“Sometimes we can’t fix things”: a qualitative study of health care professionals’ perceptions of end of life care for patients with heart failure (original) (raw)
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Background: 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. Aims: (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. Design: 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. Setting: A tertiary hospital in London, UK. Results: 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. Conclusions: 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.
Removing the boundaries: palliative care for patients with heart failure
Palliative Medicine, 2004
Aim: This study aimed to explore the experiences of patients with severe heart failure and identify their needs for palliative care. Method: A qualitative design was chosen. Semistructured interviews were used for data collection and patients were interviewed in their homes. The sample consisted of 20 patients with a confirmed diagnosis of heart failure. Patients were between 60 and 83 years. Results: Patients reported difficulties in walking, extreme fatigue and problems managing daily activities. Having to rely on family, friends and neighbours was common, causing feelings of being a burden, loneliness and isolation. Patients talked about dying as well as their fears and frustrations in living with heart failure. Barriers to accessing information and social services were identified. None of these patients had been referred to specialist palliative care services. Conclusions: Patients' experiences were similar to those of patients living with advanced cancer and yet they received little support. Comprehensive routine assessment of the palliative care needs of patients living with severe heart failure is recommended. Palliative Medicine 2004; 18: 291 ¡/296
Heart Failure and Palliative Care: Implications in Practice
Journal of Palliative Medicine, 2009
The number of people with heart failure is continually rising. Despite continued medical advances that may prolong life, there is no cure. While typical heart failure trajectories include the risk of sudden death, heart failure is typically characterized by periods of stability interrupted by acute exacerbations. The unpredictable nature of this disease and the inability to predict its terminal phase has resulted in few services beyond medical management being offered. Yet, this population has documented unmet needs that extend beyond routine medical care. Palliative care has been proposed as a strategy to meet these needs, however, these services are rarely offered. Although palliative care should be implemented early in the disease process, in practice it is tied to endof-life care. The purpose of this study was to uncover whether the conceptualization of palliative care for heart failure as end-of-life care may inhibit the provision of these services. The meaning of palliative care in heart failure was explored from three perspectives: scientific literature, health care providers, and spousal caregivers of patients with heart failure. There is confusion in the literature and by the health care community about the meaning of the term palliative care and what the provision of these services entails. Palliative care was equated to end-of-life care, and as a result, health care providers may be reluctant to discuss palliative care with heart failure patients early in the disease trajectory. Most family caregivers have not heard of the term and all would be receptive to an offer of palliative care at some point during the disease trajectory.
Social Science & Medicine, 2009
This paper explores the continuities and discontinuities in recent policy on the extension of palliative care to people with heart failure in the UK. It focuses on how professionals in cardiology and specialist palliative care negotiate their disciplinary boundaries within the context of these policy moves. It draws out the semantic, historical and practical tensions between the core values of cardiology, with its focus on 'living with heart failure', and specialist palliative medicine, with its focus on 'dying with heart failure'. A focus on negotiation of interdisciplinary boundaries reveals different engagements with notions of dying and palliation rather than simply different disease trajectories. Further, uncertainty about prognosis and the probability of sudden death pose a challenge to two core principles of specialist palliative care: 'open awareness' and 'good death'. We are not suggesting that these differences are insurmountable. Rather, in highlighting these tensions, our aim is to problematise the relationship between policy and practice, as being mediated by negotiations of disciplinary values (culture) within a local context. We conclude by recommending a wider discussion on notions of 'open awareness' and how professionals within different medical disciplines engage with alternate ways of dealing with uncertainty and sudden death as part of human condition. The arguments presented here are based on data and analysis from a larger qualitative study conducted during 2004-2005 in north and central England. (S. Chattoo). 1 We focus on specialist palliative care as a speciality incorporating physicians in palliative medicine, nurse specialists and other multi-disciplinary professionals providing physical, psycho-social and spiritual care across hospital, hospice and home settings, rather than supportive or palliative care provided by generalists as part of day to day care. See The National Council for Palliative Care,
Heart Failure and Palliative Care
Elsevier eBooks, 2011
Purpose of review International bodies acknowledge that palliative care principles and access to palliative care services should be offered to persons living with and dying from advanced illness such as heart failure. Without an appropriately trained workforce, however, appropriate goals of care and associated reductions in hospital utilizations may not be feasible. Marie Curie Cancer Care, British Heart Foundation Scotland and NHS Greater Glasgow and Clyde are working in partnership to improve the quality and access to palliative care for patients and their caregivers living with and dying from advanced heart failure. A training needs assessment has been undertaken as part of this programme in order to inform the development of training specific to heart failure and palliative care. Recent findings The results of the training needs assessment showed that the majority of respondents had some level of training needs to underpin their existing knowledge and skills in relation to palliative care, heart failure or both. Summary Well trained professionals will improve the coordination, earlier identification, quality of care provision and communication between all stakeholders. In doing so, the opportunity to facilitate preferred care wishes and preferred place of care for patients and families is optimised. Without this aligning, clinical practice with national guidance is not feasible.
Patient and family members' perceptions of palliative care in heart failure
Heart & Lung: The Journal of Acute and Critical Care, 2013
Purpose: To describe patients with HF and their family members' (FMs) experiences with, and perceptions of, inpatient PC consultations. Methods: 40 semi-structured interviews were completed with 24 patients with late-stage HF and/or 16 designated FMs. Content analysis was used to derive themes from the data. Results: Four main themes resulted. Participants: 1) were generally ill-prepared for the PC consult; 2) pursued a plan that reflected their own understanding of patient prognosis, rather than that of the clinician; 3) described a primarily supportive role for PC; 4) often rejected or deferred PC services if they viewed hospice and PC as synonymous. Conclusion: Lack of awareness of PC and the conflation of PC and hospice were barriers to PC, and many participants felt that PC services are needed to fill the gaps in their care. A collaborative model of care may best meet the complex needs of this group.
Cardiovascular Research
Contrary to common perception, modern palliative care (PC) is applicable to all people with an incurable disease, not only cancer. PC is appropriate at every stage of disease progression, when PC needs emerge. These needs can be of physical, emotional, social or spiritual nature. This document encourages the use of validated assessment tools to recognise such needs and ascertain efficacy of management. PC interventions should be provided alongside cardiologic management. Treating breathlessness is more effective, when cardiologic management is supported by PC interventions. Treating other symptoms like pain or depression requires predominantly PC interventions. Advance Care Planning aims to ensure that the future treatment and care the person receives is concordant with their personal values and goals, even after losing decision-making capacity. It should include also disease specific aspects, such as modification of implantable device activity at the end of life. The Whole Person C...
Nursing concerns with palliative care and at the end-of-life in patients with heart failure
Nursing: Research and Reviews, 2015
Patients with chronic heart failure (HF) suffer from numerous symptoms and quality-of-life (QOL) concerns, and thus, palliative care, a multidisciplinary approach that includes the family and focuses on the improvement of patients' and their families' QOL through the relief of physical, psychosocial, and spiritual suffering, is needed. The transition to hospice care is made when HF is refractory to medical therapy or when the potential harm of treatment outweighs the potential benefits. Nurses are key persons for patients with HF as they may initiate and support palliative and hospice care, focus on delivering patients' goal-directed, well-coordinated care, champion patients' and caregivers' needs, and facilitate optimal QOL. Despite the inclusion of palliative and hospice care for HF patients in published guidelines, health care providers are frequently unfamiliar with palliative and hospice care and the needs of HF patients and their families. Therefore, this paper addresses the nurses' role in determining for whom, and when palliative and hospice care is appropriate; where and how palliative and hospice care should be provided; and the communication needs of patients and their families regarding referral to hospice, emergencies, implantable cardioverter-defibrillator therapy, ventricular assist devices, and continuous intravenous inotropic or vasoactive support at the end-of-life.
The Journal of cardiovascular nursing
The purpose of this study was to describe registered nurses' (RNs') perceptions of factors influencing care for patients in the palliative phase of end-stage heart failure (ESHF). Seventeen senior RNs across 3 acute care and 5 community centres in metropolitan Adelaide, Australia, participated in the study. In this descriptive, exploratory research project, we analyzed audiotaped indepth, semistructured interviews, using a computer-assisted (NVIVO) thematic procedure. According to participants, the care of patients with ESHF is dominated by a focus on symptom management and optimal pharmacologic therapies, with a perceived deficit in other aspects of palliative management. Key mitigating factors against quality palliative care for this population included the difficulty in recognising ESHF and reluctance by physicians to negotiate end-of-life decisions. In the acute care sector, nurses believed ESHF was medicalized and characterized by paternalistic care, with treatment gene...