The ‘lived experience’ of palliative care patients in one acute hospital setting – a qualitative study

‘Person centred’ approaches to care delivery have been promoted as a core part of service design within the National Health Service (NHS) [1]. Crucially, person centred care promotes a care environment that is respectful, compassionate and responsive to the needs of individuals [2]. This is not a novel idea as the person centred ethos can be seen echoed in the core principles and values of the NHS; “[the NHS] touches our lives at times of most basic human need, when care and compassion are what matter most” [3]. Whilst this may be an attractive concept to underpin health care delivery policy, the term has been criticised for being applied without clarity of definition, causing subsequent discourse around the subject to be ‘woolly’, particularly with regard to informing actual care delivery [4].

A recent high profile review of care delivery in hospitals has shown that a lack of openness and compassion led, at times, to care that was “totally unacceptable and a fundamental breach of the values of the NHS” [5]. Furthermore, the Neuberger review highlighted a lack of ‘patient centred’ care and openness around decision making as barriers to good care [6]. A failure to engage meaningfully with patients may result in an approach to care delivery that ‘does to’ rather than ‘works with’ patients; privileging the perspective of healthcare professionals and clinically focused outcomes [7]. Indeed, a lack of compassion from health care providers has been cited as a major reason for dissatisfaction with the care that patients receive [8].

Failing to engage with and understand the views of patients and those close to them, has fundamental consequences for future health care delivery. Both government policy/guidance and the research literature continues to emphasise the importance of exploring the ‘patient experience’ in order to support service providers to provide care that is responsive and adaptive to individual patient need – ie person centred [2, 9–12]. By actively seeking the views of patients and families, the potential to ensure that these views are placed at the centre of service provision is enhanced. This perspective sits in accordance with the overarching values of the NHS Constitution [3] as well as National Guidance for End of Life Care [10, 12, 13]; therefore engaging service users should form part of ongoing service improvement strategies.

Predominantly however, assessing the ‘user experience’ has centred on measuring ‘satisfaction’, with a focus on comparison and monitoring. Some commentators suggest that current widely used approaches for measuring ‘satisfaction’ may not be sufficiently grounded in the values or experiences of patients, thus raising serious questions about the validity of the concept as a way of eliciting what is important to patients and the care they receive [14, 15]. In recent years assessment of the performance of healthcare organisations has begun to move beyond examining clinical care alone, to considering and embracing ‘patient experience’ as an important indicator of quality [9].

So how can we best uncover the views of patients who receive care in our NHS organisations, to better understand how well it meets their needs? Patient experience is complex and multifaceted, and requires more in depth methods to explore how patients and families experience the care they receive [9]. Taking time to actively engage patients to find out what is really important to them has the potential to unlock a richness of information not possible solely through ‘satisfaction’ questionnaires alone [16].

Much of the recent focus of both the media and the academic literature has been on the perceived deficits in care delivery for hospital in-patients nearing the end of life and their relatives and carers [6, 17]. We therefore chose to focus this study on a group of hospital in-patients who had life limiting illness and who were potentially nearing the end of life. In order to identify a suitable group of patients, we focused on inpatients who had received input during their stay from members of the Academic Hospital Specialist Palliative Care Team (AHSPCT) in one acute hospital trust in the North-West of England. The AHSPCT is an advisory service which takes referrals from across the hospital for patients with identified specialist palliative care needs. The role of the service is to assess patients’ holistic needs in order to optimise comfort, well-being and quality of life, in the presence of incurable, advancing illness. The AHSPCT is a multi-professional team, and includes doctors, specialist nurses and allied health professionals.

The aim of this study was to explore the ‘lived experience’ of a group of patients with palliative care needs who had recently been in-patients in one acute hospital trust in the north-west of England.

Exploring the lived experience required a phenomenological approach whereby participants were encouraged to recount their experience, allowing issues that held most personal importance to them unfold. This approach allows the researcher ‘enter the patients world’, promoting understanding of their experience from the patients’ perspective [18]. In-depth narrative interviews were undertaken using a conversational approach where patients were encouraged to direct and shape the discussion in accordance with their own experiences, views and particular concerns [19, 20], rather than responding to a pre-determined agenda.

This study has generated important information on the way in which patients’ experience care currently, providing an opportunity for the acute hospital to generate recommendations, to consider how results from this study may inform future service design, education, training and resource utilisations. The results of this study illustrate that overall the in-patient experience was viewed positively for most patients, with accounts illustrating compassionate and responsive care. Challenges were highlighted, however, with regard to over stretched staff and resources, along with individual differences in the attitudes of staff, which was reported to have negatively impacted the experience of care for some patients. Whilst this study was undertaken in one acute hospital, these findings are likely to be of interest to all providers of in-patient care, as many of the themes and issues highlighted here may also resonate with those care services.

Where care delivery was timely, responsive, well led and compassionate, however, this appeared to contribute to patients feeling safe and valued as individuals rather than being ‘processed’ as commodities; a view reinforced in the literature and recent policy documents [10, 24, 25]. In this study, acts of compassion were experienced through the ‘little things’ that staff could do for patients such as; making and taking the time to talk, to care and to display characteristics of humanity. Indeed, one of the main components of ‘good care’ has been highlighted as feeling that ‘you matter’ [26]. This perspective supports the view that the smallest details of the patient experience can be the most meaningful [27]. The NHS is under relentless pressure to improve efficiency and throughput; however it is an imperative that the patient remains at the forefront of any improvement strategy [2].

For patients’ in this study, modes of communication could have both positive and negative impacts on the patient experience. In particular, what information was given and how it was delivered appeared to impact on patients’ understanding of services involved, their condition and the overall plan of care. Evidence suggests “effective communication is the core of every helping relationship, and listening is the foundation of every medical and social service interaction” [28], p57. Accounts from this study reinforce that when HCP’s were able to ‘connect’ with patients beyond the ‘physical’ contact, this fostered a powerful sense of genuine human presence and care; effective communication, engagement and active listening, should be reflected within the culture of care in the organisation [29]. In recognition that ‘dignity enhancing’ or ‘dignity preserving’ care for palliative care patients is vitally important, the use of interventions such as the ‘dignity model’ has been highlighted as one way to ensure a person-centred approach in the acute hospital setting; promoting patient autonomy and recognition of the person as an individual [30].

For many patients in this study, pain appeared to be a major concern throughout their in-patient episode; a finding supported by previous studies [31–33]. Stories from this study reinforce the ‘threat’, highlighted by Pringle et al. [30], that untimely and unresponsive symptom assessment and control can be to patient dignity. For example patients described the seemingly all-encompassing nature of pain and the very real distress this caused when it was unremitting and unresolved. Specifically, some patients described ‘a significant period of waiting for assessment and administration’ of pain medication, impacting on their sense of dignity and wellbeing. Poignantly, patients described their relief when they felt that their pain was finally being attended to, underlining the significance of pain control to a patient’s sense of being cared for and valued as a human being. The role of the AHSPCT was specifically highlighted in this regard, where despite initial uncertainty and anxiety from some patients associated with their understanding of the role of the AHSPCT [31, 34, 35] as noted in previous studies [30, 31, 36, 37], their involvement resulted in improvements in pain control and holistic wellbeing.

Throughout this study, patients’ described the ‘struggle’ of living with a terminal illness, and the effect this had on their sense of self and life as they knew it before their diagnosis. This was a very important issue for patients, as their sense of ‘self’ had been ultimately changed, forcing them to renegotiate this in the face of uncertainty: “Death forces us to give an ultimate meaning to life and thereby transcend the apparent absurdity and meaninglessness of life in the face of death” [38].

Patients described feeling ‘different’ following their diagnosis, which echoes previous studies where the ‘stigma’ of cancer can have a negative impact on a patients sense of self, resulting in a ‘renegotiation’ of identity within the new context of their diagnosis [39]. It has also been suggested that over time the ‘label’ of a terminal illness can preclude ‘sustaining self-images’ resulting in ‘diminished self-concept’, as well as a fear of becoming a ‘burden’ to relatives as they readjust to the ‘real world’ [40]. This echoes with findings from this study, where for example despite the ‘hustle and bustle’ the hospital provided a ‘safe haven’ during this uncertain time [41], where patients could navigate and readjust within their ‘renegotiation’ of identity, self-worth, dignity and self-respect.

For some patients in this particular study, the distress prompted by this time of uncertainty extended beyond their inpatient admission. Some patients reported feeling ‘alone’ following discharge, indicating the potential for ongoing distress and need for additional support at this time. This resonates with the idea that ‘structures’ that underpin everyday life (such as social networks and relationships) can be ‘disrupted’ in light of serious chronic illness [42]. The ‘chaos narrative’ [43, 44] offers us another perspective that resonates with this study, for example the challenge of loss and adjustment faced by study participants when leaving the safe confines of hospital to return to the’ real world’. Reinforcing the importance that care services should not ‘end’ at the point of discharge, ensuring that patients can be sufficiently supported.

Johnson suggests ‘living with dignity’ is bound up in the individual’s sense of identity; through having one’s human value acknowledged, irrespective of circumstances, ‘personhood’ and ‘self-worth’ [45]. Johnson also highlights the risk to dignity at the end of life (EOL) as health deteriorates being particularly concerning [45]. Therefore, as health professionals, it is crucial that we consider how we respect these views in our conduct with others, ensuring that our interactions are dignity enriching [45], seeing the ‘person’ in the patient, rather than merely their illness. This perspective is also highlighted by Chochinov [46] and Johnson [47], who describe the Patient Dignity Question (PDQ) as a means by which HPCs may enhance person-centred care, for people with palliative care needs in an acute hospital.

Despite the acknowledged organisational pressures, these patient narratives highlight the importance of concepts such as kindness, compassion and dignity; taking the time to ‘care for patients’ rather than time to ‘do to patients’, taking the time to listen to what is most important and taking the time to respond to the patient as an individual. When the patients’ voice is heard and healthcare professionals ‘see the person behind the name’ rather than the illness, this provides opportunities for relationships to be built based on trust, confidence and mutual respect. This ultimately impacts on the patients’ experience of care, and their perception of self-worth and identity and sense of dignity [46, 47]. The palliative nature of illness reinforced the ‘preciousness’ of time, underlining there is ‘one chance to get it right’ [55]. Having listened to our patients it is time to learn and change; this study has provided an opportunity for the ‘patient voice’ to be heard and the individual patient experience to be explored. Further research should focus on exploring issues such as: why some patients within the same organisation have a positive experience of care, while others may not; how do staff attitudes and behaviours impact on the experience of care; transitions of care from hospital to home; the role of social networks.