End-of-life care conversations with heart failure patients: a systematic literature review and narrative synthesis

Aims

The aims of the study are to review the literature concerning conversations about EOLC between patients with heart failure and healthcare professionals, with respect to:

• the prevalence of conversations;

• patients' and practitioners' preferences for their timing and content; and

• the facilitators and blockers to conversations.

Are end-of-life care discussions being held?

Eleven papers reported heart failure patients' experiences of the prevalence of EOLC discussions. Two (from the same study) found no patients had discussed their EOLC preferences, disease progression, or future care options with healthcare professionals:55,56 nine papers reported that few patients had discussed prognosis,51,52,67,74 EOLC,52,53,54,69 cardiopulmonary resuscitation or other life-sustaining interventions,49,69,71 or plans for future care.53,71,74 A uniform picture emerges that the great majority of patients with heart failure do not perceive that they have had a discussion with their healthcare professionals concerning the end of life.

In contrast, two studies of medical records reported most patients had had EOLC discussions. In one, these conversations focused on disease-modifying therapy rather than EOLC.70 The second scored lowest on weight of evidence, for reasons outlined in Table 2.73

Patient attitudes towards end-of-life care discussions

Patients have diverse attitudes towards conversations with healthcare professionals. Some welcome these conversations. They desire more information concerning prognosis,55,60,63,67,71,74 resuscitation,67 and how their condition is likely to progress,49,60,71 as this allows them to put their affairs in order and make plans for their families.63,66,74 An opportunity to discuss their fears about the future is reassuring;60,71 for some the knowledge that death could be sudden is welcomed, as this is their preferred mode of death.52

Others do not wish to have these conversations. They rarely think about death,50,72 and prefer not to think about their prognosis;50 they do not regard end-of-life issues as relevant to them,67 seeing their condition as part of growing old.54 They accept a low level of knowledge about their illness and do not view themselves as capable of understanding it, preferring to leave medical issues to their professionals.50 Some explicitly do not want prognostic information,52 and avoid the subject when raised by doctors,51 preferring to enjoy the present without conversations that will cause worry to themselves50,52 or their families,52,65 and a loss of hope50,53,66,71 Others have mixed and ambivalent views, having some awareness but not wishing to openly acknowledge their poor prognosis.65–67

When conversations are desired, patients want these to be held sensitively,50,55 with honesty,55,63,65,67 and repeated opportunities to talk.63 Patients are concerned that they may not be able to process information when feeling unwell,63 and may be afraid to ask questions,55 being reluctant to put doctors in uncomfortable positions:63 they fear that doctors will not want to talk,63,66 or will only give incomplete information.55,67

Patient preferences for the timing of conversations

The few studies that have investigated when patients would like to have these conversations reveal a dilemma. Patients are most likely to consider end-of-life issues when unwell and in hospital:67,72 a time when they are least likely to be physically, mentally, or emotionally able to absorb important information or engage in difficult conversations.63 Once the threat to life has receded, they are less likely to wish to discuss their prognosis and EOLC.63 The majority of patients prefer doctors to initiate these conversations,63,71 although a significant minority would prefer doctors to wait for patients to bring these issues up.71 Some suggest that doctors might ‘plant the seed’ at a time when symptoms are well managed and the patients feel relatively well and able to be more in control of the conversation.63

Healthcare professionals' attitudes to end-of-life care discussions

Healthcare professionals find it difficult to establish a diagnosis of heart failure at times,51 and then struggle to find a vocabulary to explain the condition.53 They see prognostication in heart failure as very difficult given the uncertain disease trajectory,51,55,56,62,64 and that comorbid conditions may be a more probable cause of death;51 in light of the potential for a catastrophic event such as sudden death, some feel unable to discuss future plans.53,54 Some do not themselves realise the terminal nature of heart failure,54 or believe that patients rarely acknowledge this.56,62 Doctors tend to focus on current aspects of medical management rather than the future,51,68 approaching heart failure as a problem to be fixed instead of a terminal illness;51 this may hinder communication concerning wider and longer-term patient needs.55,62 They fear alarming patients unnecessarily,51 creating anxiety and depression,51 destroying hope,64 and causing patients to give up the fight for life.64

The communication challenges are considerable. Although healthcare professionals believe that heart failure patients have a right to be informed of their prognosis,51 they want to avoid giving bad news too soon,64 and fear saying the wrong thing.64 They seek to give an understanding of the severity of the illness,54 including the risk of sudden death,53 but struggle to balance frightening patients with underplaying their condition.51 The ethical balance between beneficence and non-malificence can be hard to find. Discomfort with breaking bad news,53,56,62 or with broader issues of death and dying hinders communication.61,62,64,68

Clinicians believe some heart failure patients do not wish to know they are dying,68 or are unsure whether patients wish to talk about death, recognising that they may be uncertain how to show to their doctors that they want to talk.62 Some see it as inappropriate for the doctor to initiate EOLC discussions,51,56 and ‘use their own judgement’ about what information patients may or may not want to hear and when;51 in practice this commonly means waiting for patients to initiate a conversation, although they recognise that some, especially older people, may be reluctant to raise such issues with their doctors.51 Rather than a one-off conversation, this is seen as a process over time, based on an established and trusting relationship between doctor and patient.51

Some clinicians see a ‘good death’ in heart failure in terms of open awareness, and the patient understanding what is happening and being able to plan ahead and talk about their wishes.61,62 A ‘bad death’ is unexpected, where health professionals have not been open about what is happening, and the patient has no insight and is therefore unprepared.61 There is concern that cardiologists may not always provide good palliative care and that palliative care clinicians may not have the skills to manage end-stage heart failure:56,64 joint working of these two specialist teams is welcomed.55,68

Healthcare professionals' preferences for the timing of discussions

There is real difficulty for professionals in judging the right time to hold these conversations. Some prefer to discuss early in the course of heart failure before the patient becomes too unwell to assimilate the information and make plans.61,68 Others are concerned about giving bad news too soon,64 although they acknowldge that they often accept and discuss the poor outlook too late for effective communication and planning.64 Many wait for patients to give cues that they wish to talk,51,53,56,62 preferring to respond to patient questions rather than initiate conversations themselves. The preference of many patients to wait for doctors to raise these issues is thus an ineffective strategy, as they very rarely do so.71

Barriers to end-of-life care conversations

The literature evidences a number of barriers to effective and timely EOLC conversations between people living with heart failure and their clinicians.

Summary of main findings

Conversations between clinicians and patients with heart failure focus largely on disease management; EOLC is rarely discussed. While some patients would welcome such conversations, many do not realise the seriousness of their condition or wish to discuss EOL issues. Clinicians are often unsure how to discuss with heart failure patients their uncertain prognosis and risk of sudden death and fear causing premature alarm and destroying hope. Clinicians wait for cues from patients before raising EOLC issues, while patients commonly wait for clinicians to raise these issues: as a result, the conversations rarely take place: ‘the elephant on the table’ is not addressed.

Strengths and limitations of the study

This is the first systematic review to synthesise the literature concerning patients' and clinicians' views of EOLC discussions in heart failure. Knowledge in this area is recent: no paper published before 1999 was identified. While the search strategy was difficult to create, it appears to have been effective: searching reference lists and citations of included papers and hand searches of two key journals did not identify any additional papers included in the synthesis. Most of the included studies were qualitative: the smaller number of quantitative studies were given a lower weight of evidence, being retrospective or limited data being available from routine sources such as medical records. We did not search the grey literature but have set the synthesis in the context of policy documents and guidelines.

Of the 23 papers, thirteen report data from patients, six from health professionals and four from both groups. The uniform view of patients is that these conversations occur rarely, if at all. Two medical record review studies report frequent occurrence of conversations. One revealed little EOLC content.64 The other supplied little content information beyond records indicating ‘advanced planning discussions and preferred place of death’,65 supplemented by clinician recall some months after the death: this paper was given the lowest weight of evidence scoring. As previously noted, there is a large discrepancy between doctors' and patients' reports of whether EOLC conversations have taken place at all and the amount of information given,43,44,46,49 an issue that would benefit from further research.

Comparison with existing literature

The classic work on ‘Awareness Contexts'77 that Glaser and Strauss developed with cancer patients near the EOL gives a useful structure for understanding the communication challenges facing heart failure patients and their clinicians.

• Many patients are in Closed Awareness. They do not understand the nature and severity of the term ‘heart failure’, which they often understand in terms of ageing processes or co-morbid conditions. Thoughts of approaching death are simply not part of their reality of living with heart failure.69 Some have survived being close to death during resuscitation or exacerbations and do not see why they should not do so in the future. Their clinicians are aware of the poor prognosis but avoid the difficult conversations, in a way that has been described as reminiscent of cancer care decades ago.66

• Others are in Suspicion Awareness, wanting to ask questions about the future, but feeling unable to do so.55

• Mutual Pretence, where both patients and clinicians are aware of the poor outcome but avoid discussing it, is perhaps less common since many patients have poor understanding of their condition.

• Open Awareness, where open conversations concerning EOLC occur, also appears to be rare in heart failure. Largely shaped by a cancer care model, this is the ideal situation set out in the NHS EOLC Strategy, but appears to be of limited applicability in heart failure.52

Implications for policy and practice

Recent years have seen dramatic therapeutic advances in the management of heart failure that have significantly improved patients' survival and quality of life: in the interventionist culture of Cardiology, there is a danger that issues of EOLC are only considered too late in the illness, when active options have been exhausted. Although many clinicians believe they should discuss the deactivation of implantable defibrillators with patients, in practice they find these conversations particularly difficult and rarely do so.48,75,76 As EOLC comes to the fore across the NHS, there is a growing tension between active management and the need to communicate an uncertain and poor prognosis: a double message that is difficult for clinicians to communicate and for patients to receive.

This review addresses a number of the recommendations of recent guidelines and policy documents concerning EOLC in heart failure, which may be summarised thus:

• What? It is recommended that patients with heart failure and their carers should have sufficient opportunities to discuss their uncertain prognosis, the risk of sudden death and their priorities and preferences for care.18,38 A balance of optimism and realism is recommended78,79 avoiding either embracing or negating hope, but acknowledging the uncertainty.80 Some patients may be confused by what appears to be a mixed message and find the emotional and cognitive dissonance involved difficult.78 This review indicates that in practice many patients do not have these discussions49,51–63 despite some indicating a wish to do so49,55,60,63,65,66The uncertainty of prognosis51,53,71–72 and fear of causing patients anxiety51,54 are major barriers.

• When? These conversations are recommended to be offered at all stages of the disease trajectory18, 38 as a process of continuing dialogue over time38,79–80 at times of the patient's own choosing,38 at key turning points79 such as decline in performance or episodes of decompensation,81 or when needed to plan care.82 In practice it is very difficult to judge when the time is right: some do not feel able to hold these discussions when unwell61,67,69 while others prefer not to consider these issues when well.67

• How? Communication should be open, sensitive and honest, at the patient's own pace,38 using an ‘ask, tell, ask’ approach82,83 where the patient's desire for information is first elicited, followed by small amounts of information given at one time, then checking their understanding and desire to talk further. The communication challenges are formidable, especially in the light of sudden death in half of patients; these are advanced communication skills, honed by training and experience. Further research is called for concerning how to best elicit patients' desire for information and for participation in decision-making.79 In practice, many clinicians do not feel they have the necessary communication skills for these conversations.56,73

• Who? Conversations should be held with a clinician with whom there is an established relationship and who has a commitment to personal continuity of care, as a process over time.81 Such conversations are the remit of a senior member of the heart failure team or the patient's GP. The study would argue that it is inappropriate for medical staff unfamiliar to the patient to tell the patient that they cannot predict what will happen next, apart from it is likely to be bad, including sudden death. In practice, this frequently occurs.53,55,73

Many still think of palliative care in terms of a system of care delivery involving specialists, referrals and hospices: it is rather a philosophy and approach to care involving supporting patients throughout their illness to the EOL. Such care is delivered by many health and social care professionals,84 although often not recognised as such. In practice, while the heart failure team are often involved around the time of diagnosis or admission for exacerbation,4 their focus is on medical management more than longer-term issues, and they rarely follow up patients long-term, especially older people with other comorbidities. In many cases the GP might be the most appropriate person, given the long-term doctor – patient relationships in primary care, although it must be admitted that this rhetoric of personal continuity of care has been a declining reality over recent years. The heart failure reviews in the Quality and Outcomes Framework for general practice focus on drug management issues and do not include longer term and EOL planning.

The role of palliative care specialists remains unclear85 and is often reserved for those with complex problems or poorly managed symptoms20,86 or at the time of admission with an acute exacerbation.87 Models of joint working have been developed88,89 commonly with the heart failure nurse as the lead clinician with palliative care consultancy90 rather than heart failure orientated palliative care.91 A recent survey found that although 90% of palliative care services say they accept heart failure patients, few have developed services of significant size:89 only 6% of patients in the National Heart Failure Audit were referred to palliative care.4

Clinicians are unsure how to discuss the uncertain prognosis and risk of sudden death, and fear causing premature alarm and undermining hope. ‘It is humane and sufficient in some cases to allow patients to be unaware of the serious nature of their condition … and not to harm patients by providing stressful information that is not requested’.50 Although such an approach may be consistent with the bioethical principles of beneficence and non-malificence, it conflicts with the principle of autonomy which recognises the patient's right to make informed choices about their care. When conversations about the future do take place, they focus more on issues of disease management than EOLC. Patients who wish to talk wait for their doctors to raise EOLC issues, while clinicians wait for cues from patients before raising these topics. The consequence is that ‘the elephant in the room’92 is rarely addressed in practice.

Conclusion

Heart failure patients need clinicians to be sensitive to their individual wishes for EOLC conversations, which change as events and time unfolds. Clinicians who tend to avoid such difficult conversations need to learn to pick up the cues that the patient would like to talk further. Those who view open awareness as the best way to prepare for the EOL need to live with the internal tensions created71 when patients are reluctant to discuss this. A dual approach of continuing active treatment while acknowledging the possibility of death, at least to ourselves, is perhaps the way forward: ‘hoping for the best but preparing for the worst’.78