To Be or Not to Be Aware of the Disease Course in End-Stage Cancer!

A valuable study has been published questioning whether patients with end-stage cancer know their prognosis , the medical term for the course of their disease, and examining the effects of prognostic awareness on the disease process.

The Oncologist published this study of end-stage cancer patients, referred to as “terminal” in oncology, which showed that more than %40 of cancer patients, nearly half, lacked adequate knowledge and awareness of the course of their disease. We believe this proportion is higher in our country.

Reluctance to face a poor prognosis leads to unnecessary treatments and disruptions in palliative care , particularly important at the end of life. This also plays a major role in making the remaining time more traumatic and stressful. Developing accurate awareness of diagnosis and prognosis is therefore frequently emphasized in cancer research, because it is the most important prerequisite for preventing unnecessary treatments and focusing on care that improves quality of life.

A patient’s reluctance to face a poor prognosis should be respected. However, patients should be prepared to understand their prognosis accurately.

At the Beginning of This Study, Patients Were Divided into 4 Groups According to Their Awareness of the Disease Course

• the group unaware of the prognosis and not wanting to learn (%8),
• the group unaware but wanting to learn (%17),
• the group knowing the prognosis but with insufficient awareness (%15), and
• the group knowing the prognosis with adequate awareness (60)

A mathematical model was used to calculate the likelihood of moving from one awareness category to another. During the study, patients’ prognostic awareness did not change, but their tendency to behave in ways seeking greater understanding did change. At baseline, %60 had an appropriate level of awareness, %15 had insufficient awareness, %17 did not know their prognosis but wanted to learn, and only %8 belonged to the group both unaware and not wanting to learn.

The group unaware of the prognosis and not wanting to know was found least likely to progress to other awareness categories. Very close to death, %82 of patients had achieved adequate awareness, %18 still lacked sufficient awareness, and %3.6 were in complete denial. Preparation for death is not possible for these patients.

According to the study findings, oncologists should discuss prognosis with every patient in an appropriate manner and as soon as possible. Of course, terminal cancer patients need some time to develop accurate awareness. In this context, physicians should begin providing prognostic information early so that awareness can develop at the right time.

This study was conducted in Taiwan, where prognosis is explained to the patient’s family rather than the patient, and how much is disclosed to the patient depends on the family’s choice. A similar situation occurs in many countries, including ours.

Many cancer doctors worldwide prefer to wait to discuss prognosis until continuing curative (fully healing) treatments is no longer beneficial, or until patients and relatives request information. However, inappropriate timing can have undesirable consequences. Patients need adequate cognitive capacity to make consistent “end-of-life care” decisions. Providing prognostic information as soon as possible after advanced cancer is diagnosed is recommended.