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 [31,32,33]. 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.
Strengths and limitations
This study provided a unique opportunity for one NHS organisation to explore what matters to patients with a life limiting illness, in the context on their in-patient stay. The approach that was taken, through listening to ‘patient stories’, reflects the traditions of hospice and palliative care, by giving time and space to listen and gain a greater understanding from the patients perspective [48].
However it has been recognised that involving patients with a palliative illness in research studies poses its own ethical and moral challenges. In this study for example due to the vulnerability of the patient population, some were unable to be involved as they deteriorated or died prior to or after discharge from hospital. Despite ethical and methodological debates regarding the ‘morality’ and ‘appropriateness’ of involving this cohort of patients in this type of research [49], it was evident throughout recruitment, that patients had a desire to take part. Indeed there is growing evidence to suggest that in fact, palliative care patients do have a desire to take part in research [50, 51]. This adds to growing literature, critiquing the potentially constraining ethical guidelines, prompting the question of whether it is ethical to prohibit patients the chance to contribute to research [52, 53].
Also of note was that the majority of interviews took place within the last two months of the patient’s life (17/20 had died by the end of the data collection period: October 2015 – September 2016). This is interesting given the reticence to involve patients in research as they are approaching the end of life, due to the assumption that it is an unwelcome burden for them at this time [46]. The inclusion criteria of this study however excluded patients that remained in hospital. It could be argued that this approach limited participation, possibly denying the opportunity for other palliative care patients to share their experiences and potentially silencing their voices. In addition, the sample was homogenous in terms of ethnicity and all had cancer, therefore future studies may seek to explore the views of a wider patient population, including patients that do not have a life-limiting illness. Interestingly, the referral criteria for the AHSPT are not limited to patients with a cancer diagnosis, yet these patients made up the total sample population for this study.
The issue of ‘gatekeeping’ was also important to consider, as for ten patients in this study family members specifically requested that the patient not be approached. Reasons for this included perceptions that the patient was too unwell, too tired, or it was ‘not the right time’ to be approached, despite some patients agreeing to meet or have contact with the researcher. However, there were examples where family ‘gatekeepers’ became part of the process [54], by facilitating access to the patient and by their presence in the interview itself, potentially shaping the stories that were being told. It is important to be mindful of these influences when undertaking this kind of research.