Timely integration of palliative care into cancer care

In this issue, we have a Special Supplement focusing on palliative care. Despite many advances in oncology, the number of people living with incurable cancer is increasing, and cancer is still one of the leading causes of death in the world. In 2020, nearly 10 million people died due to cancer, which is nearly one in six deaths word wide (WHO, n.d.-a). Patients with incurable cancer need palliative care. Palliative care is defined by the WHO as an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual (WHO, n.d.-b).

A wide body of research has demonstrated the added value of early palliative care; a landmark study published in the New England Journal of Medicine demonstrated that early specialist palliative care leads to improved quality of life in patients with metastatic non-small-cell lung cancer (Temel et al., 2010). Moreover, these positive effects of palliative care on quality of life and symptom burden have been confirmed in many studies and meta-analyses (Bakitas et al., 2015; Davis et al., 2015; El-Jawahri et al., 2011; Fulton et al., 2019; Gaertner et al., 2017; Groenvold et al., 2017; Haun et al., 2017; Kavalieratos et al., 2016a; Maltoni et al., 2016; Temel et al., 2017; Vanbutsele et al., 2020; Zimmermann et al., 2014). In this issue, Huo et al. and Hoomani Majdabadi et al. both synthesised the most recent evidence of the effects of early palliative care on patients with incurable cancer and concluded that patients receiving early palliative care have better quality of life (Hoomani Majdabadi et al., 2022; Huo et al., 2022). Huo et al. also showed that palliative care resulted in reduced symptom burden, improved mood, improved survival and increased likelihood of dying at home (Huo et al., 2022). Early integration of palliative care not only has benefits for patients but also for family caregivers including less caregiver burden and higher quality of life (Dionne-Odom et al., 2015; el-Jawahri et al., 2017; Kavalieratos et al., 2016b; McDonald et al., 2017; O'Hara et al., 2010). Moreover, Zomerdijk et al. complemented these results by showing that palliative care can promote preparedness of caregivers of thoracic cancer patients (Zomerdijk et al., 2022).

This growing recognition of palliative care as an integral aspect of cancer care has led to several (inter)national guidelines to improve the integration of palliative care in oncology. However, bridging the gap between research, policy and practice seems challenging. It is known that still, many patients with incurable cancer do not receive timely palliative care. Mojtahedi et al. showed that only 10% of all hospitalised patients with gallbladder cancer (a rare poor-prognosis cancer) in the United States is referred to palliative care. Fortunately, the use of palliative care in this group has slightly increased over the past 10 years (Mojtahedi et al., 2021). Also in Sweden, as shown by Adolfsson et al., physicians from various hospital departments stated that they still introduce palliative care rather late in the cancer trajectory, despite positive attitudes towards the benefits of integration of palliative care into oncology (Adolfsson et al., 2022). And good to realise that non-cancer patients experience worse hospital care in the dying phase compared with patients with cancer, regarding symptom management, emotional support and quality of communication with healthcare professionals, as shown by Kasdorf et al. (2022).

Clearly, the integration of palliative care into cancer care is challenging and remains suboptimal. Known barriers to timely integration of palliative care into cancer care include a lack of time and focus on the physical domain and cancer-directed treatments. Misconceptions about palliative care as end of life care and the stigmatisation of death and dying can also hinder the timely integration of palliative care. How can we overcome these barriers?

Early identification of patients in needs of palliative care is important, and the routinely use of assessments tools can help. One tool for identify patients with potential palliative care needs is the Surprise Question “Would I be surprised if this patient died in the next 12 months?” Stoppelenburg et al. showed that the Surprise Question predicts death in hospitalised patients with cancer reasonably well and can help to initiate palliative care earlier (Stoppelenburg et al., 2022). Another tool is the Clinical Frailty Scale (CFS), although still limited used in oncology, Welford et al. showed that in adult oncology inpatients, the CFS is associated with prognosis and care needs on discharge and may help predict prognosis in adult oncology inpatients (Welford et al., 2022).

Also, awareness of patients with incurable cancer and their relatives is an important issue. Lai et al. show in this issue in a study among 31 terminally ill cancer patients that their awareness of prognosis is associated with less anxiety. Moreover, caregivers' concordance with the patient's prognostic awareness was also associated with better outcomes (Lai et al., 2021).

An important component of caring for patients in need of palliative care is advance care planning. Advance care planning has been defined as the ability to enable individuals to define goals and preferences for future medical treatment and care, to discuss these goals and preferences with family and healthcare providers and to record and review these preferences if appropriate (Pedrini, 2022). Carrasco et al. have developed a care pathway for a hospital-based advance care planning service for cancer patients that supports implementation of advance care planning within oncology (Rietjens et al., 2017).

Integration of oncology and palliative care requires knowledge and expertise of two modes of care: the tumour-directed approach (the main focus is on treating the disease) and the patient-directed approach (the main focus is on the patient with the disease). The combination of these two modes will result in the best care for the patient and a balance between these two modes is essential, also addressed by Cruz et al. In this letter to the editor, he warns for the tendency to focus too much on avoiding any invasive treatment. Palliative care is not about withholding treatments, even invasive tumour-directed treatments (including surgery) can still be beneficial for patients with incurable cancer, although clearly this requires shared decision making in which the individual wishes and needs of the patient have been addressed (Carrasco et al., 2022).

Norman et al. also emphasised the importance of a patient-directed approach, with attention for all four domains of quality of life, as they showed that hepatocellular carcinoma profoundly affected patients' quality of life in physical, psychological, social and spiritual domains (Norman et al., 2022). Jespersen et al. showed that older adults with advanced cancer also suffer from multifaceted symptoms due to the cancer and its treatment (Jespersen et al., 2022). Furthermore, Verhoef et al. showed that symptoms are related to the information needs of patients, especially information about non-prioritised symptoms and broader palliative care domains (Verhoef et al., 2022). All these studies substantiate the concept of total pain, introduced by Dame Cicely Saunders in 1964.

Measurement tools can be useful to monitor symptoms because healthcare professionals who provide palliative care must recognise these symptoms early and respond to them effectively. Delirium is a common symptom in palliative care and can be predicted by the 10-item Risk Score List (RSL). Stoevelaar et al. showed that a simplified RSL (four items) can also predict delirium without compromising on predictive accuracy (Stoevelaar et al., 2022). Van der Padt-Prijsten et al. underline the importance of symptom assessment by showing that patients with cancer in the last stage of life were mainly hospitalised due to symptom distress that might be prevented by timely recognition and advance care planning (van der Padt-Pruijsten et al., 2022).

For successful integration of palliative care into cancer care, training and education are key. An et al. also recognised the importance of continuous education of healthcare professionals regarding palliative care. Based on a survey of 284 nurses, they conclude that nurses' competencies and problem-solving abilities in palliative care are associated with their palliative care practices (An et al., 2022). Moreover, also Temiz et al. conducted a survey study of 106 nurses working in hospitals in Turkey to assess their level of knowledge. They showed that nurses had a moderate level of knowledge regarding palliative care. Moreover, their knowledge of palliative care was associated with age, number of years working in the profession or at the palliative care unit (Temiz et al., 2022).

In addition to training and education of healthcare professionals to provide high-quality palliative care to patients with incurable cancer and their family caregivers, it also seems beneficial to equip patients and family caregivers themselves. In this issue, Noorlandt et al. interviewed 33 patients with advanced cancer about their self-management challenges and showed that many of the challenges occur outside the professional care setting, underscoring the importance of broadening the scope beyond the care setting (Noorlandt et al., 2022). One of these challenges may be work-related. Zegers et al. showed that there are several barriers related to work resumption and work retention of patients with advanced cancer (Zegers et al., 2022). Moreover, in a cross-sectional study among 254 relatives of patients with advanced cancer, Bakker et al. showed that especially partners, those who provided more informal care, showed higher levels of caregiver activation. Moreover, higher caregivers' activation was associated with lower caregiver burden, fewer depressive symptoms and better social well-being (Bakker et al., 2022).

In conclusion, the benefits of integrating palliative care into cancer care are fairly indisputable, but we still need more understanding of how, when, where and by whom palliative care should be provided to further advance the integration of palliative care into cancer care. Moreover, basic palliative care knowledge and behaviour is essential for any healthcare professional caring for patients with life-threatening illnesses such as incurable cancer.