Challenges and gaps delivering palliative care to patients with heart failure.

González Jaramillo, Valentina (2021). Challenges and gaps delivering palliative care to patients with heart failure. (Unpublished). (Dissertation, University of Bern, Faculty of Medicine and the Faculty of Human Sciences)

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Background: People living with heart failure (HF) have a wide range of physical and psychological symptoms and comorbidities. These affect their quality of life throughout the HF trajectory. Therefore, patients with HF, especially in advanced stages of this disease, may benefit from palliative care (PC). However, despite PC being widely recommended, few hospitals and HF clinics offer concurrent PC along with life‐prolonging therapies. Due to the unpredictability of the HF disease trajectory, prognostication is challenging, as well as identifying patients who might benefit from PC or have unmet needs. Additionally, patients with HF and implantable cardioverter efibrillators (ICD) have specific end‐of‐life (EoL) device management needs.

Aims: In this thesis, I contribute knowledge about the challenges and gaps in the delivery of PC to patients with HF. Through the 4 articles that form my thesis, I provide knowledge about the challenges of identifying patients who might benefit from PC or those who have unmet PC needs. I evaluate the performance of the surprise question (SQ) predicting 1‐year mortality in ambulatory HF clinics, in article 1. In article 2, I assess the prevalence of patients with PC needs in outpatient HF clinics with the NECesidades PALiativas (NECPAL) or Palliative Needs tool. Additionally, I use the NECPAL tool to identify patients with HF who might benefit from PC. For article 3, I evaluated the psychometric characteristics of the German Needs Assessment Tool: Progressive Disease – Heart Failure (NAT: PD‐HF). Finally, I quantify gaps from anticipatory care planning and EoL care of patients with ICD in article 4.

Methods: I used a cohort of 178 patients from 2 ambulatory HF clinics in Colombia for articles 1 and 2. To assess the performance of the SQ to predict 1‐year mortality (article 1), I consulted Colombia’s national mortality register for participants’ 1‐year vital status. To assess the NECPAL tool’s identification of patients with HF who might benefit from PC (article 2), I conducted a cross‐sectional analysis that compared health‐related quality of life and physical and psychosocial problems, between patients needing (+NECPAL group) and not needing (‐NECPAL group) PC. To validate the German NAT: PD‐HF, I used a singlecenter study at Inselspital’s Heart Failure Clinic in Bern, Switzerland (article 3). The tool was translated from English into German using a forward–backward translation. I assessed the German NAT: PD‐HF’s psychometric characteristics, including internal onsistency, inter‐rater reliability, test‐retest reliability, and face validity. I conducted a systematic review and meta‐analysis for article 4.

Results: These studies’ results are presented in 4 articles. Article 1 shows the SQ’s sensitivity to predict 1‐year mortality is 85% and its specificity is 57%. The SQ’s positive and negative likelihood ratios were 1.98 and 0.26, respectively. Its performance was similar among women and men, yet performed better in patients younger than 70 years, in patients with reduced or mildly reduced ejection fraction, and in patients at the New York Heart Association class III or IV. Article 2 shows that among patients under optimal medical 8 treatment in outpatient HF clinics, 44% met the NECPAL tool criteria to receive concurrent PC (+NECPAL). Compared to –NECPAL patients, +NECPAL patients had worse quality of life; more severe shortness of breath, tiredness, drowsiness, and pain; and greater psychosocial problems. Article 3 shows that the German NAT: PD‐HF validation had good internal consistency, substantial inter‐rater agreement for most of the items, and an almost perfect test‐retest reliability. Moreover, patients thought well of the tool, and they agreed that it could help to improve their quality of care. Article 4 shows that nearly 3 out of 4 patients (pooled estimate 28%, 95% CI 22‐36%) died with their ICD’s shock function active, despite guidelines recommending deactivation of this function at the EoL. For those with advance directives, few directives mentioned what to do with ICD devices at the EoL; the pooled prevalence estimate was only 1% (95% CI 1‐3%).

Conclusion: In this thesis, I contribute knowledge about gaps and challenges delivering palliative care to patients with heart failure. I show gaps regarding anticipatory care planning and end‐of‐life care for patients with implantable cardioverter defibrillators and offer strategies to address these gaps. Additionally, I provide knowledge and suggestions to overcome identifying patients’ palliative care needs. I assessed 3 tools to support the identification of palliative care needs; 2 of them, to support the identification of the needs due to limited life expectancy (the SQ and the NECPAL), and 1 to identify palliative care needs regardless of prognosis (the NAT: PD‐HF). The best screening tool depends on the situation, and whatever tool we use, it is better to screen and think about the palliative care needs of the patients using any tool than no screening at all.

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