DOI: 10.1111/ajag.12085
Research Managing expectations: Providing palliative care in aged care facilities Heather Lane and Jennifer Philip Centre for Palliative Care, St Vincent’s Hospital, Melbourne, Victoria, Australia
Aim: To explore the views and experiences of staff from RACFs and community palliative care services (CPCSs) on providing palliative and end-of-life care in RACFs. Method: Qualitative exploratory interviews and focus groups were conducted with staff working in two RACFs and two CPCSs, and, following data saturation, a thematic analysis undertaken. Results: 15 RACF and 15 CPCS staff participated. The overarching theme was of managing expectations in the provision of care. This included low expectations of the care available in RACFs, tensions in addressing complex decision-making and concurrent administrative expectations, and differences between views of RACF and CPCS staff regarding their respective roles. Conclusion: Improved understanding of the needs of RACF staff will improve the care of residents and, in turn, reduce hospitalisations. Key words: aged, hospitalisation, nursing homes, palliative care, residential facilities.
Background More than 166 000 Australians currently live in residential aged care facilities (RACFs) [1]. RACFs have become an increasingly common place for people to die, accounting for approximately 20% of deaths in the USA and UK [2,3] and one-third of deaths in Australia and New Zealand [4]. These figures exclude residents who are transferred to hospital during a final illness and die there. Internationally, it appears that hospitalisation of RACF residents near the end of life is common [5,6]. Limited Australian data are available, although in one metropolitan centre 7.8% of those presenting to emergency departments from RACFs died in hospital [7]. Research into hospitalisation of RACF residents estimates that between 8 and 44% of emergency department presentations are ‘inappropriate’ [8–11]. It has also been suggested that majority of RACF residents dying in hospital could have received their end-of-life care, care provided in the last days of life, in their RACF [12].
Correspondence to: Dr Heather Lane, Centre for Palliative Care, St Vincent’s Hospital. Email: [email protected] 76
Provision of palliative care, with a focus of care on symptom control, and psychosocial and spiritual support for patients with a life-limiting illness and their families, is increasingly recognised as important in RACFs [13,14]. In the last months of life, RACF residents have a symptom burden similar to people with advanced cancer, with many experiencing pain (46–86%) and dyspnoea (48–75%) [15,16]. Palliative care interventions in RACFs improve pain assessment [17] and management [18], increase discussions about end-of-life care [2,17] and reduce hospitalisations [2,19]. Advance care planning programmes in RACFs have also been shown to reduce hospitalisations, suggesting that when goals of care are discussed some residents prefer to avoid hospital transfer [20]. Introduction of end-of-life care pathways in RACFs, instituted to guide care in the last days of life, has been shown to be acceptable and feasible [21]. Barriers exist to the provision of palliative and end-of-life care in RACFs in Australia [22]. Staff working in Australian RACFs report a need for palliative care education [23,24] and improved access to specialist palliative care [24]. To improve understanding of reasons for these barriers, the views and experiences of those providing care to RACF residents, the staff working in RACFs and community palliative care services (CPCS), is required. This project aimed to explore the experiences of staff providing palliative and end-of-life care to residents of RACFs.
Method Consistent with the exploratory nature of the research question, a qualitative methodology using a thematic analysis was adopted. The approach involved semistructured interviews and a focus group with staff from two RACFs and two CPCSs in a major Australian metropolitan centre. Semistructured interviews were most convenient for participants and therefore the main source of data. However, a focus group was arranged at one CPCS. The two CPCSs were chosen as they provided specialist palliative care to a large area, from the inner city to outer suburbs. Both CPCSs provided consultative services to RACFs in their area, although not to the participating RACFs. The two community palliative care services were similar in structure and population served. The two RACFs were chosen to represent a diversity of service model. The service provider for RACF A was a tertiary hospital. In this 30-bed facility, all residents had high Australasian Journal on Ageing, Vol 34 No 2 June 2015, 76–81 © 2013 ACOTA
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care needs (requiring almost complete assistance with activities of daily living) [25]. Staff providing care were predominantly trained nurses and medical cover consisted of regular consultations by general practitioners (GPs), who were also available on call outside working hours. The service provider for RACF B was an independent, not for profit, non-denominational organisation. In this 90-bed facility, residents had both high and low care needs (requiring accommodation and assistance with personal care) [26]. Personal care assistants provided the majority of direct care with nursing supervision. Locum services were relied upon for medical cover outside of working hours. Initially, managers of each of the services were approached. The managers supported the project and made initial introductions to potential participants. Clinical staff from all health-care disciplines were invited to participate. Written informed consent was obtained by the interviewer prior to the interviews. In the RACFs, interviews were conducted with consecutive staff available on the day, over 2 days (RACF B) and 4 days (RACF A). In one CPCS, interviews were conducted with purposively sampled staff whose job roles involved extensive interaction with RACFs. In the other CPCS, a focus group was conducted with the multidisciplinary CPCS team. Interviews and the focus group were conducted at the participant’s place of work. All were conducted by the principal researcher (HL). Sampling continued until saturation of themes was reached. The interview structure followed a broad schedule (Appendix I), with flexibility to explore issues raised by interviewees in greater depth. The focus group and all interviews were recorded, transcribed and subject to a thematic analysis [27,28]. The analysis was reviewed by a second investigator, with points of divergence compared, discussed, and consensus reached, ensuring validation and reduction of bias. This project was approved by the institutional human ethics research committee.
Results Participants Fifteen RACF staff and 15 CPCS staff participated in the study. Interviews were 18–42 minutes in length. Demographic details of the participants are shown in Table 1. The overarching theme to emerge was of managing the expectations of all persons involved in the provision of care. Expectations of the care provided by services and administrative expectations appeared to impede both discussions of goals of care and provision of palliative care in RACFs. Subthemes included limited expectations of the level of care in RACFs, a mismatch in expectations of both care model and the role of community palliative care services between Australasian Journal on Ageing, Vol 34 No 2 June 2015, 76–81 © 2013 ACOTA
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Table 1: Demographics of study participants (number) Interviewee demographic details Sex Male Female Job role Nurse Doctor Allied health professional Personal care assistant
CPCS
RACF
1 14
3 12
11 3 1 0
12 2 0 1
CPCS, community palliative care services; RACF, residential aged care facilities.
RACF and CPCS staff, and tensions in addressing complex decision-making and satisfying organisational administrative expectations. These subthemes are further described below and outlined in Table 2.
Limited expectations: Level of care Interviewees described limited expectations of the level of medical care available to RACF residents. A GP simply visiting the RACF was perceived as good care. GPs often cared for a large number of people in the RACF and had limited time available for individual consultations when they visited. One nurse described the hurried nature of a GP visit as: ‘Rush, rush, rush, I have to go, I have to go’. While staff of RACF A were able to directly contact GPs after hours, RACF B, which relied upon locum doctors, reported at times substantial delays between requesting a locum visit and a consultation occurring. In RACF B, nursing staff also reported many competing demands on their time. Several nurses reported that administrative demands reduced their contact with residents, with one reporting considering returning to work in an acute hospital because she missed direct patient contact. Another nurse reported that it would be difficult to spend an uninterrupted half hour with a dying resident. RACF staff reported that they were unable to manage residents’ care if acute medical management was required because of insufficient resources and expertise. We rang for a locum for a lady on . . . Saturday morning, the locum was not able to get to us till . . . Sunday lunchtime. (RACF nurse) she had the trachy and coughing and keep on suctioning, [but it] doesn’t help, so I call up the ambulance. . . . we cannot cope with it for the whole night here. (RACF nurse) CPCS staff were aware of the time pressures faced by RACF staff and the often limited medical support available. They described these issues also impacting on their ability to provide palliative care, in particular opioid analgesia and as required medications, to RACF residents. 77
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Table 2: Managing expectations: overview of subthemes Limited expectations
Level of care able to be provided in RACF
Mismatched expectations between RACF and CPCS staff
Model of care
Role of CPCS
Tensions between competing expectations
Decision-making and administrative expectations
RACF staff
CPCS staff
Limited medical cover Many competing demands on nursing time Unable to manage acute medical care Acute medical model of care with hospitalisation of unwell residents is the standard approach Close personal relationships with residents means life prolongation is valued Receptive to palliative care ideas Not skilled at discussing goals of care Unsure who to refer to CPCS Did not recognise their own palliative care skills Sought support for decision to move to a palliative approach and reassurance about palliative management Limited discussions of goals of care undertaken Decision-making predominantly occurred at times of acute deterioration in health Day-to-day conversations not seen as contributing to advance care planning
Limited medical cover affects ability to provide palliative care Palliative approach considered applicable to most high-care residents Believe goals of care discussions should be routine for RACF staff View primary role as the management of complex symptoms, not providing care for routine dying Did not appreciate challenges RACF staff found in undertaking goals of care discussions
CPCS, community palliative care services; RACF, residential aged care facilities.
Locums are very reluctant to . . . to give narcotics to someone that they don’t know. (CPCS nurse) Mismatched expectations: Care model In both RACFs, staff indicated that residents were treated according to an acute medical model of care, including hospitalisation of unwell residents. This appeared to be the standard approach to care to be followed unless actively determined otherwise. RACF staff appeared to hold high expectations of the benefits of hospitalisation. Staff in both RACFs reported close relationships with residents in their care. Many RACF staff were saddened when residents died, often having cared for them for years. Such staff viewed the RACF as a home and the residents as ‘family’. As such, they valued life prolongation for RACF residents. One nurse when describing her reason for transferring a sick resident to hospital said, ‘we wanted to save their life’. Once a decision was formally made to change from an acute medical model to a palliative approach to care, shifting the focus of care to symptom management and psychosocial support, RACF staff appeared confident in providing this care. All the RACF nurses interviewed reported caring for the dying was an important part of their job. However, RACF staff did not feel adequately skilled to initiate decisions about changing to a palliative approach to care. They considered this the role of a doctor or specialist service. One experienced nurse described her view of discussions of goals of care as: ‘I believe it should be done by a knowledgeable team of people . . . or one person that really knows what they are doing’. We always explain it to the family that . . . if their mum or their dad is sick, we will send them in the hospital. (RACF nurse) 78
They might be getting better pain relief and everything at the hospital. (RACF nurse) it is very depressful [sic] for me because . . . they are more like my parent or my grandparent . . . If you look after someone everyday and then suddenly . . . they depart it is not that easy. (RACF nurse) after this you know she will have no more pain. . . . You have done your bit and you know they pass away nicely, smoothly. The feeling is good. (RACF nurse) In contrast, staff from CPCSs considered a palliative approach to care applicable to most RACF residents and ideally the standard model of care for many residents. As such they appeared to consider discussions about future care and goals of care as routine for RACF staff. Hospitalisation was viewed as undesirable and unlikely to benefit most RACF residents. Some nursing homes are very good and have a very good palliative approach. Others are still in that mindset of trying to keep people alive. (CPCS nurse)
Mismatched expectations: Role of community palliative care services A mismatch in expectations of the role of CPCSs was apparent, with the RACF staff requesting CPCSs to provide support for the decision to move a particular resident from acute life-prolonging approach to care to a palliative approach, and reassurance that RACF staff were providing appropriate care. Yet, the CPCS saw their role as providing assistance with symptom relief and, more particularly, for those with complex symptoms. RACF staff respected the specialist training and skills of CPCS staff, but were unsure about which residents to refer. Specialist palliative care input was generally only sought when a resident was dying, and had been ‘made palliative’ Australasian Journal on Ageing, Vol 34 No 2 June 2015, 76–81 © 2013 ACOTA
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either by the facility GP or a hospital specialist. RACF staff did not recognise their own palliative care skills, as they saw palliative care as a specialist area. One RACF nurse was surprised by the simplicity of core palliative care provision.
discussions did not appear to contribute to advance care planning. As a result, documentation could override the wishes expressed by residents in conversation with nursing staff.
And usually the thing is, I do notice it is just, keeping the resident as comfortable as possible towards the end journey.
If you see the admission package in aged care, . . . it is a whole thing, so that end of life wishes it is only one page, . . . but it is the crucial page. (RACF nurse)
CPCS staff described their primary role as management of complex symptoms and thus considered many referrals from RACFs to be inappropriate, as the referred residents did not have complex symptoms. CPCS staff suggested that RACF staff should be able to be manage ‘uncomplicated’ deaths. CPCS staff did not understand that the RACF staff lacked confidence in recognising that a palliative approach was appropriate, and undertaking conversations and instituting care commensurate with this recognition. Just because someone’s dying doesn’t mean, necessarily mean, we need to be involved. (CPCS nurse)
Unless you have got the documentation there, you actually can’t do anything else but send them back [to hospital]. (CPCS nurse) But this resident was sent to the hospital because of abnormal actually pathology results . . . [despite] this resident was refusing to go to the hospital. (RACF nurse) CPCS staff were not routinely involved in discussions around goals of care with RACF residents and did not appear to recognise the complexity and challenges facing RACF staff undertaking such discussions.
Discussion Decision-making and administrative expectations When new residents were admitted a large amount of admission paperwork required completion by nursing and medical staff. After the completion of this, there was often little time left to address issues such as advance care planning. RACF and CPCS staff also identified that moving into a RACF was a difficult time for many people, with relatives described as often experiencing guilt during this transition. RACF staff considered this an inappropriate time to start conversations about goals of care with people they had not previously met. However, completion of documentation of resuscitation and hospitalisation preferences was expected soon after admission. One senior nurse recalled a GP describing this challenge: ‘you’ve just newly admitted this resident and then straight away you’ll be asking them, “is this patient for resus or not for resus?” ’ For these reasons, limited discussion about goals of care or resident wishes was undertaken with RACF residents and their families. Although both RACFs had a standard form for documenting residents’ resuscitation and hospitalisation preferences, neither medical nor nursing staff considered themselves skilled in undertaking these discussions. RACF B typically gave this form to the resident or family to fill in, with little discussion about its implications. In RACF A, GPs were responsible for completing the form; however, this was often not completed at admission. Decision-making was described as predominantly occurring at times of crisis, such as when a resident became acutely unwell and an urgent decision was required regarding hospitalisation. At such times, the documentation was often the first reference. Although some nurses reported conversing with residents about their wishes for their future care, these Australasian Journal on Ageing, Vol 34 No 2 June 2015, 76–81 © 2013 ACOTA
This qualitative study has identified a series of dynamics and expectations which impact upon the quality of end-of-life care for RACF residents. Limited expectations of medical care and multiple competing demands on nursing staff were identified as potentially impacting on care. These findings reflect those of other Australian studies which report limited medical cover and heavy workloads for RACF staff resulting in presentations to the emergency department [23] and impacting on end-of-life care [24]. Further to this, our study identified challenges regarding the decision-making processes for residents, and the competing demands of administrative tasks which detract from decision-making. These challenges were identified by staff of both RACFs despite differing staffing demands and medical support. Fundamental differences in expectations of the model of care and the perceived role of CPCSs between RACF and CPCS staff were also identified. Such differences are likely to impact on communication between these services and the provision of palliative care to RACF residents, and contribute to the ongoing frequent hospitalisation of RACF residents near the end of life. The standard model of care for RACF residents is an acute medical model. However, this is combined with a low level of surveillance from medical and nursing staff and a low level of discussion with residents and families about expected disease course and goals of care. Therefore hospitalisation appears an inevitable outcome for many residents. Once given permission to move from an acute life-prolonging stance, RACF staff embraced palliative care concepts and appeared confident in providing end-of-life care. However, RACF staff were not confident in discussing goals of care or effecting a transition to a palliative approach. Without improving the integration of palliative care concepts into aged care, and importantly improving the ability and confidence of RACF staff to discuss these concepts, there is unlikely to be a 79
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meaningful decline in the hospitalisation of residents at the end of life. Programs introducing advance care planning into nursing homes have been shown to reduce hospitalisations, and importantly, to improve the confidence of RACF staff in discussing goals of care [20]. CPCSs perceived that their main role in RACFs was to assist in the management of complicated symptoms, and expressed frustration regarding the referrals from RACFs which did not, in their assessment, require specialist palliative care input as symptoms were not complex. However, symptom management was not a need identified by RACF staff, who instead were referring to seek support and reassurance around the decision to move to a palliative approach. To improve end-of-life care for residents of RACFs, an improved understanding of the needs of staff of RACFs is needed by CPCSs. Assistance with planning goals of care, sharing responsibility for decision-making and education about goals of care discussions are key services that CPCSs could provide to RACFs.
The RACF staff interviewed revealed great compassion for the residents they cared for in, at times, demanding condi80
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tions with limited support. Rather than criticising their management by labelling referrals to other services such as CPCSs or the emergency department as ‘inappropriate’, a focus should be on supporting RACF staff and improving systems to better meet their residents’ needs. In particular, a focus on supportive maintained advance care planning for RACF staff to progress with residents is a valuable role for CPCS, and one not yet fully recognised or embraced. Improved understanding and support of RACF staff is likely to improve the care of residents, reduce hospitalisation rates and improve CPCS satisfaction with their interaction with RACFs.
Acknowledgements I would like to acknowledge the participating community palliative care services and residential aged care facilities for their support and involvement in this study.
Both RACFs routinely documented residents’ resuscitation and hospitalisation preferences. However, it appeared that limited discussion with nursing and medical staff occurred in the completion of these forms. Despite this, these documents were used as a first reference at times of acute medical crisis. The design of the form as a fixed document requiring completion on admission appeared to encourage the view of advance care planning as a one off event focused on medical decisions. This contrasts with the view of advance care planning as an evolving conversation about a person’s priorities, goals and wishes, with allowance for change over time, as is promoted in palliative care [29]. In an evolving model, the conversations nursing staff have with RACF residents regarding their wishes, which arise during the course of usual care, should be seen as contributing to the advance care planning process. This would be in contrast to current practices where such unfolding views can be overridden by documentation completed at admission. This study has limitations. It only included two RACFs and two CPCSs, within one centre. Australian RACFs are diverse, so the viewpoints discussed may not be representative of other RACFs. The RACF staff interviewed were predominantly nurses, with only one health-care assistant participating. Health-care assistants’ views and experiences may be expected to be different from those of nurses as their training differs. In many RACFs, the health-care assistants deliver the majority of direct care and therefore have more contact with residents. Further research of the views of these staff members would be valuable. This project did not seek to explore the experiences and views of RACF residents and their families, another area requiring further investigation. Despite these limitations, we believe that this study uniquely highlights the constraints to the provision of palliative care to residents of RACFs.
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Key Points • Incorporation of advance care planning and palliative care programmes into RACFs improves symptom management, increases discussions of goals of care and reduces hospitalisations. • Limited medical cover and multiple demands on nursing staff time limited the care available to some RACF residents, and tensions exist between addressing complex decision-making and satisfying organisational administrative expectations. • Fundamental differences in expectations of both model of care and the role of CPCS were identified between RACF and CPCS staff. • To improve end-of-life care for residents of aged care facilities, assistance with planning goals of care, sharing responsibility for decision-making and educating staff about goals of care discussions are key services that CPCSs could provide to RACFs.
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Appendix I: Interview Schedule RACF staff Can you think back to the last patient you cared for, who was transferred to hospital: 1 Can you please sketch for me how the events unfolded. 2 What things went well? 3 Were there any difficulties? 4 Were there any things you like to do differently next time? 5 What was the family’s role or involvement? Can you think back to the last patient you cared for, who died in the aged care facility: 6 Can you please sketch for me how the events unfolded. 7 What things went well? 8 Were there any difficulties? 9 Were there any things you like to do differently next time? 10 What was the family’s role or involvement? More generally: 11 What are the positive aspects of transferring someone to the acute hospital from the aged care facility? 12 What are the challenges involved in transferring someone to the acute hospital from the aged care facility? 13 What are the positive aspects of caring for someone who is dying in the aged care facility? 14 What are the challenges of caring for someone who is dying in the aged care facility? 15 What is your understanding of what palliative care means? CPCS staff Can you think back to the last patient you were involved with in a high-level care aged care facility: 1 Can you please sketch for me your involvement? 2 What things went well? 3 Were there any difficulties? 4 Were there any things you like to do differently next time? 5 What was the family’s role or involvement? More generally: 6 What are the positive aspects of providing palliative care input in a high level care aged care facility? 7 What are the challenges in providing palliative care input in a high level care aged care facility? 8 What factors would make you recommend transfer to another facility, such as an inpatient palliative care unit or an acute hospital? Can you think of any examples of this?
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Research Managing expectations: Providing palliative care in aged care facilities Heather Lane and Jennifer Philip Centre for Palliative Care, St Vincent’s Hospital, Melbourne, Victoria, Australia
Aim: To explore the views and experiences of staff from RACFs and community palliative care services (CPCSs) on providing palliative and end-of-life care in RACFs. Method: Qualitative exploratory interviews and focus groups were conducted with staff working in two RACFs and two CPCSs, and, following data saturation, a thematic analysis undertaken. Results: 15 RACF and 15 CPCS staff participated. The overarching theme was of managing expectations in the provision of care. This included low expectations of the care available in RACFs, tensions in addressing complex decision-making and concurrent administrative expectations, and differences between views of RACF and CPCS staff regarding their respective roles. Conclusion: Improved understanding of the needs of RACF staff will improve the care of residents and, in turn, reduce hospitalisations. Key words: aged, hospitalisation, nursing homes, palliative care, residential facilities.
Background More than 166 000 Australians currently live in residential aged care facilities (RACFs) [1]. RACFs have become an increasingly common place for people to die, accounting for approximately 20% of deaths in the USA and UK [2,3] and one-third of deaths in Australia and New Zealand [4]. These figures exclude residents who are transferred to hospital during a final illness and die there. Internationally, it appears that hospitalisation of RACF residents near the end of life is common [5,6]. Limited Australian data are available, although in one metropolitan centre 7.8% of those presenting to emergency departments from RACFs died in hospital [7]. Research into hospitalisation of RACF residents estimates that between 8 and 44% of emergency department presentations are ‘inappropriate’ [8–11]. It has also been suggested that majority of RACF residents dying in hospital could have received their end-of-life care, care provided in the last days of life, in their RACF [12].
Correspondence to: Dr Heather Lane, Centre for Palliative Care, St Vincent’s Hospital. Email: [email protected] 76
Provision of palliative care, with a focus of care on symptom control, and psychosocial and spiritual support for patients with a life-limiting illness and their families, is increasingly recognised as important in RACFs [13,14]. In the last months of life, RACF residents have a symptom burden similar to people with advanced cancer, with many experiencing pain (46–86%) and dyspnoea (48–75%) [15,16]. Palliative care interventions in RACFs improve pain assessment [17] and management [18], increase discussions about end-of-life care [2,17] and reduce hospitalisations [2,19]. Advance care planning programmes in RACFs have also been shown to reduce hospitalisations, suggesting that when goals of care are discussed some residents prefer to avoid hospital transfer [20]. Introduction of end-of-life care pathways in RACFs, instituted to guide care in the last days of life, has been shown to be acceptable and feasible [21]. Barriers exist to the provision of palliative and end-of-life care in RACFs in Australia [22]. Staff working in Australian RACFs report a need for palliative care education [23,24] and improved access to specialist palliative care [24]. To improve understanding of reasons for these barriers, the views and experiences of those providing care to RACF residents, the staff working in RACFs and community palliative care services (CPCS), is required. This project aimed to explore the experiences of staff providing palliative and end-of-life care to residents of RACFs.
Method Consistent with the exploratory nature of the research question, a qualitative methodology using a thematic analysis was adopted. The approach involved semistructured interviews and a focus group with staff from two RACFs and two CPCSs in a major Australian metropolitan centre. Semistructured interviews were most convenient for participants and therefore the main source of data. However, a focus group was arranged at one CPCS. The two CPCSs were chosen as they provided specialist palliative care to a large area, from the inner city to outer suburbs. Both CPCSs provided consultative services to RACFs in their area, although not to the participating RACFs. The two community palliative care services were similar in structure and population served. The two RACFs were chosen to represent a diversity of service model. The service provider for RACF A was a tertiary hospital. In this 30-bed facility, all residents had high Australasian Journal on Ageing, Vol 34 No 2 June 2015, 76–81 © 2013 ACOTA
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care needs (requiring almost complete assistance with activities of daily living) [25]. Staff providing care were predominantly trained nurses and medical cover consisted of regular consultations by general practitioners (GPs), who were also available on call outside working hours. The service provider for RACF B was an independent, not for profit, non-denominational organisation. In this 90-bed facility, residents had both high and low care needs (requiring accommodation and assistance with personal care) [26]. Personal care assistants provided the majority of direct care with nursing supervision. Locum services were relied upon for medical cover outside of working hours. Initially, managers of each of the services were approached. The managers supported the project and made initial introductions to potential participants. Clinical staff from all health-care disciplines were invited to participate. Written informed consent was obtained by the interviewer prior to the interviews. In the RACFs, interviews were conducted with consecutive staff available on the day, over 2 days (RACF B) and 4 days (RACF A). In one CPCS, interviews were conducted with purposively sampled staff whose job roles involved extensive interaction with RACFs. In the other CPCS, a focus group was conducted with the multidisciplinary CPCS team. Interviews and the focus group were conducted at the participant’s place of work. All were conducted by the principal researcher (HL). Sampling continued until saturation of themes was reached. The interview structure followed a broad schedule (Appendix I), with flexibility to explore issues raised by interviewees in greater depth. The focus group and all interviews were recorded, transcribed and subject to a thematic analysis [27,28]. The analysis was reviewed by a second investigator, with points of divergence compared, discussed, and consensus reached, ensuring validation and reduction of bias. This project was approved by the institutional human ethics research committee.
Results Participants Fifteen RACF staff and 15 CPCS staff participated in the study. Interviews were 18–42 minutes in length. Demographic details of the participants are shown in Table 1. The overarching theme to emerge was of managing the expectations of all persons involved in the provision of care. Expectations of the care provided by services and administrative expectations appeared to impede both discussions of goals of care and provision of palliative care in RACFs. Subthemes included limited expectations of the level of care in RACFs, a mismatch in expectations of both care model and the role of community palliative care services between Australasian Journal on Ageing, Vol 34 No 2 June 2015, 76–81 © 2013 ACOTA
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Table 1: Demographics of study participants (number) Interviewee demographic details Sex Male Female Job role Nurse Doctor Allied health professional Personal care assistant
CPCS
RACF
1 14
3 12
11 3 1 0
12 2 0 1
CPCS, community palliative care services; RACF, residential aged care facilities.
RACF and CPCS staff, and tensions in addressing complex decision-making and satisfying organisational administrative expectations. These subthemes are further described below and outlined in Table 2.
Limited expectations: Level of care Interviewees described limited expectations of the level of medical care available to RACF residents. A GP simply visiting the RACF was perceived as good care. GPs often cared for a large number of people in the RACF and had limited time available for individual consultations when they visited. One nurse described the hurried nature of a GP visit as: ‘Rush, rush, rush, I have to go, I have to go’. While staff of RACF A were able to directly contact GPs after hours, RACF B, which relied upon locum doctors, reported at times substantial delays between requesting a locum visit and a consultation occurring. In RACF B, nursing staff also reported many competing demands on their time. Several nurses reported that administrative demands reduced their contact with residents, with one reporting considering returning to work in an acute hospital because she missed direct patient contact. Another nurse reported that it would be difficult to spend an uninterrupted half hour with a dying resident. RACF staff reported that they were unable to manage residents’ care if acute medical management was required because of insufficient resources and expertise. We rang for a locum for a lady on . . . Saturday morning, the locum was not able to get to us till . . . Sunday lunchtime. (RACF nurse) she had the trachy and coughing and keep on suctioning, [but it] doesn’t help, so I call up the ambulance. . . . we cannot cope with it for the whole night here. (RACF nurse) CPCS staff were aware of the time pressures faced by RACF staff and the often limited medical support available. They described these issues also impacting on their ability to provide palliative care, in particular opioid analgesia and as required medications, to RACF residents. 77
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Table 2: Managing expectations: overview of subthemes Limited expectations
Level of care able to be provided in RACF
Mismatched expectations between RACF and CPCS staff
Model of care
Role of CPCS
Tensions between competing expectations
Decision-making and administrative expectations
RACF staff
CPCS staff
Limited medical cover Many competing demands on nursing time Unable to manage acute medical care Acute medical model of care with hospitalisation of unwell residents is the standard approach Close personal relationships with residents means life prolongation is valued Receptive to palliative care ideas Not skilled at discussing goals of care Unsure who to refer to CPCS Did not recognise their own palliative care skills Sought support for decision to move to a palliative approach and reassurance about palliative management Limited discussions of goals of care undertaken Decision-making predominantly occurred at times of acute deterioration in health Day-to-day conversations not seen as contributing to advance care planning
Limited medical cover affects ability to provide palliative care Palliative approach considered applicable to most high-care residents Believe goals of care discussions should be routine for RACF staff View primary role as the management of complex symptoms, not providing care for routine dying Did not appreciate challenges RACF staff found in undertaking goals of care discussions
CPCS, community palliative care services; RACF, residential aged care facilities.
Locums are very reluctant to . . . to give narcotics to someone that they don’t know. (CPCS nurse) Mismatched expectations: Care model In both RACFs, staff indicated that residents were treated according to an acute medical model of care, including hospitalisation of unwell residents. This appeared to be the standard approach to care to be followed unless actively determined otherwise. RACF staff appeared to hold high expectations of the benefits of hospitalisation. Staff in both RACFs reported close relationships with residents in their care. Many RACF staff were saddened when residents died, often having cared for them for years. Such staff viewed the RACF as a home and the residents as ‘family’. As such, they valued life prolongation for RACF residents. One nurse when describing her reason for transferring a sick resident to hospital said, ‘we wanted to save their life’. Once a decision was formally made to change from an acute medical model to a palliative approach to care, shifting the focus of care to symptom management and psychosocial support, RACF staff appeared confident in providing this care. All the RACF nurses interviewed reported caring for the dying was an important part of their job. However, RACF staff did not feel adequately skilled to initiate decisions about changing to a palliative approach to care. They considered this the role of a doctor or specialist service. One experienced nurse described her view of discussions of goals of care as: ‘I believe it should be done by a knowledgeable team of people . . . or one person that really knows what they are doing’. We always explain it to the family that . . . if their mum or their dad is sick, we will send them in the hospital. (RACF nurse) 78
They might be getting better pain relief and everything at the hospital. (RACF nurse) it is very depressful [sic] for me because . . . they are more like my parent or my grandparent . . . If you look after someone everyday and then suddenly . . . they depart it is not that easy. (RACF nurse) after this you know she will have no more pain. . . . You have done your bit and you know they pass away nicely, smoothly. The feeling is good. (RACF nurse) In contrast, staff from CPCSs considered a palliative approach to care applicable to most RACF residents and ideally the standard model of care for many residents. As such they appeared to consider discussions about future care and goals of care as routine for RACF staff. Hospitalisation was viewed as undesirable and unlikely to benefit most RACF residents. Some nursing homes are very good and have a very good palliative approach. Others are still in that mindset of trying to keep people alive. (CPCS nurse)
Mismatched expectations: Role of community palliative care services A mismatch in expectations of the role of CPCSs was apparent, with the RACF staff requesting CPCSs to provide support for the decision to move a particular resident from acute life-prolonging approach to care to a palliative approach, and reassurance that RACF staff were providing appropriate care. Yet, the CPCS saw their role as providing assistance with symptom relief and, more particularly, for those with complex symptoms. RACF staff respected the specialist training and skills of CPCS staff, but were unsure about which residents to refer. Specialist palliative care input was generally only sought when a resident was dying, and had been ‘made palliative’ Australasian Journal on Ageing, Vol 34 No 2 June 2015, 76–81 © 2013 ACOTA
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either by the facility GP or a hospital specialist. RACF staff did not recognise their own palliative care skills, as they saw palliative care as a specialist area. One RACF nurse was surprised by the simplicity of core palliative care provision.
discussions did not appear to contribute to advance care planning. As a result, documentation could override the wishes expressed by residents in conversation with nursing staff.
And usually the thing is, I do notice it is just, keeping the resident as comfortable as possible towards the end journey.
If you see the admission package in aged care, . . . it is a whole thing, so that end of life wishes it is only one page, . . . but it is the crucial page. (RACF nurse)
CPCS staff described their primary role as management of complex symptoms and thus considered many referrals from RACFs to be inappropriate, as the referred residents did not have complex symptoms. CPCS staff suggested that RACF staff should be able to be manage ‘uncomplicated’ deaths. CPCS staff did not understand that the RACF staff lacked confidence in recognising that a palliative approach was appropriate, and undertaking conversations and instituting care commensurate with this recognition. Just because someone’s dying doesn’t mean, necessarily mean, we need to be involved. (CPCS nurse)
Unless you have got the documentation there, you actually can’t do anything else but send them back [to hospital]. (CPCS nurse) But this resident was sent to the hospital because of abnormal actually pathology results . . . [despite] this resident was refusing to go to the hospital. (RACF nurse) CPCS staff were not routinely involved in discussions around goals of care with RACF residents and did not appear to recognise the complexity and challenges facing RACF staff undertaking such discussions.
Discussion Decision-making and administrative expectations When new residents were admitted a large amount of admission paperwork required completion by nursing and medical staff. After the completion of this, there was often little time left to address issues such as advance care planning. RACF and CPCS staff also identified that moving into a RACF was a difficult time for many people, with relatives described as often experiencing guilt during this transition. RACF staff considered this an inappropriate time to start conversations about goals of care with people they had not previously met. However, completion of documentation of resuscitation and hospitalisation preferences was expected soon after admission. One senior nurse recalled a GP describing this challenge: ‘you’ve just newly admitted this resident and then straight away you’ll be asking them, “is this patient for resus or not for resus?” ’ For these reasons, limited discussion about goals of care or resident wishes was undertaken with RACF residents and their families. Although both RACFs had a standard form for documenting residents’ resuscitation and hospitalisation preferences, neither medical nor nursing staff considered themselves skilled in undertaking these discussions. RACF B typically gave this form to the resident or family to fill in, with little discussion about its implications. In RACF A, GPs were responsible for completing the form; however, this was often not completed at admission. Decision-making was described as predominantly occurring at times of crisis, such as when a resident became acutely unwell and an urgent decision was required regarding hospitalisation. At such times, the documentation was often the first reference. Although some nurses reported conversing with residents about their wishes for their future care, these Australasian Journal on Ageing, Vol 34 No 2 June 2015, 76–81 © 2013 ACOTA
This qualitative study has identified a series of dynamics and expectations which impact upon the quality of end-of-life care for RACF residents. Limited expectations of medical care and multiple competing demands on nursing staff were identified as potentially impacting on care. These findings reflect those of other Australian studies which report limited medical cover and heavy workloads for RACF staff resulting in presentations to the emergency department [23] and impacting on end-of-life care [24]. Further to this, our study identified challenges regarding the decision-making processes for residents, and the competing demands of administrative tasks which detract from decision-making. These challenges were identified by staff of both RACFs despite differing staffing demands and medical support. Fundamental differences in expectations of the model of care and the perceived role of CPCSs between RACF and CPCS staff were also identified. Such differences are likely to impact on communication between these services and the provision of palliative care to RACF residents, and contribute to the ongoing frequent hospitalisation of RACF residents near the end of life. The standard model of care for RACF residents is an acute medical model. However, this is combined with a low level of surveillance from medical and nursing staff and a low level of discussion with residents and families about expected disease course and goals of care. Therefore hospitalisation appears an inevitable outcome for many residents. Once given permission to move from an acute life-prolonging stance, RACF staff embraced palliative care concepts and appeared confident in providing end-of-life care. However, RACF staff were not confident in discussing goals of care or effecting a transition to a palliative approach. Without improving the integration of palliative care concepts into aged care, and importantly improving the ability and confidence of RACF staff to discuss these concepts, there is unlikely to be a 79
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meaningful decline in the hospitalisation of residents at the end of life. Programs introducing advance care planning into nursing homes have been shown to reduce hospitalisations, and importantly, to improve the confidence of RACF staff in discussing goals of care [20]. CPCSs perceived that their main role in RACFs was to assist in the management of complicated symptoms, and expressed frustration regarding the referrals from RACFs which did not, in their assessment, require specialist palliative care input as symptoms were not complex. However, symptom management was not a need identified by RACF staff, who instead were referring to seek support and reassurance around the decision to move to a palliative approach. To improve end-of-life care for residents of RACFs, an improved understanding of the needs of staff of RACFs is needed by CPCSs. Assistance with planning goals of care, sharing responsibility for decision-making and education about goals of care discussions are key services that CPCSs could provide to RACFs.
The RACF staff interviewed revealed great compassion for the residents they cared for in, at times, demanding condi80
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tions with limited support. Rather than criticising their management by labelling referrals to other services such as CPCSs or the emergency department as ‘inappropriate’, a focus should be on supporting RACF staff and improving systems to better meet their residents’ needs. In particular, a focus on supportive maintained advance care planning for RACF staff to progress with residents is a valuable role for CPCS, and one not yet fully recognised or embraced. Improved understanding and support of RACF staff is likely to improve the care of residents, reduce hospitalisation rates and improve CPCS satisfaction with their interaction with RACFs.
Acknowledgements I would like to acknowledge the participating community palliative care services and residential aged care facilities for their support and involvement in this study.
Both RACFs routinely documented residents’ resuscitation and hospitalisation preferences. However, it appeared that limited discussion with nursing and medical staff occurred in the completion of these forms. Despite this, these documents were used as a first reference at times of acute medical crisis. The design of the form as a fixed document requiring completion on admission appeared to encourage the view of advance care planning as a one off event focused on medical decisions. This contrasts with the view of advance care planning as an evolving conversation about a person’s priorities, goals and wishes, with allowance for change over time, as is promoted in palliative care [29]. In an evolving model, the conversations nursing staff have with RACF residents regarding their wishes, which arise during the course of usual care, should be seen as contributing to the advance care planning process. This would be in contrast to current practices where such unfolding views can be overridden by documentation completed at admission. This study has limitations. It only included two RACFs and two CPCSs, within one centre. Australian RACFs are diverse, so the viewpoints discussed may not be representative of other RACFs. The RACF staff interviewed were predominantly nurses, with only one health-care assistant participating. Health-care assistants’ views and experiences may be expected to be different from those of nurses as their training differs. In many RACFs, the health-care assistants deliver the majority of direct care and therefore have more contact with residents. Further research of the views of these staff members would be valuable. This project did not seek to explore the experiences and views of RACF residents and their families, another area requiring further investigation. Despite these limitations, we believe that this study uniquely highlights the constraints to the provision of palliative care to residents of RACFs.
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Key Points • Incorporation of advance care planning and palliative care programmes into RACFs improves symptom management, increases discussions of goals of care and reduces hospitalisations. • Limited medical cover and multiple demands on nursing staff time limited the care available to some RACF residents, and tensions exist between addressing complex decision-making and satisfying organisational administrative expectations. • Fundamental differences in expectations of both model of care and the role of CPCS were identified between RACF and CPCS staff. • To improve end-of-life care for residents of aged care facilities, assistance with planning goals of care, sharing responsibility for decision-making and educating staff about goals of care discussions are key services that CPCSs could provide to RACFs.
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Appendix I: Interview Schedule RACF staff Can you think back to the last patient you cared for, who was transferred to hospital: 1 Can you please sketch for me how the events unfolded. 2 What things went well? 3 Were there any difficulties? 4 Were there any things you like to do differently next time? 5 What was the family’s role or involvement? Can you think back to the last patient you cared for, who died in the aged care facility: 6 Can you please sketch for me how the events unfolded. 7 What things went well? 8 Were there any difficulties? 9 Were there any things you like to do differently next time? 10 What was the family’s role or involvement? More generally: 11 What are the positive aspects of transferring someone to the acute hospital from the aged care facility? 12 What are the challenges involved in transferring someone to the acute hospital from the aged care facility? 13 What are the positive aspects of caring for someone who is dying in the aged care facility? 14 What are the challenges of caring for someone who is dying in the aged care facility? 15 What is your understanding of what palliative care means? CPCS staff Can you think back to the last patient you were involved with in a high-level care aged care facility: 1 Can you please sketch for me your involvement? 2 What things went well? 3 Were there any difficulties? 4 Were there any things you like to do differently next time? 5 What was the family’s role or involvement? More generally: 6 What are the positive aspects of providing palliative care input in a high level care aged care facility? 7 What are the challenges in providing palliative care input in a high level care aged care facility? 8 What factors would make you recommend transfer to another facility, such as an inpatient palliative care unit or an acute hospital? Can you think of any examples of this?
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