Connect : prognostic awareness and structured serious illness conversations in stage IV cancer patients
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Date
2020-12
Authors
Murray, G. Muller
Journal Title
Journal ISSN
Volume Title
Publisher
University of the Free State
Abstract
Prognostic awareness has been shown to be a key aspect regarding a patient’s understanding of their diagnosis, the available treatment options and the likely treatment and disease outcomes. It is recognised as essential to informed decision making in the setting where there is no curative therapy available, such as in advanced cancer. Palliative care aims to deliver holistic care to both the patient and their carers by enhancing the quality of life of a patient while also considering the role and burdens of the carers and family. A patient’s prognostic awareness is critical in advance care planning and studies have shown that patients and their families wish to discuss prognosis so as to help with decision making regarding a patient’s wishes at the end of life. Advanced care planning has been shown to result in reduced ICU admission and intensive interventions at end of life, while end of life discussions resulted in earlier hospice enrolment for patients and better quality of life and reduced depression in bereaved caregivers. This study represents the first South African study to evaluate prognostic awareness in stage IV cancer patients. An interventional study was used to evaluate the baseline prognostic awareness of 40 patients with incurable cancer being treated with palliative intent and attending our oncology outpatient clinic. Patients were randomised to standard of care with the addition of a measurement of prognostic awareness vs. the same plus a structured communication intervention designed to explore patients’ understanding of their diagnosis and expected illness trajectory, concerns and wishes for end-of-life care. The baseline subjective prognostic awareness of all patients was measured using face to face interviews utilising three questions based on different timeframes to adjudge the risk of death from cancer as described by Helft et al during two consecutive outpatient visits. Objective prognosis was determined using survival curves relevant to the specific cancer type and stage and discussed with the oncologist, while subjective prognosis was evaluated at both visits using the three questions which evaluated the patient’s perceived level of risk of dying from their disease over one year, five years and beyond five years. Thus, the unstructured approach used with half the patients consisted of the standard of care with the addition of three questions to determine prognostic awareness followed by an open ended, patient directed prognostic discussion of questions and views the patient may have had following the prognostic questions, these patients comprised the control group. In contrast with the interventional group, the same standard of clinical care and three questions to determine prognostic awareness was followed by a physician directed guided serious illness conversation administered in the standardised format as described by Bernacki et al. By comparing the objective prognosis with the patient’s subjective prognosis, patients were grouped as having high, low or poor prognostic awareness in each of the three timeframes. Data was analysed to evaluate the change from baseline values. There was a high level of willingness to participate in the study and discuss prognosis with a >95% participation rate. Results indicated that at baseline most patients had low to poor prognostic awareness with the majority significantly overestimating their prognosis. More patients in the interventional group had high PA both at baseline and at the second visit while there was a greater increase in high PA within the control group with the unstructured approach to discussing prognosis. The difference in baseline PA may be a confounding factor to parallel comparison of the groups. In evaluating for change in prognostic awareness within the control and intervention groups, both groups showed a trend towards increased prognostic awareness, however statistical analysis of the interventional and standard of care groups for the 1 year (p = 0.52 and p = 0.6), five year (p = 0.84 and p = 0.26) and open timeframe ( p = 0.84 and p = 0.38) did not reach statistical significance. Thus, the addition of a structured guided prognostic discussion compared to an unstructured approach was not shown to be superior in this study. At baseline the percentage of patients in the population as a whole with high prognostic awareness was 20%, 25% and 35% for the three timeframes. In contrast after a single application of the interventions used in our study, a trend for improved prognostic awareness from baseline in the population was evident with high prognostic awareness measured in 22.5%, 37.5% and 52.5% of patients for the three timeframes. It may be that the inclusion of a formal evaluation of prognostic awareness in itself results in a trend towards improved prognostic awareness, this study did not provide evidence that following such an evaluation the administration of a structured prognostic discussion yielded superior results to an unstructured discussion on prognosis. Further study in South African patients may advance the role and utility of high prognostic awareness in patients, families and caregivers faced with incurable illness.
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Keywords
Dissertation (M.Med. (Oncology))--University of the Free State, 2020, Prognostic awareness, Palliative care, Awareness of prognosis, Stage IV cancer, Advanced cancer, Advanced care planning, Serious illness conversation guide, Illness trajectory, Cancer bereavement