Living with and dying from advanced heart failure: understanding the needs of older patients at the end of life

Katharina Klindtworth, Peter Oster, Klaus Hager, Olaf Krause, Jutta Bleidorn, Nils Schneider

Heart failure (HF) is a life-limiting illness and patients with advanced heart failure often suffer from severe physical and psychosocial symptoms. Particularly in older patients, HF often occurs in conjunction with other chronic diseases, resulting in complex co-morbidity. This study aims to understand how old and very old patients with advanced HF perceive their disease and to identify their medical, psychosocial and information needs, focusing on the last phase of life. Qualitative longitudinal interview study with old and very old patients (≥70 years) with severe HF (NYHA III-IV). Interviews were conducted at three-month intervals over a period of up to 18 months and were analysed using qualitative methods in relation to Grounded Theory. A total of 95 qualitative interviews with 25 patients were conducted and analysed. The following key categories were developed: (1a) dealing with advanced heart failure and ageing, (1b) dealing with end of life; (2a) perceptions regarding care, and (2b) interpersonal relations. Overall, our data show that older patients do not experience HF as a life-limiting disease. Functional restrictions and changed conditions leading to problems in daily life activities were often their prime concerns. The needs and priorities of older HF patients vary depending on their disease status and individual preferences. Pain resulting in reduced quality of life is an example of a major symptom requiring treatment. Many older HF patients lack sufficient knowledge about their condition and its prognosis, particularly concerning emergency situations and end of life issues, and many expressed a wish for open discussions. From the patients' perspective, there is a need for improvement in interaction with health care professionals, and limits in treatment and medical care are not openly discussed. Old and very old patients with advanced HF often do not acknowledge the seriousness and severity of the disease. Their communication with physicians predominantly focuses on curative treatment. Therefore, aspects such as self-management of the disease, dealing with emergency situations and end-of-life issues should be addressed more prominently. An advanced care planning (ACP) programme for heart disease in older people could be an option to improve patient-centred care.