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Improving specialist palliative care in residential care for older people: a checklist to guide practice
  1. Liz Forbat1,2,
  2. Michael Chapman3,
  3. Clare Lovell1,
  4. Wai-Man Liu4 and
  5. Nikki Johnston1
  1. 1 Calvary Public Hospital, Canberra, Australia
  2. 2 Australian Catholic University, Canberra, Australia
  3. 3 Canberra Hospital, Canberra, Australia
  4. 4 Australian National University, Canberra, Australia
  1. Correspondence to Professor Liz Forbat, Australian Catholic University, Antill Street, Watson 2602, Canberra; elizabeth.forbat{at}acu.edu.au

Abstract

Objectives Palliative care needs rounds are triage meetings that have been introduced in residential care for older adults to help identify and prioritise care for people most at risk for unplanned dying with inadequately controlled symptoms. This study sought to generate an evidence-based checklist in order to support specialist palliative care clinicians integrate care in residential nursing homes for older people.

Methods A grounded theory ethnographic study, involving non-participant observation and qualitative interviews. The study was conducted at four residential facilities for older people in one city. Observations and recordings of 15 meetings were made, and complimented by 13 interviews with staff attending the needs rounds.

Results The palliative care needs round checklist is presented, alongside rich description of how needs rounds are conducted. Extracts from interviews with needs rounds participants illustrate the choice of items within the checklist and their importance in supporting the evolution towards efficient and effective high-quality specialist palliative care input to the care of older people living in residential care.

Conclusions The checklist can be used to support the integration of specialist palliative care into residential care to drive up quality care, provide staff with focused case-based education, maximise planning and reduce symptom burden for people at end of life.

  • palliative care
  • nursing homes
  • checklist
  • ethnography
  • grounded theory
  • triage.

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Introduction

Residential care for older people increasingly provides support to those nearing end of life.1 Consequently, the provision of primary palliative care is important to ensure that residents’ care and support needs are met. While the need for primary palliative care in residential homes is well established, determining an accepted model to provide specialist care that enables people to live well and die in their preferred place remains elusive.2 3

In areas of significant clinical need, care practice often focuses on identifying and prioritising those who have the greatest need, adopting case-finding models4 or stepped-care models.5 ‘Palliative care needs rounds’ (hereafter referred to as needs rounds) are a proven mechanism for triaging residents who have palliative care needs in nursing homes.6 7 Needs rounds are monthly clinical meetings that are conducted at the care facility that integrate a specialist palliative care perspective into nursing home care. Needs rounds have been successfully used in recent work to drive up the quality of care, reducing length of stay in acute care facilities and improving residents being able to die in their preferred location.6 Needs rounds impacted staff skills and knowledge that enabled them to communicate better with residents and families and normalised death and dying.7 To facilitate greater clarity regarding what needs rounds involve, and therefore how to replicate the positive effects reported, this study sought to document and describe the process and content of needs rounds.

Aims

This study aimed to:

  • describe the activities, thought processes and subsequent staff activities that are generated within and from needs rounds

  • develop a model that explains what occurs in needs rounds, and from this distil a checklist that can be used in routine practice

  • finalise the checklist drawing on feedback from staff in the collaborating nursing homes.

Methods

Design

A grounded theory ethnography was conducted, collecting data via observations and interviews. Theory is produced through an inductive process of iterative rounds of data collection, coding, analysis and theorising. Data collection ceases when the analysis indicates that categories/themes are fully explored and there is no room for further refinement to the emerging theory. This study drew on Charmaz’s adaptations to the grounded theory approach.8

Ethnography has its roots in anthropology, as a method to examine cultural artefacts, including routine practice in clinical settings. Ethnography seeks to document webs of meaning and to focus on ‘emic’ data. That is, the ideas, language and practices that are of importance within that setting (as opposed to etic data that focuses on the theorists’ concerns). Field notes (‘concrete descriptions of social processes and their context’9) and recordings are core data collection methods, which are used to generate a thick description of the phenomena under study.10

Data collection

Data collection involved open non-participant observation, detailed written descriptions and audio-recorded structured interviews. Observations were conducted in 15 needs rounds. Detailed handwritten field notes were taken during needs rounds, alongside audio-recordings of the meetings. Field-notes sought to provide rich descriptions of the content, process and feel of the needs rounds. Subsequently, interviews were conducted with participants in the needs rounds to gain a rounded view of how the meetings were understood. Bespoke interview questions were generated by the researchers, based on initial data analysis, to understand in greater detail what occurred in the meeting and to generate feedback on the needs rounds and the emergent checklist.

Data were collected between July and October 2016 by two female researchers including an experienced researcher with a PhD in qualitative methods and a novice social work student researcher, who had received tailored training on ethnography and interviewing for this study. Neither researcher had relationships with the participants prior to data collection. Participant checking of transcripts was not conducted, but feedback was sought in order to produce a final useable list of core ingredients to the needs rounds. Data were coded by the two data collectors.

Setting, sample and recruitment

Data were collected in four residential care facilities in Canberra, Australia, where needs rounds are routinely conducted. Interviewees were approached face to face for the observations and via email for interviews. The interview sample was derived from participants at the needs rounds. Theoretical sampling was adopted, whereby analysis of the data informed subsequent sampling decisions.8 Initial sampling sought a purposively diverse sample9 to include care managers and registered nurses who routinely attend needs rounds, alongside the palliative care nurse practitioner who chairs the needs rounds. Subsequent rounds of data collection sought interviews with nursing assistants (called ‘carers’ at these facilities) and staff who had attended only a small number of needs rounds. Interviews lasted between 15–47 min; needs rounds lasted an hour. No staff declined participation.

The collection of data ceased once categories and commonalities across the data corpus had reached theoretical sufficiency.9 11 Sample sizes were informed by the principles of ethnography indicating that smaller data collection facilitates the in-depth study of the topic, alongside the principles of theoretical sufficiency, which indicate that a homogenous sample of 12 usually allows for meaningful analysis and claims.12 13 The sample size is cognisant of the analytic approach that has the capacity and sophistication to examine this breadth of data.

Analysis

Analysis proceeded via constant comparison of the data, following the grounded theory tradition. This analytic approach enabled the identification of key components and common elements of needs rounds. These analyses fed into the generation of a draft checklist of activities and actions, which was refined through further observations and interviews.

Data were coded by two researchers using Nvivo (V.10). The coding tree had major themes of planning for needs rounds, meeting contents and outcomes, with minor themes such as: observer impact, referrals and facility policy changes.

Production of the checklist

The checklist was informed by their use and development in other fields.14 They are used to improve mortality and morbidity outcomes across clinical settings14 and operate as tools to help identify tasks and elicit improvement in addressing complex challenges and optimising the safety and quality of care for patients.15

Notably, the length, structure and presentation were informed by the notion of having short checklists (5–9 points) and documenting only essential tasks that are otherwise not necessarily performed. Consequently, identifying (for example) the resident’s name and age are not included in the checklist and are considered redundant to include through being indispensable.

Developing the tool to be adaptable to different contexts (and not specific to the country of its development) meant that transferability was a conscious component of its design.16

Ethics

Ethical approval for the study was provided by Calvary Health Care public hospital HREC and Australian Catholic University. All participants for observations and interviews provided written consent.

Findings

Fifteen needs rounds were observed, across all participating sites. At time of data collection, needs rounds had been running at facilities for approximately two years. Ninety-seven residents were discussed, including reviews and new referrals.Table 1indicates the range of reviews and new residents discussed and the staff a ttending needs rounds, illustrating the diversity in numbers and roles across facilities. Needs rounds were chaired by a palliative care nurse practitioner. The term ‘carer’ in the text and tables below refers to a nursing assistant role. Table 2 illustrates the interviewees.

Table 1

Needs rounds observed

Table 2

Interviewees

Key components of preparation and initiation

Needs rounds run monthly for 60 min. Meetings were found to work best when staff are sent a reminder a week in advance.

Two facilities ran needs rounds with a computer available to link with electronic patient notes in order to (A) check notes (such as medication charts or bowel movement records) and (B) record decisions made in the needs rounds.

Interview data confirmed these facets, observed in the ethnographic observations, as important to the running of the needs rounds:

We actually typed it all up as we were going along and actually put it on the care plan as we were going along so that everybody has instant access to it rather than ‘I promise I’ll write this up later’. You can quickly see what medicines they are on, on the computer system, look at their medication charts. (Interview, RN, site 2)

The checklist

The checklist is shown in figure 1.

Figure 1

Palliative care needs round checklist

Triggers

The checklist opens with triggers to inform which residents to discuss; staff learn to identify the difference between deterioration and dying:

Facility staff have put the prognostic indicators at the start of a folder in the clinical area to help staff think about which residents to refer. (Ethnographic field notes, site 2, observation 5).

Residents discussed at needs rounds should meet at least one of the criteria (and often meet multiple of them) but are not required to have specialist palliative care needs.

Reviews

Following the first needs round, reviews take place of residents who had been previously discussed to identify actions that have not yet been completed and to provide feedback and reassurance to staff regarding successes. For residents referred to the specialist palliative care team for direct work, the review also provides an opportunity to update facility staff. This feedback provides a positive feedback loop of encouragement and reinforcement of staff actions within the facility.

New referrals

Discussion of new referrals begins with staff outlining core diagnoses and comorbidities, alongside current pharmacological and non-pharmacological treatments. Identifying key people involved in the resident’s life outside the facility means it is easier to ascertain if there are conflicts around treatment and care within the wider system. Specifically, ascertaining who the legal decision maker is for each resident should be prioritised. Facility staff then indicate the specific concerns that prompted them to discuss the resident at the needs round.

Current medications are reviewed to determine if changes are required. Reduction in polypharmacy and ensuring timely access to medications were common components. Planning for deterioration was a common theme; the following data come from discussion of a resident with dementia and seizures:

We are going to need some planning for when he can’t take his medicine. Wait until I come and see him, but he’ll need some midazolam and clonazepam drops for end of life, for when he’s not able to swallow. (Ethnographic field notes, site 4, observation 15, specialist palliative care nurse practitioner)

Having elicited a full clinical picture, the palliative care clinician engages in case-based education, linking to one or more of the symptoms or concerns raised.

Education

Education was critical to the success of the needs rounds. Education was integrated into all observed needs rounds and covered a number of topics, many of which were repeated such as management of constipation ,a dyspnoea and pain assessment. Repetition of topics reflected new staff attending needs rounds and the reinforcement of previous learning. Table 3 illustrates the range of topics attended to.

Table 3

Core education topics

Education was provided informally, prompted by and drawing on clinical cases within needs rounds, for example, sketches of bowels were used to teach anatomy and physiology related to resident care needs. Information was presented drawing on a Socratic approach, gently asking questions of the staff to elicit their current understandings within a psychologically safe environment.17 The explicit aim of the education was to increase capacity of facility staff to require involvement from specialist palliative care only when needs are complex:

Good on you for picking that up [that the resident was actively dying]. And what is really helpful if you are able to do that, if you have that knowledge, that means you don’t need me to do that, which is fantastic because you’re doing that yourself. (Recorded needs round, site 2, observation 5, specialist palliative care nurse practitioner)

Part of the education also involved the palliative care clinician modelling how to introduce specialist palliative care to families, offering some examples of the language and approach she would take.

One staff member reflected on her main learning:

It was the terminology and learning the language to speak to the doctors, and also just [the nurse practitioner] mentoring and educating us on the disease management […] and identifying what we need to prepare ourselves for and how to go about doing that. (Interview, RN, site 1)

Actions

A number of actions arise from needs round, all relating to the core outcomes of reducing preventable hospitalisations, increasing the number of people dying in their preferred place and improving staff confidence in discussing and providing palliative care.

Medication review. This included removing, replacing and adding new medications. Discussion of the residents’ biopsychosocial status elicited accounts of symptoms or unwanted drug side effects and would often prompt changes in medication. Anticipatory medicines were also prescribed in collaboration with the GP.

Organise a surrogate decision maker. The appointment of surrogate decision makers is an international gold standard,18 so for individuals without such a surrogate needs rounds provided a structure to identify this action.

Develop an advance care plan (ACP). The lack of an ACP is one of the triggers for discussion at a needs round. ACPs provide an opportunity to discuss and document goals of care,19 including preferences around hospital transfers.20

Organise a case conference. Case conferences were often triggered when facility staff identified conflicting views between families and the facility regarding appropriate goals of care, or where there was no ACP. Case conferences were prompted for 56% of newly discussed residents. Case conferences were flagged as opportunities to discuss residents’ wishes about care preferences, including hospital transfers:

We can meet with the families and we can get that plan in place and I think it’s really, really important, really decreases the amount of time people spend in hospital. For the elderly, it’s very traumatic to be taken to hospital when you’re unwell […] and we can manage it here, manage their pain, do the symptom management. (Interview, manager, site 1)

Case conferences were initially chaired by the specialist from palliative care, but over time facility staff recognised that they developed the skills and confidence to run these interactions:

The case conference was easier than we thought. (Ethnographic field notes, team leader, site 1, observation 1)

External referrals are also discussed to identify other organisations or professional groups that could offer input, such as dementia support, wound management or mental health teams.

Referrals to specialist palliative care. Not all residents who are discussed at needs rounds required a referral for direct clinical work from specialist palliative care. However, at times, such referrals were necessary, due to the resident’s complex symptom burden or staff confidence.

Benefits of the checklist and needs rounds

Staff reflected on what they felt the benefits of the approach had been and consequently what benefit checklist users might anticipate:

I don’t think we’ve had a bad death since we started the needs rounds. (Interview, manager, site 1)

The process of considering which residents to discuss at needs rounds was itself an intervention:

I think the [referral] criteria helps us because it makes you start thinking before the needs rounds… […] it unified us all working together on the same thing. (Interview, RN, site 1)

Advance planning for residents was a common feature of staff feedback on needs rounds:

[The most important part of needs rounds] is identifying people who are getting close to dying and putting a plan in place and talking to the family […] the resident has a comfortable death, or is as comfortable as possible. (Interview, team leader, site 4)

The integration of education into needs rounds resulted, over time, in less reliance on the specialist and more knowledge, skill and confidence among facility nurses and nursing assistants:

[The model of using needs rounds is] about how many [staff in residential care] can do a great job. Spreading it so that the knowledge and the skill spread. (Interview, specialist palliative care clinician)

The nurse practitioner was identified as a suitable person to deliver the intervention, bringing specialist palliative care expertise alongside an additional advantage of the ability to prescribe:

There’s a lot more involved beside from just the medication aspect; it’s about supporting the family, supporting the staff, having literature available and the doctors don’t provide that […] it takes a lot of onus off the doctors because the [nurse practitioner] can prescribe. (Interview team leader/RN, site 3)

Discussion

Adopting needs rounds offers an equitable method of triaging those most at risk of unmet palliative care needs and enhancing the palliative care provided to all residents. Interventions that help prevent unwanted and costly hospital admissions near end of life are a priority.21 Innovations within residential care have had successes in reducing hospitalisation and deaths in acute care.2 22 The checklist developed in this work provides an evidence-based structure to guide specialist palliative care clinicians in supporting residential care staff to look after residents in their final months of life. The simple checklist offers a feasible and sustainable approach to guide monthly meetings and has proven positive results.6 7

Successfully introducing needs rounds to care facilities should be cognisant of implementation science principles, including the potential need to adapt to local context,23 for example, drawing on the Promoting Action on Research Implementation in Health Services (PARiHS) framework,24 since although the checklist and its evidence represent codified knowledge, implementation requires adaptation to local clinical experience.

The implementation benefits may differ across sites, for example, reduced length of stay in hospital may be less important to some services than increasing staff knowledge and consequent staff capacity to care for residents with complex symptoms. Collecting local evidence of impact may act as compelling local knowledge, for example, measuring staff knowledge or work satisfaction.

Limitations

Checklists have been criticised, for their apparent simplicity in not adequately representing complex clinical scenarios.15 Palliative care needs rounds have only been assessed when supported by a specialist palliative care nurse practitioner who also provides clinical care and can prescribe. Running needs rounds both with and without a prescribing clinician requires the palliative care clinician or facility staff to liaise with general practitioners to institute medication changes. Further trials and evaluations would be useful in evidencing the impact of other clinicians (including but not limited to senior registered nurses) to understand the implementation implications of a heterogeneous staff mix.

Conclusions

This easy to use checklist can help improve the quality of life and death for nursing home residents. Adopting the checklist internationally can help revolutionise care. The impacts include cost-effectiveness for the acute sector, improved staff skills and knowledge for the care team and improved resident outcomes including increasing the possibility for people to die in their preferred place.

Acknowledgments

We are thankful to the facility staff who agreed to be observed and interviewed. Thanks also to social work student Sara Smith, who contributed to data collection for the study.

References

Footnotes

  • Contributors LF designed the study, led analysis and drafting the manuscript. LF, NJ, CL, W-ML and MC made substantial contributions to acquiring the data, analysis or interpretation. LF, NJ, CL, W-ML and MC contributed to drafting the work or revising for intellectual content. LF, NJ, CL, W-ML and MC have given final approval of the published version. LF, NJ, CL, W-ML and MC agree to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.

  • Competing interests None declared.

  • Patient consent Staff study only. Standard consent form was used to provide own consent.

  • Ethics approval Calvary HREC, Australia and Australian Catholic University.

  • Provenance and peer review Not commissioned; internally peer reviewed.

  • Data sharing statement Any requests for data sharing should be put in writing to the corresponding author.

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