Unanswered questions and future direction in the management of terminal breathlessness in patients with cancer

Abstract

Breathlessness is among the most common and deteriorating symptoms in patients with advanced cancer, which may worsen towards the end of life. Breathlessness in patients with estimated life expectancy of weeks to days has unique clinical features: it tends to worsen rapidly over days to hours as death approaches often despite current symptom control measures. Breathlessness in patients during the last weeks to days of life can be called ‘terminal breathlessness’. While evidence has accumulated for the management of breathlessness in patients with cancer who are not dying, such evidence may not be fully applied to terminal breathlessness. Only a few studies have investigated the best practice of terminal breathlessness in patients with cancer. In this paper, we summarise the current evidence for the management of terminal breathlessness, and propose future directions of clinical research.

The Bereaved Families' Preferences for Individualized Goals of Care for Terminal Dyspnea: What Is an Acceptable Balance between Dyspnea Intensity and Communication Capacity?

“…These findings suggest varying preferences among different individuals and situations, and empirically support our previous proposal that outcome measurements incorporating an acceptable balance between the two components be established in the palliation of patients with terminal dyspnea. 7 Potential strategies may include the development of a composite outcome based on both dyspnea intensity and communication capacity, 6 and separate measurements of dyspnea and communication capacity. 6,13 In addition, our finding that a large number of participants would prioritize dyspnea relief indicates that outcome measurements other than patient-reported outcomes are urgently needed to continuously evaluate terminal dyspnea in patients who have lost communication capacity.…”

“…6,13 In addition, our finding that a large number of participants would prioritize dyspnea relief indicates that outcome measurements other than patient-reported outcomes are urgently needed to continuously evaluate terminal dyspnea in patients who have lost communication capacity. 7 As proxy and/or objective measurements were shown to have only a weak correlation with patients' expression of dyspnea, future efforts should be made to develop more valid and reliable measurements. 26 The second important finding was that the perceptions about a good death, not the baseline characteristics, remained independent factors contributing to the preferences for individualized GOC.…”

“…Evidence from previous clinical trials conducted in patients with a relatively good condition may not be fully applicable to patients very close to death, and optimal treatment outcomes have not been established. 6,7 Moreover, terminally ill patients often develop impaired communication capacity associated with the natural course or medications with sedative effects. [6][7][8] A recent multicenter observational study involving terminally ill cancer patients with dyspnea revealed that even with the deliberate use of morphine with or without sedatives by palliative care specialists, approximately 30% to 40% of patients continued to experience dyspnea, and >20% became unable to communicate over 48 hours.…”

“…6,7 Moreover, terminally ill patients often develop impaired communication capacity associated with the natural course or medications with sedative effects. [6][7][8] A recent multicenter observational study involving terminally ill cancer patients with dyspnea revealed that even with the deliberate use of morphine with or without sedatives by palliative care specialists, approximately 30% to 40% of patients continued to experience dyspnea, and >20% became unable to communicate over 48 hours. 6 Both symptom relief and maintenance of communication capacity are generally considered important for a good death.…”

“…9,10 International experts recently suggested that, toward the individualized care for terminal dyspnea patients, it is vital not only to determine the individualized goal regarding the dyspnea intensity alone, 11,12 but also to identify individualized goals of care (GOC) to achieve an acceptable balance, or ''trade-off,'' between dyspnea relief and maintenance of communication capacity. 7,13 Such preferences may be affected by dyspnea intensity as well as individuals' perceptions about a good death. 9,10 Currently, however, no established scale is available to measure such bi-dimensional outcomes.…”