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Healthcare Providers' Perceived Communication Barriers to Offering Palliative Care to Patients With Heart Failure

An Integrative Review

Schallmo, Marianne K., DNP, ANP-BC; Dudley-Brown, Sharon, PhD; Davidson, Patricia M., PhD, MEd, BA, FAAN

Journal of Cardiovascular Nursing: March/April 2019 - Volume 34 - Issue 2 - p E9–E18
doi: 10.1097/JCN.0000000000000556
Feature Article/Online Only
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Context Heart failure is a chronic complex syndrome that is common and burdensome. International clinical practice guidelines recommend that healthcare providers communicate palliative care options with patients with heart failure.

Objectives The aim of this study was to conduct an integrative review to evaluate how healthcare providers perceived communication barriers to offering information to individuals in the palliative phase of heart failure.

Methods Four databases and the gray literature were searched from January 1987 to February 2017. Inclusion and exclusion criteria were applied. Studies were graded for strength and quality using a critical appraisal tool, and key themes were extracted and synthesized.

Results Ten articles met the full inclusion criteria. Most studies were qualitative or nonexperimental studies of good quality. Authors of several studies found that healthcare providers lacked basic knowledge about palliative care or did not possess sufficient knowledge to effectively provide care. Poor knowledge of palliative care created a barrier between the provider and the patient. Inadequate education or inexperience in palliative care led to the resistance of health providers to implementing a palliative approach.

Conclusions The results of this review emphasize a lack of knowledge as a barrier to delivering palliative care. Healthcare providers caring for individuals with heart failure need palliative care knowledge, skills, and competencies to ensure that this vulnerable population receives holistic patient-centered care.

Marianne K. Schallmo, DNP, ANP-BC Clinical Assistant Professor of Nursing, School of Nursing, Purdue University Northwest, Hammond, Indiana.

Sharon Dudley-Brown, PhD, FNP-BC, FAAN Associate Professor of Nursing, School of Nursing, University of Delaware, Newark.

Patricia M. Davidson, PhD, MEd, BA, FAAN Dean of Nursing, School of Nursing, Johns Hopkins University, Baltimore, Maryland.

The authors have no funding or conflicts of interest to disclose.

Correspondence Marianne K. Schallmo, DNP, ANP-BC, Purdue University Northwest, 2200 169th St, Hammond, IN 46323 (marianneschallmo@gmail.com).

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Problem Identification

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?”

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Methods

Definition

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.

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Literature Search

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.

FIGURE

FIGURE

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

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Data Evaluation

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.

TABLE 1

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.

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Data Analysis

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.

TABLE 2

TABLE 2

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Results

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.

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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

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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

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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

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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.”

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Discussion

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.

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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.

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Conclusion

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.

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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.
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    Keywords:

    communication; healthcare provider; heart failure; knowledge; palliative care

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