ABSTRACT
Early palliative care (PC) integration in advanced and end-stage heart failure has shown to improve quality of life and spiritual well-being and to reduce physical symptoms. Barriers to implementation exist: perception that PC is opposite to "life-prolonging" therapies or is involved only in cancer disease and in end of life, prognostic difficulties in advanced heart failure, comorbidities, discrepancy between patient-reported symptom burden and objective measures of disease severity. This is why it is necessary to focus on patient and caregivers "needs" instead of exclusively numerical-objective measures, in order to emphasize clinical but also psychological, assistential and spiritual elements contributing to quality of life. The most appropriate instruments are "patient-reported outcome measures" (PROMs) or, better, "patient-centered outcome measures" (PCOMs), such as the Needs Assessment Tool: Progressive Disease-Heart Failure (NAT: PD-HF), Integrated Palliative Outcome Scale (IPOS), NECPAL and Supportive and Palliative Care Indicators Tool (SPICT). Finally, it is important to recognize triggers to initiate a PC approach (important changes in disease trajectory, difficult or refractory symptoms, frequent defibrillator shocks or transplant/mechanical support prevision, functional capacity decline, severe comorbidities, communication needs also for advanced care planning).
Subject(s)
Heart Failure , Palliative Care , Patient Selection , Patient-Centered Care , Quality of Life , Communication , Humans , Needs Assessment , Patient Reported Outcome Measures , Prognosis , Terminal CareABSTRACT
Burden symptom in advanced heart failure highly affects quality of life of both patients and caregivers, leading to severe functional limitation and social isolation. Symptoms in the advanced phases of the disease are numerous and often underestimated and undertreated. This negatively affects not only quality of life, but also increases hospitalizations, reduces therapeutic adherence, impairs cardiac function and leads to reduced survival. When symptom control cannot be achieved only with specific cardiologic therapy, optimal care should shift to a combination of life-prolonging and symptom-relief approach, possibly to be initiated as soon as advanced phases are detected. Optimal treatment of severe and invalidating symptoms requires a multi-modal and multi-dimensional approach, as pharmacological therapy represents only a part of a global evaluation that should include spiritual and psycho-social factors, potentially influencing symptom perception. Assessment therefore should rely on multi-modal and multi-dimensional patient-centered score models, such as the Edmonton Symptom Assessment System (ESAS), the Kansas City Cardiomyopathy Questionnaire (KCCQ), or the Integrated Palliative care Outcome Scale (IPOS).Pain, dyspnea, depression, fatigue and less frequent but distressing symptoms, including gastrointestinal disorders (nausea, vomiting, fecal impaction, hiccups), cough, itching, skin xerosis and restless legs syndrome, will be analyzed, and evidence of best palliative practice will be discussed.
Subject(s)
Heart Failure/therapy , Palliative Care/methods , Quality of Life , Heart Failure/physiopathology , Hospitalization , Humans , Patient Compliance , Severity of Illness IndexABSTRACT
Early palliative care (PC) clearly demonstrated its efficacy in patients with heart failure (HF), reducing symptom burden, mainly pain and depression, improving quality of life, and reducing the access to the health care system. However, there are not conclusive data on economic cost reduction. The reasons are related to the few patients involved in the studies dedicated to this topic, to the different clinical settings, different modalities of provision and funding of PC, and different timing of PC implementation. PC was not shown to reduce mortality nor hospital readmissions in randomized trials.The unanswered questions will be clarified only in larger studies, defining specific clinical settings, goals to achieve and standardizing the provision and funding modalities in the different countries.