Discussions and limitations
Although this study involved many respondents widely distributed throughout the UK, as in all surveys, a degree of sampling bias is to be expected. First, most respondents were based in a hospital or hospice setting. Therefore, while it is fairly common for PC professionals in the UK to work in hospice and community, our findings do not adequately reflect the unique issues associated with community PC provision. Second, a limitation associated with our method of distribution is the fact that the survey responder rate (which is a conventional marker of sampling bias) could not be calculated. Nonetheless, we have estimated a consultant survey responder rate of 42% from the 2012 Royal College of Physicians workforce census16 (210 consultant responses vs 502 known PC consultants in the UK).
It is worth noting that this exploratory study was mainly designed to identify reasons for the perceived underutilisation of PC services and to detect any problems currently associated with present practice. Conducting an accurate UK-wide census of PC services for HF was not our study's objective. Hence, while our results may indicate availability of PC services, it should neither be interpreted as a definitive assessment of provision in HF nor as a proportional representation of the views of PC professionals. Furthermore, the strength of signal in the qualitative analyses was not determined given the exploratory design of this survey. The deliberate decision to principally target PC professionals in this exploratory survey is based on the recognition that they are more likely to recognise unaddressed PC needs in the HF population. Thus, our findings offer a PC's perspective into the current challenges facing PC in HF. It will be interesting and valuable for future studies to further investigate the issues outlined in this study by evaluating the alternate perspectives of HF professionals, GPs (who are another source of community HF referrals to PC services in the UK17) and patients.
This survey reveals that although a range of PC services for HF is offered throughout the UK, HF referral numbers (and consequently burden on PC services) remain low. In addition, two observations were noted: an impression that cardiologists were under-referring and reluctant to engage with PC. The frequency of these observations is undetermined. Low HF burden or referral numbers and infrequent PC referrals made by cardiologists have been similarly documented in Ireland,18 England12 and America,14 respectively. Admittedly, not all patients with HF require specialist PC input and the level of PC need (hence requirement for formal referral) fluctuates with time. Moreover, reports of specialist PC providing a ‘supportive’ and advisory role also means some of the burden is shared between HF and PC teams. Despite that, the low referral numbers do appear to be at odds with high HF prevalence. Recurrent observations by PC professionals of reluctance or unfamiliarity within cardiology to engage with and address PC issues with patients (including opening EOL and ICD deactivation discussions) corresponds with the published literature.19 ,20 It is likely that these factors contribute to the perception of PC underutilisation in HF.
As terminal diseases often tend to have similar PC needs at EOL, it is unsurprising that the use of generic referral criteria and treatment guidelines is common practice. However, the significance of the infrequent use of HF-specific criteria and guidelines is unclear. In addition, 42% of respondents did not cite “consideration of advanced HF management” as “most appropriate time for referral” despite it being indicative of increasing symptom burden and PC need.6 Further investigation is needed to ascertain if these observations indicate insufficient effort by PC services to cater for disease-specific needs, unfamiliarity with disease trajectory or an alternative explanation. Indeed, the overall impression from this survey is that further improvement in PC support for patients with HF is needed in the UK. Nevertheless, the key question is whether PC needs in HF are currently inadequately addressed nationally. If so, this could be due to under-recognition of HF needs by both specialties.
Despite broad acknowledgement of the value of PC in end-stage or severe HF, there was divergence in views on the level and timing of PC input. PC needs are often predicated on whether a patient is nearing EOL. Tools such as the Gold Standards Framework (GSF) Prognostic Indicator guidance21 and the Supportive and Palliative Care Indicator Tools (SPICT),22 have been developed through research and collaboration to help identify patients approaching EOL in order to meet clinical need. Indeed, the referral criteria cited by respondents are supported by the GSF and SPICT tools. However, the clinical trajectory in HF is inherently unpredictable.23 Given that predicting PC needs with clinical indicators is fraught with difficulties, professional uncertainty regarding the optimal time20 to initiate PC needs assessment and discussion is unsurprising. This has contributed to the growing opinion that a better option may be to introduce PC at an earlier stage to run in tandem with conventional HF treatment such that PC provision may be more responsive to the individuals’ fluctuating needs throughout the disease journey.24
There were markedly different views among PC professionals on the optimal model of care to cope with ever increasing HF demand. It is certainly encouraging to see different interdisciplinary working arrangements evolving to suit the skills and enthusiasm of local teams and resource availability in order to meet local demand. However, more research into optimum models of PC delivery is warranted.
The relatively low level of interdisciplinary collaboration reported by PC professionals is consistent with a 2004 survey12 conducted (in England) by Gibbs et al (58% in present study vs 59% in 2004). Furthermore, the disparity in reported levels of collaboration by consultants versus non-consultant staff may indicate less involvement of non-consultant staff in interdisciplinary cooperation and merits further exploration. Despite that, services that made concerted interdisciplinary efforts to deal with all PC issues reported improved outcomes. This is in agreement with published evidence.5 ,9 There is certainly a need25 and desire among PC professionals (reflected in comments) to develop interdisciplinary education and improve mutual skills.
When managed poorly, ICD deactivation can cause significant distress to the patient and family.26 Disappointingly, the 24% who experienced ICD difficulties were distributed in nearly all regions of the UK. Moreover, this figure is probably an underestimate as low referral rates could be masking the true extent of the problem. It is worth noting that many of the listed factors contributing to ICD difficulties are related to poor service organisation. This problem is not unique to the UK, as suboptimal provision of ICD deactivation service in US hospices was also documented in 2010.27 In addition, observations of patient reluctance with deactivation and to engage with PC emphasises the importance of early initiation of frank PC discussions.
We have presented a UK-wide overview of significant challenges currently facing PC and HF from a PC perspective. This is also the first study, to our knowledge, to document the difficulties surrounding ICD deactivation throughout the UK. It is disappointing to find that difficulties still persist in PC provision for HF in 2014. We hope that our findings will reinvigorate the debate on PC in HF among cardiologists, particularly on the following issues: reassessment of contemporary PC needs as new HF therapies emerge, optimal timing for initiating PC discussions or needs assessment and ideal interdisciplinary working arrangements to deliver efficient care. The fact remains that cardiologists are often the gatekeepers to PC services for the patient with HF. Therefore, improvement of PC provision in HF must first start with raising awareness of its benefits among cardiologists and encouraging interdisciplinary dialogue.