Older adult and family caregiver preferences for emergency department based-palliative care: An experience-based co-design study

Abstract

Background

Older adults (>65 years) with palliative care needs are increasingly accessing the emergency department. Some interventions have been developed to improve the care provided, but the majority of research has focused on provider perspectives. Limited understanding of patient and family experiences and priorities means important needs may be overlooked.

Objectives

To explore patient and family caregiver experiences and identify their improvement priorities for emergency department-based palliative care delivery.

Design

A participatory action research design, experienced-based co-design, was adopted. Filmed and audio-recorded interviews and individual feedback sessions were used to capture patient data.

Setting

An urban emergency department in the UK.

Participants

Six patients aged ≥65 with palliative care needs and four family caregivers were recruited from the emergency department.

Methods

Participants took part in individual or dyad audio-recorded or filmed interviews. Interview data were analyzed using thematic framework analysis. One-to-one feedback sessions with participants were used to validate findings and rank the themes to identify patient and family priorities for improvement.

Results

The analysis identified five prominent themes that captured the patient and family experience of emergency department-based palliative care. 1) Systems and processes; 2) communication and information; 3) changing expectations (of what can be done for one's health on a personal and system level); 4) recommendations (for improving palliative care in the emergency department); and, 5) acknowledgement and validation (of the patient and family). All themes except ‘recommendations’ were selected as improvement priorities. Within the context of these improvement priorities, participants provided rich insights into their perceptions of care and identified small but significant actions that could be implemented to improve their experiences of palliative care in the emergency department. These included being offered a drink or phone call, being included in conversations about their care, and being kept informed of what was happening with their care.

Conclusions

Older people with palliative care needs and their family caregivers were able to share their experiences and highlight improvement priorities for emergency department care using the experience-based co-design approach. Their experiences offer new perspectives, which can be used alongside emergency department and palliative care clinician perspectives to support service and outcome measure development in future emergency department-based palliative care.

Tweetable abstract

#EBCD study shows older adults with #PalliativeCare needs value communication, compassion & inclusion in #SharedDecisionMaking in the #ED

What is already known about the topic?

• •Older people with complex comorbidities and palliative care needs are increasingly accessing emergency department services, often in the last year of life.
• •Emergency department-based interventions to improve palliative care delivery have predominantly focused on staff needs and perspectives.
• •Interventions to improve emergency department-based palliative care services rarely includes collaboration with older, palliative patients and family caregivers to directly address their experiences, perspectives and care priorities.

What this paper adds

• •This study found that patients and family caregivers were willing to collaborate with an academic researcher to identify priority areas for improving emergency department-based palliative care delivery: communication and information, systems and processes, changing expectations of one's health, and acknowledgement and validation.
• •Though patients and family caregivers did not expect emergency department staff to ‘fix’ their conditions or know their full prognosis, they often felt isolated in the emergency department, and excluded from decision-making, with family caregiver expertise not always well recognized.
• •Patients and family caregivers valued simple, frequent and supportive communication from emergency department clinicians, but acknowledged that greater support for complex conversations would be beneficial.

Introduction

Palliative care is defined as the multidisciplinary biopsychosocial-spiritual care of a person with a life-threatening illness and their family. (World Health Organisation, 2011) Benefits of this approach include improved patient quality of life, (Temel et al., 2010) reduced hospital length of stay, (Wu et al., 2013) satisfaction with care, (El-Jawahri et al., 2011) and goals of care congruent with patient preferences. (Dunlay and Strand, 2016) Since the early 2000s, there has been increasing recognition of the use and role of the emergency department in palliative care delivery. (Quest et al., 2011, Lamba et al., 2014, Cooper et al., 2018, George et al., 2016) While different research designs in epidemiological studies make it challenging to estimate the exact prevalence of patients with palliative care needs in the emergency department, (Wong et al., 2014) it is estimated that approximately 75% of people aged 65 and older have one or more visits to the emergency department in the last six month of life. (Smith et al., 2012) Older people (65+) are particularly vulnerable and have higher emergency department use than the general population. In the UK they account for approximately 23% of all emergency department visits (Banerjee et al., 2013) and in the US, 21% (Schnitker et al., 2011). Causes for emergency department visits among older patients include reluctance to ‘bother’ their primary care provider, (National Cancer Intelligence Network, 2012) condition deterioration, and limited access to, and availability and integration of community services (Banerjee et al., 2013)^, (Green et al., 2016). As a result, the emergency department often serves as a place of diagnosis, with a report from the National Cancer Intelligence Network finding that one in three cancer diagnoses in those aged 70+ in the UK occur in the emergency department (National Cancer Intelligence Network, 2012). Patient vulnerability in the emergency department is heightened by a reticence to self-advocate, (Way et al., 2008) inability to compete with ‘louder’ emergency department patients, and a sense of being lower priority due to advanced age (Bridges and Nugus, 2009). Further challenges in the emergency department are associated with environmental factors (noise, waiting times, unpredictable environment) that can increase already heightened anxiety (Green et al., 2016)^, (Smith et al., 2010).

Growing recognition of the increasing use of the emergency department among older patients with palliative care needs has led to exploration into emergency department staff perspectives (Wright nee Blackwell et al., 2017, Lamba et al., 2013, Shearer et al., 2014) and new models for integrating palliative care in to the emergency department (George et al., 2016)^, (Quest et al., 2013)^, (Grudzen et al., 2016). However, little research has included the perspectives or participation of patients and family caregivers, a vital and recommended component of palliative care and palliative care research (George et al., 2016)^, (Sleeman and Murtagh, 2014). Lack of inclusion may be attributed to the challenges inherent in involving palliative care populations in research, as unpredictable disease trajectories, complex symptoms and care burden can affect meaningful engagement (Goodman et al., 2012). However, the legitimacy of ‘successful’ evaluations is threatened without patient and family insight. As a result, outcomes may address staff and health management services concerns but overlook specific needs of patients and families.

To address this gap in knowledge about patient-family experiences and needs in emergency department-based palliative care, we conducted an experience-based co-design study. The aim was to improve emergency department-based palliative care delivery through exploration of experiences, and co-design processes with emergency department clinicians, patients and family caregivers. Due to the richness of data, we report on the co-design methodology, and emergency department clinician experiences elsewhere (Wright nee Blackwell et al., 2017)^, (Blackwell, 2015)^, (Wright et al., 2017). This paper focuses on patient and family emergency department-palliative care experiences, and their recommendations and priorities for improving care delivery (Table 1, Stage 3).

Table 1.

Application of the six stages of experience-based co-design.

Experience-based co-design Stage	Process
Stage 1: Setting up the project	Gaining trust of emergency department medical & nursing management & permissions to conduct staff interviews.
Stage 2: Gathering clinicians experiences	Individual interview followed by focus group-style feedback sessions.
Stage 3: Gathering patient and family caregiver experiences	Recruiting patients & families in the emergency department, with phone-call follow up & individual home-based interviews. Analysis is conducted, followed by feedback validation session. Participants rank themes in order of importance then agree quotes to include in the patient-family film.
Stage 4: Bringing clinicians, patients and family caregivers together in the first co-design event	Co-design event with emergency department medical & nursing staff from all levels, other stakeholders, patient and family members. Findings & improvement priorities are shared, film is viewed. Facilitated discussion draws out group improvement priorities based on shared experiences.
Stage 5: Ongoing co-design work in small groups	emergency department medical and nursing staff formed small working groups to build on co-design event.
Stage 6: A celebration and review event	Unable to hold due to facilitator role change.

Methods

Study design

This was a doctoral study using the participatory action research methodology experience-based co-design, a six-stage framework for health service redesign (Table 1). Robert et al. (2015) experience-based co-design uses qualitative methods to enable clinicians, patients, family caregivers and other stakeholders to develop strategies in response to challenging experiences within a healthcare setting (Robert et al., 2015). Participants identify defining moments (known as ‘touchpoints’) that shape their perceptions of their experiences (Robert et al., 2015). Touchpoints are collaboratively analysed through discussion, process mapping and co-design activities to identify and develop patient, family and clinician improvement priorities and strategies for service improvements (Robert et al., 2015)^, (The Point of Care Foundation 2017).

Ethical approval

The study was approved by the National Research Ethics Service and a London Research Ethics Committee (anonymized for peer review). Ethical considerations included embedding single-researcher safety protocols for interviews conducted at participant's homes. Access to formal supportive services from the study site was available if interviews highlighted ethical concerns from their experiences or needed further support. The study was designed with flexibility in all stages to accommodate participant's potentially fluctuating needs. Finally, careful maintenance of participant control over the use and sharing of their data across study stages and into dissemination, for example filmed or audio-recorded interviews, opportunities to review and remove information shared during interviews before any formal use or sharing.

Setting

The study focused on the emergency department of a large inner-city UK teaching hospital that serves a diverse demographic with approximately 170,000 patients. An estimated 16,000 are aged 65 and older. Previous research identified significant unmet underlying palliative and end-of-life care needs among this population in the emergency department (Beynon et al., 2011). Recruitment took place in the emergency department and data were collected at participants’ homes.

Participants

Potential patient and family caregiver participants were identified using purposive convenience sampling with broad inclusion criteria (Table 2) (Sleeman and Murtagh, 2014)^, (Addington-Hall, 2002). Dewing's Five Stage Process of Consent supported the multi-stage process of experience-based co-design by embedding participant control of their data throughout the study (Dewing, 2008). Potential participants were approached by RW(a palliative care nurse and doctoral student with qualitative research training at the time of the study) in the emergency department. Agreement to participate was gained via a follow-up telephone call and participants provided written consent prior to the interview.

Table 2.

Participant inclusion and exclusion criteria.

Participant	Inclusion Criteria	Exclusion Criteria
Patient	Age 65+ English speaking Patient at study site Emergency Department Living in local catchment area Patients with long term/terminal conditions*: Palliative condition definition: Cancer, chronic obstructive pulmonary disease (COPD), heart failure, renal failure, liver failure, neurological disease (multiple sclerosis, Parkinson's, motor neuron disease) AND symptoms (pain, breathlessness, nausea, weight loss, anxiety) and/or complex social needs.	Non-English speaking Aged 64 or younger Any cognitive impairment preventing provision of informed consent, e.g. dementia Anticipated prognosis of two months [as per the AMBER care pathway guidance**]
Family Caregiver	English speaking Living in local catchment area Family caregiver of a palliative patient aged 65+ who had used the study site Emergency Department	Non-English speaking

*adapted from: Beynon T, Gomes B, Murtagh FEM, Glucksman E, Parfitt A, Burman R, Edmonds P, Carey I, Keep J & Higginson IJ (2011): How common are palliative care needs among older people who die in the emergency department? Emergency Medicine Journal 28, 491-495.

**Guy's and St Thomas' NHS Foundation Trust, 2015. The AMBER care bundle. Guy's and St Thomas' NHS Foundation Trust, London.

Primary data collection and processing

RW conducted narrative, filmed and/or audio-recorded interviews, lasting approximately 25–60 min. As narrative interviews do not require a topic guide, Anderson and Kirkpatrick (2016). RW began each interview asking ‘please tell me about your experience of attending the emergency department for [your condition]’. Probing questions were asked to elicit more information about certain statements or experiences. On occasion, participants became upset recalling their experiences and were asked if they would like to stop and restart, or end the process, but all chose to continue. Participant support included mechanisms for reporting any concerning issues regarding emergency department care to the study site and/or Patient Advice and Liaison Service team.

Data collected comprised audio and film data, individual participant files with an auditable record log of every communication point, and reflective and analytical field notes on each interview, and emerging patterns and trends. RW also collected non-participatory observational field-notes during the recruitment phase, written up as a recruitment log. Finally, a reflexive diary of RW reflections aided bracketing and transparency in study process decision-making (Tufford and Newman, 2012).

Primary data analysis

Primary data analysis aimed to explore the individual narratives to find core themes that described shared experiences of emergency department-based palliative care, and could be understood as touchpoints (Robert et al., 2015). Audio-recorded interview data were downloaded to a secure network, issued a unique ID, and transcribed verbatim. Thematic framework analysis, supported by NVivo qualitative data analysis software, was deemed a suitable approach, given the functional purpose of analysis in this study, i.e. to inductively identify clinically important touchpoints that impacted experience rather than underlying social theories (Gale et al., 2013).^, Gale et al. (2013) Primary data analysis (frames 1–4) was conducted independently by RW, and a second researcher, both trained in qualitative research methods who independently reviewed the data, then met to discuss their coding schema and themes. PG and KL provided a peer review before the study participants were presented with the data for their considerations. This is captured and presented within five frames (Fig. 1): deconstructing the data (frame 1), finding the touchpoints (frame 2), developing categories broad themes (frame 3), finding the shared experiences across the themes (frame 4), and validating and ranking the themes with the participants to verify their authenticity (frame 5).³⁶ This analytical framework also serves as a coding tree (Fig. 1). Saturation was defined as the stage at which no new touchpoints, codes, categories or themes relating to clinical experience were identified (Fusch and Ness, 2015)^, (Walker, 2012). This definition was selected after careful consideration of the debate about saturation in qualitative analysis which has substantial flexibility and little consistency or clear recommendations (Walker, 2012). There are multiple ways for a person to reflect on their story meaning that in many ways saturation might never be reached. However, the purpose of this study was to identify the shared or touchpoint moments that defined the experiences. The given definition has been used to support analysis of narrative interviews, with a further recommendation that more than one case be included to show variation, as occurred in this study (Walker, 2012). The field-notes provided additional context for patient and family narratives.

Fig. 1.

Visual representation of thematic framework analysis and coding tree.

Participant validation and ranking of analysis findings

All participants took part in one-to-one follow up sessions with RW. In each session, participants reviewed their transcript and the themes identified across all interviews, answering seven questions designed to determine if the analysis and themes gave an accurate representation of their experiences or if further analysis was required (Table 3). In each case, approval was given, and participants were therefore asked to rank the themes numerically from 1-5 according to perceived importance for improving palliative care experiences in the emergency department. RW then performed a secondary analysis, consolidating individual participant rankings to identify the shared perceptions of which themes should be prioritized for improvement activities (classified as improvement priorities: Table 4) (Froggatt, 2013).

Table 3.

Patient thematic validation guide.

Validation questions asked to participants 1 Did you feel the analysis was an accurate representation and understanding of your experience? 2 Did you agree with the overarching improvement priorities? 3 Did you agree with the extracts drawn out to represent that improvement priority? 4 Did you feel anything had been left out? 5 Did you want anything not coded to be included? 6 Did you want anything currently coded to be removed or deleted? 7 Are you willing to release the data to be used as per the study protocol?
Themes	Description of Themes
Acknowledgement & Validation	How well your own experience and expertise was understood and recognized by staff; being supported or unsupported.
Changing Expectations	How your expectations changed as you got older, about the care you would receive, and what could be done for you in the emergency department.
Communication & Information	The encounters you had with staff, how information was shared between services, between staff, and with you.
Recommendations	The suggestions you made for improving delivery of palliative care in the emergency department.
Systems & Processes	Considerations of the overall health system and the emergency department specifically, for example waiting times and physical environment.

Table 4.

Participant ranking of themes into improvement priorities.

1. Communication & Information 2. Systems & Processes 3. Changing Expectations 4. Recommendations 5. Acknowledgement & Validation*

*’Acknowledgement and Validation’ was later incorporated as an improvement priority by RW based on her observations of gaps in care, and to support the participant-selected improvement priorities in the wider study. See Discussion.

Findings

Characteristics of study participants

In total ten people (six patients and four family caregivers) participated in interviews and thematic validation and ranking sessions (Tables 4, Table 5). Eight agreed to film and audio recordings, one married couple (Ron and Jean) requested an audio-recorded interview only. No participants dropped out. One died shortly after their initial interview, and their spouse chose to keep their data in the study and provided validation and improvement ranking as a proxy participant.

Table 5.

Participant characteristics.

Interview Number	Name* & Gender**	Age	Patient or Carer	Condition (detail if known)
1	Ann (F)	65	Former caregiver for her husband, Alan. K	Alan had lung cancer
2	Ron (M)	86	Caregiver for his wife, Jean	Jean has several degenerative conditions
3	Jean (F)	83	Patient	Degenerative neurological condition (not dementia)
4	Angela (F)	66	Patient	Bowel cancer
5	Heather (F)	76	Patient	Liver cancer
6	Alan. F (M)	80	Patient	Prostate cancer
7	Fred (M)	78	Patient	COPD
8	Manubhai (M)	74	Patient	COPD
9	Shakuntla (F)	64	Caregiver for her husband, Manubhai	Manubhai has COPD
10	Barbara (F)	63	Former caregiver for her husband, Dave	Dave had metastatic liver cancer

*Participants gave permission for their forenames names to be used within dissemination activities. **F=female M=male. Mean age 75. 60% F

Patient and family priorities for improving emergency department-based palliative care

Our analysis identified five themes, presented in order of importance according to participant ranking (Table 4): Communication and Information, Systems and Processes, Changing Expectations, Recommendations, Acknowledgement and Validation. Table 3 provides an explanation of each theme as described to participants by [Author]. The findings demonstrate how different individual experiences related to a broader, shared experience (quotations have been edited for grammar).

Theme: Communication and Information (Improvement priority 1)

Participants ranked Communication and Information as the most important improvement priority (Tables 1 & 3). Although ‘communication’ and ‘information’ were initially delineated as individual themes, as analysis continued it became clear that touchpoints, positive and negative, most often derived during the communication of information. This gave rise to a single theme with three subthemes: 1) manner of communication, 2) type of information communicated, and 3) person-centeredness in communication.

Across interviews, positive and negative experiences often hinged on the manner in which clinicians approached communication and information with patients and caregivers:

‘It was very good indeed and in fact we had no province of complaint whatsoever…they announced who they were...their attitude was very friendly. They weren't just saying, well here I am, get on with it…I rather enjoyed it!’

Ron, Family Caregiver. Interview 2.

‘…You were just left there standing like you were nothing, a statue. You weren't asked what your name was, what your relationship was to the person…they would decide...Resuscitation [then] took over…they really reassured me…if he did die, he was in the correct place and they could give him everything that was going to be good for him…’

Barbara, Family Caregiver, Interview 10

The type of information communicated was also impactful for the patient-family dyad. When participants felt confident about the information provided they recalled a positive experience. Whereas, when participants felt ill-informed, or frustrated and exhausted from repeatedly answering the same questions, particularly given the palliative nature of their needs, they were more likely to recall the interaction negatively:

‘…people were very kind and very helpful and kept me informed the whole time…in these situations, you're in the best possible place and you just go with the flow…[and] people tell you what they're doing…the questions they were asking me and I felt very happy to ask them questions and I seemed to get the right answers and I understood what they were saying…’

Angela, Patient, Interview 4

‘…we were not kept informed…when you're in an emergency room well then you are assuming that something's going to happen…[but] you've got to go and wait and then be clerked in again and then you're asked again, what's the matter? What's wrong? Why are you here? Why have you been admitted today?...Why are we now telling somebody on a ward this who then will get a senior person, and then they will come and ask us again. And I know the importance of the information, the record keeping, but I do question how many times, if you're terminal, you have to be asked certain questions…’

Ann, Family Caregiver, Interview 1

Patient-centeredness underpinned successful communication as evidenced within positive touchpoints. Ann suggested simple but significant questions that clinicians could use to move away from clinician-focused priorities, to focusing on the concerns of her and her husband (Alan):

‘…they were doing the best they could but no one really asked “How are things? How are you doing with all of this? How are you coping? This is your third time you've come in, how do you feel? Is there anybody at home for you?” Nothing like that...So I think…that could be asked.’

Ann, Family Caregiver, Interview 1

Jean further highlighted the positive impact that patient-centred communication could have, where clinicians saw her as a person, and were careful to listen to her input:

‘…I had great faith in them from the way they treated me…Because in communicating in that way, you are giving the person the knowledge that you understand how they feel and that is very important…’

Jean, Patient, Interview 3

This contrasted with Jean's other experiences, where she observed with some frustration that she was excluded from, but witness to, conversations about her own care:

‘…because if you're left on the side and you hear the nurses and doctors talking about you, you feel, oh golly I could have told you that. It's a much better approach to go face to face and ask the question of the patient. You'll soon know if they can't tell you.’

Jean, Patient, Interview 3

While Ann and Jean's quotes demonstrate that patients and family caregivers hold valuable information that they are eager to share if asked, the onus is on clinicians to elicit this information. However, Ann's comment about being asked too many questions highlights the challenge clinicians may face in knowing what questions the patient or family member have already been asked, particularly if previous communications have not been well-documented.

‘…I think it's probably a generational thing too…teachers and the police and medical people that you don't challenge. You don't ask, you just leave it to them because they know but I think that's very much changing and that people do challenge…after all, they're only human, they're doing a job, just like us…”

Angela, Patient, Interview 4

As Angela explained here, age and societal norms may also explain why the communication onus sits with clinicians.

Theme: Systems and Processes (Improvement priority 2)

The second highest ranked improvement priority was Systems and Processes. Participants ranked this theme as a key improvement priority based on challenges navigating through the emergency department and facing its unfamiliar structure and processes. These included uncertainties about basic emergency department processes such as waiting times, and the unfamiliarity of a challenging physical environment raising anxiety levels. However, two subthemes encapsulated the main areas that participants wanted to address: 1) the mismatched needs of the patients to current emergency department model of care, and 2) transitions through the system.

Within their experiences, participants considered the needs that had led them to seek emergency care, and the juxtaposition of these needs against the needs that emergency department processes equip clinicians to meet. As participants reflected, they spoke with a mixture of compassion and concern not only for themselves, but also for the emergency department clinicians. There was acknowledgement that their palliative care needs were unique to a traditional emergency department environment but also the suggestion this should change. In these reflections, some specific areas to focus improvement strategies emerged:

‘…we had a very, very sick man who was terminal and he's lying on a trolley in A&E [Accident and Emergency Department]. And there must be a different route for this…there must be an area where they sit people who are requiring palliative care in all its formats, and the staff were not able to provide that ‘cause they were not there necessarily to provide that…’

Ann, Family Caregiver, Interview 1

‘…Nobody's blaming no-one…but we felt so helpless. There's nothing we could actually do…I just hope whoever listens to this is going to take heed and listen and change the way, this palliative care's got to change. There's no palliative care past Friday at 5 or 6 o'clock. There's no palliative care at weekends. People do die in those times. They don't choose a day, a time and a second when they're going to die.

Barbara, Family Caregiver, Interview 10

Interestingly, where needs were less complex and more in line with more traditional emergency department care the reflection was less emotive:

‘…all you can say is they did their best and, you know, if you had to have x-ray, it was done pretty quick...’

Fred, Patient, Interview 7

The second subtheme (transitions through the system) saw participants examine the process they witnessed govern the care provided in the emergency department, as well the connections between systems, such as leaving the emergency department and moving on to the next point of care. While some participants felt well supported and well informed in the emergency department (see Angela's quote in the previous theme), others suggested current emergency department processes dehumanize the caring process, stripping both emergency department clinicians and patients and family members alike of the time to see the person within the patient:

‘…there's no system, and it's not the nurses, they just haven't got time. They're bombarded with paperwork, they're bombarded with getting from A to B as fast as possible and in the meantime there's a patient laying there, that's got a heart, a mind, a soul, a body…I don't think they can see that part no more…That's what they forget about and that's the most important thing, the patient and the relative because it's the relative that takes all the pressure and everything from the patient. So if the relative can't be reassured, how can they reassure a patient? They can't do it, you can't do it…’

Barbara, Family Caregiver, Interview 10

Though the majority of interviews focused on the care within the emergency department itself, several participants identified touchpoints around a no-man's land that can exist between services within the wider system. While care needs remain constant, the care continuum is episodic. Angela gave an exemplar of this as she recounted how part of her discharge included collecting a prescription from the pharmacy which was within the hospital:

‘…I was then given some meds, but I had to go down and actually this was…the most off-putting part of the day. So it was about quarter to 10 in the evening [Angela had been in the emergency department since 10am that morning], by this time and I had to go down to the pharmacy, which of course was closed. So there was just a little window which you had to put your prescriptions through to the pharmacist. The waiting area was practically in the dark, and there was an open corridor down the side of it and I waited for about 20 minutes and the pharmacist came back and said she was terribly sorry, but she couldn't understand what the doctor had written and she was trying to locate him but he was on a break. Would I mind coming back in the morning. I said, no, I want to take it tonight…I really want to go home and not have to come back here tomorrow…’

Angela (patient), Interview 4

This closing encounter to Angela's emergency department visit was in stark contrast to the positive experience she had experienced while in the emergency department, as quoted earlier: ‘…in these situations, you're in the best possible place and you just go with the flow. And as long as the information is coming through, people tell you what they're doing, you know, it's fine…’ While an absence of clear communication between providers combined with the dark, open corridor would be unpleasant for any patient, for older patients with palliative care needs these experiences could be more challenging. A second example of this was shared by Ron and Jean as they recalled trying to get home from the emergency department:

‘I nearly didn't get home with her in the ambulance cos they didn't want to take me cos I was able-bodied and he only wanted to take her. But the point was if you don't, if you take her and she gets there first…she won't be able to get out!’

Ron, Family Caregiver, Interview 2

The immediacy of occurrences like those experiences by Angela, Ron and Jean after leaving the emergency department highlights not only the vulnerability of people with palliative care needs along the care continuum, but also that the emergency department visit is part of a wider care system, rather than existing as an isolated event and setting.

Theme: Changing Expectations (Improvement priority 3)

Changing Expectations was ranked third as an improvement priority. Changing expectations were found on two levels and understood as two subthemes: micro, or personal level changes, and macro, or system level changes.

At the micro or personal level, participants spoke about their changing expectations as they experienced deteriorations due to illness and age. Within this discussion was a reflection of their relationship with, and expectations of the healthcare system. There was consideration of expectations of one's own needs, expectations of the care that can be provided, and the realities of the systems that are in place:

‘…when you're mature, you go to hospital to stop you getting worse, not to be cured…’

Ron, Family Caregiver, Interview 2

At the macro or systems level, the current healthcare system is not often set up to support patients and families as they experience changes in their lives due to aging or disease progression. Rather than people moving smoothly through a care continuum, patients and families must try to adapt their needs to the existing care setting and structures. In the emergency department, the participants experienced the juxtaposition of an environmental design that encourages rapid treatment with efficiency as the driver.

‘…we're grateful for the fact that we were getting the appropriate care for the condition in the wrong environment…it doesn't feel as appropriate because we're not in the right environment to receive it, so our expectations are changing all the time… The palliative care is also urgent care and so that's almost a contradiction in terms because we're requiring palliative care in an emergency room…’

Ann, Family Caregiver, Interview 1

Ann's experiences illustrate an expectation that could be met and possibly also speaks to other themes: the need and potential for gentle patient-centered and palliative approach, delivered with urgency.

Theme: Recommendations (Improvement Priority 4)

The fourth ranked theme was ‘Recommendations’. Throughout the interviews, as participants processed their experiences they reflexively provided solutions and ideas to address different areas of difficulty. This was such a common occurrence across interviews that Recommendations became as a theme in its own right, and RW compiled and provided their suggestions to the emergency department clinicians in latter stages of the wider project to support efforts to improve emergency department-based palliative care.

Participant recommendations for improving emergency department-based palliative care predominantly focused on two aspects, the physical and the personnel. The physical environment was often as influential to how the experience was remembered as any other aspect. Participants considered the structure of the overall physical space as well as organization (or triage) of patients into different areas:

‘You have to make two department in A&E…it's better they have separate departments for older people, over 65…’

Manuhbai, Patient, Interview 8

‘I would have liked to have had somewhere…I could go and think to make calls…to the family. Because we are talking about their dad dying and I'm doing it on a mobile phone standing outside…cos it was difficult what you could say in front of Alan…I would like to have been introduced or had a form of a companion palliative care person around me that really understood.’

Ann, Family Caregiver, Interview 1

The second focus of recommendations related to emergency department clinicians and their dependence on limited resources. Participants were largely positive about clinician interactions, but expressed a need for more nurses and more time with them:

‘The only grievance I've got is too much management and not enough nursing staff.’

Fred, Patient, Interview 7

‘Somebody coming a bit more to see me, but there wasn't, no-one come in. Just now and again the drip and that, they were just doing that and I think they had my pulse and keeping an eye on that as well, and that was it’

Heather, Patient, Interview 5

The two factors were not always separate however, and Ron observed the need to balance physical needs with personal interactions.

‘…the patient's carer needs space to give that advice and help…you've got to allow for someone like me and Jean to help you. I'm not helping her, so much as I'm helping the staff.

Ron, Family Caregiver, Interview 2

Ron's suggestion that emergency department clinicians could also have a better experience of the care delivery if they engaged with the patient and caregiver and drew on the caregiver-patient personal expertise speaks to the shared relationship of the emergency department encounter, addressing needs of the staff as well as patients and families.

Theme: Acknowledgement and Validation (Improvement priority 5)

Participants ranked Acknowledgement and Validation the lowest when considering improvement priorities for EB-based palliative care. The naming of the theme reflected the different levels of acknowledgement and validation that emergency department clinicians gave to the experience and insights of patients, family caregivers, or the dyad as a unit. In some of the cases, acknowledgement appeared to correlate directly to the recall of the emergency department experience as positive or negative, particularly in terms of the trajectory of care:

‘…nobody asked us [Ann and her husband] anything about our thoughts, about how do we want the treatment? Where do we want the treatment to take place?…I knew that to get him home, this was the way we'd do it…’

Ann, Family Caregiver, Interview 1

A number of touchpoint moments were connected to the acknowledgement and validation provided or withheld by emergency department clinicians. These emerged across a diverse range of interactions which demonstrated a constant need for emotional support and connection. Seemingly small but significant responses from clinicians could effectively make or break an experience across encounters. Touchpoints were found where clinicians demonstrated an awareness of the patient-family caregiver's feelings, noted basic needs such as comfort, offered a drink or phone call, or encouraged involvement in decision-making or provision of care:

‘…Jean [Ron' s wife] is very unstable on her feet, she has no balance, so she has to be guided and led and held up and she totally lacks confidence. Because things that should work don't work... wherever we go, we lead her…I now know what I have to do and we do it quite well…she knows what she's got to do with me, but when it's somebody else, she suddenly loses complete confidence cos she doesn't know where to go.’

Ron (carer), Interview 2

For this participant population who were often acutely unwell, positive touchpoint moments were often linked to a sense of being ‘seen’ by clinical providers. For example, acknowledging or validating the fact that patients or family caregivers were often facing multiple fears and worries, and the calming impact simple interactions could have:

`There was no reassurance…It was just like, just another person... whereas when I was in the second time...she [the nurse] was really, really nice, really nice. That somebody I know was looking after me and I think I got upset, and she was looking after me again and there was nothing like that the first time...I mean I know we all need help and that but I was completely lost cos I didn't have no-one with me…’

Heather, Patient, Interview 5

This final quote captures the heart of the patient experiences. Though systems aim to provide careful pathways through complex systems, at the centre there are people who are often afraid and who need to be seen, heard and acknowledged. This recognition was a touchpoint in and of itself, informing the memory of an experience as either positive or negative.

Discussion

In this third stage of our experience-based co-design study, we determined five main themes that gave insight into the palliative care experiences of older adults and their family caregivers in the emergency department. The participant validation and ranking of the thematic findings provides further valuable information that can help shape the delivery of palliative care services for older people with palliative care needs in the emergency department. While the collaborative nature of this study provides greater validity to the findings, there must also be consideration of the influence of the lead researcher, and the potential for bias in interpretation Porter, S. (2007). The lead author has a background in palliative care nursing and this work was undertaken as part of a doctoral study. Participants were aware of RW's nursing credentials and background and it is possible that this influenced what they shared and how they shared it. Though previously affiliated with the study site, RW was also mindful of potential bias in favor of the organization, and narrative interviews were deemed appropriate a way of mitigating leading or biased questions. One methodological lesson was the need to provide appropriate support for nurses who have transitioned into a research role from a clinical one. During many participant interactions, participants would share about their experiences and health that sometimes moved beyond the scope of the study. Though the role of RW was made clear, this presented ethical challenges in maintaining a different type of ‘caring’ role, where the care was focused on the long-term changes that could be made through the research, rather than the short-term, hands on care that a clinical nurse would provide.

In acknowledging the potential for RW role and identify to have influenced the process, there is also consideration of the experiences of the participants within the study. Participant control of the data meant they were informed of its use at all stages, could redact any points from their personal interviews up to the end of the analytic process, and verified and ranked findings as they found them important. Unanimously, participants were willing to review the findings, but some did struggle with the ranking process, either stating some themes were of equal importance, or wishing to give RW final decision-making rights. Ultimately the ranking was based on the most votes, but that there was discussion and equal ranking highlights that the themes are not necessarily more important than each other according to an ordinal scale, and the context and experiences must be kept central when addressing challenges.

The first theme, communication and information, was an important factor that either contributed to, or detracted from a patient-centered approach to care. The patient-family dyad identified ways that communication of information could be improved, but rarely initiated such conversations or the unprompted offer of information. One possible reason for this, suggested by Angela, and supported by the wider literature, is that older people and those with palliative care needs may be reticent to raise difficult conversations, or feel it is inappropriate to question doctors (Gjerberg et al., 2015). This hesitancy may be further exacerbated by the loud and busy nature of the emergency department (Caswell et al., 2015)^, (Philip et al., 2017). However, Jean eloquently expressed a solution for clinicians, wherein the simplest way to determine what patients want and need, is to ask them. Though it may seem an obvious solution, the experiences shared in this study suggest this may not happen in practice as often as we might hope it does (Philip et al., 2017). Interestingly, the clinician experiences identified in our wider study corroborate this point, with many being unsure of what is appropriate or feeling hesitant to ‘open a can of worms’ (Wright et al., 2017). Taking these findings into account and drawing on recommendations from Ann and Jean, palliative care communication may be improved in the emergency setting if clinicians are prepared with follow-up questions to help understand the bigger picture. For example, asking the patient-family dyad for permission to ask more probing questions, and exploring factors that contributed to the emergency department admission which may differ to ‘typical’ emergency department admissions.

The second theme, Systems and Processes, showed that patients and family caregivers experienced issues that highlight the incongruence of their palliative care needs within an emergency environment. Emergency department visits for older people, and older people with palliative care needs tend to be driven by uncontrolled symptoms, an inability to cope at home, and perceived safety of the hospital, with visits increasing with age and disease progression (Green et al., 2016)^, (Latham and Ackroyd-Stolarz, 2014). However, as shown, emergency departments are not always equipped to support historically atypical patient needs. This means that despite the potential centrality of the emergency department to a person's palliative care trajectory, there is a contradiction in the needs that patients present with, compared to the needs that clinicians are able to meet. The interview findings showed some systems and processes seemingly working against clinicians’ best efforts to provide compassionate care, except where ‘traditional’ emergency department approaches to end of life care (as opposed to palliative) was clearly evident. System and process level issues also extended beyond the emergency department into transitions in care. The emergency department often serves as a safety net within the prevailing model of ‘resuscitate, stabilize, transfer.’ However, in the experience of the participants, the final component (transfer) assumed a degree of ability and resilience on the part of the patient, which may not be present in older people with palliative care needs. Essentially, the relative protection and support afforded to patients in the emergency department may not continue through the transition process back to the community. This was seen in the experiences of Ron and Jean, and Angela, where their positive interactions within the emergency department were undermined by their transfer experiences as they left the emergency department and tried to return home. In considering the delivery of emergency department-based palliative care, it is not always clear where duty of care starts and finishes, as people are prepared for discharge back into the community. This does not mean responsibility lies solely with emergency department clinicians, but rather considers where other services can connect to emergency department discharge processes more closely, for example transport, pharmacy and social work. Theories in transitional care support an interdisciplinary approach with greater inclusion of family caregivers and use of evidence-based protocols (Naylor and Keating, 2008). These have been found to reduce the incidence of poor outcomes stemming from poor transition that older adults with chronic, complex conditions are particularly vulnerable to (Naylor and Keating, 2008). Additionally, such efforts may minimize the isolation from the wider health system that emergency department clinicians can feel, (Wright et al., 2017) and reduce the risk of patients waiting alone in dark corridors, or being sent home without their family caregiver who holds the house keys.

Changing expectations, the third theme, was divided between changing expectations at personal and system levels. At the personal level, participant stories showed their needs, expectations for care and functional abilities were changing, and that these changes were magnified as their illness experience unfolded. Experiences of the aging process and different healthcare conditions are heterogeneous so predicting needs can be challenging. Furthermore, as Ron observed ‘…you go to hospital to stop you getting worse, not to be cured …’. At the system level, Ann's experience demonstrated that using the emergency department for palliative care needs meant that her preconceptions of what to expect had to change, often in the moment: ‘…palliative care is also urgent care, and so that's almost a contradiction in terms because you're requiring palliative care in an emergency room…’ As patients and family caregivers worked to adjust to changes in their lives and health, they needed the emergency department to recognize that some of these changes were irreversible. However, we note that despite increasing survival times, healthcare systems often focus on treating specific conditions rather than transitions in health across the life course. We suggest that advances in healthcare come with an expectation of healing and recovery, which needs to be balanced with the long-term management of gradual decline in health due to incurable conditions and comorbidities. Death is inevitable, and the patient and family caregiver participants were aware of this. Their challenge was experiencing functional and physical decline in emergency department, which is often so focused on saving life and has such a wealth of life sustaining interventions, that it can be challenging for clinicians to recognize that death is the final destination of every person's journey. By tailoring some emergency department processes away from ‘resuscitate, stabilize, transfer’ into a new approach for the present population, there may be more space for a greater focus on goal alignment. As such, emergency department clinicians may be better placed to support people with long-term conditions who are approaching the end of life, so that ‘the end’ comes as a gentle slope, rather than a sudden cliff edge drop.

The fourth theme focused on recommendations for improving patient and family emergency department-palliative care experiences. The participants primarily highlighted environmental features and personal interactions. These included more communication with clinicians, somewhere to make a private phone call, preference to be near other older adults, or space so that family members can help provide care. This theme raises a particularly interesting point for the wider literature. Qualitative investigation into challenges and barriers to emergency department-palliative care has predominantly focused on emergency department clinician perspectives and concerns. Their concerns are often more clinically focused on factors such as inadequate palliative care training, desirability (or lack thereof) of providing palliative care in an emergency environment, lack of communication regarding patient preferences from community-based providers, limited access to patient records, limited resources for specialist palliative care support, and limited time preventing high quality care delivery (Lamba et al., 2013)^, (Smith et al., 2009, Grudzen et al., 2011, Beckstrand et al., 2008). While some of the recommendations from participants in this study speak to similar concerns, participants more often focused on small but significant interactions that recognized them as people, rather than addressing complex symptom management or in-depth goals of care conversations. This more patient-centered focus speaks to the growing emphasis on primary palliative care, which highlights the difference between palliative care and end-of-life care (known as ‘hospice’ in the US) and enables generalist clinicians to address palliative care needs earlier on in the course of the illness (Quill and Abernethy, 2013). While emergency department clinician concerns are important to address and include (Wright et al., 2017), consideration and inclusion of patient and family recommendations can help generate practical and actionable ideas that clinicians can potentially immediately respond to. Indeed, in our wider study clinicians reported that they were able to respond rapidly to patient and family personal-level recommendations, and saw that this was impactful, potentially reducing the emotional distress that clinicians can feel in the face of larger, system level challenges (Wright nee Blackwell et al., 2017). It is also worth noting that many of the recommendations would also likely aid families of patients experiencing death from acute cause, for example cardiac arrest or severe trauma.

Within the final theme, ‘acknowledgement’ meant seeing the person in the patient and caregiver, while ‘validation’ meant recognizing the substantive contribution of the patient and family caregiver to the healthcare team. Many of the participants’ experiences and recommendations demonstrated that they had valuable insights that would have benefited both their own care, and help emergency department providers tailor their care more effectively. For example, Ann's experience shows there is an opportunity for primary palliative care in the emergency department for the dyad. She suggested simple questions that emergency department clinicians could ask, such as “Do you have anyone looking after you?” “Do you need anything?” where answers could be documented and serve as triggers for future care, or rapid referral to case management and social support. Heather's experience showed that small interactions made her feel seen, and gave her comfort from knowing people cared. Ron's relationship with Jean highlighted the trust that often exists between patient and caregiver which pre-dates clinician interactions. Healthcare providers can be dismissive of patients and families and often seek to verify what they are told by patients from other providers. It can be easy to forget that each patient experience is unique to them because the setting and routine are commonplace for clinicians. This may lead to the patient voice being undervalued, despite them being experts of themselves (Snow et al., 2013).

There are deeply complex end of life care interactions in the emergency department concerning issues such as advance directives, setting or re-setting goals of care, spectacular versus subtacular deaths (Bailey et al., 2011)^, (McClain and Perkins, 2002), and challenges of time, space, environment and capacity (Smith et al., 2009)^, (McCallum et al., 2018). These require ongoing research, and many services are developing innovative responses, such as emergency department-triggered palliative care consultations, or palliative care trained emergency department staff (Basol, 2015). However, the present study illuminates the experiences of patients who are not yet actively dying, but who have a range of complex needs that would benefit from a palliative approach. For example, decision-making processes around available choices and which services will be valuable (George et al., 2016). Despite underlying complexities, the issues at the core of positive or negative experiences within this study were infrequently related to the issues above, and often to do with far simpler matters relating to the manner in which information was communicated, or if they felt seen and heard. For this group of people experiencing palliative care needs, humanity was the dividing line between a positive or negative experience. Palliative care is grounded in the philosophy of seeing the whole person in the patient (1).

This is particularly key in a population who rarely advocate or ‘argue’ for their own needs. For example, the theme of ‘Acknowledgement and Validation' was one of the most prevalent touchpoints across the data, and yet was ranked as the lowest improvement priority by participants. When reviewing the top three selected improvement priorities, RW noted a dichotomy between patient and family caregiver's experience and opinions being either recognized and acknowledged, or overlooked and dismissed. This raised the concern that the presentation of patient and family caregiver selected improvement priorities might not be fully acknowledged and validated by clinician participants in the latter stages of the wider experience-based co-design study. It was anticipated that highlighting Acknowledgement and Validation as a theme would increase the attention paid to patient-family caregiver input. Therefore this final theme was included as a fourth improvement priority with the purpose of supporting the three patient-family identified priorities. There is precedent for this within the experience-based co-design methodology, where the research facilitator's non-participant observation provides additional insight into the impact of touchpoints moments (Donetto et al., 2014).

Based on the participant experiences and preferences it is clear that there is not always a need for a full review from a multidisciplinary team, or a complete reorganization of the emergency department as a service. Instead, we recommend increasing the emphasis on the manner in which interactions take place. An approach that strives to hear what the actual needs are, could help tailor interventions that meet not only the clinical needs of the condition, but also the personal needs of the individual. In our wider study, we found that many clinicians initially found it challenging to provide or even consider palliative care in the emergency department (Wright nee Blackwell et al., 2017)^, (Wright et al., 2017). Many felt overwhelmed, constrained and focused on tasks-orientated activities that were given higher priority (Wright nee Blackwell et al., 2017). The rich insights of our patient and family caregiver participants suggest that future research would benefit continued involvement of patient and family caregivers. Their involvement may actually encourage clinicians who have expectations of care delivery that extend beyond the expectations of the patients.

Strengths and weaknesses, and limitations of the study

Limitations of this study relate to resources and working with a group who had palliative care needs and unpredictable conditions. The use of purposive convenience sampling was deemed appropriate to support more rapid data collection and analysis as there was a high chance of patient mortality. Though one participant did die during the study, a strength of experience-based co-design is the control given to participants and family caregivers over their own data. The spouse of the deceased participant felt it was important to honor their input and provided continued consent for use of their data within the study. Limited resources within this doctoral study meant that people who did not speak English were excluded. However, though we used purposive sampling with regard to condition and age, we did not seek out a heterogeneous sample with regards to race, ethnicity or social class. Our sample were predominantly White British and though different socioeconomic classes participated, we are unable to suggest that the experiences and preferences we found would be representative of other populations. Emergency department-palliative care research for other populations requires future study (Goodman et al., 2012).

Conclusion

This paper detailed the use of experience-based co-design to explore the experiences and identify the improvement priorities of older people with palliative care needs and their family caregivers in an emergency department environment. Their insights provide valuable context and understanding to the field of emergency department-palliative care where the focus has traditionally been on clinician perspectives and concerns. This study showed that patient and family concerns may share some overlap with clinicians, but highlights that the mechanisms needed to enable positive experiences often stems much more from the prioritization of communication and information and the way interactions occurred and how they are perceived than from formalized systems. For example, an increased emphasis on communication and ‘small but significant’ interactions had a resoundingly positive impact on the memory of the experience. Future research may benefit from greater heterogeneity in patient-family participants to determine how specific needs and preferences vary across populations. This study adds valuable insights to a growing body of knowledge into the lived experiences of older people with palliative care needs, and offers some foundational strategies to support future research and quality improvement efforts.

Declaration of Competing Interest

None