Informing Severely III Patients: Needs, Shortcomings and Strategies for Improvement

SUMMARY: The scope of palliative care has expanded gradually over the last decade. Provision of palliative care is not restricted to the last months of life as in some out-dated concepts. It addresses the needs of severely ill patients in all care settings (in- and outpatients, home care, hospices). Particularly in the last years, the value of integrating palliative care early in the disease trajectory of life-threatening and incurable diseases has become increasingly acknowledged. In order for patients to fully benefit from the concept of early integration of palliative care, they need to be provided with information tailored to their disease trajectory. For example, patients and relatives need to know how symptoms such as pain, depression, fatigue, breathlessness, or anxiety can be alleviated. The patients' knowledge and understanding will support the coping process, improve comfort and enhance patient participation and autonomy. Since information needs are highly individual and vary throughout the course of the disease, an interactive approach of assessing the patients' needs and responding to them adequately is mandatory. In this article, the information needs of advanced cancer patients and their families are explained, shortcomings of the present information concepts are discussed, and an integrative approach to responding to patients' information needs throughout the care pathway is advocated.