Review Article
Palliative Care in Advanced Heart Failure: An International Review of the Perspectives of Recipients and Health Professionals on Care Provision

https://doi.org/10.1016/j.cardfail.2010.10.003Get rights and content

Abstract

Background

People with advanced heart failure (HF) have demonstrable supportive and palliative care needs. Effective service configuration and delivery should be informed by the views of those with personal experience and knowledge and should be based on available evidence. This systematic literature review aimed to collate qualitative and quantitative evidence on: 1) patients’ perceived needs and experiences of care provision; and 2) the perspectives and understanding of health professionals on care delivery.

Methods and Results

A systematic literature search using Medline, Embase, Cinahl, Psycinfo, and Amed identified 48 relevant studies. Data extraction and quality evaluation for included studies were conducted by 2 independent reviewers. Findings were grouped according to themes generated from the qualitative studies. Key findings were that advanced HF patients report little discussion with health professionals about their clinical status and sense a lack of timely support to accommodate their evolving needs. Health professionals report poor multidisciplinary communication and lack confidence both in diagnosing advanced HF and in communicating a poor prognosis to those affected, affecting the provision of good-quality coordinated care.

Conclusions

This review demonstrates the need for improvement in coordination of care and communication between patients, their families, and health care professionals. However, although there is broad agreement between the disciplines of cardiology and palliative care regarding the provision of therapies to reduce symptoms, improve function, and enhance quality of life, differences in views may arise, particularly regarding the maintenance of life-prolonging treatment as goals of care change.

Section snippets

Aims and Objectives

We systematically reviewed the literature on palliative care in advanced HF by exploring the evidence on: 1) patients’ understanding of their disease, their perceived needs and experiences of care provision; and 2) health professionals’ perspectives and experiences of care delivery.

Search Strategies

A literature search was conducted in 5 databases: Medline (1950–March 2010), Embase (1991–March 2010), Cinahl (1982–March 2010), Psycinfo (1970–March 2010), and Amed (1985–March 2010). Search terms included “chronic heart disease,” “advanced heart disease,” “palliative care,” “end-of-life care,” and “heart failure.” The inclusion criteria were:

  • 1)

    Research on the perspectives of patients or health professionals on advanced HF or the provision of palliative care in advanced HF.

  • 2)

    Care recipients who

Results

Our search strategy generated 1,047 citations of which 48 papers met our inclusion criteria. Twenty-six papers described patient perspectives, 18 examined health professionals’ perspectives, and 4 presented data derived from both patients and health professionals.

Breakdown of the methodology used in the 48 papers showed that 28 were qualitative, 16 quantitative, and 4 of mixed methods. Most quantitative studies originated from the United States (USA) (11/16) whereas most of the qualitative

Advanced HF Patient Perspectives (Table 1)

Studies exploring the patients’ perspectives were grouped according to the following themes: advanced HF patients’ understanding of their disease, their perceived needs, and views of their health and social care provision.

Although patients accepted that they had advanced HF,14, 15, 16 in 1 study many associated their symptoms with advancing age rather than the underlying progressive disease.17 There was little appreciation of the possible effects of HF on their lives, their prognosis, or an

Discussion

This review set out to explore the views of both recipients and providers of palliative care for advanced HF. Three themes were consistently identified by both patients and health professionals: a lack of continuity in the care provided to advanced HF patients, poor communication, and inconsistency in changing the emphasis of care from life prolonging to supportive.

Conclusions

This is the first review that has explored patient and provider perspectives on advanced HF care. It found consistent evidence that patients with advanced HF experienced shortcomings with the services currently provided. Likewise, health professionals from a range of relevant disciplines identified difficulties in providing coordinated care with current practice. Future research on development of palliative care service models for patients with advanced HF should consider ways to optimize

Acknowledgments

The authors acknowledge Marie Curie Cancer Care for funding this review.

Disclosures

None.

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