Ideals and Compromises in Palliative Care

Abstract

This qualitative study explores the concept of ideal palliative care as it broadens its field of application from terminal care to include people earlier in the course of an illness. Focus groups were held with palliative care professionals from community, inpatient, and hospital consultancy services to examine this issue. Palliative care professionals have clear views of what constitutes ideal care that include: establishing a relationship, setting goals, communication, acceptance, advocacy, flexibility, symptom relief, and recognising the identity of each person. There was agreement upon the nature of obstacles that prevented ideal care being achieved including obstacles created by families, other health professionals, administrative structures, and conflicts between the aims of care for a particular patient. Finally each clinician has a well-developed set of personal views of the acceptable limits to practice, although these views vary widely. The clusters of ideas emerging in this study describe three objects of different ontologic status. The elements of ideal care are conceptual in nature, highlighting the aspirations for workers. The obstacles reflect the real world that palliative care professionals must negotiate each day, giving rise to a form of care that was good enough. The acceptable standards and their limits is the degree to which staff will or will not accept the compromises in care raised by the real world of practice, reflecting the ethical stance of the workers. The pursuit of ideal care may be motivated by a complex mix of aspirations, real-world practicalities and fulfilment for both patients and staff.

Family members’ perceptions of inpatient palliative care consult services: A qualitative study

“…25 These themes served as initial codes and included establishing a relationship, setting goals, communication, acceptance, advocacy, flexibility, symptom relief, and recognizing the identity of each person. Codes were modified to fit the new data.…”

Palliative care utilization in oncology and hemato-oncology: a systematic review of cognitive barriers and facilitators from the perspective of healthcare professionals, adult patients, and their families

“…A large number of the selected studies' samples included doctors (20/52 [38.5%], including oncologists, hematooncologists, GPs, and residents), followed by HPs (17/52 [32.7%] that included various health professions including nurses), and patients and families (15/52 [28.8%], including studies that also included HPs). Some studies reported difficulties in negotiating the transition to palliative care [29] which was chaotic and frequently occurred a short time prior to death [72], due to lack of open communication between HPs and patients and families [31,55,72,74], as well as lack of information on patient prognosis [22,72] or available support and services [61,72,74]. A study found that long-term relationships between hemato-oncologists and patients result in considerable difficulty conducting end-of-life discussions [53].…”

“…Several aspects related to the lack of open communication were reported in these studies, such as absence of training in communication skills [23,34], problems with communication of a bad prognosis [45,54,78], lack of communication skills [22,61] and difficulty discussing spiritual, psychosocial, and emotional issues [52]. Lack of effective communication and collaboration between HPs and patients and families [31,39,55] and not using communication tools [23] were further obstacles to palliative care utilization. From some studies it emerged that collaboration and communication could be influenced by the unwillingness of the patient's family to openly communicate with the patient about diagnosis and prognosis (thus influencing the communication between the HPs and the patient) [55] as well as language or cultural barriers [34] or family emotional reactions [34], and difficulty in dealing with these for HPs [26].…”

Anger in palliative care: a clinical approach

“…It aims to develop a series of practical responses for clinicians when dealing with anger in practice. The work draws on several data sources, including empirical data from focus group discussions, whose methods have been discussed elsewhere 13 . Briefly, a series of nine focus groups was conducted with palliative care workers across a number of sites of care (Table 1).…”

“…The work draws on several data sources, including empirical data from focus group discussions, whose methods have been discussed elsewhere. 13 Briefly, a series of nine focus groups was conducted with palliative care workers across a number of sites of care (Table 1). The focus group content was subjected to a qualitative, thematic analysis and a series of concepts was identified and grouped according to common ideas.…”