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The truth is that few of those almost six million patients will live to reap the benefits of all of this exciting research and development. However, this is not a cause for despair. The heart and soul of palliative care is the relief of symptoms, relief of suffering, and improvement or mainte-nance of quality of life. There is much that the heart failure practitioner can do to improve the lives of the people we care for who are living daily with this sometimes oppressive syndrome. We can relieve dyspnea through the use of diuretics, nitrates and even chronic inodilator therapy in order to make everyday activities easier and restore a sense of independence and freedom. We can teach and coach patients and family caregivers to encourage self-care activities that control water-weight gain and increase activity and endurance. Palliative care encourages families to be involved in the care of the patient, to help when cognitive impairment, fatigue and breathlessness interfere with pharmacologic therapies and adherence. Palliative care practitioners are actively involved in helping patients and families have important end-of-life discussions that may prevent unwanted interventions. In addition to physical symptom relief, palliative care providers help relieve significant psychological pain: We facilitate discussions to help patients and their loved ones express feelings and achieve reconciliations.
The Challenges
Of course there are challenges inherent in outstanding palliative care. Aggressive management of volume to reduce congestion and the dyspnea, orthopnea and paroxysmal nocturnal dyspnea caused by the congestion is a double-edged sword in that it advances the physiologic process at the price of symptom relief. Aggressive afterload reduction often improves symptoms at the cost of lowered blood pressures associated with increased mortality — especially when accomplished by chronic inodilator therapy. The balance between the cost and benefit of these therapies, even in the hands of experienced heart failure specialists, is difficult at best. In fact, most people with heart failure are not managed by heart failure specialists, but by internal medicine and family practice physicians, nurse practitioners and physician assistants, who may find this clinical management inordinately time-consuming and occasionally confounding and discouraging. Palliative care should be delivered by experienced cardiovascular care providers who can focus on now, and what is, rather than the future and what may be. Unfortunately, palliative care is not often considered and, if considered, is seen as a last resort. Why is this when the philosophy of palliative care is so beneficial to those for whom a cure is not possible? The association of palliative care with cancer and hospice may be one reason why heart failure providers have been slow to embrace a plan of care that acknowledges that there is no cure. But palliative care philosophy and practice are independent of hospice, though they are of benefit for hospice patients, as well. Palliative care is not about hopelessness, it is about being hopeful about mitigating the limitation of symptoms in one’s daily life.