Improving end-of-life care for patients with chronic heart failure: "Let's hope it'll get better, when I know in my heart of hearts I won't"

Department of Palliative Care, Policy & Rehabilitation, King's College London School of Medicine, Weston Education Centre, London, UK.
Heart (British Cardiac Society) (Impact Factor: 5.6). 09/2007; 93(8):963-7. DOI: 10.1136/hrt.2006.106518
Source: PubMed


Although chronic heart failure (CHF) has a high mortality rate and symptom burden, and clinical guidance stipulates palliative care intervention, there is a lack of evidence to guide clinical practice for patients approaching the end of life.
(1) To formulate guidance and recommendations for improving end-of-life care in CHF; (2) to generate data on patients' and carers' preferences regarding future treatment modalities, and to investigate communication between staff, patients and carers on end-of-life issues.
Semistructured qualitative interviews were conducted with 20 patients with CHF (New York Heart Association functional classification III-IV), 11 family carers, 6 palliative care clinicians and 6 cardiology clinicians.
A tertiary hospital in London, UK.
Patients and families reported a wide range of end-of-life care preferences. None had discussed these with their clinicians, and none was aware of choices or alternatives in future care modalities, such as adopting a palliative approach. Patients and carers live with fear and anxiety, and are uninformed about the implications of their diagnosis. Cardiac staff confirmed that they rarely raise such issues with patients. Disease- and specialism-specific barriers to improving end-of-life care were identified.
The novel, integrated data presented here provide three recommendations for improving care in line with policy directives: sensitive provision of information and discussion of end-of-life issues with patients and families; mutual education of cardiology and palliative care staff; and mutually agreed palliative care referral criteria and care pathways for patients with CHF.

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    • "HF patients report wanting to engage in ACP discussions with their physician as early as at the time of diagnosis [2], and recent guidance recommends that clinicians initiate ACP discussions in the outpatient setting, prior to and in anticipation of clinical decline, when a considered evaluation of treatment preferences is possible [3]. However, evidence that HF patients are unaware of their choices and alternatives related to future care [4] [5] [6] suggests that ACP is often underused or delayed until the end of life, or an emergent clinical need arises [5]. "
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    • "The ageing population also represents a significant concern for health systems in the near future given that the likelihood of developing heart failure rises steeply with age [5,6]. There is growing recognition that heart failure patients have many unmet needs, especially in relation to palliative and end-of-life care [7-11]. Health care policies and clinical practice guidelines have accordingly begun to advocate a palliative care approach within general heart failure care [12-16]. "
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    • "This study and the growing body of research (Horne & Payne 2004, Barnes et al. 2006a,b, Murray et al. 2007, Selman et al. 2007) exploring the impact of heart disease on older people, illustrates that discussions can take place and that older people can express their fears and concerns and their needs can be explored. Guidelines such as the 'Clinical practice guidelines for communicating prognosis and end-of-life issues with adults in the advanced stages of a life-limiting illness, and their caregivers' (Clayton et al. 2007) have useful suggestions for types of questions. "
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