What does care mean? Perceptions of people approaching the end of life

Abstract

The importance of care was clearly illustrated through descriptions of the benefits of caring behavior and the negative consequences of uncaring behavior. In order to demonstrate the empathy and compassion expected and assumed of medical graduates and engender a feeling of being cared for among their patients, doctors need to invite and develop a relationship with those they are caring for. There needs to be a focus on each member of the caring relationship primarily as individual human beings.

Understanding psycho-social processes underpinning engagement with services in motor neurone disease: A qualitative study

“…[26][27][28][29] Rodriguez and Young 24 also found that service users questioned the benefit of lifesustaining interventions in situations where they perceived their quality of life as unacceptable. As in MND, people with advanced cancer prefer to be in control over treatment decisions and end-of-life care.…”

“…25 People with other terminal illnesses (including cancer, heart failure and obstructive pulmonary disease) also seek to avoid unwanted lifesustaining support and need to be reassured by healthcare professionals about end-of-life care. 26 They also have a need to trust healthcare professionals as they approach death, 26,27 expect healthcare professionals to communicate openly with them, [26][27][28][29] value honesty and sensitive sharing of information [26][27][28] and have a strong desire to be involved in the decisions about their care. 27,29 Similar to our findings, Evans et al 27 found that service users' trust (or mistrust) in healthcare professionals is calibrated by how they perceive healthcare professionals' approach towards them.…”

Who cares? A critical discussion of the value of caring from a patient and healthcare professional perspective

“…The aim therefore of this relationship is to enhance, protect and preserve patient dignity, humanity, wholeness and inner harmony. Perception is individual and subjective, varying in relation to personal needs, expectations and priorities and it is for the patient to define what care means for them (Janssen and MacLeod, 2010).…”

Storytelling - the past and the present

“…Caring cannot be subdivided or allocated, because it is emotional and personal, encompassing mutuality and reciprocity to provide support and reduce vulnerability. Psychological and social aspects of caring include understanding, warmth, mutual trust and belief (Janssen & MacLeod, 2010). As time is purposefully spent and experiences shared, fresh insights can be gained into the difficulties of a situation, giving rise to opportunities that enhance coping.…”