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Editorial

Culture, treatment paradigms, and advanced heart failure

Beattie, James M.

Current Opinion in Supportive and Palliative Care: March 2019 - Volume 13 - Issue 1 - p 1–2
doi: 10.1097/SPC.0000000000000415
CARDIAC AND CIRCULATORY PROBLEMS: Edited by James M. Beattie
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Cicely Saunders Institute, King's College London, London, UK

Correspondence to James M. Beattie, FRCP, FESC, BMI Priory Hospital, Priory Rd, Edgbaston, Birmingham B5 7UG, UK. Tel: +44 121 446 1668; e-mail: jmbeattie@hotmail.com

Heart failure is a modern epidemic, affecting an estimated 38 million people worldwide [1]. This life-limiting condition is the common mode of death in those subject to the effects of diverse cardiovascular conditions affecting left ventricular function. Although rates of death due to cardiac disease have declined in some high-income countries because of more effective disease prevention and management strategies [2], even within these national populations, disparities in outcomes persist, reflecting variation in risk factor exposure and healthcare access across the social and ethnic diversity of these societies. This is evident in those of Māori descent in New Zealand who make up about a sixth of that country's inhabitants. This ethnic group is subject to increased risk of cardiovascular morbidity and mortality and presents with heart failure about 16 years younger than their non-Māori counterparts [3,4]. The basis of this disproportionate cardiovascular disease burden and sequelae is multifactorial and includes socioeconomic factors in poverty and deprivation, as well as a relative lack of adoption of healthy lifestyle behaviors and engagement with healthcare systems. This is the background to the contemporary Whānau Ora health initiative, which seeks to promote the well-being of individuals living within indigenous communities in the context of their extended families (whānau), an approach consistent with Māori cultural norms [5]. This collective relationship is discussed in the interesting review by Mason et al. (pp. 3–8), which explores some of the challenges and opportunities relevant to the provision of palliative and end-of-life care for Māori patients with heart failure, set against the backdrop of their philosophy, traditions, and values.

To some extent, prevailing medical culture is also relevant to the more general delivery of healthcare to those with heart failure. Heart failure care is embedded within a relatively rigid biomedical model as enshrined in national and international heart failure societal guidelines. The widely advocated care structure is founded on a clinician-led multidisciplinary team approach, bolstered by patient education to promote self-management, but commonly there is a lack of coordination and poor communication between healthcare professionals, patients, and their families. Yet, much of the everyday care of those with heart failure depends on the support of family members, often their spouses, or other close relatives, or indeed people from their wider social circle. These individuals offer an array of assistance in providing general care, promoting heart failure-related dietary and medication adherence, and straightforward practical support in facilitating clinic attendances. These informal caregivers, whose involvement tends to be unacknowledged, are no less subject than the patient to the fluctuating psychosocial and physical burdens related to the vagaries of the roller coaster heart failure disease trajectory, sometimes requiring them to recalibrate the intensity or spectrum of their support following clinical crises, or in the face of inexorable decline toward the end of life [6]. The burdens associated with caring for a heart failure patient are well recognized [7], and being usually of a similar age, such caregivers are also susceptible to their own health issues, which might undermine their role. The multifaceted needs of such patient caregiver dyads are poorly recognized, and it is uncertain how best to foster the integrity of this partnership [8]. Nimmon et al. (pp. 9–13) from Vancouver describe a novel analysis based on Complex Adaptive Systems theory, which sheds some light on this and might inform the development of strategies to promote resilience of heart failure care beyond the guideline-driven model.

The article by German and Kalra (pp. 14–17) is a timely reminder that we must not be in thrall to evolving technological developments in clinical practice and implement such progress wisely. In an era in which people increasingly achieve an advanced age, we need to ensure that innovative clinical interventions are employed judiciously. The incidence of age-related degenerative aortic stenosis is growing [9], and the emergence of transcatheter aortic valve replacement (TAVR) might provide salvation for patients deemed unsuitable for cardiac surgery by virtue of comorbidities or poor functional status. However, predicting meaningful benefit from TAVR with respect to improved quality of life and survival is difficult on an individual basis, and risk assessment models offer moderate discrimination at best [10]. As posited in this review, the incorporation of geriatric domains such as frailty may improve patient selection and better inform the discourse with patients and families considering this treatment option. If the consensus designates this procedure as medically inappropriate, the involvement of palliative care professionals, as already established in some implant centers, would certainly be helpful and avoid a perception of abandonment [11,12].

The contribution of Walthall and Floegel (pp. 18–23) provides new insight into heart failure patients’ understanding of the nature and significance of breathlessness, and the impact of this common symptom on their day to day lives. Presenting the data synthesized from their literature review across five analytical themes affords comprehension of the multi-layered effects of breathlessness on their lived experience, including appreciation of the coping mechanisms and avoidance behaviors sometimes adopted to circumvent this symptom. That some patients also experienced anxiety linked to breathlessness is consistent with previous reports, particularly recent work on symptom clustering [13,14]. From the standpoint of the health professional, the other significant messages coming through were that we need to alter our practice, taking more time in clinics to explore the nuanced effects of breathlessness on the lives of our patients and communicate better with them.

Finally, we must remember that heart failure is a complex syndrome involving interplay between multiple organ systems. The review from Sanjiv Shah's group in Chicago (pp. 24–30) speculates on potentially adverse pathophysiological mechanisms arising from gastrointestinal congestion due to right ventricular dysfunction. These include increased sodium and water retention, destabilization of the intestinal mucosal barrier, and changes in the gut microbiome, which may contribute to the development of cardiac cachexia and the cardiorenal syndrome.

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Acknowledgements

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Financial support and sponsorship

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Conflicts of interest

There are no conflicts of interest.

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