluctant to discuss prognosis with their clinical team, taking the lead from their clinicians, who were keen to express optimism about the diagnosis and maintain hope for the patient and their family. Patients referred frequently to past clinical interactions which they felt emphasised the ‘manageable’ nature of HF, with little to no mention of the future from their doctor or nurse, which implied that there was simply no need to discuss it. Hence, HF was not considered by most patients and carers to limit lifespan significantly and was seen as ‘just one of those things’ to be expected with advancing age. This finding supports long-standing prior work in this area, indicating that prognostic discussions have seemingly remained unchanged in the past 15+ years.10 19 Sicker participants tended to have more regular interactions with their clinical team, which reassured them that their condition was being reviewed regularly, and kept stable. A significant minority, mostly the newly diagnosed, internally questioned their seemingly optimistic prognosis. More stable patients also spoke less about their relationship with their clinical team, and this was suggested as a reason why they preferred not to discuss prognosis—that is, that they would require a closer relationship with their team before discussing emotive issues. However, sicker patients did not seek a prognosis either, possibly as their long-standing relationship with their clinical team was not historically characterised by prognostic discussion. Few patients in this study spoke of the possibility of sudden death, and some did not feel anything of that nature would happen to them. HF was consequently viewed by most participants as a chronic, managed condition rather than a terminal illness.
This is the first known study which has used a qualitative, longitudinal approach to explore prognostic communication from the viewpoint of patients with HF, their carers and clinicians which has allowed comparisons between groups over a period of time, with the deliberate inclusion of a cross section of patients in different stages of HF. Prognostic discussions were not observed, but it is possible that prognosis was discussed in other appointments. The inclusion of questions surrounding past prognosis discussions regardless of where and when they happened goes some way to overcoming this issue. It is also possible that patient and carer attitudes towards prognosis discussion may have changed over a longer period of time, outwith the 6-month follow-up duration of the study. As sudden death is common in HF, particularly in earlier stages,20 the length of follow-up was deemed appropriate to understand as many experiences as possible, including in late-stage HF. Future research is needed to assess long-term prognosis communication, ideally from diagnosis to death. It is of course possible that patients and carers had considered their views about death and dying but could not, or would not, share these thoughts. The longitudinal nature of the study and the semistructured nature of interviews were designed, in part, to allow a rapport to be built which could foster an open dialogue about such an emotive subject. Furthermore, as almost all participants agreed to participate in the second interview, this indicates that they were willing to engage and discuss prognosis and the future.
The results of this research underline the ambiguity that exists around HF and end-of-life care issues. In some way, as the prognosis of HF has improved over the last few years with the advent of newer medications, the illness could be seen as chronic rather than progressive, until treatment failure is accepted. This highlights the importance of careful wording when delivering a diagnosis and having discussions about the future, which, as this research shows, some patients do want (particularly at earlier stages), to some extent. Patients and their families mostly prefer their clinicians to take the lead in discussing care, including care options towards the end of the illness trajectory.21 Individual patient reluctance to discuss the future with HF does not automatically mean that these discussions should not take place—rather, clinicians can use uncertainty in a more positive way as a ‘trigger for exploration’ of future care options.21 Appropriately tailored prognostic discussion can improve treatment outcomes9 and should be associated with assessing and compiling future care plans. Our results suggest that care plans for those with HF should involve problem-based, tailored medical management, for example, with both active care and palliative care medications, as well as psychological and appropriate support. More research and thought is needed into recognising and communicating when the boundary has changed from active HF management under a chronic care paradigm, to palliative care, and the ways in which patient preferences for receiving prognostic information can be assessed and delivered.
The authors thank Professor Jerry Murphy for his practical help and advice during the study. They also thank all the patients, carers and clinicians who gave their time to talk to them.
Contributors Planning, study concept and design: RS, HC and APSH. Data collection: RS. Data analysis, reviewing and finalising paper: RS, HC, HH and APSH. Guarantor: RS.
Competing interests None declared.
Patient consent Obtained.
Ethics approval Durham University and the local NHS Research Ethics Committee (ref: 11/NE/0313).
Provenance and peer review Not commissioned; externally peer reviewed.
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