Towards integration of palliative care in patients with chronic heart failure and chronic obstructive pulmonary disease: a systematic literature review of European guidelines and pathways

The majority of the included studies originated from the UK (11 guidelines and one pathway). This is probably due to the fact that PC originated from the UK [44]. The results revealed considerable discrepancies in the integration of PC guidelines, not only in the level of implementation, but in the level of what is conceptually deemed important as well. However, despite such disparities, almost all guidelines/pathways emphasise that the priority of integrated PC should be the reduction of suffering, by effective symptom control. This convergence of opinion is noteworthy for two reasons. First, it accords with what organizations such as the WHO [45], the European Society of Cardiology [46], the European Respiratory Society [47] and others identify as the primary objectives of PC. Second, it conforms to perceptions of both physicians and patients [48, 49].

The determination of the referral criteria in the application of PC to patients with advanced CHF or COPD has been a subject of debate [12, 50‐54]. This is mainly due to the fact that, as opposed to cancer, illness trajectories of CHF and COPD are quite variable including sequences of deteriorations and (partial) relapses [55]. In fact, even though prognosis of both advanced CHF and COPD is poor [55, 56], prognostication is inexact. Also, the predictive capacity of the various utilized tools is at best moderate and is further reduced by the frequent occurrence of sudden deaths, frequent relapses, comorbidity, and so on. Consequently, physicians are often reluctant to discuss PC options and, interestingly, when they do so, the reaction of patients involves negative surprise; this might also be attributed to the fact that public understanding of these diseases is not linked to dying, unlike for example cancer [57, 58].

In the present study, nearly half of the included guidelines/pathways did clarify referral criteria. However, even among those that provide a recommendation, no appreciable convergence of opinions was observed, as our analysis demonstrated widely diverse referral criteria. Moreover, the appropriateness of many of these referral criteria is questionable because they heavily rely on prognostication; in fact, even the three guidelines/pathways that opted for “last six months” did not based their recommendation on the surprise question but rather on prognostic models. Interestingly, at the same time, guidelines recognise the need for communication between clinicians and patients concerning the limitations of prognostication which appears to lead to a contradictory view. A possible way to resolve this issue was demonstrated by communicating to the patient the potential risks involved in future admissions so paving the way for an advance care planning discussion. Since only one guideline explicitly promoted the early inclusion of PC alongside standard treatment, it is evident that, despite recommendations of medical associations [47], the perception that PC should be primarily concerned with “end-of-life” still prevails [59].

Concerning decision making and advanced care planning, patients with advanced CHF or COPD are quite unlikely to get engaged in discussions concerning treatment options/preferences and end-of-life issues because i) patient-physician communication about end-of-life care might be less likely to occur, ii) it is more complicated to initiate this for patients with less certain prognosis [60‐62] and iii) as mentioned above, public understanding of these diseases is not directly linked to dying which can inflict negative reactions from patients [57, 58]. The scarcity of patient-physician discussions concerning treatment options/preferences and the frequent total absence of discussions on end-of-life issues result in less informed patients who are, nevertheless, willing to both familiarize themselves with aspects of their disease and express their preferences [63]; these adverse effects are more apparent nowadays because many patients search for relevant information on the web and can thus challenge or question medical decision making [64].

The majority of the included guidelines/pathways identified the need for enhanced communication for both treatment options/preferences and end-of-life issues and explicitly advocate for it. Nonetheless, the necessary further steps to achieve this, such as advance care planning and continuous goal adjustment are absent from a considerable amount of the included studies. Consequently, since patient-physician communication, advanced care planning and continuous goal adjustment are interlinked, ignoring the latter two might result in suboptimal PC. It is interesting to note that similar findings were reported in a very recent systematic review of integrated PC in guidelines and pathways in cancer, which implies that poor communication is evident independently of the disease trajectory [19].

The holistic approach to care including comprehensive assessment of physical, psychological, spiritual and social needs is backed by robust evidence [65‐69]. However, its practical implementation is quite challenging because it is based on the well-orchestrated coordination of and cooperation between different specialties while often requiring the assumption of additional, novel duties from the involved personnel. Current research has documented that these requirements are frequently unmet due to implemented i) the reluctance of physicians to advocate expansion of specialist PC services, ii) the obscurity of the roles of doctors and nurses in different specialties and iii) the limited funding and infrastructures [69, 70]. As a consequence, the same studies hint that the holistic approach is often poorly implemented in practice. In view of these facts, we can infer that a stand-alone recommendation for the employment of the holistic approach is inadequate. Rather, such recommendations should be supplemented with detailed instructions that exemplify and quantify the roles of the involved personnel, their interaction and timing of the assessments. The prominence of the holistic approach is acknowledged by the majority of the included guidelines/pathways [22, 25, 28]. Moreover, they provide specific recommendations for controlling physical symptoms, relieving psychological issues and addressing spiritual needs of the patients.

As regards the composition of the PC team, most of the guidelines/pathways advocate a multidisciplinary approach that involves professionals from different disciplines who are additionally trained in PC [71]. The advantages of the multidisciplinary approach over the uni-disciplinary one have been documented and advocated for multiple times in the literature both for CHF and COPD [17, 45, 72‐75]. It is also important to note that combining a holistic approach with a multidisciplinary PC team has been posited to increase the benefits of PC [76]. The advantages of this combination have been recognized by most guidelines and pathways in this study.

Finally, our analysis revealed a lack of emphasis on recommendations on the last hours of life and bereavement care. It is striking that most of the guidelines/pathways identify PC as an end-of-life concept. Both aspects have consistently been identified as significant components of a complete and optimized integrated PC [12, 77]. However, and despite being explicitly promoted [50, 78‐80], they are frequently overlooked as is the case with the present guidelines/pathways. Consequently, future guidelines and pathways should increase their focus on these aspects.