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Abstract
Objectives Previous research has indicated that staff in aged residential care (ARC) may be unprepared for their role in palliative care provision. The need for palliative care knowledge among ARC staff has been characterised as ‘pervasive’. Determining the palliative care education, communication and support needs of ARC clinical care staff is, therefore, of critical importance to the delivery of quality healthcare in this setting.
Methods A survey of clinical staff (n=431) in 52 ARC facilities in 1 urban district health board was conducted, using a paper-based questionnaire. Instruments included the 3-item Experiences with End of Life scale, developed measures of communication and support (13 items), support accessibility (12 items), and palliative care education (19 items).
Results Only 199 (46.2%) of staff participants reported undertaking palliative care education. Nurses were more likely to have engaged in palliative care education in comparison with healthcare assistants (HCAs) (χ2(1, N=387)=18.10, p=0.00). Participants (n=347) who wanted further education preferred an interactive, hands-on applied education (13.9%) in comparison to short topic-specific sessions/seminars (6.5%) or lecture-based courses (7.7%).
Conclusions The study reveals an ongoing need for staff palliative care education. Results suggest the development of an integrated model of care which draws on both hospice and ARC staff expertise.
- Education and training
- Nursing Home care
- Quality of life
- Communication
- Terminal care
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Introduction
As populations age, increasing numbers of people are spending the last months or years of their lives in aged residential care (ARC) facilities with chronic and progressive conditions.1 A significant proportion of these residents require a palliative approach to care.2 A palliative approach focuses on the improvement in quality of life for residents and includes symptom control, maintaining dignity and comfort for the older person, and acknowledgement of the needs of family members.3 However, there is mounting evidence that palliative care delivery in an ARC may be suboptimal.4 A number of international studies have examined ARC staff experiences and needs in providing care to residents with palliative care needs,5 and all report shortfalls in clinical staff training, and significant gaps in knowledge of palliative care, including knowledge of the communication skills required to have end-of-life discussions.6 Effective communication is a key component of both staff palliative care training7 and family understanding.8 Previous international research examining avoidable hospitalisations among ARC residents has concluded that insufficient communication between health professionals, residential care staff and residents and their families represents a key contributory factor.9 Similar findings have been reported in New Zealand,10 the setting for the study reported in this paper.
The New Zealand context
The ARC sector in New Zealand faces the same challenges as those reported internationally. In recent decades there has been a shift from not-for-profit, single-site ARC providers to large privately owned facilities.4 This shift has contributed to an ethnically diverse and largely female workforce.11 Work conditions are characterised by low wages, increasing workload and low staffing levels.11 As cost-cutting measures within the sector increase, so do the demands of an ageing population.
New Zealand has high rates of ARC use.12 An estimated 28 000 people over the age of 65 years live in ARC facilities.13 Of these, one-third are over the age of 85 years.14 As in other high-income countries, a great many of these people will enter ARC facilities presenting with multiple comorbidities5 and often at a later stage of illness, thereby demanding a higher level of skill from staff .15 ARC mortality in New Zealand is high.12 A prospective follow-up study of 6828 ARC residents in 152 facilities reported that 861 residents (12.6%) had died within 6 months of ARC entry.16 Indeed, ARC facilities in New Zealand have been characterised as ‘de facto hospices’, in contrast with their previous role as rehabilitation centres.6
In recognition of the important role played by ARC in end-of-life care nationally, educational initiatives have been implemented (eg, Fundamentals of Palliative Care),17 and integrated end-of-life care pathways have been trialled (eg, Liverpool Care Pathway).18 However, despite these interventions, ARC staff may still be unprepared for their role in palliative and end-of-life care provision.4 For example, they feel ill-equipped to undertake Advance Care Planning (ACP),19 ,20 a process of discussion and shared planning for future healthcare that assists the individual to identify their personal beliefs and values and incorporate them into plans for their future healthcare.19 There is also evidence that healthcare assistants (HCAs) feel inadequately supported in coping with the multiple bereavement experiences they have to undergo when residents die.21 Research by Fryer et al21 further identified that HCAs (who often have English as a second language)22 felt inadequately equipped to answer residents’ questions related to death and dying. Optimising the palliative care knowledge and skills of ARC staff is therefore of critical importance to delivering quality healthcare in this setting.23 To achieve optimum palliative care delivery, it is first necessary to create a baseline understanding of the level of palliative care education and support needs among all ARC clinical staff.
Definitions in this paper
Palliative care is defined as: ‘care for people of all ages with a life-limiting condition.’24
End of life (EOL), according to the Gold Standards Framework, Prognostic Indicator Guidance refers to patients expected to die within the next 11 months.25
ARC refers to ‘care amenities for people who require ongoing assistance with activities of daily living’ (ref. 3, p. 417). In New Zealand, ARC facilities include rest homes, private hospitals, dementia care and psychogeriatrics hospitals. The designation is by type and level of care provided. For example, private hospitals deliver 24-hour nursing/medical care, while rest homes provide a lower level or social care but not 24-hour nursing/medical services.6
Methods
The study aimed to recruit participants from all 68 ARC facilities within one district health board (DHB). The DHB was selected because: (1) they have a higher than average percentage of their population dying in hospital (∼50%),1 (2) they are the largest DHB in New Zealand (in terms of budget) and (3) they have the largest number of ARC facilities of the three DHBs covering the urban centre.12 The DHB serves 468 000 people overall and 27% of that number lives in ARC. Fifty-two (76%) of the ARC facilities participated in this study. The participating facilities did not differ significantly (p>0.05) from non-participating facilities in either size (small, under 70 beds; or large, 70 or more beds) or type (for profit, not for profit). The survey was conducted between November 2012 and February 2013.
Sample: A total of 431 clinical staff members from 52 ARC facilities were recruited. We intended to capture the most complete dataset possible, knowing from comparable international studies26 ,27 that high response rates are often difficult to obtain in the aged care sector. The number of clinical staff working across the 52 facilities as reported by the facility managers totalled 1280. One thousand paper-based questionnaires were distributed and 431 returned (43.1%).
Targeted emails by the facility managers announced the survey to clinical staff. A research assistant visited each of the selected facilities (3 facilities/week), to recruit staff participants over a 4-month period. Participation involved completion of a paper-based anonymous questionnaire. Inclusion and exclusion criteria consisted of the following: all clinical-care staff members (eg, (general practitioners) GPs, registered nurses (RNs), enrolled nurses (ENs), HCAs) who had been involved in the direct care of a resident from all shifts (day, evening and night) were eligible. Staff involved in non-direct care roles (eg, administration, domestic staff, maintenance, chaplain), were excluded.
Data collection instrument: The survey contents were adapted from a questionnaire of palliative care education needs, administered to medical and nursing staff in one acute hospital in New Zealand.28 Palliative care issues covered were informed by a systematic review of the literature29 and included: palliative care education (amount, type, format) experience in palliative care delivery, palliative care communication, support and service accessibility. Palliative care experience measurement used the three-item Experiences with End-of-Life Care scale.30 Palliative care communication and support were measured via 13 questions (1 ‘strongly disagree’ to 5 ‘strongly agree’) rating the perceived supportiveness of the work environment for the delivery of palliative care. The items were combined into a scale with higher scores indicating greater supportiveness (range 13–65). Perceived accessibility of 12 palliative care services was rated on a scale from 1 ‘inadequate’ to 10 ‘adequate.’ The combined items created a scale of service accessibility (range 12–120). Other included scales reported in a previous publication31 included the Brief Resilience Scale (BRS)32 and the Burnout Measure—Short Form (BM-Short Form).33
Reliability and validity: All scales included in the questionnaire (BRS,29 ,32 BM-Short Form,31 Experience with End-of-Life Scale, Accessibility and Palliative Care Environment) recorded reliability coefficients between 0.67 and 0.93 indicating adequate internal consistency. Discriminant validity was established by correlating the measures with the Responding Desirably 16.34 Results of these analyses are presented elsewhere.31
Analysis: Quantitative data were coded into SPSS V.20. Responses to closed-ended survey questions are reported as descriptive (frequencies, mean, SD) and inferential statistics, appropriate to the level of measurement (χ2, Mann Whitney U test, t-test, ANOVA (analysis of variance)). Responses represent the results from all clinical staff participants. Selected comparisons of responses between nurses and HCAs (the two largest sample groups) follow these overall responses. Given the diversity of roles and scope of practice between these two groups it was important to assess differences in terms of learning needs and palliative approach capabilities.
Results
Demographic overview
Staff participants were most often female (87.5%) worked as HCAs (60.6%), and reported English as a second language (72.6%). HCAs predominantly listed Pacific (48%) or ‘Other’ (42.2%) (eg, Filipino, Indian and Chinese) as their ethnic identification, while nurses (RN, EN, Charge Nurse/Senior Nurse) primarily reported ‘Other’ (61.5%) (eg, Filipino, Indian, Chinese and Asian unspecified). One hundred and nine participants (25.3%) reported a Bachelor's degree or higher, while 64 (14.8%) reported a Certificate as the educational qualification responsible for their employment in their current position. Participants most frequently reported (29%) 4–10 years' experience in ARC (table 1).
Demographic characteristics
End-of-life care experience
The proportion of residents estimated to be in their last 12 months of life was most often reported (23.9%) to range between 1% and 25%. Participants, regardless of role, most frequently reported (25.3%) that between 51% and 75% of their time was spent caring for residents who were in their last 12 months of life. The amount of time did not differ significantly for nurses or HCAs (p>0.05). In terms of clinical experience, participants most frequently reported (43%) observing EOL care more than three times in the past year. Of this number, nurses were more likely to report having observed EOL care more than three times in comparison with HCAs (χ2(2, N=363)=28.04, p=0.000). One hundred and thirty-nine participants (32.3%), regardless of role, had delivered bad news more than three times in the past year (table 2). Nurses were more likely to have recorded this response in comparison with HCAs (χ2(2, N=364)=44.18, p=0.000).
Palliative care delivery (frequency and per cent of responses)
Palliative care education
Only 199 (46.2%) of all participants reported undertaking palliative care education courses (table 3). Nurses were more likely to have engaged in palliative care education in comparison with HCAs (χ2(1, N=387)=18.10, p=0.00). Participants who had undertaken palliative care education most frequently reported that the courses lasted for durations of 1 day or less (19.3%) and were most often delivered by the local hospice (13%).
Palliative care education
Willingness to engage in further education varied between nurses and HCAs with nurses more likely to desire further palliative care education in comparison with HCAs (χ2(1, N=369)=5.89, p=0.015). Participants (n=347) who indicated willingness to engage in further education most frequently preferred an interactive, hands-on applied education (13.9%) in comparison with short topic-specific sessions/seminars (6.5%) or lecture-based courses (7.7%). HCAs were more likely to prefer this method of delivery in comparison with nurses who preferred lecture-based courses (χ2(2, N=108)=10.01, p=0.007).
Palliative care support accessibility
Staff members reported their frequency of access to palliative care supports. Of the 232 responses, the most frequently accessed support was education in the care of patients and families at the end of life (15.8%), followed by specialist knowledge and support through hospice services (14.9%) (figure 1). Respondents also rated the perceived accessibility of 10 support services. Ratings of accessibility are presented for the two largest groups (nurses and HCAs) (figure 2). According to Mann Whitney U test analyses, nurses and HCAs differed significantly in regards to accessibility scores for four services: cultural EOL education, bereavement courses, hospice and GP support. HCAs reported greater accessibility to cultural education (Z=−2.32, p=0.020, r=−0.12) and bereavement courses (Z=−2.38, p=0.017, r=−0.12). Nurses perceived greater accessibility to hospice (Z=−3.17, p=0.001, r=−0.17) and GP support (Z=−3.17, p=0.002, r=−0.20).
Palliative care support most frequently used (n=232).
Perceived accessibility of palliative care support services for nurses and healthcare assistants (HCAs) (mean scores).
Turning to the summative scale scores of support service accessibility, there was no significant difference in perceived accessibility between nurses and HCAs (p>0.05). However, there was a significant difference in perceived accessibility based on having engaged in palliative care education (t(179)=3.29, p=0.001). Staff (irrespective of role) who reported palliative care education perceived greater accessibility to palliative care supports (x̄=75.58, SD=26.47) in comparison with staff with no palliative care education (x̄=61.06, SD=28.52).
The ARC environment: fostering palliative care communication and supports
The majority of participants reported confidence that they were part of a team that could care for the needs of EOL residents (73.5%). However, less than half the participants (44.1%) reported that they were able to discuss death and dying with residents (44.1%). Slightly more participants (53.1%) were able to discuss death and dying with relatives or carers (53.1%). An analysis of the responses from nurses and HCAs, revealed a significant relationship between role (nurse/HCA) and confidence in discussing death or dying with the resident (χ2(2, N=356)=30.14, p=0.000) or with relatives (χ2(2, N=352)=26.75, p=0.000). Nurses were more likely to report agreement with their ability to discuss death or dying with both residents and relatives in comparison with HCAs. There was also a significant difference in difficulty in recognising symptoms in a dying resident with more HCAs agreeing with this statement in comparison with nurses (χ2(2, N=356)=23.88, p=0.000) (table 4).
Nurse and healthcare assistant (HCA) palliative care communication, education and support (n=394) frequency and per cent ()
Turning to intrastaff communication, 198 (46%) of all participants agreed with the statement that ‘work was complicated by the opinions of coworkers about the care of residents with palliative care needs.’ Of the remainder, 120 (27.8%) disagreed and 76 (17.6%) neither agreed nor disagreed. Significant differences existed between nurses and HCAs in relation to this point, with more HCAs agreeing with this statement in comparison with nurses (χ2(2, N=363)=8.19, p=0.017). There was also a significant difference in regard to the referral of resident questions to the GP or manager. HCAs more often indicated agreement with this statement than did nurses (χ2(2, N=355)=49.39, p=0.000). Among all the staff, opinion was divided with regard to adequate time available to spend with residents: 175 (40.6%) agreed while 145 (33.6%) disagreed. The remainder (19%) were undecided. There was no significant difference in level of agreement between nurses and HCAs for this item or for the items related to palliative care supports or education access (p>0.05; table 4).
There was a significant difference in scale score for perceived supportiveness of the environment based on whether or not the participant had reported engaging in any palliative care education (t(288)=2.82, p=0.005). Staff who reported participation in palliative care education recorded a higher mean scale score (x̄=47.27, SD=8.06) in comparison with staff with no palliative care education (x̄=44.94, SD=6.28). In other words, staff with palliative care education perceived a more supportive palliative care environment in comparison with those without palliative care education. There was no significant difference in perceived supportiveness based on role (p>0.05).
Previous experience in observing EOL care also impacted on perceptions of the supportiveness of work environment for palliative care delivery. A one-way ANOVA demonstrated that the effect of experience was significant, F(2289)=3.27, p=0.039. A Tukey post hoc test revealed that perceptions differed significantly for those participants who had never observed EOL care (x̄=43.19±6.8 min, p=0.04) compared with those who had done so more than three times (47.06±7.0 min).i Thus, experience in EOL care (EOL observed >3 times) led to increased perceptions of a work environment facilitative of palliative care communication and delivery.
Recommendations
Overall, staff (irrespective of role) most often (38.1%) rated the care of residents who had died in the facility as ‘very good’ (n=164). This rating also did not vary significantly between nurses and HCAs (p>0.05), yet, all participants were aware of the constraints of the ARC environment. Among the 204 responses and 18 topics suggested by all respondents, the three most frequently reported areas for improvement in resident care were the delivery of basic cares (11.8%), information access/communication (10.2%) and psychosocial support for the resident (8.9%). Nurses and HCAs demonstrated no significant differences in the ranking of these three areas for improvement (p>0.05) (table 2).
Discussion
For more than a decade, researchers have documented the challenges and barriers to providing a palliative approach to older people in ARC.3 ,6 ,16 ,23 What is required now are actions that address these challenges. Internationally, education has been seen as the most effective way of tackling deficiencies in palliative care provision in this setting.3 ,23 Yet the translation of educational interventions to the real-life setting of ARC remains a major challenge.35 As the present study indicates, while the majority of participants report having access, less than half report undertaking any palliative care education. Moreover, HCAs who represent the largest proportion of the workforce, were less likely than nurses to want further palliative care education. As research on the negative impact of burnout on education uptake has demonstrated, one reason for the failure of some of these educational interventions to promote sustainable change has been a lack of consideration of organisational factors.32These factors (time pressures, low staffing levels) create barriers to the uptake and application of new knowledge.35 The method of education delivery may also contribute to the problem. Results of the present study indicate that among HCAs (the staff with the most resident contact),22 the preferred method of education would use hands-on applied techniques. A new model of education delivery required is that both addresses the psychological stressors inherent in the ARC and facilitates the application of new learning—a vital component of sustained learning transfer into practice.
Rather than a didactic approach (most often reported as involving short courses through hospice), a new collaborative model is required. Drawing on models such as the Gold Standards Framework in Care Homes (GFSCH)36 in the UK, and the residential aged care integration programme (RACIP)37 study (involving gerontology ARC outreach) in New Zealand, as well as results from the present study, the new model includes clinical coaching, and role modelling of both elements are shown to be successful in sustaining knowledge transfer.38 Staff in the current study indicated difficulty identifying when a palliative approach should be initiated. Clinical coaching provided by a specialist palliative care nurse from hospice may provide guidance in identifying palliative care needs in residents based on evidence-based indicators of end-stage disease—this would include non-malignant diagnoses such dementia, congestive heart failure, chronic obstructive pulmonary disease and end-stage renal disease.
In the present study, less than half the participants were able to discuss death or dying with residents. Role modelling of ACP conversations by a palliative care nurse specialist could include discussion of goals of care with residents or their representatives. One contributory factor to the increase in acute hospital admission is the limited uptake of ACP within ARC facilities.39 However, ARC survey results by Silvester et al20 found limited staff experience of ACP, as well as differences between self-reported comfort, and levels of knowledge and confidence to deliver ACP-related activities. Increased understanding by ARC staff on how to have such discussions may lead some residents or their delegated representatives to opt to focus on the quality of life and symptom management rather than hospitalisation.40
Underpinning any new model is the development of trust involving a mutual exchange of knowledge between hospice and ARC staff. It is apparent that aged care staff have a good understanding of the needs of older persons (overall EOL care quality was rated as ‘very good’). Yet ARC staff still lack palliative care knowledge and skills. In a similar manner, hospice nurses may draw on the experience of aged care staff in dealing with the complex needs of older residents. Older people are more likely than younger people to die from cardiovascular diseases, stroke, some cancers (eg, prostate cancer) and neurological conditions (eg, Parkinson's disease and dementias).5 These conditions typically have a very different pattern of functional decline than cancer,41 the disease for which palliative care models were first developed.42 Drawing on both sets of expertise will facilitate context-appropriate learning and further the goal of quality palliative care delivery in ARC.
As in all research, some limitations must be noted. As a purposive sample, survey respondents were non-randomised and non-uniform across the included facilities. Information regarding minimum hours of work was not recorded, although the majority of participants reported more than 1 year experience in ARC. While GP were eligible, none chose to participate in the study. The inclusion of GP perceptions in future studies will provide a broader understanding of the palliative care education and support needs within ARC. Finally, this study was conducted within one urban DHB which may limit the generalisability of its findings.
Conclusion
Providing palliative care education to staff is a necessary, but not sufficient, condition to improve the care of residents. A new model of palliative care education including the elements described above is required. Improved integration between specialist palliative care services and the ARC facilities should aid both the development of staff ‘in-house’ expertise in palliative care and support the delivery of quality care to residents with palliative care needs.
Acknowledgments
The authors wish to thank all staff participants as well as the ARC facility administrative personnel for their roles in the recruitment of participants. They also wish to acknowledge the ARC managers and CEOs who supported this project.
References
Footnotes
Contributors All authors (RF, SF, MB, JR and MG) were involved in the conception, design and implementation, data analysis and interpretation and drafting of the paper. All authors were involved in the review and approval of the final article for publication.
Funding The study was funded by the University of Auckland Faculty Research Development Fund (project 3702047).
Competing interests None declared.
Ethics approval Ethics approval was obtained from the University of Auckland Human Participants Ethics Committee (ref # 8742).
Provenance and peer review Not commissioned; externally peer reviewed.
Data sharing statement Access to the original dataset is available to fellow researchers on written request postpublication, and with acknowledgement of source.
↵i Those participants who had observed EOL care one to three times did not differ significantly from those who had never observed EOL care (p=0.230), or had done so over three times (p=0.335).