Palliative care in its own discourse: a focused ethnography of professional messaging in palliative care

Background Despite 50 years of modern palliative care (PC), a misunderstanding of its purpose persists. The original message that PC is focused on total care, helping to live until the person dies, is being replaced and linked to feelings of fear, anxiety and death, instead of compassion, support or appropriate care. Society is still afraid to speak its name, and specialized units are identified as “places of death” as opposed to “places of life” meant to treat suffering. This issue is prohibitive to the implementation and development of PC policies worldwide. It is imperative to identify what message PC professionals are relaying to patients and other health care specialists and how that message may condition understandings of the right to access PC. Methods A qualitative study, employing focused ethnography and participant observation (PO) of the daily interaction of PC professionals with patients and family members in three different PC services. Two researchers independently conducted a thematic analysis, followed by member checking with participants. Results A total of 242 h of participant observation revealed the following messages sent by PC professionals in their daily interaction with patients and families: i) We are focused on your wellbeing; ii) You matter: we want to get to know you; iii) Your family is important to us. Conclusion The complexity of PC discourses contributes to the difficulty of identifying a clear universal message between PC professionals, patients and families. The PC professionals observed transmit a simple message focused on their actions rather than their identity, which may perpetuate some social/cultural misunderstandings of PC. It seems there is a common culture, based on the same values and attitudes, within the messages that PC professionals transmit to patients and their families. PC teams are characterised by their availability

Palliative care professionals’ message to others: an ethnographic approach

Introduction: Palliative care continues to be misunderstood within the world of healthcare. Palliative care professionals are key agents for promoting a greater understanding of their field. This study aims to examine the messages, both implicit and explicit, that palliative care professionals transmit about themselves and their work within their teams and to other health professionals. Methods: Focused ethnographic secondary analysis, exploring the interactions of palliative care professionals as it happens at everyday work. An inductive thematic analysis was developed from 242 h of observation of the daily work practices of palliative care professionals, focusing on their interactions with others. The data was coded without predefined categories, and the analysis was performed independently by two researchers. Results: Palliative professionals communicate that they are part of an active team working in an organized manner. They value and feel proud of their work. Despite the intensity of their work, these professionals are always available to others, to whom they demonstrate a clear professional identity. They convey their expertise in alleviating suffering, respectful behavior and collaborative ability. Conclusion: Professionals, in their daily work, communicate through their messages the essence of palliative care. It is essential that palliative care professionals perceive themselves as potential influencers and explicitly transmit the reasons for their intervention. Otherwise, others will perpetuate the myths, misunderstandings, and lack of a positive reputation for palliative car

The significance of gratitude for palliative care professionals: a mixed method protocol

Background: In palliative care (PC) patients and relatives (P/R) often show their gratitude to the healthcare professionals (HP) who care for them. HP appreciate these displays of gratitude, although the impact of the same has not been examined in detail. Publications analysed tell personal experiences in which HP say that displays of gratitude create sensations of well-being, pride and increased motivation to carry on caring. No systematic examination in PC was found. These aspects related to gratitude may be important in the field of PC, where there is constant exposure to suffering and the preoccupation which arises from wanting to help HP to go on with their work, but it needs closer study and systemisation. The purpose of this study is to understand the significance and the role of the gratitude received from P/R for palliative care health professionals (PCHP). Methods: A suitable mixed method will be used. The first phase will be quantitative and will consist of a survey, piloted by experts, whose goal is to explore the current situation in Spain as regards displays of gratitude received by HP at PC services. It will be sent by e-mail. The results from this part will be incorporated into the second part which will be qualitative and whose goal is to understand the significance of the experience of receiving displays of gratitude from the perspective of PCHP, using a phenomenological approach. Interviews will be undertaken amongst PCHP. The interview guide will be designed after taking the survey results into account. The project has been granted ethical approval. Discussion: These results are set to provide a key contribution within the context of the growing preoccupation on how to care for HP, how to ensure retention and keep them from resigning, as well as preventing burnout, emotional fatigue and boosting their resilience. In order to do this, it is both interesting and ground breaking, to analyse the repercussion of spontaneous gratitude shown by P/R towards PCHP, to see if this is a useful resource to reduce these problems and to encourage the greater presence of dignity and humanisation, for both those receiving care and for those providing it. This gratitude may be one of these strategies

Instrumentos para valorar al paciente con insuficiencia cardíaca avanzada: una revisión de la literatura

Una cuarta parte de las personas con insuficiencia cardíaca se encuentran en una etapa avanzada de la enfermedad durante la cual experimentan numerosos síntomas, comunes y angustiantes, que impactan en todas las esferas de la persona. En este contexto, la valoración y el seguimiento clínico de los pacientes se debe realizar de manera frecuente. A través de esta revisión, se pretende identificar cuáles son los instrumentos que se utilizan en la valoración de enfermos con insuficiencia cardíaca avanzada. Para este trabajo se ha considerado instrumento a cualquier tipo de cuestionario, escala, test o prueba funcional, que se utilice para valorar algún aspecto de estos enfermos. Se han identificado 49 herramientas que permiten valorar síntomas, aspectos psicológicos, cognitivos, espirituales y de calidad de vida. La información proporcionada sobre los instrumentos más utilizados y su disponibilidad y aplicabilidad constituye un primer paso para su posible integración en la práctica clínica diaria. De este modo, los profesionales que trabajan con estos enfermos, podrán mejorar la identificación de necesidades específicas, posibilitando el posterior manejo de las mismas y su seguimiento.A quarter of the people with heart failure are at an advanced stage of the disease, during which they experience numerous common and distressing symptoms that have an impact on all spheres of their life. In this context, there is a need for frequent assessment and clinical monitoring of patients. The aim of this review is to identify the instruments used in assessing patients with advanced heart failure. For the purposes of this study, any type of questionnaire, scale or functional test used to assess some aspect of these patients was considered to be an instrument. Forty-nine tools were identified that make it possible to assess symptoms, psychological, cognitive and spiritual aspects and quality of life. The information provided on the most used instruments and their availability and applicability is a first step for their possible integration into daily clinical practice. Thus, professionals who work with these patients can improve the identification of specific needs, enabling their subsequent management and monitoring

Palliative professionals' experiences of receiving gratitude: a transformative and protective resource

Providing palliative care can be both challenging and rewarding. It involves emotionally demanding work and yet research shows that burnout is lower than in other fields of healthcare. Spontaneous expressions of gratitude from patients and family members are not uncommon and are highly valued. This study explored the experience of Spanish palliative professionals who received expressions of gratitude from their patients and families. A phenomenological approach was used to better understand the role of receiving gratitude in participants¿ lives. Interviews were transcribed verbatim and a phenomenological approach to analysis was undertaken using macro-thematic and micro-thematic reflection. Two team members independently engaged in this reflection with an inductive approach. The analysis was shared and discussed at periodic meetings to identify the key themes and sub-themes of the gratitude experience. Ten palliative professionals were interviewed. Participants engaged in a process of recognizing, internalizing and treasuring the expressions of gratitude which they then used for reflection and growth. These expressions were a powerful and deeply meaningful resource that the palliative professionals revisited over time. Receiving expressions of gratitude invited a stronger sense of the value of one¿s self and one¿s work that was motivational and protective, particularly during challenging times

Student's Inventory of Professionalism (SIP): A tool to assess attitudes towards professional development based on palliative care undergraduate education

Introduction: Quality medical education, centered on a patient's needs, is crucial to develop the health professionals that our society requires. Research suggests a strong contribution of palliative care education to professionalism. The aim of this study was to design and validate a self-report inventory to measure student's professional development. Method: Sequential exploratory strategy mixed method. The inventory is built based on the themes that emerged from the analysis of four qualitative studies about nursing and medical students' perceptions related to palliative care teaching interventions (see Ballesteros et al. 2014, Centeno et al. 2014 and 2017, Rojí et al. 2017). The structure and psychometrics of the inventory obtained is tested in two different surveys with two different groups of medical students. Inventory reliability and construct validity are tested in the first survey group. To verify the inventory structure, a confirmatory factor analysis is performed in a second survey group. Results: The inventory has 33 items and seven dimensions: a holistic approach, caring for and understanding the patient, personal growth, teamwork, decision-making, patient evaluation, and being a health care professional. Cronbach's-alpha was 0.73-0.84 in all seven domains, ICC: 0.95. The confirmatory factor analysis comparative fit index (CFI) was 1 with a standardized root mean square Index 0.088 (SRMR) and obtained a 0.99 goodness-of-fit R-square coefficient. Conclusions: this new inventory is grounded on student's palliative care teaching experiences and seems to be valid to assess student's professional development

Cross-sectional survey of the wish to die among palliative patients in Spain: one phenomenon, different experiences

Objective Cultural backgrounds and values have a decisive impact on the phenomenon of the wish to die (WTD), and examination of this in Mediterranean countries is in its early stages. The objectives of this study were to establish the prevalence of WTD and to characterise this phenomenon in our cultural context. Methods A cross-sectional study with consecutive advanced inpatients was conducted. Data about WTD (Assessing Frequency & Extent of Desire to Die (AFFED) interview) and anxiety and depression (Edmonton Symptom Assessment System-revised (ESAS-r)) were collected through two face-to-face clinical encounters. Data were analysed with descriptive statistics, χ2 and analysis of variance. Results 201 patients participated and 165 (82%) completed both interviews. Prevalence of WTD was 18% (36/201) in the first interview and 16% (26/165) in the second interview (p=0.25). After the first interview, no changes in depression (p=0.60) or anxiety (p=0.90) were detected. The AFFED shows different experiences within WTD: 11% of patients reported a sporadic experience, while 7% described a persistent experience. Thinking about hastening death (HD) appeared in 8 (22%) out of 36 patients with WTD: 5 (14%) out of 36 patients considered this hypothetically but would never take action, while 3 (8%) out of 36 patients had a more structured idea about HD. In this study, no relation was detected between HD and frequency of the appearance of WTD (p=0.12). Conclusions One in five patients had WTD. Our findings suggest the existence of different experiences within the same phenomenon, defined according to frequency of appearance and intention to hasten death. A linguistically grounded model is proposed, differentiating the experiences of the ‘wish’ or ‘desire’ to die, with or without HD ideation

Dignity models in healthcare.A review of the literature

Errasti-Ibarrondo, M.B., Carvajal-Valcarcel, A., Martinez-Garcia, M., Arantzamendi-Solabarrieta, M., "Dignity models in healthcare.A review of the literature", Tipo de participación: Póster del congreso: 8th World research congress of the european association for palliative care, celebrado en Lérida, del 5 al 7 de junio de 2014