In a recent study, published in The Oncologist, just under 10% of patients diagnosed with terminal cancer did not know their prognosis and had no interest in finding out. This unwillingness to face a poor prognosis can lead to unnecessary treatments and prevent patients from making appropriate end of life (EOL) plans, causing their remaining time to be more stressful and traumatic that it need be.
"Healthcare professionals should appropriately assess patients' readiness for prognostic information, and respect patients' reluctance to confront their poor prognosis if they are not ready to know, but sensitively coach them to cultivate their accurate prognostic awareness," says Siew Tzuh Tang, professor at Chang Gung University School of Nursing in Taiwan.
Tang led a team of researchers from Chang Gung University and Soochow University in Taiwan who questioned 247 terminal cancer patients on their knowledge of their condition and prognosis. They did this several times over the last six months of the patients' lives, allowing them to track how the patients' prognostic understanding progressed over time.
Based on the answers, they classified the patients' awareness of their prognosis into one of four categories: unknown and not wanting to know; unknown but wanting to know; inaccurate awareness; and accurate awareness. Using a mathematical model, they also calculated how likely patients were to move between these categories.
At the start of the study, almost 60% of patients already had an accurate awareness of their prognosis, with 15% categorized as having inaccurate awareness, 17% as unknown but wanting to know and 8% as unknown and not wanting to know. Over the course of the study, patients' awareness of their prognosis generally didn't change, but what change there was tended to proceed in the direction of more understanding.
More troublingly, patients categorized as unknown and not wanting to know were least likely to progress to other awareness categories. As a consequence, while 82% of patients had progressed to an accurate awareness of their prognosis just before death, this meant 18% still did not have a complete understanding, of which 3.6% were in complete denial. These patients were thus unable to make sufficient preparations for their death.
According to Tang, their findings suggest that healthcare professionals should discuss prognosis with terminal cancer patients as soon as possible, to give them the maximum amount of time to come to terms with it. "Since terminally ill cancer patients need time to develop an accurate awareness of their prognosis, clinicians should begin early in the disease trajectory to cultivate patients' accurate prognostic awareness by specific interventions tailored to their readiness for prognostic information in each distinct state of prognostic awareness," she says.
The study only questioned cancer patients in Taiwan, where the custom is to disclose the prognosis to family members rather than the patient and then allow the family members to choose how much to reveal. Nevertheless, Tang is confident that these findings will have relevance to cancer patients in many other countries.
"Physicians around the world commonly wait to discuss prognosis with terminally ill patients until they or their family members bring up the issue or when curative treatments are no longer available. Therefore, it is applicable to healthcare professionals around the world to follow the US national guidelines that physicians discuss prognostic information closer to patients' diagnosis of advanced cancer, when they are cognitively competent to make informed and value-consistent decisions regarding their EOL care."
Still, Tang says that similar studies should be conducted in other countries with different approaches to relaying prognosis information. She and her team are also planning to extend this research by evaluating the timing, depth and quality of actual patient-physician communication of prognostic information on EOL care.
"The study conducted by Tang et al provides quantitative evidence of variations in willingness to receive prognostic information," commented Eduardo Bruera at MD Anderson Cancer Center in Houston, US, who is a section editor of The Oncologist and was not involved in the research. "This study highlights the complexity and the need to personalize communication with patients and families with cancer. More research is badly needed in this area."
Full citation: "Transitions in Prognostic Awareness Among Terminally Ill Cancer Patients in Their Last 6 Months of Life Examined by multi-state Markov Modeling." Chen Hsiu Chen, Fur-Hsing Wen, Ming-Mo Hou, Chia-Hsun Hsieh, Wen-Chi Chou, Jen-Shi Chou, Wen-Cheng Chang and Siew Tzuh Tang. The Oncologist. Published Online: July 06, 2017, DOI: 10.1634/theoncologist.2017-0068.
Author Contact: Siew Tzuh Tang, Chang Gung University School of Nursing, Taiwan; email: firstname.lastname@example.org; tel: +886 922 347 122.
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