Letters from Relatives: A Source of Information Providing Rich Insight into the experience of the Family in Palliative Care

Abstract

Studies on the effectiveness and efficiency of palliative care (PC) services that use a methodology similar to that used by studies in other medical specialties face serious limitations, since the goals of PC are substantially different. Qualitative research methods can make an important contribution to our understanding of the features of palliative care (PC) that are most relevant to patients and their relatives. The goal of this study was to understand the reasons behind the gratitude shown in letters from bereaved relatives sent to two PC units, one in Spain and one in Portugal. A thematic analysis of the content of the letters was independently carried out by three researchers, who later collaborated to write up the results. Relatives appeared grateful primarily for the humane attitude, professional treatment, and emotional support that their loved ones received from the PC team; they thanked the team for creating a special atmosphere and offering holistic care, and they talked about the contrast between PC and other forms of care. The unsolicited gratitude expressed in their letters constitutes a valid and particularly rich source of information about the contribution that a PC team can make.

Gratitude between patients and their families and health professionals: A scoping review

“…This has been evidenced not only in bereaved families, but in immigrants (Ekblad et al., ), pregnant women in a difficult context (Rahmani & Brekke, ), or patients facing imminent death (Engström et al., ). The aspects of care that patients and family members were grateful for mirror those found when gratitude was studied in the palliative care context (Aparicio, ; Centeno et al., ). These include: technical skills (Cacciatore et al., ; Engström et al., ; Owen, ; Shoemaker, ; Wilkes, ); communication skills (Cacciatore et al., ; Ekblad et al., ; Meert et al., ; Nowlin, ; Radestad et al., ; Shoemaker, ; Wills & Wills, ); time to listen (Ekblad et al., ; Engström et al., ; Moran et al., ; Radestad et al., ; Shoemaker, ; White et al., ); respect for patient and family (Barry et al., ; Cacciatore et al., ; Ekblad et al., ; Radestad et al., ; Wills & Wills, ); and personal attributes of the health professional such as compassion (Cacciatore et al., ; Ekblad et al., ; McLaughlin et al., ; Meert et al., ; Owen, ; Planavsky et al., ; Radestad et al., ; Shoemaker, ; William, ; Wills & Wills, ).…”

“…Expressions of gratitude from patients and their families toward health professionals are varied, just as described in other studies (Aparicio, ; Centeno, Arantzamendi, Rodríguez, & Tavares, ). Gratitude is expressed in multiple settings and contexts of care like intensive care (Engström et al., ; Meert et al., ), home care (McLaughlin et al., ), oncology (Converso et al., ; Raingruber & Wolf, ).…”

Paraplejia en paciente con esquizofrenia

“…A nuestro juicio, esa atención termina no con el final de la vida del paciente sino con una reflexión holística y ponderada de los cuidados paliativos proporcionados hasta el día de su fallecimiento. Este estudio se inició a partir de la lectura de las muestras de agradecimiento de los enfermos y familiares ingresados en las unidades de Cuidados Paliativos del Hospital Centro de Cuidados Laguna, un material importante en dicha reflexión 1 . La impresión general de partida que nos proporcionó la lectura de dichos textos es que los pacientes suelen conceder menos importancia a las técnicas, tratamientos o terapias aplicadas que a las conductas de cercanía y a las virtudes de los profesionales de la unidad asistencial.…”

What are families most grateful for after receiving palliative care? Content analysis of written documents received: a chance to improve the quality of care

“…In palliative care, gratitude from patients or their family carers constitutes a reality that often occurs during the mourning process of families who must fully face the intensity of palliative care. A previous study of our group on a different collection of letters gave us the opportunity to explore and reflect on the deep experiences of the family in palliative care [ 29 ]. Here, we are using a different focus looking at their vision of what kind of quality of care was received.…”