Little information is available about HF patients’ desires regarding having their healthcare providers address their spiritual concerns, feeling constrained in doing so, and the extent to which their spiritual needs go unmet | Psychology, Health & Medicine
Nearly half of our sample reported high levels of unmet spiritual needs and reported moderately strong desires to have their doctor or other healthcare professional attend to their spiritual needs, and moderately strong feelings of constraint in doing so. Spiritual constraint and unmet spiritual needs were associated with poorer spiritual, psychological and physical well-being, but these effects varied, depending on patients’ desire to discuss spiritual needs. These findings have important implications for clinical management of HF patients.
A study of heart failure patients’, carers’ and clinicians’ understanding of heart failure prognosis and its management | BMJ Supportive & Palliative Care
Objectives: Communication and planning for heart failure (HF) care near the end of life is known to be complex. Little is known about how the patient experience of palliative assessment and communication needs change over time, and how this might inform management. Our aim was to explore experiences of giving or receiving a prognosis and advanced palliative care planning (ACP) for those with HF.
Methods: We carried out a longitudinal grounded theory study, employing in-depth interviews with 14 clinicians (primary and secondary care) and observations of clinic and home appointments, followed by a series of interviews with 13 patients with HF and 9 carers.
Results: Overall, the majority of participants rejected notions of HF as a terminal illness in favour of a focus on day-to-day management and maintenance, despite obvious deterioration in disease stage and needs over time. Clinicians revealed frustration about the uncertain nature of HF prognosis, leading to difficulties in planning. Others highlighted the need to deliver problem-based, individualised care but felt constrained sometimes by the lack of multidisciplinary ACP. Patients reported an absence of prognostic discussions with clinicians.
Conclusions: This is the first study exploring the experiences of prognostic communication at all stages of HF. Findings raise questions regarding the pragmatic utility of the concept of HF as a terminal illness and have implications for future HF care pathway development. Findings support the incorporation of a problem-based approach to management, which recognises the importance of everyday functioning for patients and carers as well as the opportunity for ACP.
Patients with severe heart failure suffer from a high symptom burden and high mortality | BMJ Supportive & Palliative Care
Objectives: European and Swedish guidelines for HF care recommend palliative care for these patients. Different models for integrated palliative care and HF care have been described in the literature. No studies were found that qualitatively evaluated these models. The purpose of this study is to describe patients’ experiences of a new model of person-centred integrated HF and palliative care at home.
Method: Interviews were conducted with 12 patients with severe HF (New York Heart Association class IIIâ€“IV) and included in the research project of Palliative advanced home caRE and heart FailurE caRe (PREFER). Qualitative content analysis was used for data analysis.
Results: Two themes and a total of five categories were identified. The first theme was feeling secure and safe through receiving care at home with the categories: having access to readily available care at home, being followed up continuously and having trust in the team members’ ability to help. The second theme was being acknowledged as both a person and a patient, with the following two categories: being met as a person, participating in decisions about one’s care and receiving help for symptoms of both HF and comorbidities.
Conclusions: Person-centred integrated HF and palliative care provides a secure environment and holistic care for patients with severe HF. This approach is a way to improve the care management in this population.
Heart failure (HF) is a life-limiting illness and patients with advanced heart failure often suffer from severe physical and psychosocial symptoms. Particularly in older patients, HF often occurs in conjunction with other chronic diseases, resulting in complex co-morbidity. This study aims to understand how old and very old patients with advanced HF perceive their disease and to identify their medical, psychosocial and information needs, focusing on the last phase of life.
Objective: Palliative care (PC) in heart failure (HF) is beneficial and recommended in international HF guidelines. However, there is a perception that PC is underutilised in HF in the UK. This exploratory study aims to investigate, from a PC perspective, this perceived underutilisation and identify problems with current practice that may impact on the provision of PC in HF throughout the UK.
Methods: A prospective survey was electronically sent to PC doctors and nurses via the UK Association for Palliative Medicine and adult PC teams listed in the UK Hospice directory.
Results: We received 499 responses (42%—PC consultants). Although PC provision for patients with HF was widespread, burden on PC services was low (47% received less than 10 referrals annually). While PC was acknowledged to have a role in end-stage HF, there were differing views about the optimal model of care. Levels of interdisciplinary collaboration (58%) and mutual education (36%) were low. There were frequent reports that end-of-life matters were not addressed by cardiology prior to PC referral. Moreover, 24% of respondents experienced difficulties with implantable cardioverter defibrillator deactivation.
Conclusions: Low HF referrals despite widespread availability of PC services and insufficient efforts by cardiology to address PC issues may contribute to the perception that PC is underutilised in HF. The challenges facing PC and HF identified here need to be further investigated and addressed. These findings will hopefully promote awareness of PC issues in HF and encourage debate on how to improve PC support for this population.