Why narrative enquiry can be an excellent way of identifying healthcare service deficiencies
Questionnaire surveys at a hospice proved ineffective as a tool to identify areas for service improvement, but narrative inquiry with patients and their families identified important deficits that offered clear guidance for service development. This method needed a careful, respectful approach, as well as significant time and resources, but proved to be invaluable. Many of the patients enjoyed having an opportunity to tell their stories, while nursing staff could be involved in the project, thereby enhancing their skills and raising their ambitions.
Citation: Stangoe V, Mee S (2024) Using patient narratives to evaluate a hospice service. Nursing Times [online]; 120: 3.
Authors: Val Stangoe is chief executive officer, St Mary’s Hospice, Ulverston, Cumbria; Steve Mee is a retired associate professor, University of Cumbria.
- This article has been double-blind peer reviewed
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The staff team at St Mary’s Hospice has always believed that the quality of care in their small, rural hospice is, and should be, as good as that in any other part of the country. Satisfaction surveys carried out regularly in every service indicated that this was the case, with respondents being happy with all aspects of the care provided and rating the staff and facilities as excellent. Box 1 shows the questions they were asked.
Box 1. Survey questions asked of patients/clients and family members/friends
- Did staff communicate with you in a friendly and approachable manner?
- Did you feel that St Mary’s provided a safe environment for you?
- Did you feel that staff showed respect for your personal views, values and beliefs?
- Were you able to talk about the things that mattered to you?
- Did you feel you were involved in decisions about your care?
- If you attended St Mary’s Hospice for any care services, how would you rate the cleanliness/the food/the staff/the facilities?
- How likely are you to recommend St Mary’s Hospice to friends and family if they need similar care or treatment?
- Did you feel that your needs were met?
- Were you given the opportunity to ask questions?
Chief executive officer Val Stangoe and head of clinical care and education Jo Blake agreed, however, that positive feedback offered little in the way of direction for further service improvement. There was a discussion between those who believed positive feedback should be taken at face value and those who felt further exploration was needed, with Stangoe expressing it thus: “It was our shared view that understanding what people are, or are not, satisfied with should be of critical importance to any care organisation. In the hospice, our role is not just to stand back as people arrive at death; we are not merely porters out of life. Our function is the active support of people, patients, their families and their friends, so they die the best death available to them, that they reach some kind of spiritual peace as far as possible for them, [and] that those left behind are left gently, in a state that allows them to heal as easily as they are able. All of these things are totally individual to each person.
“If this, then, is the fundamental role of the hospice movement, the only way we can know if we are doing things right is if the stories from the people using our services, both patients and their families, tell us [that] we [are]. Their direct experience of our care trumps our belief about our care, or even our intentions. If we need to know what to do better, who else to ask other than the people who know?”
The management team agreed that the information available, based on questionnaires, did not meet the need to find the next level of care. These questionnaires asked the right questions – taken objectively, they gave people a chance to comment on service assets and deficits. What they could not factor in, however, was the emotional contract that seemed to form between the staff and people using hospice services – it was as though families felt an obligation to only be positive about hospice care. One patient who was asked what could be done better had said: “There is nothing they could do better, nothing”. There are obvious reasons for this:
- Some parts of the journey are so grim that anyone who gives succour is a hero;
- Some organisations are so limited in their ability to respond that, in comparison, hospices seem perfect;
- The high emotion of death renders into extremes those who help and those who hinder.
The decision was made to carry out a narrative inquiry to try to find a way past the emotional contract. It became clear that many people were not comfortable about ‘complaining’ – negative observations were often prefaced with a hedging statement, such as: “It feels churlish to complain, they are so lovely here, but…”. Such negative observations usually came towards the end of the discussion and often needed repeated questioning and reassurance, such as: “It is OK, the hospice staff really want to know where they can improve.” A questionnaire would be unlikely to draw out these opinions so fully.
There are, of course, less-altruistic or ethical reasons why the team considered this research worthwhile:
- The majority of funding comes from the community so it is only positive to show the hospice working to improve services;
- Published research would raise the profile of the hospice and lead to additional support;
- Moving away from fiscal incentives, staff could be involved in the project, enhancing their skills and raising their ambitions.
A narrative-based methodology was chosen so people could tell their stories. There is a well-established understanding that listening to patients and their families is an excellent approach to service improvement and, conversely, that ignoring the patient and family voice can lead to poor service and, even, to patient death. This deficit has been noted in national inquiries, such as Rooney (2022), Richie (2020), Kirkup (2015) and Francis (2013).
The Francis (2013) report identified a lack of collective responsibility in care provision and recommended that, as part of annual revalidation, nurses should be able to “demonstrate commitment, compassion and caring for patients, evidenced by feedback from patients and families on the care provided by the nurse”. In response to Francis, The King’s Fund (2013) acknowledged the influence of the patient voice and recommended that “NHS leaders should encourage and nurture patient leaders to help build collaborative relationships and develop genuine co-production as a way of improving services”.
The Nursing and Midwifery Council (NMC) (2018) code of practice emphasises the importance of collaboration. It requires nurses and midwives to “work in partnership with people to make sure you deliver care effectively” and to “recognise and respect the contribution that people can make to their own health and wellbeing”. The National Institute for Health and Care Excellence (NICE) (nd) suggests that “shared decision making is a joint process in which a healthcare professional works together with a person to reach a decision about care”.
There is clearly a requirement for all health professionals to consider how an analysis of patients’ experience of healthcare can, and should, inform reflective practice and service development. In 2016, Nursing Times published a seven-part series of narrative articles that explored these themes, based on reflections of patient and nurse narratives. The learning from this series underpinned the approach to this hospice project.
It could be argued that health professionals can only truly embody their professional responsibilities if they listen reflectively to patient stories and consider their position in the patient–nurse relationship. Snowden (1999) suggested using patient narratives can change listeners’ understanding of the patient experience, and give incentives for practice development and change.
Tevendale and Armstrong (2015) described some of the benefits of using patient narratives, including:
- Increasing health professionals’ understanding of issues affecting patients;
- Reframing and refocusing the learner’s understanding of the priorities of care for patients and their families;
- Closing the gap between human experience and theory.
Nurse revalidation – as outlined by the NMC (2019) – requires nurses and midwives to use feedback from service users to assess their compliance with the code of practice. Engaging with patient narratives can, therefore, be seen as an essential part of nursing practice.
Listening to hospice patient stories
For this project, 32 patients, four bereaved family members and six staff told their story. Patients described serious illness and, some, imminent death. Relatives told stories of profound loss. Hospice staff gave accounts of working with patients who are likely to die while in care. If there is a continuum of human experience, running from mundane to extreme, then these stories offered graphic accounts of life at its most challenging.
We all construct a narrative to make sense of the complexity of random events we face in life. We try to impose structure on the disorder (Frank, 1995) and this becomes the narrative that enables us to understand our experiences. The greater this disorder, the greater the need to impose a structure. Serious illness and dying present an extreme onslaught of bad luck and random cruelty – the most overwhelming kind of disorder. When these stories were collected, each participant had already structured their narrative and tried to make sense of their situation. The stories emerged as if already formed; we are working on a future article that will explore these death narratives.
“In questionnaires, it was as though families felt an obligation to only be positive about hospice care”
On reflection, it seems self-evident that we should have expected this. At the time, however, the researchers anticipated having to tease out these stories. It proved much easier, with little need for questions – respectful listening was all that was needed much of the time. It was as if the participants were waiting for a willing ear and some said they had never really told anyone of their experiences. One commented:
“I wouldn’t want to upset any of my family with all this, and the doctors and nurses never ask. Who else is there? I have enjoyed telling you.”
Another said he did not usually tell his story because he did not want it to seem as though he was complaining. Reflection on this part of the process led the researcher to consider whether a listening service, offered by people independent of clinical need, might be a helpful resource.
These stories were listened to with a deep respect for the storytellers. The approach was cautious and the researchers made sure to tread lightly as they engaged with such intimate narrative. A challenge with any narrative work is to create space for the person to tell their own story in their own way. As listeners, we must attempt to be attentive, but to minimise our influence over how the story is told.
A particular challenge is that some life experiences can set the storyteller apart from others. One participant said:
“I feel like I am now in a different world to everyone else.”
To understand these ‘alien’, and often uncomfortable, stories, it is important to try to avoid any preconceptions and to allow the narrative to have a life of its own. Many of us may have second-hand experience of serious illness and death involving those we love, which may lead us to make assumptions about the stories we are being told. Once we have made an assumption, there is the danger that we will hear the story through a filter created by our own narrative. It is as if a mental shortcut has been taken, which saves the effort of truly listening.
This happened in one interview when a recently bereaved woman told her story. She was upset about how things had turned out and apologised about being so upset. The researcher replied:
She became more upset and responded angrily:
“You can’t possibly understand.”
The flow faltered; the researcher had intruded on her story. On reflection, the researcher realised he had been thinking how he had felt at the time of his parents’ death – this was his own narrative.
If the story is given space to breathe and develop its own logic, it is more likely that the issues critical to the storyteller will be told. Starting with a set of questions can strangle the story at birth, as a question tells the storyteller what the listener wants to hear. A good ground rule, therefore, is to start with very few questions. The resulting ‘interview’ is more of a naturalistic conversation. And powerful conversations emerge when people facing death have a willing, active listener.
To foster the conversational feel of the exercise, the researchers had no pen or paper and maintained eye contact. The meetings started with introductions and social chat. There was an unavoidable switch to the ‘interview’ stage of the meeting, at which point permission to use a digital recording device was sought. This was denied once, but all the other participants agreed readily.
There was usually an initial apparent self-consciousness when use of the device began. Any initial tentativeness may have been partially because this was different to a health/professional style of interview, which is more typical in such a setting. The participants perhaps expected to be asked questions, as if it were such an interview. However, this self-conscious phase never lasted more than a minute or two.
Before the meeting, the participants had been told the hospice was keen to know what their experience of hospice care had been, and any way in which the service could be improved. Once the recorder was switched on, the researchers simply said to the participant:
“Tell me what you wish to tell me”.
If the participant seemed unsure what to say, there was sometimes a need for a follow-up question – for example:
“I’m interested in your illness and your experience of the hospice”.
Some would then suggest that they did not have a lot to say and probably would not be able to talk for an hour. They were then given assurance that whatever they had to say would be of interest. In all cases except one, the participant then told powerful stories of facing death and needing care. The one exception was a person who just felt too ill to carry on after 15 minutes or so.
After a moment’s pause, most participants knew where they wanted to start their narrative. A typical start was:
“I will start at the beginning and, obviously, you would be here the rest of the day if I told you the whole story so I’d like to just try to piece it together up to coming in here [the hospice] because that’s what it’s all about, coming in here.”
The theme for some seemed to be:
“There I was, just going along as normal, when this thing came out of the blue.”
Some of their stories started at the point of change, with the moment of transition from normal life to illness.
The decision was made to start with the patients’ stories, rather than their view of the hospice – this made the illness narrative the central focus. If the service deficiency had been the starting point, it was likely the patient might have found it harder to tie in service evaluation with their needs. The hospice would have become the focus of the story, not their experiences. The idea was that any hospice deficit would be embedded, or implicit, in the illness narrative.
It proved to be the case that participants were happy to tell their story and service deficits emerged from this. The researcher would listen for these embedded ‘deficits’ and ask questions to tease out the problem. For example, one man spoke of being bored in the hospice. The follow-up question was:
“What would have made it less boring for you?”
Towards the end of the discussion, participants were asked if the hospice might do anything better. A useful supplementary question was to ask:
“If you won the lottery, how would you suggest the hospice spend a donation?”
Ethical approval was obtained through the University of Cumbria. The following conditions were agreed:
- Seek participants with an open invitation;
- Arrange to meet where it is most comfortable for the patient. This was usually at the patients’ home or in a quiet room at the hospice.
- A small number chose their hospice bedroom;
- Make it clear what the information is for. Establish that the participant will have the opportunity to change the transcript of the conversation;
- Remind the participant that they may withdraw at any time, with no need to give a reason;
- After the participant has agreed with the transcription, seek permission to include their anonymised comments in publications.
The hospice counselling service was available immediately after the interview should any participant feel distressed by the process.
This opportunity was not taken up, as most people described feeling positive at the end of the discussion.
Every participant identified at least one service deficit. This included the person who started off their interview by stating:
“There is nothing they could do better.”
One family commented that two doctors on two different days gave very different messages about how long their loved one would be able to stay in the hospice. Uncertainty can be difficult at the best of times but, often, patients do not want to leave the safety of the hospice so any miscommunication about allocated time here must feel stressful.
Action: The senior doctor and hospice educator have attended an intensive communication training course that equipped them to communicate at a higher level personally and gives them skills to also teach this. Advanced communication skills training is now frequently offered, with plans to make it part of the mandatory training for all hospice clinical staff.
A bereaved person described phoning the Bereavement Service (one of the core hospice services) in a moment of distress. The bereavement team wasn’t available so the receptionist asked if she could help in any way. The person had called hoping for a voice she knew and was too distressed to speak to a stranger. At that time, there was a hospice policy to not use voicemail because so many hospice staff are part time and leaving messages for individuals led to unacceptable waiting times for a response.
Action: A direct line has been put into the Bereavement Service and voicemail activated for this service alone. Staff and volunteers have a rota to ensure regular collection and follow-up of all messages.
A patient felt attendance at hospice group-based services would be improved by allocating patients more time to speak to each other about their experiences.
Action: Staff running all groups will be mindful of the possibility to enable group members to discuss their illness. Of course, the hospice also has to be aware that some people do not feel comfortable talking with others about their situation. This means that opportunities can be offered, but never expected.
Removing the door-to-door lottery collectors had meant the loss of weekly conversations between players and collectors, which had been greatly appreciated by some.
Issue: While we were sad to hear that removing this service reduced social interaction, the provision of a service collecting money door to door was fraught with difficulties and no longer cost effective. It is, perhaps, a reminder that any change can have unforeseen consequences and it is important for services to remain mindful in times of change.
Some participants described how helpful the hospice’s open approach to talking about death and dying had proved to be for families. It was suggested the hospice should do more in the community to spread its approach to discussing death in a simple way.
Action: This is now part of the new hospice community strategy for the coming five years as a way to support the increasing numbers of people who will be ageing in complex ways. In December 2023, we started funding a new role that includes raising the public profile of conversations about death and dying as part of a new Compassionate Communities service.
Many commented on the negative connotations of the word ‘hospice’ and believed one enters a hospice to die, that it is a ‘one-way ticket’. One man thought his wife and hospice staff had colluded to have him “put away to die”.
Action: The new hospice information is now clear that 50% of people who enter hospice beds do go home again. The word ‘hospice’ is now not included in the new building signage to encourage broader and earlier use of the service.
The Living Well Programme focuses on teaching patients techniques for managing their own illness to stay independent. It was suggested the verbal teaching could be enhanced by written handouts to support practice at home.
Action: Handouts are now available for those using this service.
Referral routes into the hospice caused some people confusion. It was suggested that better communication should be made with health professionals, and others locally, to ensure everyone knows about the hospice.
Action: As the hospice has been in existence for 30 years, it can be easy to assume health professionals might know about it. Staff across health and social care often have difficulty staying abreast of changes to services, and hospices often stay out of mind until personal need brings them into focus. We have increased liaison with the local integrated care communities, which lead the development of local health systems, and this has seen an increase in referrals from some surgeries. Our new service in Barrow is working alongside both public-sector and charity-based health and social care groups to share space, and introduce hospice services to more people earlier.
Communication about what it is like in a hospice was felt to be something that could alleviate fear on referral. Some said if they had known what it was actually like, they would have been prepared to come earlier.
Action: The hospice plans to make a film to show what an admission would be like, display the bedrooms and dispel some of the myths. The resources for this project are to be identified.
The hospice (Fig 1) is built around a 200-year-old house with extensions added in the 1990s and 2014, leading to variation in the adaptability of the building. It sits on the top of a hill with deep rock at its back. There is little possible space left on which to build, and funding is limited.
Insufficient on-site parking was raised as an issue.
Action: Any further expansion would necessitate reducing the hospice gardens. However, there is a large community park next door. The hospice has co-funded a gateway and path, and additional parking spaces on the park’s site. Any further changes are limited by funding.
A frequent comment was that additional hospice beds should be made available.
Action: Bed occupancy only intermittently reaches 80%, which would indicate that there is no pressing additional need at present. More people are now supported at home than in hospice beds, as this can flex directly to patient need. There are demographic changes that might indicate more beds being needed in future, but the hospice is keen to work with other providers – such as nursing homes – to see whether these may be solved by using beds in other sites so care can be provided closer to where a family lives.
All rooms should be en-suite.
Issue: Of the current eight bedrooms, only five have en-suite facilities. It is difficult to see where the space to do this could come from, as the inpatient unit backs onto hard rock preventing further building. This might only be feasible if the number of beds were reduced to allow room for internal developments to be made.
A patient with breathing issues commented that having air conditioning in the toilets would help them breathe more easily.
Action: This has been noted and put on the list for adaptation, should funding become available.
A patient who smoked suggested that the door to the smoking area should be power assisted.
Action: Work on a new balcony with an improved door started in summer 2023.
A comment was made, semi-humorously, that the hospice would be better sited in Barrow, where there is the largest local population.
Action: Although clearly moving the building isn’t possible, a new provision offering all services except beds was opened in Barrow. This will be the focus of work going forward to offer people supportive activities closer to home.
One patient enjoyed watching the bird feeder outside his bedroom window. At times, these feeders run out of seeds.
Action: This task (topping up the bird feeders) has been allocated to some volunteers.
Some people were concerned by the fact that there was no single service route into the hospice, and that people did not always attend service A before service B. They felt this was not equitable.
Action: The problems in meeting this suggestion are due to the individual nature of people’s needs and the varying points at which they might be referred for specific support. Access to services is offered on a needs basis rather than choice. The new services offer community-based activities with easier access.
People couldn’t attend on the specific days that some activities were taking place and wished we could offer them more often.
Issue: This is a clear resource issue. It would prove difficult to achieve with current staffing and resources.
Two patients stayed with us for longer than normal and both commented on being bored and lonely.
Action: The solutions implemented were:
- iPads were purchased for every room;
- Smart TVs were installed in each bedroom and the over-the-bed arm holding these was improved to make them more flexible to patient need;
- A new volunteer bank was initiated with volunteers able to drop in at short notice to provide companionship.
Song sheets used in day care had print that was too small.
Action: Song sheets were changed so they featured a larger print.
Patients with financial concerns didn’t know who to ask for help.
Action: A trained representative from Furness Carers, a non-profit making organisation that provides advice and support to unpaid carers, attends regularly to provide a financial advice service.
Living Well sessions were too long for one person.
Action: Continual changes have been made to Living Well services to adapt to patient and carer need, and to the staff available and to patient feedback. It is always hard to strike a balance between the needs of any group and individual patient needs.
We think this exercise was a success. We made several changes in response to the comments made, as outlined above. Many of the actions taken may not be huge but they have all had the potential to impact positively on someone’s experience of our care. Two new initiatives that were introduced in response to this research are set out in Box 2. Some changes cannot be made without additional resources, but this gives us a focus for when we make applications for grants.
Box 2. New initiatives
Significant change to future service delivery came directly from staff’s recognition of the power of this listening exercise. This led to the hospice investing in two specific changes to the approach to patients and families:
- Advanced communications skills courses are offered internally to all clinical staff and available to those working in external services. These courses teach staff how to guide and facilitate difficult conversations. This enables them to listen to patients, and help patients and families to listen to each other – particularly in that highly emotive period towards the end of life. Helping families to approach closure and peace is our most powerful gift.
- A new public education role will enable people across our community to understand how they can play an active role in creating a compassionate community by talking and listening, openly and honestly, in conversations about death, dying and grief.
Having the evidence of these patient comments puts us in a better position than before in terms of service improvement. More ideas were generated than ever came from the satisfaction surveys we carried out – and that was the main purpose of the exercise.
- All healthcare services are able to improve
- Patients are in the best position to advise on service improvement
- Narrative inquiry is a powerful tool for ascertaining suggestions
- Powerful conversations emerge when people facing death have a willing and active listener
- It is vital that health professionals listen reflectively to patient stories
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