Patient participation in palliative care decisions: An ethnographic discourse analysis

Abstract

The participation of patients in making decisions about their care is especially important towards the end of life because palliative care decisions involve extensive uncertainty and are heavily influenced by personal values. Yet, there is a scarcity of studies directly observing clinical interactions between palliative patients and their health care providers. In this study, we aimed to understand how patient participation in palliative care decisions is constructed through discourse in a community hospital-based palliative care team. This qualitative study combined ethnographic observations of a palliative care team with discourse analysis. Eighteen palliative care patients with cancer diagnoses, six family physicians, and two nurses were involved in the study. Multiple interactions were observed between each patient and health care providers over the course of 1 year, for a total of 101 consultations, 24 of which were audio-recorded. The analysis consisted in looking for the interpretive repertoires (i.e., familiar lines of argument used to justify actions) that were used to justify patient participation in decision-making during clinical interactions, as well as exploring their implications for decision roles and end-of-life care. Patients and their health care providers seldom addressed their decision-making roles explicitly. Rather, they constructed patient participation in palliative care decisions in a covert manner. Four interpretive repertoires were used to justify patient participation: (1) exposing uncertainty, (2) co-constructing patient preferences, (3) affirming patient autonomy, and finally (4) upholding the authority of health care providers. The results demonstrate how patients and health care providers used these arguments to negotiate their respective roles in decision-making. In conclusion, patients and health care providers used a variety of interpretive repertoires to covertly negotiate their roles in decision-making, and to legitimize decisions that shaped patients’ dying trajectories. Discourse analysis encourages awareness of the role of language in either promoting or hindering patient participation in decision-making.

Nurses defending the autonomy of the elderly at the end of life

“…For nursing professionals, such prerogatives are contained in the Resolution of the Federal Nursing Council (Conselho Federal de Enfermagem) 564/2017, in articles 39 and 42 which include the professional duty to provide information on health treatment, respect and promote actions that promote the person's participation in treatment decisions. In this way, it is confirmed that patient's autonomy must be ensured in the care process, based on communication and developed in the interactional process among agents involved in care (16,(18)(19) .…”

“…Thus, in order for the elderly's autonomy to be guaranteed, it is imperative that the team fosters mechanisms for securing compliance with this right. The national health policy that guides public and private services has principles and guidelines that guarantee the preservation of people's autonomy in defense of their physical and moral integrity (16)(17) .…”

Estratégias de cuidado familiar frente à terminalidade da vida

“…In Cuba, the first programs aimed at improving the quality of life of these patients emerged in the 1970s, with the medical and family health nurse program, whose main objective was to provide education to family members and patients in PC. [15][16] In the studies carried out in general hospitals, there is an intimate relation of PC directly and exclusively related to patients with malignant neoplasias, and 69% of the studies attended this group of patients. It should be emphasized that this number is even greater when considering that the 21% of the remaining studies attended oncological patients and patients with chronicdegenerative diseases.…”

An integrated approach to palliative care for frail older people living in the community: exploring a model of multidisciplinary collaboration.

“…(186,187) There is an argument in the literature for patients to accept their death and participate in the process. (188,189) There is an acknowledgement that a repertoire has been developed to encourage patients to participate in decisions around end-of-life (185), without identifying that the conversation is about palliative care. To facilitate an integrated model of palliative care for frail older people in the community it is important to understand the discourse of dying and to use terminology that allows the doctor and patient to navigate the decisions and care required without damaging the patient-doctor relationship.…”

“…However, as other researchers have found, discussion of palliative needs can be overlooked. This may reflect paternalism from the health practitioner (185), discomfort with the topic, or the patient may not wish to have these discussions. (203) Even with limited preparation, this theme indicates the care plan facilitates an overall increase in access to community-based services for the patients and carers.…”