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

Abstract

BackgroundThere is limited understanding of the ‘lived experience’ of palliative care patient within the acute care setting. Failing to engage with and understand the views of patients and those close to them, has fundamental consequences for future health delivery. Understanding ‘patient experience’ can enable care providers to ensure services are responsive and adaptive to individual patient need.MethodsThe 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.Qualitative research using narrative interviews was undertaken, and data was analysed using thematic analysis. A sample of 20 consecutive patients complying with the inclusion/exclusion criteria were recruited and interviewed.ResultsPatient Sample:Of the 20 patients recruited, there was a fairly equal gender split; all had a cancer diagnosis and the majority were white British, with an age range of 43–87 years.Findings from Interviews:Overall inpatient experience was viewed positively. Individual narratives illustrated compassionate and responsive care, with the patient at the centre. Acts of compassion appeared to be expressed through the ‘little things’ staff could do for patients, i.e., time to talk, time to care, humanity and comfort measures. AHSPCT involvement resulted in perceived improvements in pain control and holistic wellbeing. However, challenges were evident, particularly regarding over-stretched staff and resources, and modes of communication, which seemed to impact on patient experience.ConclusionsListening to patients’ experiences of care across the organisation provided a unique opportunity to impact upon delivery of care. 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, and the role of social networks.

Palliative care in its own discourse: a focused ethnography of professional messaging in palliative care

“…The message of "You matter: we see you as a person", is in line with previous studies that recognize the importance of knowing the person in an authentic way, which allows the team to assist the patient and family better and perform clinical tasks [31,32]. Observed professionals did so through active listening, acceptance and dedication towards the patient, adopting strategies to approach the patient and their family to create and maintain a personalized therapeutic relationship [19,33,34]. All this recalls Sinclair's (2018) model on healthcare compassion based on PC professionals' experience [35].…”

Factors affecting quality of end-of-life hospital care - a qualitative analysis of free text comments from the i-CODE survey in Norway

“…The results illuminate how practical needs can generate dilemmas and strain when family members themselves have to leave the patient for food or rest, or experience undignified settings. This underlines the importance of paying attention to the "small things" that matter most [15]. The detailed descriptions of how organizational aspects of EOL care influenced symptom relief and relatives' support expand our understanding of how crucial these conditions are for adequate treatment and care.…”

Introducing the trajectory Touchpoint technique: a systematic methodology for capturing the service experiences of palliative care patients and their families

“…Importantly, the TTT goes beyond the clinical encounter, viewing a person’s palliative care experiences as a holistic journey that incorporates myriad tangible and intangible touchpoints. This broader perspective is increasingly important in palliative care research [ 22 , 32 ], but too often pre-designed healthcare evaluation surveys focus solely on the care provided to patients by healthcare staff, and fail to consider these wider issues [ 33 ]. Finally, the healthcare paradigm shift to person-centred care shifts our view of healthcare services from a dyadic exchange between clinician and patient to one that acknowledges that health services operate as complex networks of multiple entities.…”

“…Capturing patient perspectives is pivotal for evaluating quality [ 29 ] and patient-centeredness. Despite considerable debate regarding what exactly comprises patient-centred care [ 30 ] and certainly the concept is not without its critics [ 31 ], patient-centeredness is part of the larger transition from paternalistic professional and passive patient to a more collaborative partnership, both in the clinical encounter and more recently to include organisational structures, cultures, leadership, and processes [ 32 , 33 ]. People experience healthcare services holistically, so research should incorporate the whole range of service dimensions that may impact that experience.…”