Outpatient Palliative Care in Heart Failure: An Integrative Review

Abstract

Background:

Early integration of palliative care (PC) for patients with heart failure (HF) improves patient outcomes and decreases health care utilization. PC provided outside of an acute hospitalization is not well understood.

Objective:

To synthesize the literature of outpatient PC in HF to identify the current landscape, the impact on patient health outcomes, key stakeholders' perspectives, and future implications for research and practice.

Design:

A systematic search of PubMed, Embase, CINAHL, Cochrane, and Web of Science was conducted from inception to February 2019 for studies of outpatient PC in adults with HF. Each study was analyzed to describe study characteristics, location of PC, types of providers involved, participant characteristics, and main findings, and to characterize domains of PC addressed.

Results

: Most studies (N = 19) employed a quantitative design and were conducted in the United States. The most common locations of PC were the home or PC clinic and providers were mainly PC specialists. Outpatient PC improved quality of life, alleviated symptoms, and decreased rehospitalizations for patients with HF. No study addressed all eight domains of PC. The structural, physical, and psychological domains were commonly addressed, whereas, least commonly addressed domains were the cultural and ethical/legal domain. Women and ethnic minorities were underrepresented in the majority of samples.

Conclusions:

This integrative review highlights the need to promote primary PC and future PC research focusing on a holistic, integrated, team-based approach addressing all domains of PC in representative samples.

Introduction

Approximately 6.2 million adults suffer from heart failure (HF) in the United States, leading to one in nine deaths.^1,2 Persons living with HF manage an average of 4.5 comorbidities contributing to high symptom burden, high health care utilization, poor quality of life, and challenging disease management.^3–6 As one of the most common admission diagnoses in the United States,⁷ HF accounts for 1%–3% of the total health care expenditures.¹ To address the poor prognosis and complex needs of HF patients, the American Heart Association HF treatment guidelines recommend integrating palliative care (PC) into traditional HF care.⁸

Palliative care is an effective approach to manage symptoms, improve quality of life, decrease health care utilization, and increase communication regarding care planning in serious illnesses such as HF.^9–13 Integrating PC enhances traditional HF management by addressing psychosocial, emotional, and spiritual needs, care coordination, and family involvement in care.^9,14 PC is categorized as primary PC, specialty PC, or a collaborative approach between primary and specialty providers. Primary PC is provided by all health care professionals without a PC specialty certification while specialty PC is provided by a certified or specially trained provider.¹⁵ A collaborative approach involves providers with specialty certifications collaborating with other providers, such as cardiologists or HF nurses.

Although PC is known to improve outcomes, HF patients rarely receive PC or it is integrated late in the disease trajectory.^3,16–18 Common reasons for late referral are due to the unpredictable nature of HF, stigma about end-of-life care conversations and misunderstandings of the benefits of PC by providers, patients, and family members.^3,19 In addition, PC is mainly provided in the inpatient setting ^4,20,21 even though patients spend the majority of their life in outpatient and community settings. Due to the chronic and unpredictable nature of HF, early integration of PC in settings outside of the hospital is essential, however, few hospital systems can accommodate this need and limit the use of PC to hospice referral.^4,21,22 Little is known about PC of HF patients in the outpatient setting such as in ambulatory clinics or the home. Therefore, this integrative review will synthesize the evidence to identify: (1) the current landscape of outpatient PC in HF, (2) the impact of outpatient PC on HF patient outcomes, and (3) key-stakeholders' perspectives of outpatient PC in HF. The framework of the eight domains of PC delineated by the 2018 National Coalition of Hospice and Palliative Care guidelines⁹ was used to identify the components of PC that have been used in outpatient PC for patients with HF.

Methods

Framework

Through in-depth interviews with patients and families, the National Coalition for Hospice and Palliative Care developed an eight domain framework (Fig. 1) to shape the Clinical Practice Guidelines for Quality Palliative Care.⁹ This framework describes core concepts, structures, and processes necessary for quality PC. By using this framework to synthesize the literature, we can examine the extent to which the eight domains are being addressed in current PC research.

FIG. 1.

Domains of palliative care.

Search strategy

Following consultation with a library scientist we developed a search strategy and finalized search terms. PubMed, Embase, CINAHL, Cochrane, and Web of Science were searched from the database's inception to February 2019 using medical subject headings, indexed terms, key words, and free text to capture articles related to PC in the outpatient setting for patients with HF. We focused on main search terms of “heart failure,” “palliative care,” “palliative medicine,” “palliative therapy,” “outpatient,” “ambulatory,” “community-based,” “home-based,” and “primary health care.” Table 1 provides the PubMed search strategy used to demonstrate Boolean/Phrase and limits used. When applicable, the PRISMA guidelines and recommendations for integrative reviews were used to guide and write this review.^23,24

Table 1.

Search Strategy

((“Heart Failure”[Mesh] OR “heart failure” OR “myocardial failure” OR “cardiac failure” OR “heart decompensation”) AND (“Primary Health Care” [mesh] OR “Outpatients”[Mesh] OR “Outpatient Clinics, Hospital”[Mesh] OR “Ambulatory Care”[Mesh] OR “Ambulatory Care Facilities”[Mesh] OR “Home Care Services”[Mesh] OR Residential Facilities [mh] OR outpatient^* [tiab] OR ambulatory [tiab] OR “home-based” OR “community based” OR “primary care” [tiab]) AND (“Palliative Care”[Mesh] OR “Hospice and Palliative Care Nursing”[Mesh] OR “Palliative Medicine”[Mesh] OR palliati^* [tiab]))

Inclusion and exclusion criteria

Studies were selected based upon inclusion and exclusion criteria determined a priori (Table 2). Including qualitative, quantitative, and mixed methods designs provided an opportunity to synthesize diverse perspectives and enhance our understanding of the state of outpatient PC for adults with HF. Studies which focused on providers, caregivers, or patients were included to allow for a holistic perspective. Articles were excluded if they included other diseases without separate results for HF. PC interventions in inpatient setting or skilled nursing facilities were also excluded. In addition, articles which only focused on hospice or advanced directives were excluded. Abstracts, dissertations, case studies, and non-English articles were excluded.

Table 2.

Inclusion/Exclusion Criteria

Inclusion	Exclusion
English language; any country	Abstracts, dissertations, case studies, systematic reviews, brief reports, letters to the editor
Quantitative, qualitative, or mixed methods original research studies	Articles, including other diseases, without separate results for HF
Adult participants (>18 years old) with HF, informal caregivers of adult HF patients, or HF providers (nurses, mid-level providers, SWs, physicians)	Interventions or services focused on hospice or advanced care planning only
Home, community, or ambulatory outpatient clinic setting	Inpatient or skilled nursing facility setting
Palliative care provided as an intervention or service

HF, heart failure; SW, social worker.

Data extraction

The initial search returned 1543 articles. After removing duplicates, a single reviewer screened 1083 articles based on title and abstract using the defined inclusion and exclusion criteria (Table 2). Following title and abstract screening, 70 articles were included in a full-text review and 19 total articles were selected for data extraction by two reviewers (Fig. 2). Data were extracted in a table from all studies regarding study characteristics, providers involved in the intervention or service, location of the study, and key outcomes or themes. Additional data regarding study limitations and demographics of participants are incorporated in the results.

FIG. 2.

Prisma diagram.

Using the conceptual framework detailed above, each study was assessed for the presence of the eight domains of PC through careful appraisal, multiple readings, and key word searching. The studies were classified as primary PC, specialty PC, or a collaborative model of primary and specialty PC based upon the description of the PC service or intervention.

Each article was appraised for evidence level and quality using the Johns Hopkins Nursing Evidence-Based Practice Appraisal tools.²⁵ Each study was given an evidence level between I and V and an evidence quality grade of either A, B, or C. Evidence level grades were assigned to each article of either high quality (A), good quality (B), or low quality (C) based on the consistency of findings, generalizability of results, adequacy of sample size, presence of a control group (if applicable), and whether definitive conclusions could be drawn from the data presented.

Results

Among all the studies (19), the majority discussed the delivery of PC (16), while others qualitatively explored provider, patient, and/or caregiver attitudes and knowledge of PC (3). Table 3 provides a summary of study characteristics and key findings. There were 12 quantitative studies, 6 qualitative studies, and 1 mixed methods study. Of the 12 quantitative studies, 6 studies were randomized controlled trials. Most studies (10) were conducted in the United States but other global perspectives were from Sweden (6) and China (3). The average sample size for quantitative studies was 89 participants (range 29–314) and 12 participants for qualitative studies (range 2–36). Of studies that reported age of HF patients (10), the average age (weighted by sample size) was 73.8 years. Thirteen studies reported New York Heart Association (NYHA) functional class, including a large percentage (74.1%) of study participants with advanced HF (NYHA class 3 or 4).

Table 3.

Summary of Synthesized Studies and Key Findings

Author (year) Country	Design	Population and sample			PC outpatient location	PC team	Components of PC intervention or program	Domains of PC								Findings
Author (year) Country	Design	Population; sample size	Socio-demographic profile (age in years)	Clinical profile advanced HF (%)	PC outpatient location	PC team	Components of PC intervention or program	Structural	Physical	Psychological	Social	Spiritual	Cultural	End of life	Ethical	Findings
Quantitative studies
Bekelman et al. (2018)⁴⁸ USA	RCT	Patients 314	Mean age: 66Female: 21%Caucasian: 72%Income <$20,000/y: 43%	62	PC clinicTelephone	RN, SW, HF physician, PC physician, Mental health provider	Physical symptom assessment; Psychosocial care; Medication management; Care coordination	√	√	√	√	—	—	√	—	Statistically significant improvement in depressive symptoms, anxiety symptoms, and fatigue.
Brannstrom and Boman (2014)²⁷ Sweden	RCT	Patients 72	Mean age: 79Female: 29%	97	Home	General practitioners, HF physician, HF RN	Physiological, social, and spiritual need assessment; Patient education; Symptom management; Goals of care; Bereavement support	√	√	√	√	√	—	√	√	Significant improvement in overall health-related quality of life, total symptom burden, self-efficacy, and disease-specific quality of life in the intervention group. Significant decrease in HF NYHA functional class, hospitalizations and fewer clinic, physician, and nurse visits in the intervention group.
Evangelista et al. (2012)⁵ USA	Case Control (prospective)	Patients 36	Mean age: 54Female: 29%Caucasian: 61%	29	PC clinic	PC specialist, HF physician	Physical and psychological symptom assessment; Illness understanding; Goals of care; Advanced care planning; Care coordination	√	√	√	—	—	—	√	√	Intervention group demonstrated improved physical health and both groups, intervention and control, reported significant reduction in symptom burden and depression and better overall quality of life at follow-up.
Evangelista et al. (2014)²² USA	Descriptive exploratory	Patients 29	Mean age: 54Female: 29%Caucasian: 22%	11	PC clinic	PC physician	Physical and psychosocial assessment; Advanced care planning; Treatment plan with goals of care	√	√	√	√	√	—	√	√	Patients who received initial PC consultation and follow-up PC care had significant reduction in symptom burden.
Evangelista et al. (2014)⁴⁹ USA	Descriptive correlational	Patients 42	Mean age: 54Female: 28%Caucasian: 61%	31	InpatientPC clinicTelephone	PC physician	Evaluation of participant values, goals, and preferences; Perceived need for support, treatment plan development, and care coordination	√	√	√	√	—	—	√	√	Patients who received >2 palliative care consultations had significantly greater scores in perceived control, and patient activation, and lower symptom distress.
Gandesbery et al. (2018)⁵⁰ USA	Chart review	Patients 80	Mean age: 59Female: 35%	87	PC cardiology clinic	PC physician, Palliative care RN, Cardiac nurse, Care coordinators	Symptom management; Goals of care; Discussion of hospice	√	√	√	—	—	—	√	√	Most Commonly reported symptoms were fatigue, pain, dyspnea, drowsiness, anxiety, and depression. Most frequently addressed issues were pain management and advanced care planning.
Ng and Wong (2018)³⁰ China	RCT	Patients 84	Mean age: 78.3Female: 48.8%	100	Home	PC nurse case managers	Physical and psychological symptom assessment/management social support; Spiritual/existential care; Goals of care Treatment preferences; End-of-life issues; Care transitions	√	√	√	√	√	—	√	—	Intervention group demonstrated significant improvement in overall, physical, psychological, and existential components of quality of life, HF-specific quality of life, depression, and shortness of breath. Significant decrease in caregiver burden was also reported in intervention group.
O'Donnel et al. (2018)⁵¹ USA	RCT	Patients 50	Mean age: 72Female: 42%Caucasian: 74%	64	Inpatient, telephone, outpatient clinic	PC trained SW	Evaluation of prognostic understanding; End-of-life preferences; Symptom burden; Palliative care or symptom management needs	√	√	√	√	√	—	√	√	In intervention group there was twofold increase in physician-level documentation of advanced care preferences in the electronic health record. Patient's prognostic assessment more consistent with the physician's assessment.
Rogers et al. (2017)⁴ USA	RCT	Patients 150	Mean age: 71Female: 47%Caucasian: 59%	88	Inpatient and outpatient follow-up	PC NP, PC physician, Counselor, Cardiology team	Physical, psychosocial, and spiritual care management; Advance care planning; Care coordination; Shared goal setting	√	√	√	√	√	—	√	√	Intervention group reported significant increase in the overall quality of life, functional status, depression, anxiety, and spiritual wellbeing when compared with control group.
Wells et al. (2018)⁵² USA	Content analysis of chart	Patients 61	Mean age: 70Female: 49%Caucasian: 80%	100	PC clinic	PC nurses	Not applicable	√	√	√	—	√	—	—	√	No statistically significant differences in any outcome measures between patients with palliative care consultation and those without palliative care consultation.
Wong et al. (2016)²⁶ China	RCT	Patients 84	Mean age: 78Female: 49%	89	Home telephone	PC nurse, case manager, PC physician	Environmental, psychosocial, physiological, and health behavior needs assessment; Care management; End-of-life discussion; Symptom management, Care coordination	√	√	√	—	√	—	√	—	Intervention group reported significant improvement in depression, dyspnea and quality of life, higher satisfaction with care, and decrease in readmission rates.
Wong et al. (2013)²⁸ China	Chart Review	Patients 44	Mean age: 79Female: 61%	100	Home	PC physician, PC nurse, counselor	Symptom assessment; Medication management; Education	√	√	√	√	—	—	√	—	Significant reduction in both HF and all cause hospitalization after the start of the advanced care program for palliative care.
Qualitative Studies
Brannstrom et al. (2007)⁵³ Sweden	Qual	Caregivers 3	Not reported	100	Home	PC physician, PC RN, OT/PT	Not described	—	√	√	√	—	—	√	—	Themes: Feelings of relief through burden sharing due to participation of a care team. Persistent worrying in case of emergency. Individual burden of caring for a loved one and always being “ready to step in.” Difficulty maintaining everyday life activities in addition to caregiving.
Brannstrom et al. (2006)⁵⁴ Sweden	Qual	Patients 4	Median age: 79Female: 25%	100	Home	PC physician, PC RN, OT/PT	Not described	√	√	√	√	√	—	√	—	Themes: Knowing that your life is” hanging by a fine thread”; Difficulty coping with the unpredictable nature of HF; Isolation; Being dependent on specialized care to remain living at home
Brannstrom et al. (2011)⁵⁵ Sweden	Qual	Physicians 15	Age range: 37–65 Female: 26.7%	n/a	n/a	PC physician, PC RN, OT/PT	Not described	√	√	√	√	—	—	√	√	Themes: Patients with HF have an unpredictable disease trajectory; Difficult situations occur when making decisions about continuing care or withdrawal of care; Unmet needs including more standardized follow-up care and interprofessional collaboration
Brannstrom et al. (2007)⁵⁶ Sweden	Qual	Patient 1Caregiver 1	Patient and caregiver age; ∼70	100 (patient)	Home	PC physician, PC RN, OT/PT	Not described	√	√	√	√	√	—	√	—	Themes: Incorporating unpredictable illness trajectory into everyday life and enjoying life despite suffering; Living life as it is now; Adapting to disease instead of struggling against it; Accepting both the good and the bad; Finding meaning in each other and God
Lem and Schwartz (2014)²⁹ USA	Qual	Patients 13	Age range: 33–82Female: 38%African American: 100%	Not reported	Outpatient cardiology clinic	NA	NA	√	√	—	—	—	√	—	—	No participants had knowledge of palliative care before the study. 60% of participants suggested that palliative care should be introduced early on in care. Unmet needs identified include (1) improved quality of life/symptom control, (2) improved relationships between patients and providers, (3) education throughout disease progression about prognosis and disease trajectory.
Stocker et al. (2017)⁵⁷ Sweden	Qual	Patients 13Caregivers 9Clinicians 14	Not reported	Not reported	Interview in home or at clinic	NA	NA	√	√	—	√	√	—	√	—	Providers did not feel that HF should be considered a terminal diagnosis and were uncertain about addressing palliative care and the end of life. Patients and caregivers primarily focused on the day-to-day experiences and symptom management and did not feel that end-of-life considerations applied to them.
Mixed Methods Study
Lowey and Liebel (2016)⁵⁸ USA	MM	NursesSurvey 112Interview 14	Mean age: 58Female: 100% Caucasian: 93%	n/a	Online survey	Home health nurses	Care transitions and referrals to home palliative care	√	√	—	—	—	—	√	—	Themes: Nurses were not comfortable starting discussions about the end of life; Patients are not aware that their HF is end stage; Barriers to palliative care referral.Results of Palliative Referral Decisions Survey: Most common source of palliative care referrals were from hospitals discharging patients home, then palliative care agency referral; 87% of nurses surveyed felt they were able to make a referral to the palliative care team; patient-related factors most commonly reported as “strongly related” to palliative care referrals included patient diagnosis and patient prognosis.

HF, heart failure; MM, mixed methods; NP, nurse practitioner; OT, occupational therapy; PC, palliative care; PT, physical therapy; RCT, randomized control trial; RN, registered nurse; SW, social worker; Qual, qualitative

Among included studies, the majority were of good (12) or high (6) quality based on the Johns Hopkins Nursing Appraisal Tool. Only one study was the lowest quality of grade C (Table 4).

Table 4.

Quality Appraisal of Included Articles

Article	Evidence level	Quality rating
Bekelman et al. (2018)⁴⁸	I	B
Brannstrom and Boman (2014)²⁷	I	B
Evangelista et al. (2012)⁵	III	B
Evangelista et al. (2014)²²	III	B
Evangelista et al. (2014)⁴⁹	III	A
Gandesbery et al. (2018)⁵⁰	III	C
Ng and Wong (2018)³⁰	I	B
O'Donnel et al. (2018)⁵¹	I	B
Rogers et al. (2017)⁴	I	B
Wells et al. (2018)⁵²	II	B
Wong et al. (2013)²⁸	II	B
Wong et al. (2016)²⁶	I	A
Brannstrom et al. (2007)⁵⁶	V	B
Brannstrom et al. (2007)⁵³	III	B
Brannstrom et al. (2006)⁵⁴	III	B
Branstrom et al. (2011)⁵⁵	III	A
Stocker et al. (2017)⁵⁷	III	A
Lem and Schwartz (2014)²⁹	III	B
Lowey and Leibel (2016)⁵⁸	III	B

Current landscape of outpatient PC

Location and type of outpatient PC

Among studies describing a PC service or intervention (16), the majority of PC interventions or services took place in the home (7) or a PC specialty clinic (4). Only one study described integration of PC services in a HF clinic or cardiology practice. Three studies included multiple locations of PC delivery.

Primary PC, delivered by a provider without specialty PC training, was only described by one study. Specialist PC was the most common type of PC described in the studies (12). Several studies (3) utilized a collaborative model of primary and specialty PC. In these studies, the specialty PC provider was responsible for the majority of care and shared details with the HF team through informal discussions, documentation in the electronic health record, or regular interdisciplinary meetings.

Domains of PC addressed

Using the framework of the eight domains of PC delineated by the Clinical Practice Guidelines for Quality Palliative Care,⁹ the most commonly addressed domains in interventions, services, or interview guides were the physical, structural, and psychological domains. Over half of the studies addressed the end of life, social, and spiritual domains. The least commonly addressed domains were the cultural and ethical/legal domains. No studies addressed all eight domains.

A subset of quantitative studies (12) described PC interventions or services, with most focused on physical symptom assessment and management (11). Psychosocial assessment or management was described by seven studies and care coordination was described by eight studies. Goals of care or treatment preference discussions were components of seven studies and conversations regarding end-of-life preferences or advanced directive documentation were included in six studies. Few studies (3) included spiritual or existential care and no studies mentioned cultural considerations of care.

Impact of outpatient PC on patient outcomes

Outcome measures of quantitative studies

Of the 12 quantitative studies, the most common outcome measure was the Edmonton Symptom Assessment System (ESAS), a validated measure of the patient's perception of physical symptom severity. Few studies (2) measured other physical outcomes such as functional status. Half of quantitative studies used a quality-of-life measure, including the McGill Quality-of-Life questionnaire (2) and Kansas City Cardiomyopathy Questionnaire (2). Few studies (4) measured psychological outcomes, such as depression or anxiety. Two studies reported documentation of an advanced directive or advanced care planning conversation. It is important to note that the quality-of-life measures often include multidimensional assessments of wellbeing, which may include psychological, social, spiritual, and physical wellbeing.

Quantitative findings of randomized controlled trials

Among the randomized controlled trials (6), five focused on patient-reported outcomes and reported statistically significant improvement in symptoms, including depression, anxiety, shortness of breath, fatigue, and overall symptom burden. Among the four studies which measured quality of life, all four studies found statistically significant improvement in quality of life following PC interventions. The sixth RCT, by O'Donnell et al. (2018),⁵¹ focused on provider documentation of advanced care planning preferences with statistically significant increases in provider documentation after a social worker-led intervention focused on increases in frequency of advanced care planning discussions between patients and providers

All studies, which measured hospital readmission rates (3), found statistically significant reductions in hospitalizations following PC intervention. The interventions described by two of these included a variety of intervention components, including physical, symptom, and psychosocial assessment, social and spiritual needs assessments, and care coordination.^26,27 The intervention for the third included fewer components, including symptom assessment, medication management, and HF education.²⁸

Quantitative findings from non-RCTs

Although outcome measures varied widely among the six quantitative studies, which were not RCTs, physical symptom burden, quality of life, patient activation, and perceived control significantly improved among those receiving PC. One chart review reported significant reduction in all cause and HF hospitalizations following PC. Divergent findings in one chart review showed no statistically significant differences in any outcome measures between the patients with PC consultations and those without.

Key stakeholder perspectives on outpatient PC

Qualitative and mixed methods findings

Qualitative articles included in-depth interviews with HF patients, caregivers, and a variety of providers. A common theme in all qualitative studies was uncertainty, including the unpredictable nature of HF and adapting life to this uncertainty. Patients discussed uncertainty related to the unpredictable changes in their bodies due to HF. However, only two out of the six qualitative studies included caregivers, an essential part of the care team.

One main difference emerged among this group of articles. When discussing HF, providers generally focused on long-term trajectory, whereas patients and caregivers focused on navigating and adapting to everyday life. Providers discussed uncertainty in estimating survival, often leading to ambiguity regarding when to initiate PC and which provider should be responsible for initiation. Providers were also uncomfortable starting discussions about end of life and felt that patients were not always aware their disease was end stage. Patients and caregivers focused on the need for day-to-day adaptation and symptom management. Another study examined knowledge and attitudes toward PC,²⁹ which showed that none of the patients or caregivers interviewed knew about PC, but the majority of participants suggested that the services of PC should be integrated early on in their HF care.

Limitations of included studies

Women were underrepresented in samples of the studies evaluated. Of the 11 studies which presented baseline demographic characteristics of the patient population, the majority (9) had a lower proportion of women than men in the sample. In addition, samples were not ethnically representative. Of the eight United States studies, which included demographic information regarding race and ethnicity, the majority of the studies had a primarily white sample (7). The international studies did not address ethnicity. Caregivers were included in four studies (4). Finally, all quantitative studies cited small sample size as a limitation, with only one randomized controlled trial stating it was adequately powered.³⁰

Discussion

Integrated summary of the literature

Taken together, this review illuminates several key findings with important implications for future research and practice. The review of 19 studies highlighted the availability of outpatient PC services in home and PC clinics for patients with HF, however, the nature of most services was specialist PC. Of the eight domains, physical, structural, and psychological are commonly addressed by PC programs/interventions and the ethical/legal and cultural domains were rarely addressed by the studies we identified. The availability of outpatient PC was significantly associated with positive patient outcomes to alleviate physical and psychological symptoms, improve quality of life, and decrease rehospitalizations. Still, there are significant gaps in research and clinical care, which promote availability of primary PC and address the cultural and ethical/legal domains in care of patients with HF in outpatient settings.

Changing the paradigm: Optimizing primary PC

Despite limited access to specialty PC in the outpatient setting, current research predominantly uses specialty PC models rather than primary PC models.^31,32 Reliance on specialist models for every HF patient with PC needs may be unrealistic.^33–35 Therefore, professional organizations recommend educating all providers in primary PC competencies.^9,36 However, education alone is unlikely to change practice patterns.¹⁵ HF providers need feasible, efficient, evidence-based ways to implement primary PC for their patients.³⁷

HF providers already address the physical domain of PC through excellent, guideline-directed symptom management.^17,38–40 This is an essential core competency of HF care and PC. However, no standard of care exists to routinely and systematically assess needs in other domains of PC.^3,41 This may contribute to the reality that none of the included studies addressed all domains of PC recommended by the Clinical Practice Guidelines for Quality Palliative Care.

Despite the current recommendation to integrate PC based on patient-reported needs rather than provider-estimated prognosis, the majority of existing PC needs assessment tools rely on provider prognosis rather than patient-reported needs.^17,38–40 Future research utilizing patient-reported multidomain needs instruments may promote patient and family-centered needs-based primary PC.^42,43

Gaps in the cultural and ethical/legal domains of PC

Although the guidelines from the National Coalition for Hospice and Palliative Care recommend addressing all eight domains in PC interventions or services,⁹ none of the studies addressed all domains. As providers are trained to focus primarily on the physical domain, PC integration provides opportunity to promote holistic care through assessment of additional domains.

The cultural domain and the ethical/legal domain of PC were the least addressed, potentially resulting in deficits in these domains of PC for patients and families. Culturally competent care can decrease disparities and improve patient outcomes and quality of care.⁴⁴ Furthermore, due to the unpredictable trajectory of HF, advanced care planning can promote autonomy and ensure a surrogate decision maker is identified. By addressing these domains, future PC research and practice can address relevant cultural, ethical, and legal needs of patients and families with HF.

Lack of representativeness

Although HF occurs equally in men and women and is more prevalent among African Americans than Caucasians,⁴⁵ participants were primarily Caucasian males with advanced HF. A lack of representativeness of women and ethnic minorities in PC research and practice merits evaluation and action. Current research indicates inequitable access and utilization of PC for ethnic minorities and those of lower socioeconomic status.^46,47 Combined with an underrepresentation of the cultural domain of PC, a lack of ethnic representativeness presents a challenge to examining if current PC interventions and services are accessible and appropriate for patients and families from different cultural backgrounds.

This important finding highlights the need to ensure appropriate representation of ethnic minorities, lower socioeconomic status, and women in future samples to promote culturally competent PC. In addition, samples, including participants with earlier stages of HF may reveal additional insight into integrating PC earlier in the disease trajectory.

Strengths and limitations

This review had several limitations. First, our search strategy may not have been comprehensive enough to capture all domains of PC, nor integrated disease management clinics that are not described with a PC focus. Exclusion of articles, which included hospice, may have resulted in inaccurate results in the spiritual, end of life, or ethical/legal domains, as these domains are often addressed in hospice. Also, there was only a single reviewer for article screening and selection, which may have introduced bias.

Despite limitations, this integrative review provides a synthesis of the current evidence specifically focusing on outpatient PC in patients with HF. Strengths of the study include consultation with a library scientist to develop a search strategy, use of inclusion and exclusion criteria determined a priori, and the organization of the literature by domains of PC. Inclusion of quantitative, qualitative, and mixed methods studies provides a more highly integrated understanding of the state of the science and care provision in this population.

Conclusion

The current outpatient PC landscape consists of specialty PC in the home or PC clinic setting, rather than utilizing primary PC or collaborative models. PC services and trials improve quality of life, alleviate physical and psychological symptoms, and decrease rehospitalizations. Significant gaps remain in clinical care and research, which address the cultural and ethical/legal domains of care. These findings highlight a need for future PC research which utilizes a holistic, integrated, team-based approach to addressing all domains of PC in representative samples.

Footnotes

Acknowledgments

The authors are grateful to Stella Seal, MLS for her guidance in the search strategy and Anushka Jojodia for designing the eight domains of palliative care graphic.

Funding Information

The lead author is a T32 fellow receiving support from the National Institute of Nursing Research (5T32NR012704-09).

Author Disclosure Statement

No competing financial interests exist.

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