Heart failure affects nearly 6 million people in the United States and is associated with high morbidity and mortality in the nation and worldwide. Patients with heart failure have multiple hospitalizations, resulting in a marked economic burden on healthcare expenditures.
Because of the natural progression of the disease, approximately 10% of patients suffer from advanced heart failure. This stage of the disease not only carries a poor prognosis but also reduces quality of life. The latter is because patients with advanced heart failure have debilitating symptoms such as dyspnea on minimal exertion and even at rest. In the past two decades, many interventions have focused on improving symptoms and quality of life and prolonging survival. These treatment modalities include improvement in medical management and the utilization of devices such as defibrillators, cardiac resynchronization therapy, heart transplantation, and mechanical circulatory support. Although these technologies and medical therapies are available and have been successful, mortality has remained high, and quality of life associated with chronic symptoms and acute exacerbations has decreased.
Moreover, the clinical characteristics of patients with advanced heart failure and the technologies used in its management have led to multiple ethical issues specifically related to advance care planning, management of mechanical devices, symptom management, and treatment near the end of life, including hospice care.
Although caring for these patients is challenging, healthcare providers can work as a team to benefit patients and their families by helping them understand the disease, manage their symptoms and illness, and maintain quality of life as long as possible.
Patients with advanced heart failure should be educated about different treatments, advance directives, and the role of palliative care and hospice care before their clinical condition worsens and they cannot actively participate in decisions about their care. Their families and caregivers should also be educated about these issues. Some of the discussions should address preferences about resuscitation in case of cardiopulmonary arrest and what supportive measures and interventions could be performed. In end-stage patients, defibrillators are an important discussion topic. If patients have an implanted defibrillator, the conversation should be about inactivation of the device. If patients have not had a defibrillator implanted, it is important to discuss that these devices will not result in survival benefits and should be avoided.
Coordinating the management of patients with advanced heart failure is paramount so they do not feel abandoned. Hospice care may provide options to relieve suffering from symptoms such as pain, dyspnea, depression, and insomnia. Psychosocial support, intravenous diuretics or inotropic agents, oxygen, and other comfort measures are useful in caring for these patients. If no more therapeutic options are available that will achieve survival benefits, the focus of care should switch to maintaining a minimal quality of life.
Advanced heart failure is a complex and chronic disease that can result in death. Efforts to improve quality of life should be directed to these patients. The utilization of palliative care and collaboration among healthcare providers is paramount for patients to achieve a peaceful and dignified death.
- © Academic Division of Ochsner Clinic Foundation