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.


Available from: Richard Harding
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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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    ABSTRACT: OBJECTIVE: To evaluate the extent to which physicians engage in recommended elements of advance care planning (ACP) communication during outpatient clinic visits with heart failure (HF) patients. METHODS: We conducted a qualitative content analysis of 71 audio-recorded and transcribed outpatient visits with 52 patients ≥65 years recently hospitalized for HF and their physicians (n=44). RESULTS: We identified 25 instances of ACP-related communication over 15 of the 71 visits: in 17 instances, physicians explained the nature of HF but only once was the life-limiting potential of HF mentioned. Physicians discussed goals of care in 6 instances but elicited their patients' preferences in only 2 of those instances. Finally, physicians encouraged documentation of preferences in 2 instances. CONCLUSIONS: Despite recommendations for early ACP with HF patients, physicians rarely engaged in fundamental elements of ACP discussions during outpatient visits. We suggest a stepwise approach to supporting the process of ACP communication in practice. PRACTICE IMPLICATIONS: Given the importance of ACP in helping patients plan for their future care, outpatient clinicians should be helped to incorporate these discussions in the routine care of their HF patients. Using a simple heuristic might help physicians engage in fundamental elements of ACP during busy outpatient visits.
    Patient Education and Counseling 01/2013; 91(2). DOI:10.1016/j.pec.2012.12.016 · 2.20 Impact Factor
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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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    BMC Medical Research Methodology 01/2011; 11(1):12. DOI:10.1186/1471-2288-11-12 · 2.27 Impact Factor
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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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    ABSTRACT: This paper explores the experiences of older people living with heart failure and their transitions from independence to dependence and for some death. New Zealand's ageing population is predicted to increase from 12% in 2001 to 25% by the year 2051, similar to the worldwide trend of ageing. A high proportion of these people will have one or more chronic illnesses. Associated with the increase in survival is a growing body of research examining the needs of the older person with heart failure and finding particular problems with end of life care. Older people face many challenges in living with their heart failure, in particular the transition to dependence. To study the transition a longitudinal qualitative study using General Inductive approach was used. Participants were interviewed every 3 months for a 12-month period during 2006-2008. A total of 79 interviews with 25 people were completed. Our findings showed that transition was not a simple linear process with the older person moving from one phase to another; instead their experiences illustrated the complexity of transitions they faced and what helped them to manage these. The older people in this study illustrated the importance of trust in health professionals and believed they would receive good care. Their fears revealed concerns about being a burden as they deteriorate and becoming more dependent. Understanding the complex issues related to transition to dependence can provide health professionals with a framework for assessment and approaches to providing the support required.
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