Vol. 36 No. 2 August 2008 Journal of Pain and Symptom Management 149

Original Article

Meeting the Communicationand Information Needsof Chronic Heart Failure PatientsRichard Harding, BSc, MSc, DipSW, PhD, Lucy Selman, BA, MPhil, Cert. Pall Care,Teresa Beynon, MBChB, MD, FRCP, MRCGP, Fiona Hodson, RGN,Elaine Coady, RGN, MSc Cardiology, Caroline Read, RN, BSc,Michael Walton, AB, MD, Louise Gibbs, MA, MB, BChir, FRCP,and Irene J. Higginson, BMedSci, BM BS, FFPHM, FRCP, PhDDepartment of Palliative Care, Policy & Rehabilitation (R.H., L.S., I.J.H.), King’s College London

School of Medicine, and Guy’s & St. Thomas’ NHS Foundation Trust (T.B., F.H., E.C., C.R.),

St. Thomas’ Hospital, London, United Kingdom; Department of Psychiatry (M.W.), New York

Presbyterian Hospital, New York, New York, USA; and St. Christopher’s Hospice (L.G.), London,

United Kingdom

AbstractThere is a lack of evidence on how best to meet policy guidance in fulfilling the information needsof patients with chronic heart failure (CHF) and their families. We aimed to generate guidancefor appropriate information provision to CHF patients and their families through a cross-sectional qualitative methodology with constant comparison of emergent themes. Participantswere 20 CHF patients (New York Heart Association Functional Classification III, IIIeIV, andIV); 11 family carers; six palliative care staff; and six cardiology staff. Patients and carersseverely lacked understanding of CHF and its symptoms. None had discussed diseaseprogression or advanced care planning with staff. Although patients expected honest discussionof disease implications, data from clinicians described an unwillingness to disclose poorprognosis. We identified four types of barriers to the discussion of disease progression: disease-specific; patient-specific; specialism-specific; and staff time and resources. This is the first studyto integrate cardiology, palliative care, and patient and family views to develop feasiblerecommendations on meeting information needs. Three recommendations for hospital-basedclinical practice were generated from the data: (1) improved methods of providing information;(2) introduction of mutual education and joint working; and (3) development of care pathwaysand referral criteria. J Pain Symptom Manage 2008;36:149e156. � 2008 U.S. CancerPain Relief Committee. Published by Elsevier Inc. All rights reserved.

Key WordsHeart failure, palliative, end of life, carers, information, communication, disease progression,need, qualitative

Funded by a Service Development Grant from Guy’s& St. Thomas’ Charitable Foundation.

Address correspondence to: Richard Harding, Depart-ment of Palliative Care, Policy & Rehabilitation,King’s College of London School of Medicine,

� 2008 U.S. Cancer Pain Relief CommitteePublished by Elsevier Inc. All rights reserved.

Weston Education Centre, Cutcombe Road, Den-mark Hill, London SE5 9RJ, United Kingdom.E-mail: richard.harding@kcl.ac.uk

Accepted for publication: September 18, 2007.

0885-3924/08/$esee front matterdoi:10.1016/j.jpainsymman.2007.09.012

150 Vol. 36 No. 2 August 2008Harding et al.

IntroductionChronic heart failure (CHF) patients report

high pain and symptom prevalence, includingpain (63%e80%), anxiety (49%), and breath-lessness (60%e88%), rates similar to advancedmalignant disease and AIDS.1 Mortality ratesare high: 40% in the first year after diagnosis2

and 45%e75% at five years.3e7

The mortality rates and prevalence of dis-tressing and apparently refractory symptomsmake CHF patients appropriate for palliativecare, that is, care from diagnosis to end oflife for ‘‘patients and their families facing the prob-lems associated with life-threatening illness, throughthe prevention and relief of suffering by means ofearly identification and impeccable assessment andtreatment of pain and other problems, physical, psy-chosocial and spiritual.’’8 Clinical guidance forCHF endorses palliative interventions early inthe disease course,9,10 and throughout the en-tire disease trajectory.11e13 The informationneeds of patients and carers are of particularconcern.14e22 There is evidence that patientsoften lack knowledge about their conditionand prognosis, which may contribute to de-pression,18 poor drug adherence,20 unplannedadmissions,23 low patient/physician congruityregarding advanced care preferences, andless decision-making involvement than occurswith cancer patients.20e22

This study aimed to generate recommenda-tions for the appropriate provision of feasibleand acceptable information to CHF patientsand their family carers, in line with UK andinternational policy guidelines.

MethodsDesign

The qualitative methodology used semi-structured interview data from four sources:cardiology staff, palliative care staff, patients,and families at a tertiary hospital in London,UK. Qualitative methodology is most appropri-ate in exploratory, in-depth research of thisnature.24

RecruitmentSpecialist heart failure nurses recruited pa-

tients from their outpatient clinic and fromhospital wards. Inclusion criteria were diagno-sis of CHF, New York Heart Association

Functional Classification III or IV, on optimaltherapy, not yet seen by palliative care staff,able to communicate in English and able togive informed consent. Fifty-five patients werescreened for participation; 33 of these wereineligible for inclusion in the study, threerefused and 20 took part. Eligible family mem-bers were primary informal carers of CHF pa-tients. Staff were recruited from the cardiologyand palliative care teams. A purposive samplingframe addressed staff role and community/inpatient/outpatient care provision.

Data CollectionA semistructured topic guide was drafted for

each sample, based on a literature review anddiscussion with clinical experts in the steeringgroup. Sequential or interim analysis25 refinedfocus to the most relevant clinical and patientperspectives through continuous review oftranscripts and exploration of emergentthemes. Twenty patients, 11 carers and 12 clini-cians were estimated to achieve data satura-tion, that is, additional interviews would notyield major new themes.

Patient and family interviews (conductedseparately) covered: (1) disease history; (2)communication with staff, including whetherthey had discussed prognosis, what to expectin the future, and treatment options in theevent of a future exacerbation; (3) currentneeds for information, including CHF under-standing; and (4) interfamily communication.Clinician interviews addressed informationprovision and communication about end-of-life issues with patients and families, withadditional foci on staff roles, referrals, clinicalchallenges, and appropriate intervention.

Interviews were conducted by LS, MW, andRH, and ranged from 20 to 90 minutes.

Ethical ConsiderationsThis study was approved by St. Thomas’

Hospital Research Ethics Committee. Writteninformed consent was obtained from allparticipants.

AnalysisInterviews were tape recorded, transcribed

verbatim, and imported into NVivo V2 for con-tent analysis using a constant comparisonapproach to formulate analytical categoriesor themes.25 Each transcript was coded

Vol. 36 No. 2 August 2008 151Communication Needs of Chronic Heart Failure Patients

line-by-line (LS), with a sample reviewed bya second researcher (RH) to establish inter-rater reliability and increase validity of fin-dings.24e27 Following peer review, initialcodes were reviewed for internal consistencyand independence of themes (LS and RH).Each code generated subcodes highlightingvariation and discrepancy/deviant cases to de-scribe data breadth.24,26,28 Codes and subcodeswere tabulated, and data from each samplecompared and integrated, taking into accountrelationships between patients and carers.

ResultsSample Characteristics

Forty-three interviews were conducted.Twenty patients participated, 16 of whomwere male (80%). The mean age was 69 years(SD¼ 10.6); the youngest patient was 43 andthe eldest 83. Fourteen patients were NewYork Heart Association class III, two were classIIIeIV, and four were class IV. The left ventric-ular ejection fraction ranged from 22.5% to50%, with a mean of 34% (SD¼ 8.33). All ex-cept one had a previous CHF admission. Therewas a high rate of comorbidities (e.g., diabetes,cancer, and epilepsy) and invasive cardiac pro-cedures (six pacemakers, six bypass proce-dures, three valve replacements). The highrate of comorbidities, hospital admissionsand invasive procedures are typical of patientswith severe CHF, suggesting good generaliz-ability of findings.29

Eleven carers participated: eight were pa-tients’ wives, the others a niece, daughter,and son. Nine carers cared for patients whoalso took part in the study; the remainingtwo (7B, 22B) cared for patients who did nottake part (one was excluded due to severe de-mentia and the other declined to be inter-viewed, respectively). Carers also reporteda high rate of morbidity (e.g., strokes andcancer).

Six clinicians participated from each spe-cialty. From palliative care, there was one spe-cialist registrar, one consultant, two specialistinpatient nurses, and two specialist communitynurses. From cardiology, there were three spe-cialist nurses, two consultants, and one special-ist registrar.

Findings regarding patient and carer infor-mation needs are presented in the following

categories: (1) CHF symptoms and manage-ment; (2) disease progression and futurecare; (3) living with inadequate information;(4) barriers to effective information provision;and (5) recommendations to improve infor-mation provision.

CHF Symptoms and ManagementAll patients, except one who was medically

trained, profoundly lacked understanding ofCHF, particularly in relation to symptoms:

Respondent: They think I’m round aboutten stone, which has been my weight forquite a number of years now. I investedin a new set of scales . it’s within the lastweek I’ve started, and I’m seeing as muchas a pound a day of difference!

Interviewer: Right. Why do you think that is?

Respondent: I’ve no idea. I watch what I eat,I don’t eat big meals (Patient 12A).

Carers exhibited similar confusion:

Maybe that’s why the breathing was so bad,because the fluid was building up, maybe itwas to do with the fall and being left overnight, I don’t know, I really don’t know(Carer 3B).

Ten patients reported their most importantquestions to be symptom-related (cause, man-agement, and what to expect).

Why is all this fluid flyin’ back on faster thananything? (Patient 2A)

Am I gonna get any betteror feel as though I’mhaving a better standard of life? (Patient 5A)

I’d like them to explain more in English tome exactly the reason why this isn’t working,that isn’t working. reasons for and whythey are giving me that particular tablet (Pa-tient 21A).

Cardiac staff described non-adherence asa consequence of lack of understanding. Self-management, including daily weighing, a re-stricted diet and drug adherence, is centralto controlling symptoms, particularly fluidretention and breathlessness.

I think the kind of mistake they make, youknow, [is that] they’re given diuretics.and they don’t take them because of the

152 Vol. 36 No. 2 August 2008Harding et al.

inconvenience. without actually under-standing that they need to adjust their think-ing really rather than trying to ignore it,because actually all that they’re doing ismaking the whole condition worse (CardiacStaff C4).

Disease Progression and Future CareNo patients or carers had discussed with staff

what to expect as the disease progressed, ortheir end-of-life preferences.

Interviewer: . if you did have any problemsthat meant you needed to be hospitalizedagain, have they asked you how you’d liketo be cared for?

Respondent: No, no, nothing about that atall. Just this great stream of medicines, be-tween puffs and pills (Patient 15A).

Interviewer: What do you think is going tohappen?

Respondent: I don’t know, really, I don’tknow. No idea.

Interviewer: And the doctors and nurseshaven’t given you an idea of what’s goingto happen, or what the options are?

Respondent: No, nothing. Just nothing. Wenever talk about nothing, really it worriesme. They should tell me, you know, ‘‘Your hus-band is in this condition,’’ but. (Carer 7B).

Nine carers reported that their primaryquestions related to symptom managementand disease progression.

I need to know how bad the heart failurecan get: is it at its peak, or can it go furtherthan that?. [The kids] don’t ask their dad,they come to me, ‘‘How long has he got?Will it be a normal lifetime?’’ And I say tothem ‘‘I can’t answer you’’ (Carer 2B).

Living with Inadequate InformationBeing uninformed about CHF contributed

to patients’ anxiety. Nine patients describedadjustment problems including self-blame, an-ger, and shame. Carers reported that patientsexperienced anger/frustration (n¼ 6), de-pression (n¼ 4), panic/anxiety (n¼ 4), andconfusion (n¼ 1), reiterated by palliative staff:

Masses and masses of anxiety about the un-certainty of their life is really the major thing

they have. Shortage of breath [and] edematend to be the sort of symptom problemsthey have, but I think that most of theones I’ve looked after, it’s mostly been anxi-ety (Palliative Care Staff P2).

To cope, patients focused on dramatic symp-toms such as fluid retention rather than the‘‘invisible’’ underlying cause:

Interviewer: . When you think about thefuture, what do you envisage, what do youhope for?

Respondent: Not keep coming in. It’s justwater retention, innit. Once they can masterthat, the other half I can live with.

Interviewer: . If the water retention wassorted you think everything else would be fine?

Respondent: Yeah (Patient 1A).

Barriers to Effective Information ProvisionDisease-Specific. All staff identified prognosti-

cation difficulties:

I think it’s almost impossible really. theycan be really, really poorly. and then sud-denly their heart seems to gain a bit morestrength and they’re up and potteringabout. so it’s very difficult to prognosticate,and I think that’s what’s often so uncertainand difficult (Palliative Care Staff P2).

Cardiac staff identified the unpredictabledisease trajectory as a reason why future careoptions are not discussed.

The problem is that many people who havequite severe heart failure actually managequite happily with a number of acute exacer-bations and are very ill and if broughtthrough it, stagger on again and then lead avirtually independent life (Cardiac Staff C2).

Patient-Specific. Sensory/memory impair-ment, common in this relatively elderly group,presents communication challenges:

I suppose they do [explain symptoms] but ithasn’t penetrated (Patient 12A).

What they explain [to] me, I forget (Patient10A).

Further challenges were patients’ lack ofboth insight regarding which questions to askand empowerment to question clinicians:

Vol. 36 No. 2 August 2008 153Communication Needs of Chronic Heart Failure Patients

Interviewer: When you go into hospital. doyou feel like you have the opportunity to askthe questions you want to ask?

Respondent: No, I don’t ask. what sort ofquestion to ask I don’t know (Patient 10A).

I haven’t really had the opportunity [to askquestions], I mean, with all due respect,these doctors are so busy, they’re doingward rounds (Carer 3B).

Specialism-Specific. Three cardiac staff re-ported a focus on curative and technologicalaspects of patient care that may overlook psy-chosocial needs:

[Heart failure is] chronic and intractable, andcertainly, from a cardiologist’s point of view,you don’t have many like that because mostof our conditions get better or you die.Thislong-term chronic deterioration is probablysomething we’re not terribly good at, particu-larly the psychosocial aspect (Cardiac StaffC2).

Staff Time and Resources. Both specialtiesagreed that the cardiology team lacked timeto communicate complex issues:

We don’t have that much time to always dothe things that we would like to do, like get-ting in touch with. the whole social careteams, social services. [or] even time tosit down and, you know, give them that psy-chological care, because always the nextappointment is there. It’s a real luxuryreally, to have that time (Cardiac Staff C4).

Staff also reported lack of clarity regardingwhat had been previously discussed with anddisclosed to patients, suggesting the need forbetter communication between teams and forwritten records of important discussions.

Recommendations to ImproveCommunication and Information

Patients and families made one recommen-dation regarding communication (Recommen-dation 1), and clinical staff made an additionaltwo (Recommendations 2 and 3). The first re-garded the type of information and communi-cation needed, with patients and carersrequesting easily comprehensible information:

Being spoken to over your head, you knowwhat I mean, that always bugs me. They

sort of talk, especially between themselves,I mean doctors and nurses, and you don’t al-ways know what they’re talking about quiteoften (Carer 20B).

All patients except one wanted to be told ofa poor prognosis directly and sensitively:

Honest is important. If you say ‘‘This is go-ing to happen,’’ I say ‘‘Okay, fine,’’ quite will-ing to accept it, but I think if you don’t knowanything, well, what happens if this hap-pens? What happened if that? And you startpanicking and it starts mucking up yoursleep. It does. play on your mind psycho-logically (Patient 13A).

Although patients believed that cardiac staffgave them an honest account (‘‘If you can’t putyour faith in them, who do you put your faithin?’’ [Patient 11A]), this belief was not borneout by the data:

Interviewer: So how do you raise these con-versations with the family?

Respondent: Well, you. take them aside, yousay ‘‘Well, this is the situation, you’ve heardwhat I’ve said to him or her directly, but Ihave to tell you that was the optimistic slant.for your point of view I have to tell you I’d bevery surprised if they were living in a month orsix weeks. And you must not convey that tothem because I’ve got to have that aspect ofhope from the patient’’ (Cardiac Staff C1).

The time and effort taken by outpatient staff tocommunicate were highly valued. Family confer-ences with staff were proposed to support carersin their role of family information providers:

I think it would [have done] the whole fam-ily the world of good.if we had all beencalled in and [someone] said ‘‘This is whatwe’re going to do, do you have any ques-tions?’’ So everything can be laid to rest,’cause all I can relay to family members iswhat I’m picking up, and sometimes I mightbe relaying wrong facts. And it can bequestions and answers, everybody’s mindput to rest, sorted (Carer 6B).

Respondents also proposed access to a tele-phone advice line or support group.

Second, clinical staff recommended mutualeducation and joint working between cardiol-ogy and palliative care. All palliative care staff

154 Vol. 36 No. 2 August 2008Harding et al.

stressed cardiac team involvement until death,with cardiology as the principal care team andpalliative care providing complex symptomcontrol and communication advice.

It’s nice to feel that there’s a specialist [pal-liative care] team we can call on when we’refeeling. a little bit out of our depth, andthere’s questions we can’t answer froma not necessarily medical perspective. it’snice to be able to call on someone who’sgot specialist knowledge (Cardiac Staff C5).

The thing to remember is, we are a specialistpalliative care service, but. a generalist canstill do it, you know, we can get involved inmore complex issues, but as far as generalpalliative care goes, cardiologists can dothat (Palliative Care Staff P6).

The third recommendation was for referralcriteria and care pathways for CHF patients,to clarify staff roles and facilitate communica-tion and information giving as diseaseprogresses:

I think perhaps if there was a form of proto-col it would be useful for us, to know whento refer them rather than, like I say, workingon a kind of instinctual. reaction. If therewere criteria, it would be fantastic, it would

be really, really useful, and I think we[would] utilize them certainly. It mighteven be useful with pre-empting the pallia-tive phase. Making protocol kind of for-malises it and makes it easier for people toaccept and utilize it (Cardiac staff C5).

The data on needs, barriers, and recommen-dations are modeled in Fig. 1.

DiscussionThe findings of this study confirm that CHF

patients and their families have a high level ofunmet palliative care need, and that lack ofinformation has a negative impact on theirquality of life.16e18,30 Adequate, appropriate,and timely communication is essential to en-hance self-management and compliance withmedication,20 reduce physical and psycho-logical morbidity,18 prevent unplanned admis-sion,23 inform decision making, and ultimatelyprovide a good death.31

Our data show that patients and families of-ten have specific questions, but feel unable toask them, and may be under the misapprehen-sion that they are being given full informationwhen they are not. Although patient anddisease-specific barriers to effective information

Barriers to effectiveinformation provision

1. Disease-specificDifficulty of prognostication

2. Patient-specificCommunication difficultiesof older populationHigh rate of co-morbidityPatients feel disempoweredto ask questions

3. Specialism-specificCurative focusLack of confidence and skillsin discussing end of lifeFear of taking away hopeConfusion and misapprehensionre: palliative careLack of knowledge of whento refer to palliative care

4. Staff time and resourcesInadequate timefor communicationLack of contact with families

Patient and carer needsand experience

1. CHF symptoms and managementPoor understanding of diseaseExpectations of symptom controlefficacy

2. Disease progression and future careAbsence of discussion with staffNo choices offered for managingfuture exacerbationsConfusion regarding implicationsof diagnosis

3. Living with inadequate informationUncertainty causes anxietySignificant psychological morbidityInability to plan appropriatelyUnrealistic expectations

Recommendations for cardiologyand palliative care clinicians

Methods of providing informationHonesty and sensitivity to reduceanxietyImprove comprehensibilityReduce burden through familyconferencesProvide a support groupor telephone line

2. Mutual education and joint workingCardiologists require generalistpalliative care training, includingcommunication skillsPalliative care staff require CHFmanagement skillsEstablish co-management systemsthat respect each specialtyCardiologists are best placedto continue care

3. Referral criteria and care pathwaysClarification of when to referand of specialist rolesFacilitates information provision

1.

Fig. 1. Integration of patient, family, and clinician data: communication and information needs, barriers, andrecommendations.

Vol. 36 No. 2 August 2008 155Communication Needs of Chronic Heart Failure Patients

provision were identified, we also found signifi-cant staff and specialism-related barriers, sup-porting the findings of other studies.32e36

However, there was enthusiasm from boththe cardiac and the palliative care teams for co-management and mutual education to im-prove patient outcomes. The difficulty ofprognosticating accurately, and the resultantuncertainty for patients and carers, as well asthe comprehension difficulties of some CHFpatients, and the fact that patients mightdeny the severity of their condition as a copingmechanism, mean that good communicationskills are vital among cardiac staff. Palliativecare staff can play a central role in trainingand supporting cardiac staff in providing infor-mation in sensitive, effective ways.

Important limitations of the study should benoted. First, the setting has a specialist pallia-tive care team on site, local community teamsand hospices; therefore, this population maybe relatively well served. Despite this, however,we found that all the patients interviewed hadpalliative care needs that were not currentlybeing met. Second, there is likely to havebeen sample bias, with less advanced patientsbeing recruited, although conducting homeas well as inpatient interviews potentially re-duced this bias. Finally, not every patient hada family carer, and not all carers of patientsin the study consented to participate. However,analysis demonstrated data saturation, whichsuggests that our sample was large enoughfor an exploratory study of this kind.25

This is the first study to integrate cardiology,palliative care, and patient and family views.This type of triangulation contributes to thecomprehensiveness of our findings,28 and al-lows the development of feasible and accept-able recommendations for how to meet CHFinformation needs. To ensure that cardiologyembraces the full disease trajectory, we advo-cate the following recommendations:

1. Skilled, honest provision of informationin formats that maximize comprehen-sion. This includes the development andevaluation of information-giving inter-ventions using appropriate and rigorousqualitative and quantitative methods.

2. Provision of training and the introduc-tion of agreed joint working protocolsfor cardiology and palliative care. Mutual

education may enhance cardiologists’skills in handling complex and end-of-life discussions, and improve palliativecare staff’s confidence in CHF manage-ment.37,38 Cardiology should continueas the principal care provider.

3. Development and evaluation of clear, mu-tually determined referral criteria andCHF care pathways to enable earlier palli-ative care intervention, and clarify refer-ral and staff roles.39

AcknowledgmentsThe authors are grateful to the Guy’s & St.

Thomas’ Charitable Foundation for the Ser-vice Development Grant to undertake thisstudy. They are also grateful to members ofthe Project Advisory Group who commentedon the study protocol, and to the patients, fam-ilies, and staff who participated.

References1. Solano JP, Gomes B, Higginson IJ. A compari-

son of symptom prevalence in far advanced cancer,AIDS, heart disease, chronic obstructive pulmonarydisease and renal disease. J Pain Symptom Manage2006;31(1):58e69.

2. Dayer M, Cowie M. Heart failure: diagnosis andhealthcare burden. Clin Med 2004;4:13e18.

3. Roger VL, Weston SA, Redfield MM, et al. Trendsin heart failure incidence and survival in a communi-ty-based population. JAMA 2004;292(3):344e350.

4. Levy D, Kenchaiah S, Larson MG, et al. Long--term trends in the incidence of and survival withheart failure. N Engl J Med 2002;347(18):1397e1402.

5. McMurray JJ, Stewart S. Heart failure: epidemi-ology, aetiology, and prognosis of heart failure.Heart 2000;83(5):596e602.

6. Bleumink GS, Knetsch AM, Sturkenboom MCJM,et al. Quantifying the heart failure epidemic: preva-lence, incidence rate, lifetime risk and prognosis ofheart failure: The Rotterdam Study. Eur Heart J2004 Sep 2;25(18):1614e1619.

7. Stewart S, MacIntyre K, Hole DJ, Capewell S,McMurray JJV. More ‘malignant’ than cancer? Five--year survival following a first admission for heart fail-ure. Eur J Heart Fail 2001;3(3):315e322.

8. World Health Organization. WHO definition ofpalliative care. Accessed June 27, 2006. Available athttp://www.who.int/cancer/palliative/definition/en/.

9. National Institute for Clinical Excellence(NICE). Chronic heart failure: management of

156 Vol. 36 No. 2 August 2008Harding et al.

chronic heart failure in adults in primary and sec-ondary care. Clinical guideline 5. London: NationalInstitute for Clinical Excellence, 2003.

10. National Heart Foundation of Australia and Car-diac Society of Australia and New Zealand. Guidelinesfor the prevention, detection and management ofchronic heart failure in Australia. http://www.heartfoundation.org.au/document/NHF/CHF_2006_Guidelines_NHFA-CSANZ_WEB_PDF-1.2MB.pdf. AccessedApril 15, 2008.

11. National Consensus Project for Quality PalliativeCare. Clinical practice guidelines for quality palliativecare. http://www.nationalconsensusproject.org/Guideline.pdf. Accessed April 15, 2008.

12. Heart Failure Society of America. HFSA 2006comprehensive heart failure practice guideline.J Card Fail 2006;12:e1ee122.

13. Hauptman PJ, Havranek EP. Integrating pallia-tive care into heart failure care. Arch Intern Med2005;165(4):374e378.

14. Kodiath M, Kelly A, Shively M. Improving qual-ity of life in patients with heart failure: an innovativebehavioral intervention. J Cardiovasc Nurs 2005;20(1):43e48.

15. Lainscak M, Keber I. Patients view of heart fail-ure: from the understanding to the quality of life.Eur J Cardiovasc Nurs 2003;2:275e281.

16. Murray SA, Boyd K, Kendall M, et al. Dying oflung cancer or cardiac failure: prospective qualita-tive interview study of patients and their carers inthe community. BMJ 2002;325:929e932.

17. Rogers AE, Addington-Hall JM, Abery AJ, et al.Knowledge and communication difficulties for pa-tients with chronic heart failure: qualitative study.BMJ 2000;321:605e607.

18. Rogers A, Addington-Hall JM, McCoy ASM,et al. A qualitative study of chronic heart failure pa-tients’ understanding of their symptoms and drugtherapy. Eur J Heart Fail 2002;4:283e287.

19. Aldred H, Gott M, Gariballa S. Advanced heartfailure: impact on older patients and informalcarers. J Adv Nurs 2005;49(2):116e124.

20. Hirani SP, NewmanSP. Patients’beliefs about theircardiovascular disease. Heart 2005;91(9):1235e1239.

21. Exley C, Field D, Jones L,Stokes T. Palliativecare inthe community for cancer and end-stage cardiorespira-tory disease: the views of the patients, lay-carers andhealth care professionals. Palliat Med 2005;19:76e83.

22. Krumholz HM, Phillips RS, Hamel MB, et al. Re-suscitation preferences among patients with severecongestive heart failure: results from the SUPPORTproject. Study to understand prognoses and prefer-ences for outcomes and risks of treatments. Circula-tion 1998;98(7):648e655.

23. Baker DW, Asch SM, Keesey JW, et al. Differ-ences in education, knowledge, self-managementactivities, and health outcomes for patients with

heart failure cared for under the chronic diseasemodel: the improving chronic illness care evalua-tion. J Card Fail 2005;11(6):405e413.

24. Greenhalgh T, Taylor R. How to read a paper:papers that go beyond numbers (qualitative re-search). BMJ 1997;315(7110):740e743.

25. Pope C, Ziebland S, Mays N. Qualitative re-search in health care. Analysing qualitative data.BMJ 2000 Jan 8;320:114e116.

26. Mays N, Pope C. Qualitative research: rigourand qualitative research. BMJ 1995;311:109e112.

27. Armstrong D, Gosling A, Weinman J, Marteau T.The place of inter-rater reliability in qualitativeresearch: an empirical study. Sociology 1997;31(3):597e606.

28. Mays N, Pope C. Assessing quality in qualitativeresearch. BMJ 2000;320:50e52.

29. Popay J, Rogers A, Williams G. Rationale andstandards for the systematic review of qualitative lit-erature in health services research. Qual Health Res1998;8(3):341e351.

30. Horne G, Payne S. Removing the boundaries:palliative care for patients with heart failure. PalliatMed 2004;18(4):291e296.

31. Selman L, Harding R, Beynon T, et al. Improv-ing end of life care for chronic heart failure patient-sd‘‘Let’s hope it’ll get better, when I know in myheart of hearts it won’t’’. Heart 2007;93:963e967.

32. Hanratty B, Hibbert D, Mair F, et al. Doctors’perceptions of palliative care for heart failure: focusgroup study. BMJ 2002;325:581e585.

33. Gibbs JSR, McCoy ASM, Gibbs LME, et al. Liv-ing with and dying from heart failure: the role ofpalliative care. Heart 2002;88(Suppl II):ii36eii39.

34. Wotton K, Borbasi S, Redden M. When all elsehas failed: Nurses’ perception of factors influencingpalliative care for patients with end-stage heart fail-ure. J Cardiovasc Nurs 2005;5(1):18e25.

35. Hanratty B, Hibbert D, Mair F, et al. Doctors’understanding of palliative care. Palliat Med 2006;20:493e497.

36. Zickmund S, Blasiole J, Brase V, Arnold R. Con-gestive heart failure patients report conflict withtheir physicians. J Card Fail 2006;12(7):546e553.

37. Zapka J, Hennessey W, Carter R, Amella E.End-of-life communication and hospital nursesdaneducational pilot. J Cardiovasc Nurs 2006;21(3):223e231.

38. Ismail Y, McNeill E, Townsend M, MacConnell T.Palliative care in heart failureda neglected area inspecialist training? Br J Cardiol 2006;13:283.

39. Selman L, Harding R, Beynon T, et al. Model-ling services to meet the palliative care needs ofchronic heart failure patients and their families:current practice in the U.K. Palliat Med 2007;21(5):385e390.