The Complex Management of End-Stage Heart Failure: The Importance of Quality of Life

Hector Ventura, MD*

Heart failure affects nearly 6 million worldwide and is associated with high morbidity and mortality.

Because of the natural progression of the disease, approximately 10% of patients suffer from advanced heart failure. These patients have debilitating symptoms such as dyspnea on minimal exertion and even at rest, as well as weight loss. It is clear that this stage of the disease not only carries a poor prognosis but also decreases quality of life.

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.

It is important to point out that 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, symptom management, management of mechanical devices and palliative and hospice care.

The management of these patients presents a challenge but healthcare providers can work as a team to benefit patients and their families by helping them understand the disease, manage their symptoms, and maintain quality of life as long as possible.

Patients and families and caregivers 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. Some of the discussions should encompass preferences about resuscitation in case of cardiopulmonary arrest and what supportive measures and interventions could be performed.

Perhaps a very important topic of discussion is implanted defibrillators. If patients have an implanted defibrillator, one should discuss about inactivation of the device. In addition, 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.

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 with poor prognosis and the utilization of palliative care as well as the improvement in quality of life is paramount in the management of these patients.


Hector Ventura, MD, John Ochsner Heart and Vascular Institute, Ochsner Clinical School – The University of Queensland School of Medicine, New Orleans, LA, USA



Yancy CW, Jessup M, Bozkurt B, et al; American College of Cardiology Foundation; American Heart Association Task Force on Practice Guidelines. 2013 ACCF/AHA guideline for the management of heart failure: a report of the American College of Cardiology Foundation/American Heart Association Task Force on Practice Guidelines. Circulation. 2013 Oct 15;128(16):e240-e327.