Enhancing end-of-life care practices on the medicine units: perspectives from nurses and families

Abstract

Background

Death is a part of life. While most often a sombre event, opportunities exist to optimise the experience both for the dying patient and their loved ones. This is especially true in institutionalised settings, such as acute care hospitals where cure and recovery tend to be paramount.

Purpose

To understand ways to improve end-of-life (EOL) care from the perspective of frontline nursing staff and patient and family advisors (PFAs).

Methods

We conducted focus groups with frontline nursing staff (n=14) and PFAs (n=5) to understand ways to optimise EOL care. Using a videoconference platform, one researcher used a flexible interview guide while a second researcher took field notes. These focus groups were in follow-up to a comprehensive need assessment survey as part of a programme to enhance EOL care practices on the general internal medicine units at our hospital. We used source data from deidentified audio recordings and researcher field notes.

Results

Five important categories regarding current EOL care practices emerged: communication among key stakeholders, assessment and management of symptoms, engagement of the palliative care team, engagement of the spiritual care team and ongoing tests and interventions at the EOL. We identified challenges specific to each respondent group as well as common challenges from both the professional and public perspectives.

Conclusions

Views elicited from patients, families and nurses in this qualitative study have informed the development of strategies to enhance EOL practices in our hospital that may be useful in othercentres.

WHAT IS ALREADY KNOWN ON THIS TOPIC

• Optimal end-of-life care in acute hospitals is often challenged by barriers including lack of nursing time and capacity, lack of training, and a focus on cure and recovery.

WHAT THIS STUDY ADDS

• This study of views from frontline nurses and patient and family advisors identified 5 important issues that, if addressed, may help to improve end-of-life care. These data informed the development and implementation of several strategies to enhance end-of-life practices.

HOW THIS STUDY MIGHT AFFECT RESEARCH, PRACTICE OR POLICY

• The challenges and strategies derived from this study may be of interest to other institutions seeking to optimize the end-of-life care experience.

Introduction

The dying process, no matter where it takes place, has an impact on the lives of everyone involved. While deaths in hospital have decreased over the past decade, half of Canadian deaths annually still occur in hospital.¹ Acute care institutions and healthcare providers alike have an opportunity to optimise the dying process, not just for patients, but also for their loved ones, as well as the healthcare team.

Those working in acute care hospitals tend to focus on cure and recovery so much so that there are challenges regarding optimal end-of-life (EOL) care for hospitalised patients. Studies have identified many barriers to ‘a good death’ including lack of nursing time and capacity, prioritisation of other clinical duties, lack of training, insufficient private spaces, ongoing clinical tests and interventions, differences among team members about the optimal approach and inadequate symptom control, particularly in non-cancer patients.2,6

To optimise EOL care practices at our institution, we administered a comprehensive survey to frontline nursing staff on the general internal medicine (GIM) wards.⁷ Based on the results of the survey, we identified the need to improve EOL care. Therefore, we conducted focus groups with nursing staff survey respondents of the foregoing survey who had indicated willingness to engage in follow-up interviews to better understand the scope and nuances of identified problems. To augment these views and ensure that the patient and family perspectives were honoured, we also invited members from the hospital patient and family advisory (PFAs) committee to participate in focus groups on this topic.

Methods

This qualitative focus group study was part of a larger multiphase programme to enhance EOL care practices on the GIM wards at our hospital. St. Joseph’s Healthcare Hamilton (SJHH) is a university-affiliated urban general hospital in Canada and there are four GIM units—3 wards and one step-down unit. These units are staffed with nurses, attending and resident physicians, and other professionals such as physiotherapists, respiratory therapists, occupational therapists, pharmacists, dieticians and social workers. SJHH has palliative and spiritual care teams that provide services on a referral basis. For palliative services, a physician referral is required.

We previously conducted a comprehensive self-administered needs assessment survey of GIM nursing staff,⁷ which highlighted several issues warranting further study. While we gleaned some qualitative data from the survey, it was limited in scope. To better understand the nuanced challenges of this unique aspect of care, we conducted focus groups of both frontline nurses and PFAs using videoconference methods. Nursing groups and PFA groups were conducted separately due to their differential knowledge and experience as well as the nature of the questions.

We selected focus group methodology rather than individual interviews not only to allow participants to discuss the topic from their perspective but also to facilitate discussion among participants. As shown by Guest⁸ and Baillie,⁹ the synergistic effect of a group versus individuals can help generate additional ideas and themes that might not have otherwise been realised. Using the results of the survey, we identified quantitative items that indicated a common lack of knowledge, comfort or confidence as well as those issues identified in free-text and open-ended question fields. We then developed the flexible interview guide based on the areas of the survey that warranted deeper understanding. The guide left questions as open-ended as possible to invite broad discussion about EOL care including potentially new ideas that were not addressed in the survey.

The staff interview guide included questions about their perceptions of the palliative and spiritual care teams available to assist with EOL care; how staff are educated about EOL care (including nursing colleagues, medical learners and staff physicians); the information they would find helpful to have easily accessible; concerns about medication management; and a final open-ended question based in design thinking asking staff what was their ‘rose’ (what is currently working well with EOL care), ‘thorn’ (what is challenging or not going well) and ‘bud’ (a desired outcome of this project) regarding EOL practice.¹⁰

The PFA guide included questions about their perceptions of the palliative and spiritual care teams, the 3 Wishes Project,¹¹ and the information they would find helpful if they had a hospitalised loved one at the EOL. Finally, we asked if they had experienced a loved one dying in an acute care hospital and if so, if they would share the aspects they thought went well and which did not go well. Given the sensitive and potentially emotionally provocative nature of this final question, we sent it via email ahead of time, indicating that answering it was completely voluntary. At the time of the final question being posed to the group, any PFA who wished to adjourn was invited to leave the meeting.

Sampling frame and recruitment strategy

The nursing sampling frame was all needs assessment survey respondents who indicated their willingness to engage in follow-up interviews on the final survey question (n=72 of 144 total survey respondents). To minimise the chance of skewed participant characteristics based on seniority, we grouped survey respondents as possible participants by duration of practice (0–5 years (n=31); 6–15 years (n=26) and more than 15 years (n=14); n=1 did not indicate duration). Thereafter, we sampled by randomly selecting numbers associated with survey respondent IDs and reached out via email to each one until we achieved three to four staff per focus group. Practice duration and GIM unit representation were balanced within each focus group.

For family members, we approached the hospital’s patient partnership lead and sent an email invitation to PFA committee members for our hospital to volunteer to participate.

The research team members were not in a peer working relationship or a supervisory role with the nursing participants, nor were they involved in the care of patients related to the PFA participants.

Data collection

Focus groups were conducted via Zoom and were facilitated in pairs, JCR and NH, with one investigator facilitating the focus group and the other taking detailed field notes. Representing an interprofessional team perspective, the paired interviewers were a physiotherapist (JCR) and nurse (NH); the other researchers were physicians (AB, RH, DJC), and a spiritual care clinician (LL). We collected the role and gender of focus group participants. After introductions and welcoming everyone to the group, we obtained participants’ express verbal permission to audio record the session. Once consent was obtained, we began to record the interview using the flexible interview guide. The sessions were recorded without identifying information and were only used to assist with analysis after the focus group. The audio files and field notes were retained in password-protected computers. Recordings were not transcribed but reviewed during the analysis stage.

Data analysis

The interviewer (JCR) and field note taker (NH) debriefed after each focus group. We also held separate periodic team meetings to discuss findings as they emerged and consulted with additional experts as needed for complex discussion points (eg, physician–nurse dynamics). We conducted a descriptive content analysis¹² to arrive at a comprehensive understanding of EOL care from the perspective of those experiencing it, using field notes and audio recordings. We identified, analysed and reported patterns of respondent perspectives using content analysis.

Ethics

This study was conducted in accordance with the Tri-Council Policy Statement for Ethical Conduct for Research Involving Humans (TCPS2). The need for formal ethics review was waived by the Hamilton Integrated Research Ethics Board as this study was part of an ongoing quality improvement project on EOL care on the GIM wards.

Patient and public involvement

Patients and families were not involved in the development of the research question, study design, recruitment or conduct, however, they were included in the results interpretation to ensure that strategies resulting from this work address their needs.

Findings

In March and April 2022, we conducted 7 focus groups (2 with PFAs and 5 with frontline nurses) on the GIM wards for a total of 19 participants (14 nursing staff and 5 PFAs). Nursing focus groups had a range of 1–5 participants, in part due to scheduling challenges. The PFA groups had two and three participants. Of the 19 participants, 18 were women and 1 was a man. The duration of practice among the nursing staff ranged from 1 year to more than 15 years; nine were registered nurses and five were registered practical nurses. Each GIM unit was represented with at least one nurse participant.

We identified five categories during analysis: (1) communication among teams, patients and loved ones at the EOL; (2) assessing and managing symptoms; (3) engagement of the palliative care team; (4) engagement of the spiritual care team and (5) ongoing tests and treatments at the EOL. Data saturation was achieved after four of the seven focus groups.

1) Communication among teams, patients and loved ones at the EOL

Communication was the most important category brought up by the PFAs. Participants had experienced a range of communication styles and emphasized how at the EOL, communication is more important than ever. They highlighted how clinical staff should consistently introduce themselves to families and explain their role, and talk to the families rather than just the patients because they sometimes felt excluded from conversations. Some of the participant’s concerns related to the transition from active treatment to comfort care, and included insufficient communication about the decision-making process, supports available, and what next steps to expect. They also highlighted the need for family members to be present with the patient during difficult conversations—not just to support patients, but as another set of ears to take in information and help to fill in any gaps.

Finally, the PFAs highlighted the importance of using ‘comfort language’ as opposed to words such as ‘palliation’ or ‘withdrawal’. They described this as helping to alleviate fears that the team will no longer provide care to their loved one simply because they were dying. The nurses endorsed the sensitive use of language about these processes.

2) Assessing and managing symptoms at the EOL

Symptom assessment and management was another key category. Nurses reported that often orders were neither appropriate nor adequate to manage patient symptoms (either the medication ordered or the dose). Furthermore, they reported that the medical residents, who are often called to write orders, lacked support on nights and weekends, and often deferred decisions about changing doses or adding new medications until an attending physician was on-site during conventional ‘business hours’. Another problematic medication management approach was residents writing a one-time, single-dose order that then required nurses to call multiple times through a shift to achieve symptom control.

Nurses also described how family dynamics can challenge symptom management. For example, they described scenarios in which families would decline all sedative medication, so the patient could be ‘more awake’ and interact with family, which nurses struggled with as it was not usually aligned with adequate symptom control. Alternatively, nurses described scenarios where the patient and/or family had made the decision to transition to comfort care, then asked for any and all medications to be given at once.

Knowledge about medications at the EOL was highlighted. For example, senior nurses reported that, especially with junior nurses, there was a lack of understanding of when to give medications. The example given was that the patient didn’t ask for anything so they must not need anything, however this is troublesome for patients with a decreased level of consciousness or limited ability to communicate discomfort. Fear of giving medications was frequently cited because nurses did not want to accelerate the dying process. They reported reviewing the medication administration record and being reluctant to increase the dose (if a range was given) or give it sooner (if a range of time intervals was given such as every 2–4 hours). Workload was reported as another barrier, especially with respect to pro re nata (or as needed) (PRN) meds, for example, if nurses were caring for 4–5 patients, and one was at the EOL, they found it difficult to assess and administer PRN doses that could be offered hourly. Finally, several participants highlighted scenarios in which they had given a medication as ordered and were rebuked by a member of the medical team for doing so, which they described as not only questioning their professional ability to accurately assess a patient and give medications accordingly but also undermining their confidence in providing medications to dying patients.

3) Engagement of the palliative care team in EOL care

Nurses highlighted the importance of engaging the palliative team at EOL because they perceived that the GIM teams do not always have sufficient experience with EOL care, leading to unnecessary ongoing tests and treatments, and potentially unnecessary patient suffering, and delayed medications for symptom management. Nurses also perceived a lack of understanding among medical teams about need-based versus time-based management, meaning they thought that palliative care could be engaged earlier to assist with interpreting illness trajectory with the family rather than waiting until the very end. However, they struggled with suggesting this to the medical teams for various reasons, for example, concern that the family had not been adequately informed of how sick the patient was, or the perceived reluctance of the medical team to consult palliative care unless a patient was ‘actively’ dying. Others believed that it was not the nurse’s place to suggest consulting another physician team. Finally, some nurses reported that they had been met with not just resistance but disregard and being told they were ‘too emotional about it’ when advocating for the involvement of the palliative care team.

Some PFAs expressed fear that the introduction of the palliative care team meant that the patient would be left to die and would no longer be cared for. These participants shared that it can be difficult to hear the term ‘palliative care’ and try to accept that is the trajectory their loved one is taking. Nursing respondents shared these impressions of family members’ perceptions as well.

4) Engagement of spiritual care at the EOL

The spiritual care team provides a variety of support services across the hospital, including non-secular services designed to support individual human need.¹³ Spiritual care clinicians help to acknowledge and explore suffering, identify coping strategies for the patient and their loved ones and identify resources to promote autonomy even for the dying patient. However, nursing staff and PFAs alike reported a common misconception that this team only offers religious support. From nurses’ perspective, they described that if they do not know if their patient is religious or not, they opt to not engage them. From families’ perspective, they perceive the offer of spiritual care as a sign that their loved one is dying and that the team is ‘giving up’. From both perspectives, open communication was highlighted as being important, for example, introducing with a question such as, ‘would you like someone to talk to?’ which leaves it broadly open to interpretation, rather than explicitly offering spiritual care, which is often misinterpreted as focusing on religious support.¹⁴

When asked how best to overcome this barrier, nurses considered that providing information on the scope of spiritual care services to their peers as well as families would be helpful.¹⁵ In addition, reminders for staff that this team is available to help were suggested, such as having the spiritual care team attend unit huddles to introduce themselves, check in every couple of days to see if there are patients who may benefit from their services or visual reminders such as infographics.

5) Ongoing tests and treatments at the EOL

While some tests and treatments may be necessary throughout the dying process, others are not. Nurses reported feeling uncomfortable sometimes with the level of ongoing active treatment that is likely of no benefit to a dying patient. They described this as occurring more frequently with medical residents but also with attending physicians. They also reported it being more of an issue on nights and weekends, which links to other findings about how nursing staff perceive that residents are not sufficiently supported after-hours in caring for patients at the EOL. The nurses described often being the ones to suggest stopping unnecessary tests or treatments to the physician team. Nurses also sought guidance on who can write orders about ceasing certain interventions (ie, whether a junior resident can discontinue hourly assessment of vitals or whether it needs to be a senior resident).

Table 1 further elucidates these categories and outlines suggested and implemented strategies resulting from focus group discussions.

Table 1. Categories with participant-proposed improvement strategies.

Category	Description(nurses)	Description (patient family advisors)	Proposed strategies	Implemented strategies
Enhanced communication	This category transcended the others with communication emerging as important to all aspects of EOL care. Specifically, nurses reported deficient communication between junior residents and attending staff, that impacted engagement of services, ordering of appropriate medications, etc. They also reported that at times there was challenging communication between nurses and physicians, with nurses sometimes feeling that their suggestions were dismissed by physicians. Nurses reported some communication difficulties within families that made discussions and symptom management challenging.	PFAs emphasised the need for comfort-focused language to alleviate fears that the patient would not be provided with care anymore. They also talked about the need for clinical staff to engage in discussion with them (loved ones) alongside the patient, and to ensure that someone is there to support the patient during difficult conversations. Of note, the PFAs mentioned that they appreciated when a member of the clinical team asked them how they are doing as well as the patient.They thought it would be helpful having a team member reach out after death to see how they are coping.Finally, they indicated that it is important for clinical providers to listen to patient and family needs and wishes, and then have open communication about these.	The nurses proposed an information resource including communication/language techniques and examples (especially for those with limited EOL experience) and answers to commonly asked questions (eg, what happens after death) that would help ensure everyone receives the same information from all staff. They also suggested education to help improve communication among team members and how to manage challenging family dynamics.The PFAs proposed enhanced communication training for clinical staff so they would introduce themselves on entering the room, ask how they are doing, along with how the patient is doing. They suggested allowing loved ones to be present during difficult conversations and listening with the same intent to family concerns and needs as they do with the patient. In addition, they reported it would be helpful when transitioning from acute care to comfort measures that the clinical team explain what can be offered to help make that decision and understand the next steps.	Comprehensive EOL information manual developed in collaboration with key services (palliative care, spiritual care, social work, pharmacy, physicians, etc.) and distributed to GIM units (hard copy, electronically, and available on each unit’s shared drive). Worked with Corporate Nurse Educator at our site to get the resource on our hospital’s intranet for access by any staff.
Symptom assessment and management	This is a complex category with several specific contexts emerging, including family dynamics contributing to medication challenges, lack of staff understanding of when to give medications and when to escalate doses (especially PRN medications), fear of accelerating the dying process, and workload impeding their ability to assess and provide short-interval medications (eg, hourly pain medications).	The PFAs wanted to ensure that the patient had their symptoms well managed, so they were not suffering.	The nurses suggested much in the way of education for this category, including a resource exclusively for medications used at the EOL, education on how to properly assess symptoms at the EOL (eg, when they may not be able to report it themselves), and education on non-pharmacologic symptom management options. Nurses reported challenges with inappropriate orders (inappropriate medication and/or dose), as well as challenges with junior residents’ orders (specifically not wanting to change anything, only ordering one-time doses, etc.), indicating that physician education and/or infrastructure to support junior physicians with appropriate symptom management is needed.	Development and distribution of EOL medication summary chart developed in collaboration with GIM and palliative care physicians, and a GIM pharmacist. These summary charts were posted in medication rooms of each unit and included in comprehensive EOL manual.Dedicated section in comprehensive information manual to EOL medications that consisted of the same information as the medication summary above.Dedicated teaching session on palliative and EOL care for medical learners on every rotation.Development of EOL introduction session to be added to Clinical Hospital Orientation for all new clinical staff.
Engagement of palliative care service	Nurses reported that the palliative care team is beneficial to patients and their loved ones at EOL for several reasons including assisting with the initiation and/or formalisation of goals of care discussions, assisting with and/or directing symptom management for medical teams with limited experience in EOL care, and helping identify unnecessary tests and interventions at EOL. However, they reported feeling that the term ‘palliative’ was intimidating to the medical team, particularly to residents, and that it may be perceived by physicians as a ‘hit to their ego’ suggesting they cannot manage patients at EOL. They also perceived reluctance to consult the team if it had not yet been communicated to family how sick the patient was. Nurses also felt reluctance suggesting it because they did not feel it was their place to make such recommendations.	The PFAs indicated they are fearful of palliative care, as to them, that means that the medical team is ‘letting their loved one die’ and therefore will not receive much care anymore.	Education was suggested for both nurses and medical teams to increase awareness about palliative care for patients at EOL and the importance of the palliative approach to care earlier in the illness trajectory to meet patient’s care needs.Nurses also reported not always thinking about consulting the palliative care team and suggested a reminder system or infographic to highlight their role.	Dedicated section on the Palliative Care team (who, what, when, why, how) in the information resource that was developed by the palliative care team.Development and distribution of an infographic highlighting the Palliative Care team; two versions—one directed to patients/families to cue them to ask about services if desired and one towards staff to remind them of their services. Infographics developed in collaboration with representatives from palliative care.
Engagement of spiritual care service	Nurses reported not truly understanding the role of the Spiritual Care team and therefore did not often think to engage them with their dying patients. Like the PFAs, the nurses reported that when they did think of Spiritual Care, it was only for their religious patients, and even then, only if they knew about their religion. Finally, the nurses reported a perceived difficulty in accessing spiritual care on off hours, that is, middle of the night or on weekends.	The PFAs indicated that they were unsure of Spiritual Care with the name connoting religion and so they were reluctant to accept Spiritual Care’s involvement if they were not religious. In addition, and similar to the palliative care team, the PFAs were concerned that engaging the spiritual care team meant that the medical team would let their loved one die and no longer provide care.	Education was suggested for this category, including to nurses and medical teams to increase awareness. Nurses also reported not always thinking about the spiritual care team and suggested some prompts or reminders or an infographic to highlight their role. There were suggestions to include the introduction of the Spiritual Care team into new staff orientation and to invite the Spiritual Care clinicians to team huddles on the units to increase visibility and awareness (also giving Spiritual Care clinicians the opportunity to ask and answer questions and inquire about potential patients). In addition, nurses suggested being more generic in their presentation of this team and rather than using the term ‘spiritual care’, ask more generally if the patient or their loved ones would like someone to talk to. This would be especially helpful in the context of patients or families who may not be particularly religious.	Dedicated section on the Spiritual Care team (who, what, when, why, how) in the information resource that was developed by the spiritual care team.Development and distribution of an infographic highlighting the Spiritual Care team; two versions—one directed to patients/families to cue them to ask about services if desired and one towards staff to remind them of their services. Infographics developed in collaboration with representatives from spiritual care.
Ongoing tests and interventions	The nurses perceived that a lot of unnecessary tests and treatments were still ongoing for patients at the EOL, occurring more frequently with residents, but also with attending staff physicians. They reported that this is not typically an issue when the Palliative Care team is involved. Finally, and like several of the other categories, they found this issue to be worse on nights and weekends further endorsing a lack of support for medical residents on off hours.	This was not a category that was brought up by the PFAs.	Nurses suggested that they would like more guidance on who can write which type of orders (eg, ceasing hourly vitals assessments), or whether this needs to be a senior resident or attending. The nurses also advocated for involving palliative care earlier in the process to help ensure that patients do not endure anything unnecessary.	Ongoing discussions with EOL project steering committee and EOL project physician representatives on how best to address nurses’ suggested strategies.

EOLend-of-lifeGIMgeneral internal medicinePFAspatient/family advisorsPRNpro re nata (or as needed)

Discussion

In this study, we conducted 7 focus groups with 14 frontline nurses and 5 PFAs about their experiences and perspectives with EOL care and how it could be improved. We found that nurses and PFAs alike believe the quality of EOL care could be improved to better support patients, their loved ones and healthcare team members. What the PFAs had to say was mirrored by the nurses and vice versa. While there were findings specific to each group, perhaps the most important categories were symptom management and communication—among healthcare team members, between the healthcare team and patients and their loved ones, and among patients and families. The other categories were engagement of the palliative care team, engagement of the spiritual care team and frequency of non-beneficial tests and interventions at the EOL.

Healthcare workers reported myriad challenges, with disagreement on the approach among team members, fear, discomfort and lack of knowledge and confidence cited as the most common concerns. PFAs’ perspectives included wanting a ‘good death’ for their loved one and emphasising the critical role of good communication. A recent systematic review of 16 qualitative studies similarly identified communication as a common theme—both as patients’ approached EOL and during the dying process.⁶ Specifically, staff communication skills, the type of discussion, and the frequency, timing and availability of information all influenced family perceptions of the quality of the EOL care.⁶ A significant barrier to optimal communication raised in other studies was the lack of early and honest discussions regarding prognosis.¹⁶ Discordant views among clinicians as reported in our study were also found in other research highlighting differing perspectives between nurses and physicians on what constituted quality of EOL care.¹⁶ Binda et al discussed barriers including the healthcare team’s fear of taking away patient hope, gaps in knowledge and discomfort with EOL communication and underestimating patients’ and families’ need for information.²

Symptom management is of paramount importance to the dying patient, the loved ones’ attendant to the death and the frontline nurses providing care. An interesting aspect of this in our study from the nursing perspective was the perceived imperative to provide good symptom management juxtaposed with the lack of confidence in administering the medications to achieve that goal. Much of nursing education and the available resources regarding medications are geared towards patients who are not dying and, therefore, it can be difficult for clinical staff to switch mindset towards pharmacologic treatment focused on comfort goals. Our group was able to use these focus group data to develop medication resources addressing the most commonly used medications at the EOL (including timing, dosing, route of administration, etc), their consequences including possible side effects, and how to manage them (table 1).

Scarce resources, in terms of staff and time, are an issue that plagues healthcare, and EOL care is no exception. With persistently high nurse-to-patient ratios, nurses are continuously pulled in multiple directions with priorities often going to non-EOL care patients. This challenges several aspects of EOL care, including symptom management as nurses reported often not having capacity to frequently assess patients to provide short interval PRN medications. Nurses described the difficulty in meaningfully engaging with dying patients and their loved ones when they are constantly being redirected to other patient needs. Another resource challenge is that of specialist services, such as palliative care. At our site, at the time of these focus groups, for example, there was only one palliative care clinical nurse specialist and two full-time physicians for the hospital. Research clearly shows the benefits of palliative care in supporting EOL care, such as improved quality of life, better quality of communication and higher family satisfaction with care^{17 18} as well as the value of early palliative intervention; however, with limited resources, it is not feasible to be involved with all dying patients, possibly missing those with higher EOL care needs. Walker et al conducted a systematic review of 16 qualitative studies that documented family experiences of in-hospital EOL care and identified five key findings: understanding of approaching EOL care, essential care at the EOL, interpersonal interactions, environment of care and patient and family care after death.⁶ Despite the vital role of specialist palliative teams, just 2 of the 16 included studies referred to the provision of specialist palliative care indicating the majority of EOL care was being provided by general hospital clinicians.⁶ The same was reported of spiritual/pastoral care with low rates of referral despite their availability to support patients and their loved ones at the EOL.⁶ Beyond insufficient awareness of these services, there may be a hesitancy to engage these experts. Nurses in our study reported not always thinking about how palliative and spiritual care consultations could help. Interestingly, though Miller et al posit that spiritual care is integral to caring for dying patients, not just for the patient but also for the nurses themselves as it helps them to reconnect to the deeper roots of nursing practice.¹⁹ Nurses also indicated occasional reluctance on the part of the attending physician team to engage other consulting services. From the PFA perspective, they reported feeling trepidatious when hearing the terms ‘palliative care’ or ‘spiritual care’ as they thought that meant no further care would be provided to their loved one. These findings helped us develop educational material and infographics to support both clinical staff, and patients and their families in understanding what these services can offer, perhaps most importantly preserving and maintaining patients’ personal dignity throughout the EOL process.

The issue of non-beneficial tests and treatments at EOL is a prevalent problem. A 2016 systematic review reported potentially non-beneficial medicines, such as antibiotics, and cardiovascular, digestive and endocrine treatments were administered to an average of 38%–75% of dying patients.²⁰ This may reflect prognostic uncertainty, reluctance to evaluate and discuss prognosis, or physician fear of malpractice for ‘not doing everything they could’.20,22 Indeed, nurses in our study reported feeling uncomfortable with the level of ongoing active treatment that may not be of benefit to the dying patient, particularly when medical residents were heavily involved in the care. Binda et al recognised this as a potential reason for discordance among team members when nurses experience moral distress about the appropriateness (or lack thereof) of continued medical treatments.²

Limitations and strengths

This study has some limitations. Nursing participants were those who indicated a willingness to participate in a focus group on survey completion. We sought perspectives from participants representing a range of views as per the sampling approach stratified by duration of work experience, rather than eliciting interest in focus groups from the broadest nursing base. However, this aligned with the follow-up intent of the survey. One male participant was included in this study, and while reflecting the distribution of nurses on the GIM wards, we are not sure how representative these findings are to all nurses. PFA participants were all members of the PFA committee at our site, whose views do not necessarily represent those of all patients and family members. However, each family member participant had experienced the death or very serious illness of a loved one in an acute care setting and was able to reflect on that during the focus groups.

There are also important strengths. We conducted these groups to gain a better understanding of contextual factors on the GIM wards, in follow-up to a quantitative survey. We employed two data sources—audio recordings and field notes to assist with data analysis. Nurses were sampled taking experience into account to minimise the chance of a skewed profile of professional participants. Although our survey was distributed to frontline nurses, we included PFAs to ensure that their voice was incorporated into our findings and ensure that strategies developed from this work would also meet their needs. We used the Standards for Reporting Qualitative Research (SRQR) reporting guidelines to summarise this project .²³ Finally, as this study is part of a larger EOL care programme, we used these results to develop several strategies to enhance EOL care (table 1).

Conclusion

Quality EOL care is a crucial, although often overlooked aspect of care in the hospital setting. In this qualitative study, frontline nurses and PFAs identified five important issues to address to improve EOL care: communication among the key stakeholders, assessment and management of symptoms, engagement of the palliative care team, engagement of the spiritual care team and addressing ongoing tests and interventions at the EOL. These data informed the development and implementation of several strategies to enhance EOL care practices on the GIM wards at our institution, including a comprehensive EOL resource on the hospital’s intranet, at-a-glance EOL medication summaries, and infographics highlighting the roles of palliative and spiritual care. These and other strategies derived from this study may also be of interest to other institutions seeking to optimise the EOL experience for patients and their loved ones.

Data availability statement

Data are available upon reasonable request.