Palliative Care in a Death-Denying Culture: Exploring Barriers to Timely Palliative Efforts for Heart Failure Patients in the Primary Care Setting

Abstract

Context: Heart failure (HF) is a complex, life-limiting disease that is prevalent and burdensome. All major cardiology societies and international clinical practice guidelines recommend the integration of palliative care (PC) interventions alongside usual HF management. Objectives: The purpose of this review of the literature was to evaluate the various barriers to the early initiation of PC for HF patients in the primary care setting. Methods: An integrative literature review was conducted in order to assess and incorporate the diverse sources of literature available. An EBSCO search identified relevant articles in the following databases: Medline complete, Academic Search Premier, CINAHL, PsycINFO, Cochrane Library, and SocINDEX. The search was limited to full text, peer reviewed, English only, and published between 2010 and 2019. Results: Barriers to the integration of PC for HF patients include poor communication between provider/patient and interdisciplinary providers, the misperception and miseducation of what PC is and how it can be incorporated into patient care, the unpredictable disease trajectory of HF, and the limited time allowed for patient care in the primary care setting. Conclusion: The results of this review highlight a lack of communication, time, and knowledge as barriers to delivering PC. Primary care providers caring for patients with HF need to establish an Annual Heart Failure Review to meticulously evaluate symptoms and allow the time for communication involving prognosis, utilize a PC referral screening tool such as the Needs Assessment Tool: Progressive Disease-Heart Failure, and thoroughly understand the benefits and appropriate integration of PC.

From powerlessness to recognition the meaning of palliative care clinicians’ experience of suffering

“…Talking about powerlessness and non-recognition are already parts of exchanges that are likely to aid in the circulation of recognition. Words that recognize institutional violence (Péoc’h, 2016 ) or the social and cultural denials of death (Byock, 2002 ; Crimmins et al, 2020 ; Tradii & Robert, 2019 ; Vachon, 2020 ) that condemn PC clinicians to isolation are also gifts of recognition. Recognition does not end there, however.…”

“…The collective attitudes of Western and industrialized societies are often characterized by a denial of death (Aries, 1981 ; Becker, 1973 ; Byock, 2002 ; Crimmins et al, 2020 ; Tradii & Robert, 2019 ; Zimmerman, 2004 ). Contemporary Western values consistently aim to push back the limits of mortality while striving for health, youth, and independence at all costs.…”

A Systematic Review of the Development and Implementation of Needs-Based Palliative Care Tools in Heart Failure and Chronic Respiratory Disease

“…Patients and families have identified denial, misperception about the potential benefits and purpose of palliative care, and negative previous experiences with services ( 20 , 21 ). While some providers report feeling comfortable providing a palliative approach ( 22 ), for others there is uncertainty about the role of palliative care and when this approach should be introduced ( 23 , 24 ). Health care providers' poor recognition of their patient's palliative care needs can be impacted by time constraints, a lack of education or training, and awareness or availability of standardized tools and referral pathways ( 20 , 22 – 25 ).…”

Palliative Care Conversations for Heart Failure Nurses: A Pilot Education Intervention

“…This results in patients and their families having unmet physical, emotional, spiritual, and social needs ( Klinedinst et al, 2019 ). One reason for this is nurses believe that while they are competent to conduct discussions about palliative care, they lack knowledge about the timing and content of palliative care conversations with people who have HF and their families because of the unpredictable disease trajectory ( Crimmins et al, 2021 ; Dunlay & Roger, 2013 ; Hjelmfors et al, 2014 ; Kavalieratos et al, 2014 ; Schichtel et al, 2019 ). Therefore, nurses do not want to give patients the impression they are nearing death ( Schallmo et al, 2019 ).…”