Palliative care utilization in oncology and hemato-oncology: a systematic review of cognitive barriers and facilitators from the perspective of healthcare professionals, adult patients, and their families

Within this theme we included studies on knowledge of palliative care (e.g., knowledge of palliative care’s scope and benefits), education on palliative care, and experience in the palliative care field (e.g., palliative care training or practical experience). In most of these studies (e.g., [22, 39, 46]), HPs’ lack of knowledge of palliative care in general (e.g. how and when initiate palliative care, and lack of familiarity with the basic principles of palliative care, including pain management, among medical students), or lack of one or more areas pertaining to it, such as existential issues [23] represent a serious obstacle to palliative care utilization. Some studies also reported a lack of understanding of palliative care services [22, 25, 43, 54], their scope [29, 64], or their applicability [51, 64]. Others showed a lack of knowledge of locally available palliative care services among HPs [22, 62]. Often physicians (e.g., oncologists), nurses, and other HPs specifically reported a lack of education in palliative care [21, 22, 40, 45, 51, 64]. Other studies reported a lack of practical training [22, 27, 34, 64] or working experience [23, 34] in palliative care.

Potential facilitators to palliative care use were identified; some studies showed that the provision of education on palliative care, including education on the initiation phase, improved utilization [38, 39, 46, 52, 58, 64]. One study focused on family physicians and highlighted that the use of specific tools for palliative care needs assessment was useful to address those needs in a timely manner [23]. Finally, several of quantitative studies showed that previous experience, general knowledge of end-of-life care, palliative care education provision for HPs (e.g., workshops and practical training) [35, 51, 52, 58, 64] as well as clinical guidelines on palliative care delivery [51] led to greater utilization of palliative care services.

Eighteen studies reported poor communication between HPs, particularly between palliative care specialists and oncologists [30]. Reasons to explain this suboptimal communication included poor information exchange [22, 48, 72], lack of effective team communication (e.g., concerning communication of the prognosis between palliative care specialists and oncologists) [45, 64], as well as lack of clarity [63] and consensus [34, 48, 73] on palliative care initiation. Ineffective communication can be due to lack of opportunity of conversations between cancer care and palliative care providers [64]. A study showed that the relationships between cancer and palliative care providers solely focused on patient care not representing trusted relationships which facilitate collaboration [64].

Several potential facilitators, such as improving collaboration between oncologists and the palliative care team [30], involving other HPs (e.g., nurses) in the negotiation phase with patients and their family, and joining other HPs at multidisciplinary meetings [23], were reported to improve palliative care use. A study reported that palliative care team strategic visibility in patient floors and hospital-wide events, as well as unintentional visibility, such as being present around the hospital, would nurture casual relationships between palliative care team and nonpalliative providers and hinder palliative care consultations [64]. Additionally, this study highlighted that an active marketing of the utility of palliative care consultations and education about the expertise of palliative care team to nonpalliative providers, as well as providing scientific support for recommendations during consultations represent facilitators for the receipt new palliative care consultations [64].

Six qualitative studies reported that HPs in oncological and hemato-oncological settings had issues with managing the emotions involved in the discussions of diagnosis, prognosis and palliative care options with patients and families. In the selected studies, emotional discomfort with death and dying [32, 53], discomfort preceded by a feeling of failure and defeat (when palliative care discussion is brought up or when referring to palliative care) [34, 63], difficulty in managing the close emotional bond of patients or family members (sometimes resulting in personal identification with the patient) [26, 34, 52], and difficulty in addressing their reactions to prognosis disclosure (e.g. patient shock or anger) [26, 52] were reported to be experienced by HPs. From these studies a lack of available psychological support for HPs who experience an high emotional involvement emerged [34, 52]. Narrative-based training for HPs, in particular for nurses, may represent a facilitator to properly process emotions during discussions of diagnosis, prognosis and palliative care options, additionally, to help building therapeutic alliances with patients and colleagues, and to improve communication skills [26].

Thirty-four studies identified attitudes and beliefs towards palliative care, which may represent barriers or facilitators to palliative care utilization. Common beliefs were the association of palliative care or hospice with death [28, 51], the inappropriateness of palliative care for complex problems if physical symptoms were not present [38, 74], the only palliative care goal being symptom management [46, 74], incompatibility of palliative care and cancer therapy [57, 62], suitability of palliative care for certain types of cancer such as lung cancer (less suitable for others e.g., breast cancer) [42], and suitability for older patients [25, 53]. In addition, specific beliefs among hemato-oncologists included inappropriateness of palliative care for onco-hematologic patients (e.g., specific needs, such as transfusions, not being addressed) [44, 53], the development of palliative care services specifically for solid tumor cancer rather than for blood cancer [53] and talking about palliative care at an early stage not being appropriate due to the large amount of other issues to address [47]. Additionally, some studies found that hemato-oncologists perceived palliative care as end-of-life care, preferred to maintain control also on palliative care, and had lack of trust in other professionals’ oncology knowledge [44]. Moreover, further studies showed that hemato-oncologists had lower comfort levels towards palliative care referral compared to oncologists [35] and were conducive to referral with the service name supportive care instead of palliative care [36]. In these studies the difficulty of accepting death and avoiding discussing death was reported [25, 29, 34]. A recent study showed how HPs felt compelled to fully exhaust disease-directed treatment options prior to referring patients to palliative care providers [54]. HPs’ beliefs in the selected studies also included earlier palliative care introduction in the disease trajectory representing a source of confusion over roles [75], increasing care fragmentation [75], and threat to palliative care patient autonomy [45, 58]. Overall, attitudes of HPs included beliefs about losing patient care management [25, 44, 52], unconsciously avoiding admitting failure [25, 63, 64], personal crusades for the disease [76], cure-focused attitudes and over-emphasis on the treatment [34, 44, 45, 54], palliative care incompatibility with the hospital life-saving culture, including beliefs that hospital reputation can be damaged [58], and considering palliative care referring as the last resort [64]. Other studies found that oncologists were reluctant to refer to the palliative care team [28, 37], due to a negative view of the palliative care team involvement [27, 30, 44, 45, 77] or past negative experiences [44, 77]. A qualitative study highlighted that nonpallitive providers were reluctant to refer to palliative care team for consultations because they felt capable of providing palliative care, without the involvement of the palliative care team, or because they were hesitant about specific medications for pain/symptom management prescribed by the palliative care team [64]. Other reasons for the lack of palliative care referral included beliefs that patients or their family might have inappropriate reactions to the referral [54, 77], that discussions or referral upset patients and families [34, 54, 75], or simply because of a lack of interest in palliative care [38, 56]. Attitudes which might represent facilitators to palliative care use, in particular palliative care provision and palliative care needs identification, were the hospital team paying attention to ethical differences and acting according to patient values [21, 23].

A large number of the selected studies’ samples included doctors (20/52 [38.5%], including oncologists, hemato-oncologists, GPs, and residents), followed by HPs (17/52 [32.7%] that included various health professions including nurses), and patients and families (15/52 [28.8%], including studies that also included HPs). Some studies reported difficulties in negotiating the transition to palliative care [29] which was chaotic and frequently occurred a short time prior to death [72], due to lack of open communication between HPs and patients and families [31, 55, 72, 74], as well as lack of information on patient prognosis [22, 72] or available support and services [61, 72, 74]. A study found that long-term relationships between hemato-oncologists and patients result in considerable difficulty conducting end-of-life discussions [53]. Three recent studies showed that further barriers to palliative care use included receiving conflicting information on goals of care by HPs [26, 61, 72], lack of shared perspectives on patient conditions by HPs [72], no discussions on end of life between patients and family and oncologists [54, 72], no preparation of the patient and family to the imminent deterioration of the patient conditions [72]. Several aspects related to the lack of open communication were reported in these studies, such as absence of training in communication skills [23, 34], problems with communication of a bad prognosis [45, 54, 78], lack of communication skills [22, 61] and difficulty discussing spiritual, psychosocial, and emotional issues [52]. Lack of effective communication and collaboration between HPs and patients and families [31, 39, 55] and not using communication tools [23] were further obstacles to palliative care utilization. From some studies it emerged that collaboration and communication could be influenced by the unwillingness of the patient’s family to openly communicate with the patient about diagnosis and prognosis (thus influencing the communication between the HPs and the patient) [55] as well as language or cultural barriers [34] or family emotional reactions [34], and difficulty in dealing with these for HPs [26]. Finally, a patient with impaired communication ability might represent a barrier to early identification of palliative care needs [23].

On the contrary, early identification of palliative care needs could be facilitated by effective communication [43], a gentle exploration of the topic, and the use of communication notebooks and medical files with non-physical information by the GP [23], as well as ‘reinforcing’ the relationship with the patient (e.g., making regular contacts with him/her or creating trust in the patient) [23, 64]. Additionally, designing proactive approaches for non-face-to-face communication with patients and family [54], interacting and collaborating with home care professionals by patients and family (home palliative care services) [50] and conducting regular follow-ups, with direct contact with patients, by the palliative care team [64].

Moreover, providing information on the medical condition and palliative care options to the patients or family [51, 65], the family involvement in care trajectories and decision-making [65, 76], medical language translated into more simple language for patients and families [76], and HPs receiving training on communication skills [23, 26], were reported as aspects that improved palliative care utilization (provision or increased palliative care referrals). Additionally, training in communication skills could improve transition to specialized palliative care [41]. Finally, some studies showed that proposing palliative care with a new name (‘supportive care’) might increase palliative care services referral [37, 57].

Eleven studies which showed lack of palliative care knowledge in the patient population and in families were identified. In particular, low awareness about palliative care [38, 42, 51], and lack of knowledge of palliative care and local services [33, 46, 61, 64] were recurrent barriers. Other studies reported uncertainty about palliative care scope [30], difficulty in defining palliative care [48], and lack of patient education [40] or lack of guidelines for patient education [22] as obstacles to palliative care use. Recent studies reported lack of information on hospital and home palliative care services by HPs [61] and difficulty in navigating the home palliative care system among patients [50] as barriers to palliative care use.

A greater level of education in patients, including increased knowledge of palliative care benefits [38, 47, 64] and demonstration of palliative care utility via exposure [64], provision of clear information on end of life [50], with the integration of a lay health coach into oncology teams [54] has been found to be associated with greater palliative care use.

Some qualitative studies have shown that emotions involved (e.g., sadness and suppression) and psychological reactions (e.g., unrealistic optimism and unrealistic expectations especially among hemato-oncology patients [53]) in the disease path experienced by the patients and families might make early identification of palliative care needs difficult [23] as well as palliative care referrals [34]. Recent studies highlighted that feelings of frustration and anger due to unpreparedness of the family to patient transition to palliative care [72], fear of palliative care [59], and resistance or denial to accept the actual medical condition and/or palliative care options [25, 64] represent barriers. In particular, one case study highlighted how assessing the psychological condition, in particular patients’ emotions, contributed to improved palliative care utilization [65].

This theme emerged in eighteen studies. The most recurrent themes were family or patient reluctance [34, 63], willingness to continue the active treatment [72], a negative view of palliative care [33, 34, 75], misconceptions about palliative care [39, 51], palliative care being viewed as terminal care [20, 49, 59], and beliefs about losing hope [24, 34, 77] or differing perspectives about hope (overoptimism versus hopelessness) when discontinuation of active treatment was communicated [60]. A qualitative study reported that patients wished to receive care from family physicians or nurses rather than from unknown HPs in a palliative care unit [33]. Additional beliefs reported by the selected studies were the perception of palliative care as a lesser care alternative and cost-saving option [58], and palliative care options which must not be brought up at the diagnosis or prognosis discussions [47, 79]. Patient or family attitudes that were reported included infinite trust and faith in medicine [34], as well as family forbidding discussion of palliative care during conversations about diagnosis or prognosis [55]. On the contrary, one study found that patients’ openness to their own needs was reported as a facilitator to early identification of palliative care needs [23].