Heart failure (HF) is a chronic complex syndrome, and morbidity and mortality are high. Globally, it is estimated that 37.7 million people are affected.1 There are about 5.7 million Americans over the age of 18 years with HF,2 and the prevalence is expected to increase to more than 8 million people by 2030.3
Heart failure is a life-limiting syndrome with a poor prognosis. Approximately 50% of patients with HF will die within 5 years of diagnosis, and almost 40% will die within 1 year of first hospitalization.2,4 Heart failure has an adverse impact on quality of life, with symptoms such as breathlessness, fatigue, chest pain, and depression.5 These symptoms place physical and psychosocial burdens on both the patients6,7 and their families.7
Palliative care (PC) focuses on improving the quality of life for people with life-limiting illnesses.8 Although the definitions of PC and hospice care are often used interchangeably in the literature, there are distinct differences. Both focus on providing holistic care aimed at addressing patient and family physical, social, spiritual, and emotional needs. The difference is that PC is introduced at the initial diagnosis, is offered along with active treatment, and continues through end of life. Hospice care begins after active treatment is stopped, and end of life is expected at 6 months or less. Research authors reveal that patients with HF who received PC have better symptom control and improved quality of life.9–13
International clinical practice guidelines for PC have been established and recommend that healthcare providers (HCPs) communicate PC options with patients.14–17 However, authors of numerous studies demonstrate that patients with HF do not receive the same access to PC as other patients with life-limiting diseases such as cancer.18,19 Barriers to discussion of PC are multifactorial and attribute to HCP underuse of PC in the population with HF.20–25 Defining barriers is essential for both providing holistic patient care and advancing nursing practice and research.
The purpose of this article was to undertake an integrative review to examine and document the perceived communication barriers of HCPs in offering PC for adult patients diagnosed with HF. The aim of the review was to answer the question, “What are HCPs' perceived communication barriers to offering PC to hospitalized adult patients diagnosed with HF?”
An integrative methodology approach includes a broad inclusion to capture all literature relevant to a topic.26 This method is ideal because a summary of all relevant literature is optimal in answering a specific question. To maintain rigor, this integrative review followed the stages as identified by Whittemore and Knafl.26 The 5 stages include problem identification, literature search, data evaluation, data analysis, and presentation.
Articles were given consideration for inclusion if participants involved HCPs caring for adult patients with HF in the acute care setting and the HCPs identified communication barriers that inhibited PC discussions with patients diagnosed with HF. Articles also needed to be published in English in a peer-reviewed journal, be available in full text, and involve patients 18 years or older. Articles were excluded if they did not evaluate HCPs involved in direct care of adult patients with HF or were primarily focused in the intensive care unit, emergency department, or outpatient setting. Final inclusion was given to articles that assisted in answering the study's research question.
Databases searched included CINAHL, EMBASE, PubMed, and Scopus. Databases were searched from the dates 1987 to February 2017. A 30-year span was reviewed to completely capture and understand the topic. The gray literature was examined by hand-searching reference lists of included articles for potentially pertinent articles. Search terms were developed with the assistance of a medical research librarian. Five main concepts included “nurse,” “heart failure,” “palliative care,” “hospital,” and “communication.” Appropriate Medical Subject Headings terms, as well as minor variations to accommodate multiple databases, included “health personnel,” “healthcare provider,” “nursing,” “myocardial failure,” “heart decompensation,” “cardiac failure,” “advance care planning,” “advance directive,” “advance care plan,” “advance medical plan,” “end of life,” “terminal care,” “hospice care,” “acute setting,” “inpatient,” “ward,” and “communication barriers.”
The search strategy is shown in the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) flow diagram and is included in the Figure 1.27 The literature search yielded 359 articles, with an additional 4 articles added from other sources. There were 228 articles after duplicates were removed. Another 213 articles were excluded after a title and abstract review, leaving 15 articles. During the full-text review, 5 were excluded because they did not directly answer the research question. The final literature review included 10 articles.
The search generated quantitative and qualitative research, and integrative/narrative literature reviews. All research methods contributed valuable insight to the concept of perceived communication barriers. Combining both research and nonresearch in a mixed-methods approach allowed for evaluation of current knowledge of a situation.28 To aid in fully understanding communication barriers, it was decided to proceed with a mixed-methods approach using parallel synthesis. The review followed the Johns Hopkins Nursing Evidence-Based Practice Model to guide the process.29
All articles included in the review were evaluated for quality and evidence using the Johns Hopkins Nursing Evidence-Based Practice Research Evidence Appraisal Tool and Non-Research Evidence Appraisal Tool.29 One author completed the quality assessment rating, and 2 authors reviewed and approved the rating, with no disagreements between the authors. The research strength of evidence was graded on 3 levels (A, B, or C), and nonresearch was graded on 5 levels (levels I–V). The strength and quality grading criteria are described in Table 1.
There were 10 articles included in the final literature review: 5 qualitative, 3 quantitative, and 2 integrative/narrative reviews. Every article was rated as level III evidence with a B quality rating. There were 2 integrative/narrative reviews, but the studies in the reviews were either qualitative or nonexperimental, and that lowered the studies' strength. One investigation included both patient and HCP communication barriers, but because patient and HCP results were reported separately, the article met criteria for inclusion.
The Johns Hopkins Nursing Evidence-Based Practice Individual Evidence Summary Tool aided in systematic extraction of information, synthesis, and determining quality (Table 2).29 Topics in the summary tool include author and citation; evidence type; sample, sample size, and setting; aims; limitations; outcomes; and evidence level and quality. There were several common communication barriers that were interwoven throughout the research. The findings were coded and grouped into similar categories, creating depth to each category. One author created the themes and categories, and 2 authors reviewed and approved the themes and categories. These categories were then reduced and synthesized into key themes.
The themes and subthemes identified in this integrative review are as follows: (1) death and dying barriers, (2) HF barriers, (3) healthcare system barriers, and (4) knowledge deficit barriers.
Death and Dying Barriers
Healthcare providers expressed difficulty initiating a conversation because they felt personally uncomfortable discussing PC with patients.31 They also expressed feeling uncomfortable with death31 and noted that death is considered a taboo subject and that death and dying is perceived as a failure.31,33,35,37,38 Furthermore, HCPs often only discussed PC when the patient's health status worsened and death was imminent.38
Although HCPs stated honest conversation in patient care was not only ethical but also a due right of the patient,31,34 many still did not engage in PC discussion.31 Healthcare providers were afraid patients may feel abandoned or give up hope if they initiated a conversation on PC.31,33,34,37
Heart Failure Barriers
The uncertain trajectory of HF, with its frequent exacerbation and remissions, was often cited as a barrier as to when to initiate PC.31,33–35,38,39 The slow health decline of the patient with HF may cause HCPs to disagree on patient prognosis or make death seem distant.31,33,38 In a study by Garland et al,33 HCPs are sometimes reluctant to discuss PC as the disease process of HF can wax and wane and patients may briefly improve. Other HCPs prefer to focus on curative measures.33,35,37
The optimal timing to engage the patient and family on PC was also a barrier to HCP-patient and family communication. There was a lack of a consensus as for when the correct timing is to initiate PC.31,33,34,37–39 There was concern that hope may be destroyed if PC is discussed too early in the disease process or if it was discussed during a decompensation crisis.32,33,35 In 2 studies, registered nurses recognized the importance of PC and the need to start PC early in the HF disease process.37,39
Healthcare System Barriers
The hospital setting is a complex environment that requires multiple levels of HCPs to work in a team approach to provide care. Members of the team may include cardiologists, primary care physicians, advance practice providers, and registered nurses. The healthcare setting contributes to barriers as the physical logistics of the hospital environment include lack of time, an undefined communication structure, and financial restrictions. The lack of time was a major factor causing barriers to communication.31–33,37 In 1 study, registered nurses stated inadequate staffing does not allow time to build a rapport with the patient that is necessary to discuss complex issues, such as end-of-life conversations.37 This perception of a lack of time also impacted the family's ability to ask questions and contributed to their poor understanding.32,33 In the same study, authors found discussing PC and treatment options with multiple levels of HCPs difficult and time consuming.
The undefined communication structure in the hospital setting can lead to miscommunication between HCPs. The research authors support that a lack of a communication protocol can lead to uncertainty on defined roles of whose responsibility it is to discuss PC.33,37,38 There was a discussion among HCPs regarding which profession is in the best position and whose responsibility it was to discuss PC with the patient and family, and role ambiguity was cited a barrier to discussing PC with patients.32–35,37,38 Research authors found that undefined roles can lead to confusion between HCPs and, possibly, conflict because they may not agree on prognosis and treatment plan.37 Wotton et al37 found that some HCPs are hesitant to initiate PC because they are concerned they may be invading another HCP's responsibility. They also found that nurses felt in direct conflict with physicians when the nurse wanted PC initiated earlier in the HF disease process and the physician wanted to continue aggressive treatment.37
Knowledge Deficit Barriers
Palliative care and end-of-life care are not universally taught in the university or residency setting. Research authors support that inadequate education or inexperience in PC led to HCP resistance or decreased use of PC.37–39 In a study by Wotton et al,37 registered nurses and physicians inexperienced in PC did not give patients full relief of pain, citing inadequate knowledge of PC pain relief. In 3 articles, HCPs were not aware of the PC services provided in the hospital where they cared for patients.33,34,38 Authors of 1 study found nurses did not possess the PC knowledge to care for patients with HF needing PC.36 Kim and Hwang36 found that more positive nurse attitudes of PC led to increased preparedness to practice PC with patients with HF.
Healthcare providers must be able to impart timely and accurate health information to patients and family. Ziehm et al38 found that the lack of information given to patients regarding HF severity and prognosis was the foremost barrier to providing PC. Many HCPs cited inexperience in communication skills,31,33,35,38 a lack of confidence,32,35 or lack of education38,39 as a barrier to initiating the conversation with patients and their family.32,33,35 In a study by Garland et al,31(p15) HCPs avoided PC discussions because they had difficulty “finding the right words.”
This integrative review did not identify any level I or II research, because all included research was either qualitative or nonexperimental. The abundance of qualitative and nonexperimental descriptive research, with a lack of experimental or quasi-experimental studies, reveals the relatively new interest in the communication of PC specific to patients with HF. Evidence with the studies was rated as good quality.
Based on the strength, quality, and synthesis of the evidence, it is apparent that HCPs lack sufficient knowledge about PC in the adult population with HF. Several investigators found that HCPs lacked basic knowledge about PC or did not possess sufficient knowledge to care for patients with HF needing PC.36,37
This review has demonstrated that a lack of knowledge about PC is associated with a breakdown in communication between the HCP and the patient.20,36,37 Inadequate education or inexperience in PC led to HCP resistance and a low uptake of PC.20,36–38 Kim and Hwang36 found that more positive nurse attitudes of PC contributed to increased preparedness to apply PC principles.
Education regarding PC should involve both a basic understanding of key principles and communication techniques to increase the HCPs' knowledge, attitude, and preparedness to practice PC.22,36,37,40 Education alone will not change practice. Communication and skills training are necessary to assist the HCP to transfer knowledge into practice. Practice change can be supported through mentoring from experienced PC specialists. Hospitals will need to develop guidelines and policies to support delivery of PC to patients with HF. The overall goal should be developing PC education that results in improved patient outcomes.
Strengths and Limitations
The search strategy was intentionally broad to capture all applicable articles, but despite this, there is always the possibility that pertinent articles could have been overlooked. There was a limitation in the literature because most authors did not define or use a universally accepted definition of PC. The term “palliative care” was often used interchangeably with end-of-life care and sometimes interchangeably in the same article. This led to confusion because the reader was unsure whether the author was referring to communication barriers of PC or hospice, or both. The search was also limited to English-only articles, and non-English studies were not included in the search.
The lack of experimental research in the field of PC communication with patients with HF makes it difficult to know how to improve HCP communication. All research studies in this literature review were qualitative or nonexperimental studies. This demonstrates the relatively recent interest in the topic of PC in the population with HF. Although qualitative research is a good beginning point when exploring a new concept, it may have potential biases and lack generalizability as participants self-select, self-report, and include a small sample size.
Only authors of a few articles in this review addressed the ethnic and cultural background of the participants, yet this is an important consideration in PC.41 Authors of a few studies did mention race, of which they were mostly white participants. Because PC is potentially a culturally relevant issue, future research needs to be ethnically balanced to represent the current population.
Heart failure is a chronic complex syndrome that places a heavy physical, psychological, and financial burden on patients, family, and society. Initiating and implementing PC is important in HF, and this integrative review has identified the perceived communication barriers to PC. Although the literature strongly supports the lack of knowledge, attitude, and confidence as a barrier to delivering PC, these were not the only barriers identified. To bring about practice change, other identified barriers, such as disease-specific barriers and healthcare system barriers, will also need to be addressed.
What's New and Important
- Healthcare providers often lack PC knowledge and experience to care for patients with HF.
- A PC knowledge deficit is associated with a breakdown in HCP-patient communication, resistance to PC, and low uptake of PC.
- Education alone will not change nursing practice. Palliative care education must involve both an understanding of PC key principles and communication techniques.
1. Vos T, Flaxman AD, Naghavi M, et al. Years lived with disability (YLDs) for 1160 sequelae of 289 diseases and injuries 1990–2010: a systematic analysis for the global burden of disease study 2010. Lancet
2. Mozaffarian D, Benjamin EJ, Go AS, et al. Heart disease and stroke statistics—2016 update: a report from the American Heart Association. Circulation
. 2016;133:271–276. doi:10.1161/CIR.0000000000000350
3. Heidenreich PA, Albert NM, Allen LA, et al. Forecasting the impact of heart failure
in the United States: a policy statement from the American Heart Association. Circ Heart Fail
. 2013;6:606–619. doi:10.1161/HHF.0b013e318291329a
4. Liu L, Eisen HJ. Epidemiology of heart failure
and scope of the problem. Cardiol Clin
. 2014;32:1–8. doi.org/10.1016/j.ccl.2013.09.009
5. Bekelman D, Nowels C, Retrum JH, et al. Giving voice to patients' and family caregivers' needs in chronic heart failure
: implications for palliative care
programs. J Palliat Med
. 2011;14:1317–1324. doi:10.1089/jpm.2011.0179
6. Abshire M, Xu J, Dennison Himmelfarb C, et al. Symptoms and fear in heart failure
patients approaching end of life: a mixed methods study. J Clin Nurs
. 2015;24:3215–3223. doi:10.1111/jocn.12973
7. Yu D, Chan H, Leung D, Hui E, Sit J. Symptom clusters and quality of life among patients with advanced heart failure
. J Geriatr Cardiol
. 2016;13:408–414. doi:10.11909/j.issn.1671-5411.2016.05.014
9. Brannstrom M, Broman K. Effects of person-centered and integrated chronic heart failure
and palliative home care. PREFER: a randomized controlled study. Eur J Heart Fail
. 2014;16:1142–1151. doi:10.1002/ejhf.151
10. Delaney C, Apostolidis B. Pilot testing of a multicomponent home care intervention for older adults with heart failure
: an academic clinical partnership. J Cardiovasc Nurs
. 2010;25:27–40. doi:10.1097/JCN.0b013e3181da2f79
11. Diop MS, Rudolph JL, Zimmerman KM, Richter MA, Skarf LM. Palliative care
interventions for patients with heart failure
: a systematic review and meta-analysis. J Palliat Med
. 2017;20:84–92. doi:10.1089/jpm.2016.0330
12. Evangelista LS, Lombardo D, Malik S, et al. Examining the effects of an outpatient palliative care
consultation on symptom burden, depression, and quality of life in patients with symptomatic heart failure
. J Card Fail
. 2012;18:894–899. doi:10.1016/j.cardfail.2012.10.019
13. Sidebottom AC, Jorgenson A, Richards H, Kirven J, Sillah A. Inpatient palliative care
for patients with acute heart failure
: outcomes from a randomized trial. J Palliat Med
. 2015;18:134–142. doi:10.1089/jpm.2014.0192
14. American Academy of Hospice and Palliative Medicine; Center to Advance Palliative Care
; Hospice and Palliative Nurses Association; Last Acts Partnership; National Hospice and Palliative Care
Organization. National consensus project for quality palliative care
: clinical practice guidelines for quality palliative care
, executive summary. J Palliat Med
16. Ponikowski P, Voors AA, Anker SD, et al. 2016 ESC guidelines for the diagnosis and treatment of acute and chronic heart failure
: the task force for the diagnosis and treatment of acute and chronic heart failure
of the European Society of Cardiology. Eur Heart J
. 2016;37:2129–2200. doi:10.1093/eurheartj/ehw128
17. Yancy CW, Jessup M, Bozkurt B, et al. 2013 ACCF/AHA guideline for the management of heart failure
: A report of the American College of Cardiology Foundation/American Heart Association task force on practice guidelines. Circulation
. 2013;128:e240–e327. doi.org/10.1161/CIR.0b013e31829e8776
18. Beernaert K, Cohen J, Deliens L, et al. Referral to palliative care
in COPD and other chronic diseases: a population-based study. Respir Med
. 2013;107:1731–1739. doi:10.1016/j.rmed.2013.06.003
19. Harrison N, Cavers D, Campbell C, Murray SA. Are UK primary care teams formally identifying patients for palliative care
before they die? Br J Gen Pract
. 2012;62:e344–e352. doi:10.3399/bjgp12X641465
20. Dunlay SM, Foxen JL, Cole T, et al. A survey of clinician attitudes and self-reported practices regarding end-of-life care in heart failure
. Palliat Med
. 2015;29:260–267. doi:10.177/0269216314556565
21. Harding R, Selman L, Beynon T. Meeting the communication
and information needs of chronic heart failure
patients. J Pain Symptom Manage
. 2008;36:149–156. doi:10.1016/j.jpainsymman.2007.09.012
22. Kavalieratos D, Mitchell EM, Carey TS, et al. “Not the grim reaper service”: an assessment of provider knowledge
, attitudes, and perceptions regarding palliative care
referral barriers in heart failure
. J Am Heart Assoc
. 2014;3:1–11. doi:10.1161/JAHA.113.000544
23. McIlvennan CK, Allen LA. Palliative care
in patients with heart failure
. 2016;352:1–13. doi:10.1136/bmj.i1010
24. Oishi A, Murtagh FEM. The challenges of uncertainty and interprofessional collaboration in palliative care
for non-cancer patients in the community: a systematic review of views from patients, carers and health-care professionals. Palliat Med
. 2014;28:1081–1098. doi:10.1177/0269216314531999
25. Fitzsimmons D, Mullan D, Wilson JS, et al. The challenge of patients' unmet palliative care
needs in the final stages of chronic illness. Palliat Med
. 2007;21:313–322. doi:10.1177/0269216307077711
26. Whittemore R, Knafl K. The integrative method: updated methodology. J Adv Nurs
27. Liberati A, Altman DG, Tetzlaff J, et al. The PRISMA statement for reporting systematic reviews and meta-analyses of studies that evaluate health care interventions: explanation and elaboration. PLoS Med
. 2009;6:e1–e34. doi:10.1371/journal.pmed.1000100
28. Grove SK, Gray JR, Burns N. Understanding Nursing Research
. 6th ed. Elsevier Saunders: St Louis, MO; 2015.
29. Dearholt SL, Dang D. Johns Hopkins Nursing Evidence-Based Practice: Model and Guidelines
. 2nd ed. Sigma Theta Tau: Indianapolis, IN; 2012.
30. Aleksova N, Demers C, Strachan P, et al. Barriers to goals of care discussions with hospitalized patients with heart failure
. ESC Heart Fail
31. Barclay S, Momen N, Case-Upton S, Kuhn I, Smith E. End-of-life care conversations with heart failure
patients: a systematic literature review and narrative synthesis. Br J Gen Pract
. 2011;61:e49–e62. doi:10.3399/bjgp11X549018
32. Browne S, Macdonald S, May CR, Macleod U, Mair FS. Patient, carer, and professional perspectives on barriers and facilitators to quality care in advanced heart failure
. PLoS One
. 2014;9:1–8. doi:10.1371/journal.pone.0093288
33. Garland EL, Bruce A, Stajduhar K. Exposing barriers to end-of-life communication
in heart failure
: an integrative review. Can J Cardiovasc Nurs
34. Glogowska M, Simmonds R, McLachlan S, et al. “Sometimes we can't fix things”: a qualitative study of health care professionals' perceptions of end of life care for patients with heart failure
. BMC Palliat Care
. 2016;15:1–10. doi:10.1186/s12904-016-0074-y
35. Green E, Gardiner C, Gott M, Ingleton C. When all else has failed: nurses' perception of factors influencing palliative care
for patients with end-stage heart failure
. J Palliat Care
36. Kim S, Hwang WJ. Palliative care
for those with heart failure
: nurses' knowledge
, attitude, and preparedness to practice. Eur J Cardiovasc Nurs
. 2014;13(2):124–133. doi:10.1177/1474515113519521
37. Wotton K, Borbasi S, Redden M. When all else has failed: nurses' perceptions of factors influencing palliative care
for patients with end-stage heart failure
. J Cardiovasc Nurs
38. Ziehm J, Farin E, Schafer J, Woitha K, Becker G, Koberich S. Palliative care
for patients with heart failure
: facilitators and barriers—a cross sectional survey of German health care professionals. BMC Health Serv Res
. 2016;16:361–371. doi:10.1186/s12913-016-1609-x
39. Ziehm J, Farin E, Seibel K, Becker G, Köberich S. Health care professionals' attitudes regarding palliative care
for patients with chronic heart failure
: an interview study. BMC Palliat Care
. 2016;15:76–84. doi:10.1186/s12904-016-0149-9
40. Gerlich M, Klindtworth K, Oster P, Pfisterer M, Hager K, Schneider N. 'Who is going to explain it to me so that I understand?' Health care needs and experiences of older patients with advanced heart failure
. Eur J Ageing
. 2012;9:297–303. doi:10.1007/s10433-012-0244-6
41. Davidson PM, Phillips JL, Dennison-Himmelfarb C, et al. Providing palliative care
for cardiovascular disease from a perspective of sociocultural diversity: a global view. Curr Opin Support Palliat Care