Table 2.

Summary of included papers

First author	Reference	Participants	Aims	Research methods used	Key findings	Weight of evidencea
Weight of evidence = high
Agard50	Heart and Lung 2004; 33(4): 219–226	40 HF patients, ≥60 years, 13 NYHA stage II, 21 stage IIIa, 5 stage IIIb, 1 stage IV	To explore patients' knowledge of HF, attitudes toward medical information, and barriers to improving their knowledge	Semi-structured qualitative interview	• Most patients unaware of the meaning of HF and its poor prognosis, and content with this • 32/40 did not want prognostic information • 4/40 wanted more information about how HF would affect their lives • If patients thought of approaching death this was in the context of ageing rather than HF	M H H – H
Aldred60	J Adv Nurs 2005; 49(2): 116–124	10 patients with HF and their partners, ≥60 years, 3 NYHA stage II, 6 stage III, 1 stage IV	To explore the impact of HF on the lives of older patients and their informal carers	Semi-structured qualitative interview	• Most would have welcomed more information about prognosis and how the condition would progress • Commonly preoccupied with thoughts about the future • Many would have welcomed opportunity to discuss their fears with someone • Doctors perceived as being too busy to talk	H H H – H
Barnes51	Health Soc Care Community 2006; 14(6): 482–490	44 patients with HF, ≥60 years, NYHA stage III/IV. Primary care professionals involved in HF management from these patients' practices (39 GPs, 37 nurses, 2 health visitors, 1 nursing home manager)	To explore attitudes of older people and primary care professionals toward communication of diagnosis, prognosis and symptoms in HF	Qualitative interviews with patients. Focus groups with healthcare professionals	• Few patients had discussed prognosis with any health professional. • Several patients preferred not to know about HF, as that would cause them worry • Professionals found prognostic uncertainty hindered discussion • GPs found it difficult to diagnose HF • GPs reluctant to discuss terminal nature of HF	HHH – H
Borbasi61	Austr Crit Care 2005; 18(3): 104-113	17 nurses caring for end-stage HF patients, in homes and hospices	To understand nurses' experiences of caring for patients dying from HF	In-depth open-ended interviews	• ‘Good death’ seen as: patient understands death is close, accepts this. and plans for the end of life • ‘Bad death’ seen as: unexpected death, patient unwilling to accept death approaching, fights all the way, unprepared for death	M H H – H
Boyd53	EurJ Heart Fail 2004; 6: 585–591	18 patients with NYHA stage IV HF	To understand the range of issues facing patients with advanced heart disease and their lay carers during the last months of life	Qualitative serial interviews every 3 months for ≤1 year. Focus group with 16 health professionals	• Few patients had discussed their wishes for EOLC with health professionals • Patients reluctant to raise these issues themselves • Health professionals found difficulty in finding vocabulary to discuss HF and avoided-end-of-life discussions due to uncertain prognosis and risk of sudden death	H H H – H
Brannstrom62	Eur J Cardiovasc Nurs 2005; 4: 314-323	11 nurses working in an advanced home care unit	To understand the meaning of being a palliative nurse for persons with HF in advanced homecare	Qualitative interviews	• Patients unsure how to show clinicians that they want to talk • If patients are well informed, will be less anxious • Important for patient to be clear they are approaching the end of life	H H H – H
Caldwell63	Can J Cardiol 2007; 23(10): 791-796	20 patients with NYHA stage II or III HF	To identify preferences of patients with advanced HF regarding communication about their prognosis	Qualitative semi-structured interviews	• Patients do not want to think about end of life when well, but not able to engage with conversations when ill • Hesitate to ask about prognosis: reluctant to put them on the spot, time pressures • Want honest communication from doctors • Prefer doctors to initiate conversations	H H H — H
Gott52	Soc Sci Med 2008; 67(7): 1113-1121	40 people with HF NYHA stage II—IV age ≥60 years (median age 77 years)	To explore the extent to which older people's views and concerns about dying match the revivalist model of ‘good death’, which underpins palliative care delivery	Semi-structured interviews	• 1/40 had discussed advanced care plans • Few had discussed prognosis with a clinician • Some acknowledged their limited prognosis but still did not want prognostic information • Some preferred a sudden death – avoided increasing dependency • Thinking about end of life was a source of anxiety	H H H – H
Hanratty64	BMJ 2002; 325: 581-585	34 doctors involved in HF care: 10GPs, 8 cardiologists, 10 general physicians/geriatricians, 4 general medical doctors, 6 palliative care doctors	To identify doctors' perceptions of the need for palliative care for HF and the barriers to change	Qualitative focus groups	• Fear saying the wrong thing, giving bad news too early, patients losing hope • Prognosis difficult: poor outlook accepted by doctors too late in the illness • End-of-life issues difficult to discuss with patients	H H M – H
Harding55	J Pain Symptom Manage 2008; 36: 149-156	20 patients with NYHA class III–IV and 12 of their carers; 12 doctors and nurses working in palliative care and cardiology	To generate recommendations for the provision of information to HF patients and their family carers	Semi-structured qualitative interviews	• No patients had discussed disease progression or EOLC • Patients want easily comprehensible information, given directly and sensitively • Patients and carers reluctant to ask questions • Prognostic difficulties hinder conversations • Cardiologists welcome palliative care and communication skils training • Palliative care professionals welcome HF training • Need to developshared care pathways	H H H – H
Horne65	Palliat Med 2004; 18: 291-296	20 patients with HF, 11 NYHA stage IV, 7 NYHA stage III, 2 NYHA stage II	To explore the experiences of patients with severe HF and identify their needs for palliative care	Qualitative semi-structured interviews	• Patients had some sense of their poor prognosis • Mixed views about wanting to know prognosis • All had thought about dying but few had discussed these issues with clinicians	H H H – H
Murray54	BMJ 2002; 325: 929–934	20 patients with NYHA stage IV HF	To compare the illness trajectories, needs, and service use of patients with cancer and those with advanced non-malignant disease	Serial in-depth qualitative interviews, every 3 months, up to 1 year	• Patients had little understanding of their condition, treatment aims or prognosis • A palliative care approach was rarely apparent	H H H – H
Rogers66	BMJ 2000; 321: 605–607	30 patients with HF admitted to hospita in past 20 months: 7 NYHA stage II, 12 NYHA stage III, 8 NYHA stage IV	To explore patient understanding of HF, their need for information, and issues concerning communication	Qualitative in-depth interviews	• Some patients wanted to know more about their illness and prognosis • Some wanted to make provision for death • Others had not/did not wish to acknowledge prognosis – ambivalent about learning more about their condition • Anxieties that doctors would withold information	H H H – H
Selman56	Heart 2007; 93: 963–967	20 patients with heart failure, 14 NYHA stage III, 2 stage III–IV, 4 stage IV; 11 family carers, 12 clinicians (6 palliative care, 6 cardiology)	To investigate patients' and carers' preferences regarding future treatment and communication between staff, patients, and carers concerning the end of life	Qualitative semi-structured interviews	• No patients had discussed end-of-life preferences with clinicians – few had discussed with family members • Cardiologists reluctant to raise end-of-life issues due to uncertain prognosis and lack of communication skills. Happy to discuss if patients raise issues	H H H – H
Strachan67	Can J Cardiol 2009; 25(11): 635–640	106 patients (mean age 78.5 years) with heart failure NYHA class IV or ejection fraction <25%	To identify patients' perspectives on ways to improve EOLC for patients with HF	Structured survey of inpatients	• 11% had discussed life expectancy with doctor • 58% understood they were approaching the end of life • 21 % do not regard end-of-life issues as relevant to them • Most important aspects of EOLC were: to avoid life support if no hope of recovery, not to be a burden on their family and honest communication of information by doctors	H H H – H
Wotton68	J Cardiovasc Nurs 2005; 20(1): 18–25	17 nurses experienced in palliative and cardiac care	To describe nurses' perceptions of factors influencing care for patients in the palliative phase of HF	Qualitative semi-structured interviews	• Nurses thought most patients do not want to know they are dying • Clinicians reluctant to explain severity and progression of HF • Clinicians focus on keeping patient stable rather than EOLC	H H H – H
Weight of evidence = medium
Agard49	J Intern Med 2000; 248: 279–286	40 HF patients, ≥60 ≥60 years, 13 NYHA stage II, 21 NYHA stage IIIa, 4 NYHA stage IIIb, 2 NYHA stage IV	To understand patient involvement in decisions concerning CPR	Semi-structured qualitative interview plus some structured questions	• 1 of 40 patients had discussed CPR • 70% would like doctor to raise the issues • Most prefer to leave the initiative with doctors – few would raise these issues themselves	M H M – M
Formiga69	Q J Med 2004; 97: 803–808	80 patients admitted with HF age >64 years (mean age 79 years); 10% with NYHA stage II, 74% NYHA stage III, 16% NYHA stage IV	To determine the preferences for CPR and EOLC in older patients hospitalised for heart failure	Structured interview	• 2/80 patients had discussed their wishes for EOLC with doctors	M M M – M
Haydar70	J Am Geriatr Soc 2004; 52: 736–740	109 patients enrolled in a house calls programme with HF (29), dementia (79), or both (34). Mean age of HF patients 82.6 years	To compare the end-of-life preferences of older people with dementia and HF	Medical records review: demographics, hospital use, place of death, and discussions relevant to advance planning and hospice enrolment	• Focus of advanced planning discussions for HF patients = do not resuscitate orders	M L M – M
Heffner71	Chest 2000; 117: 1474–1481	415 patients participating in cardiovascular rehabilitation programs: 248 HF NYHA stage I, 129 NYHA stage II, 33 NYHA stage III, 1 NYHA stage IV	To assess the interests of cardiac patients in advance planning and their willingness to participate in end-of-life education during rehabilitation	Structured questionnaire survey	• The small group who had held discussions were largely around life-sustaining interventions rather than EOLC • Most wanted more information about advanced directives: 41 % thought this reassuring, 18% anxiety provoking but worthwhile, 4% too anxiety-provoking to pursue • Patients prefer clinicians to initiate discussions	H M M – M
Rodriguez5	Heart Lung 2008; 37(4): 257–265	25 patients with HF: 2 NYHA class I, 13 NYHA class II, 9 NYHA class III, 1 NYHA class IV	To explore patients' knowledge about HF, and understanding of treatment and prognosis	Semi-structured qualitative interviews	• Patients had poor undersatnding of their illness • 2 patients reported advanced care planning discussions – both initiated by clinicians • Few had discussed prognosis, but many wanted to hear about it	H M M – M
Willems72	Palliat Med 2004; 18: 564–572	31 patients with HF, 1 NYHA stage I, 5 NYHA stage II, 19 NYHA stage III, 2 NYHA stage IV, 4 not stated	To explore the ideas and attitudes of patients with end-stage HF concerning dying	Prospective longitudinal multiple case study using semistructured interviews, taped and transcribed	• Most thought about death infrequently • Thoughts of death were more common when admitted to hospital but receded as the threat to life resolved • Most did not think they might die earlier because of their condition	M H M – M
Weight of evidence = low
Johnson73	Br J Cardiol 2009; 16: 194–196	Records of 235 deceased patients who had been under the care of HF nurse specialists	To review the place of death of patients on the caseload of HF nurse specialists	Retrospective nursing records review supplemented by nurses' recall several months after the deaths	• 38% of deaths were sudden • In one area 112/149 (75%) cases had evidence of advance planning discussion, documented in records or recalled by nurse • In another area, preferred place of death was recorded for 34/86 (40%) patients	L L M – L

CPR = cardiopulmonary resuscitation. EOLC = end-of-life care. HF = heart failure. NYHA = New York Heart Association.

^aAssessed using Gough's weight of evidence framework: ⁵⁹ 1 = coherence and integrity of the evidence in its own terms; 2 = appropriateness of form of evidence for answering review question; 3 = relevance of the evidence for answering the review question; 4 = overall assessment of study contribution to answering the review question.