Health professionals’ perceptions of palliative care for end-stage cardiac and respiratory conditions: a qualitative interview study

Background End-stage cardiac and respiratory diseases are common in the UK. People with these end-stage conditions experience similar, or even worse, symptomatic suffering to cancer patients but are less likely to receive specialist palliative care services. The objective of this study is to explore health professional perceptions and current practices in relation to specialist palliative care for patients with end-stage cardiac and respiratory disease. Methods Qualitative study using in-depth interviews with health professionals, audio recorded and transcribed verbatim for thematic analysis. The study was conducted with doctors and nurses from cardiology, respiratory, and palliative care specialities in the UK. The participants had to be involved clinically in providing care to people with end-stage cardiac or respiratory diseases. Results A total of 16 health professionals participated (5 cardiology, 5 respiratory, and 6 palliative care). Participants reported variable disease trajectories in these diseases making deciding on timing of palliative care involvement difficult. This was complicated by lack of advance care planning discussions, attributed to poor communication, and lack of health professional time and confidence. Participants reported poor interdepartmental education and limited specialist palliative care involvement in multidisciplinary teams. Conclusions Palliative care for end-stage cardiac and respiratory diseases needs more attention in research and practice. Better integration of advance care planning discussions and early patient education/professional awareness are needed to enable timely referral to palliative care. Moreover, increased interdepartmental working for health professionals via joint educational and clinical meetings is perceived as likely to support earlier and increased referral to specialist palliative care services.

UK prevalence rates, in 2017-18, for chronic obstructive pulmonary disease (COPD) have been reported as affecting around 3 million people, with 2 million of these being undiagnosed [4]. It is estimated that the number of COPD cases globally in 2010 was 384 million, with a prevalence of 11.7%. These estimates are expected to rise significantly over the next 30 years [5]. Comparing mortality, cancer accounted for 28.1% of deaths in the UK in 2017, circulatory diseases account for 25%, and respiratory diseases for 13.8% [6]. Cardiovascular diseases are the number one cause of death worldwide, with over 17 million annual deaths [7]. This represents 31% of all global deaths [7]. With improving medications and interventions for management of cardiovascular diseases, CHF is a major and growing public health problem [4]. Worldwide in 2015, approximately 3.2 million deaths were due to COPD, making COPD the fourth leading cause of death [5]. It is estimated that globally by 2030 there may be over 4.5 million deaths annually from COPD and related conditions [5]. Patients with CHF and end-stage respiratory diseases experience significant symptomatic suffering and psychosocial burden, comparable to or worse than patients with advanced cancer [8][9][10]. Specialist palliative care may be as beneficial in these diseases as it is for cancer patients, with strong evidence supporting the benefits [8,9,11]. However, these non-cancer diseases are often referred to specialist palliative care later in the illness trajectory, or not at all [12,13]. Suggested reasons include difficulty prognosticating, as well as limited knowledge and inaccurate perceptions of palliative care by health care professionals (HCPs) and patients [14,15].
In recent years, the importance of palliative care in these diseases has been recognised and incorporated into UK guidelines. Current National Institute for Health and Care Excellence (NICE) UK guidance states that patients with CHF, COPD and other advanced lung diseases should have access to the full range of services offered by multidisciplinary palliative care teams. This includes admission to hospices, offered in a timely way, and appropriate to the patient's needs and preferences [16][17][18]. Moreover, palliation for breathlessness and other symptoms, as well as advance care planning (ACP). Finally, addressing psychological, social, spiritual and family and carer needs are all recommended [16]. The NICE guidance also states that care should be consistent and effectively coordinated across all relevant settings and services [16]. This is intended to improve quality of life, reduce hospital admissions, and ensure a well-supported dying process.
This study therefore aims to explore health professional perceptions and current practices in relation to specialist palliative care for patients with end-stage cardiac and respiratory disease.

Study design
Qualitative study using in-depth interviews with health professionals to explore their perceptions of and current practices in referral to specialist palliative care for patients with end-stage cardiac and respiratory diseases.

Sampling
Participants were purposively sampled by speciality (respiratory medicine, cardiology, and palliative medicine) and discipline (doctors and nurses). We use the term purposive sampling to mean selecting participants based on their knowledge and experience relevant to our study [19]. These were participants we felt could give us an indepth understanding and insight into our research topics [19]. Purposive sampling of 2-4 doctors and 2-4 nurses from each of the three specialist areas was sought, with (overall) 6 to 8 from each discipline (doctors or nurses). A total sample of 12-16 participants was sought aiming for data saturation (no new themes), based on prior experience of similar work.

Inclusion criteria
The inclusion criteria were doctors or nurses who work clinically in providing care to people with end-stage cardiac or respiratory diseases. Those with no direct involvement in clinical care of those with end-stage cardiac or respiratory diseases were excluded.

Recruitment
Participants were accessed and invited via email through the existing networks of the Wolfson Palliative Care Research Centre at Hull York Medical School. Health professionals were given information about the study at time of invitation, and gave informed written consent before interview.

Study development
An interview topic guide (Table 1) was developed based on the study objectives developed from a previously conducted literature review. This unpublished literature review was conducted by HF to gain greater insight into emerging themes and areas for research within the existing evidence. The topic guide was developed iteratively by the co-authors, and refined after comments from cardiology, respiratory medicine and palliative care colleagues. This set out to explore current practices and also perspectives on facilitators and barriers of referral to specialist palliative care.

Data collection
All interviews were conducted between September and December 2019 by HF in person at the participant's referred location (all in their place of work). The interviews were audio recorded and transcribed verbatim for analysis. The interviews were anonymised at the time of transcribing.

Analysis
Interviews were thematically analysed [20,21] by using the qualitative data analysis software NVivo 12 (B. Edhlund and A. McDougall). The process of thematic analysis started with HF transcribing the interviews and thoroughly reading through the data. Following this HF generated initial codes from the transcripts, identifying the themes from each interview. A coding tree was developed, iterated and refined from the data, and then applied, and further refined with the subsequent interviews [20,21]. This was supported and reviewed with FM, to ensure codes were applied appropriately and consistently. The storage of the interview recordings and transcripts followed the data policy and guidance from the University of Hull.

Ethics
Ethics approval was obtained from Hull York Medical School Research Ethics committee, Reference number: 19 25, Date of approval: 9 August 2019.

Results
A total of 16 participants were interviewed; 10 female, 6 male. Their experience as health professionals ranging from one year to over 30 years. There were 5 cardiology, 5 respiratory, and 6 palliative care professionals (6 nurses and 8 doctors). Participants included 3 cardiology consultants, 1 cardiology speciality trainee, 1 specialist heart failure nurse, 3 respiratory consultants, 2 specialist respiratory nurses, 4 specialist palliative care nurses, and 2 palliative care consultants.

Specialist palliative care involvement
Participants reported it was often difficult to decide when to involve specialist palliative care in end-stage cardiac and respiratory disease. Suggested reasons for this included the variable disease progression making prognostication very difficult, particularly in COPD and CHF, as discussed below.
"The non-cancer trajectory is far less predictable. There are dips along the way and you do not know when the last one is going to be. " Participant  Attitudes were expressed from a cardiology perspective that once a patient is perceived to be end of life, they become the least important. The focus on evolving treatment options and interventions has become even more pronounced. This has led to poor management of the dying process.

Advance care planning
Participants almost all identified advance care planning (ACP) as vital for early or appropriate timing of specialist palliative care involvement. However, there were discrepancies in participants' opinions of whose role this was and at what point it should happen, so that participants felt ACP did not happen effectively for many patients. Conflicting views on whose role it is to provide ACP, alongside the presumption these discussions were already being had by someone else, were highlighted as barriers to earlier ACP discussions). Participants reported on the impact of socioeconomic status on public perception of the disease. COPD being more prevalent in lower socioeconomic classes was thought to lead to people not appreciating the extent of the disease burden. This was also thought to affect chari- This line was thought to be further blurred by the role of specialist cardiology and respiratory nurses. Participants stated that specialist nurses are hugely important in the communication between a specialism and specialist palliative care and are often the ones to refer to palliative care. Some participants believed since the specialist nurses' job was palliative in nature, they were taking care of the patients' palliative care needs, making the referrals and were well integrated with the specialist palliative care team.

"I kind of presume that [advance care planning] is already happening but as I say for a lot of patients I have seen that makes me suspect that we aren't hav-
"So I don't recall ever having referred to palliative care over a heart failure patient but perhaps we should be more often and I think because we have the heart failure specialist nurses and specialist heart failure team I sort of feel like they are already getting that specialist input in terms of the medical treatment and that specialist nurse input for a bit more support so I use it less in that sense, but I'm not sure that we always recognise early enough or I don't know, I don't know how good the heart failure nurses are at providing that information of look you are coming to the end stage of our life and exploring their emotional needs and wishes and stuff. " Participant 5, Cardiology doctor "I say I've kind of made the assumption, maybe I should have checked myself, that all of the issues surrounding heart failure and the palliative nature of it will be addressed by those specialist nurses. " Participant 6, Cardiology doctor However, specialist nurses themselves when questioned in this topic talked about the huge strain on their resources due to the large number of patients in their care. They stated they do not have the time and resources to take on the role of ACP, psychological support or specialist palliative care. Moreover, some participants reported that specialist nurses are not integrated well with the specialist palliative team. Secondly, that there should be earlier integration of ACP with a way to ensure it is happening effectively for all patients. Some participants suggested introducing a set criteria or indicator tool to encourage advance care planning, and some participants said this was already starting to happen in their department. Finally, there should be better education for HCP's to recognise the signs as to when ACP should be addressed, described by participant 2.

Discussion
This study documents professionals' perceptions of specialist palliative care for patients with end-stage cardiac and respiratory diseases. Participants wanted palliative care involvement and described many of its benefits, but recognised it was often left too late in the disease trajectory for patients to fully benefit.
Participants reported cultures and attitudes which hinder specialist palliative care referrals. One aspect discussed by participants was the increasing focus, especially within cardiology, on prolonging life, with a wide range of complex treatment options. This made a palliative approach more difficult, and often delayed a timely transition to palliative care [22]. Other evidence supports this finding, with palliative care being seen as a defeat or failure for some cardiology professionals [22,23]. Some professionals in our study thought there was no need for palliative care for CHF patients as too few patients would benefit; which is supported by the work of Ziehm et al. [23]. There is also the belief amongst professionals, both in our study and other research, that palliative care is synonymous with last days of life, contradictory to current guidance that palliative care should be utilised based on patient's needs over the last year of life (or longer) [16,17]. Other recent evidence shows that lack of awareness of palliative care services prevent discussions about involvement of palliative care and referrals [23,24]. This is made more challenging due to the difficulty prognosticating about patients with CHF and COPD, and that timing of ACP and palliative care discussions can be difficult if patients might live with that condition for many years [23,24]. An important consideration when investigating ACP and palliative care discussions is the patient's perspective of their own disease. Lack of knowledge and poor patient education of both the disease process and role of palliative care can influence how patients respond to such discussions. The participants, supported by other evidence, report that this makes patients less likely to initiate or engage in discussions about prognosis and palliative care and are less willing to accept their mortality [15]. Another consideration is a patient's acceptance (or denial) of having a chronic illness as a barrier to having these conversations.
Lack of clarity as to whose role it is to refer to palliative care emerged as a major issue. There was sometimes an assumption that specialist nurses would undertake ACP. However, our findings demonstrate this may not always be feasible within their busy roles. There also needs to be explicit discussion between teams about what is undertaken by specialist nurses within cardiology and respiratory services, what is undertaken by doctors within those teams, and what falls to primary care, and to specialist palliative care. Previous evidence shows that good interdepartmental communications are needed to ensure patients are reviewed regularly and these discussions are happening [25]. A number of authors have reported the significant need for ACP and good communication in people with CHF and COPD, but reports show unmet palliative care needs and infrequent ACP discussions [26,27]. Another explanation identified for this, both by our study and other evidence, is lack of professionals' confidence and communication skills needed to initiate these discussions [25]. This is further complicated by public misconceptions about palliative care [15]. Moreover, patients are often unable to think about and express their preferences early enough [15].
Participants in this study also identified loss of continuity with a health professional, due to pressure on time and resources, as a barrier to ACP discussions. Patients are more likely to have difficult and challenging ACP discussions with a professional they know and trust [28]. Some participants believed specialist heart failure and respiratory nurses are best suited to this role. This concords with evidence that nursing staff tend to initiate palliative care earlier than the physicians [23]. The difficulties of advocating any one specific group of professionals to undertake these roles is recognised, and research suggests this needs to be well managed through effective communication and team working of the healthcare team alongside patient preferences [29].
The current NICE guidance advises timely involvement of palliative care coordinated effectively across all relevant settings and services [17,18]. However, the participants reported this is not happening effectively and there is a need for better interdepartmental communications and MDTs to discuss needs of patients and ensure ACP is occurring. Interdepartmental education and training to inform professionals of what local services are available, what specialist palliative care can offer patients and when this is appropriate is needed [25].
Research recommends all professionals involved in the care of patients with CHF and COPD should have good generic palliative and communication skills [29]. Also, "complex or persistent problems (e.g. intractable pain, difficult breathlessness)" should trigger referral to specialist palliative care services and this is not only for the dying patient [29]. Some participants recognised that there has been a small cultural shift towards earlier involvement of ACP and palliative care in these conditions, but this change in culture needs to be continued [25].

Limitations
This was a small sample of 16 HCPs, with only doctors and nurses being included, excluding other HCP roles. We acknowledge that social workers, allied and other health professionals will provide useful additional insights; their perspectives could be the focus of future research. However, our focus on the perspectives of doctors and nurses did allow for the consistency of specific themes to be explored, and no new themes emerged from the later interviews. We also acknowledge that there were few participants from community settings and no involvement of general practice; however, the focus here was specifically on specialist palliative care referral, rather than generalist end of life care (where primary care teams often play the major role). Participants were also recruited through the Research Centre networks, which may have led to a sample of those more engaged with research, and with implementation of research into practice. We consider however, that this does not undermine our findings, which emerged reasonably consistently across specialities and disciplines. The sample was however concentrated in just one region of the UK; practices may differ across other regions.

Conclusion
Better integration of ACP discussions earlier in the disease trajectory is needed to enable timely referral to palliative care. Barriers to this included uncertainty of whose role ACP (and referral) was, when it is appropriate to discuss, and professionals' confidence and communication skills. The need for better interdepartmental working relationships between cardiology/ respiratory and palliative care via joint education and clinical meetings is highlighted. A cultural shift needs to be made regarding public awareness of end-stage cardiac and respiratory diseases and the value of palliative care.
Abbreviations COPD: Chronic obstructive pulmonary disease; CHF: Chronic heart failure; ACP: Advance care planning; HCP: Health care professional; LV dysfunction: Left ventricular dysfunction.