bs_bs_banner
Aust. J. Rural Health (2014) 22, 160–164
Original Research Rural palliative care transitions from home to hospital: Carers’ experiences Isabelle Hatcher, BPhysio, MOH, MHMQL,1 Louise Harms, BA, MSW, PhD,2 Brigid Walker, RN, MSW,1 Suzanne Stokes, RN, BHSci, GradDip Management, MHA, GradCertOnc, GradCertRIP,1 Alison Lowe, RN, BHSci, Grad Dip Midwifery, MPall Care,3 Kellie Foran, RN,1 and Jacqui Tarrant, RN, BHSci(Hons)1 1
Kyneton District Health Service, 2Department of Social Work, The University of Melbourne, Melbourne, 3Macedon Ranges Palliative Care Service, Kyneton, Victoria, Australia
Abstract Objective: To document carer perceptions of patients’ transitions from community to hospital-based palliative care in a rural setting. Design: A qualitative study using an interview method at two time points. Setting: Rural palliative care providers: Kyneton District Health Service and the Macedon Ranges Palliative Care Service, Victoria Participants: Six adult caregivers of six palliative care patients who had cancer were interviewed, three of whom were male and three female. Main outcome measures: Semistructured interviews were conducted exploring the caregivers’ decisions to transition to hospital-based care and their perceptions of the transition to hospital and the hospital-based care these patients received. Results: Thematic analysis revealed that carers made the decision for the patient in their care to transfer from home to hospital care. Carers experienced the transition to hospital care positively, particularly in relation to the communication of the patient’s care needs. While communication issues arose while in hospital, they were not related to the transitional aspects of the palliative care service. Conclusions: The findings from this small, exploratory study suggest that these carers benefited from the new model of rural palliative care service provision. A large-scale, mixed-method study would enable more generalisable findings to be established. KEY WORDS: carer, communication, model of rural
service provision, nursing, palliative care. Correspondence: Louise Harms, Department of Social Work, The University of Melbourne, Melbourne, Victoria, 3010, Australia. Email: [email protected] Accepted for publication 24 February 2014. © 2014 National Rural Health Alliance Inc.
Introduction In the rural context of Kyneton, Victoria, many people with a terminal illness receive medical care from citybased hospitals initially, with referral then to homebased care with the Macedon Ranges Palliative Care Service (MRPCS). Kyneton District Health Service (KDHS) provides end-of-life palliative care for about 20 of these people each year who transition into this hospital-based end-of-life care. This study explored informal caregivers’ perceptions of this transition from community to hospital-based palliative care when a new model of care had been established. In 2009, following a sentinel event, a new model of care was established in an effort to address complex care issues arising in the care transition between KDHS and MRPCS. The sentinel event highlighted communication silos that existed between specialist palliative care in the community and end-of-life care in the hospital, and the known service linkage challenges1 of rural practice. In the new model, the transition from community to hospital-based care is facilitated by a handover of care from the specialist palliative care community-based nurse, and this nurse remains part of the care team throughout the hospital admission. Nurses from MRPCS have both general nursing and specialist palliative care qualifications, and are able to provide, therefore, generalist and palliative home-based care and work with the hospital-based multidisciplinary team. The feature of this model is that based on a maternity model of care, patients are admitted for the entire episode of care whether in the community or in the hospital. Their medical histories follow them throughout the care continuum, allowing staff from all areas to have access to the same information. In rural settings, this model of care is unique, and its implementation reflects the ‘critical need to find highquality innovative models of health care delivery that doi: 10.1111/ajr.12105
161
RURAL PALLIATIVE CARE TRANSITIONS
What is already known on this subject: • Carers experience significant stress and distress when palliative care patients transfer from home-based care to hospital-based care. • Key stressors for carers are managing the patients’ care needs, maintaining their own health and working with health care providers. • Little is known about carers’ experiences of palliative care in rural contexts.
What does this study adds: • This small-scale, descriptive study examined carers’ experiences of a new model of rural palliative care • This study highlighted the value of identifying the unique and particular experiences of carers’ insights of effective care. • This study highlights the need for palliative care research that captures the complexity and diversity of carer experiences.
are responsive to the unique needs of rural communities’.2 In addition to the well-identified stressors for carers in any geographical context,3–6 stressors for carers in the rural context are compounded by frequently dealing with the isolation of care demands,7 the multiple care transitions in order to access specialist care,8 having to travel extensively2 and often feeling ‘lost in the system’ as a result.8 Communication issues for patients and carers with their health care providers are commonly reported challenges5,9 in the form of information given by health professionals to patients and carers, the degree of consultation about care matters such as medication and pain control,2,10 and also communication between different health care services.7,8 Shared care models have been increasingly promoted as ways of overcoming these challenges. The aim of this study was to document and understand carer perceptions of the transition of the person for whom they were caring (referred to as ‘the patient’) from community to hospital-based palliative care in a rural setting, within the context of this new model of practice. A small-scale, qualitative study was proposed to capture the depth and diversity of carers’ experiences.
patients admitted during the recruitment period, convenience sampling led to 35 carers being recruited over a 12-month period, reflecting a 36% initial response rate. No carers were excluded due to being non-Englishspeaking or experiencing high distress. Some carers were not approached because of the community nurses’ reluctance to approach carers at this time. With each patient’s consent, the caregivers completed a brief demographic questionnaire relating to themselves and the patient. They were invited to consent to being approached if their patient was admitted to KDHS for palliative care and participate in a semistructured interview at that time. The signed consent for follow-up document was sent from MRPCS to a non-treating member of the hospital research team, where it was recorded and checked against daily admissions.
Method This project used a semistructured interview method at two time points – on admission to hospital and three months later. Ethics clearance was provided by the University of Melbourne’s Human Research Ethics Committee.
Recruitment Eligible participants were ‘informal caregivers’ (relative or friend) over 18 years of age who were providing care on a regular basis to patients throughout the patient’s illness, as nominated by the patient. Caregivers were recruited at the time of patient admission to the palliative care service. Of the 96 © 2014 National Rural Health Alliance Inc.
Interviews After the patients’ admissions to hospital, six out of the 35 caregivers who had consented to be approached were identified and reconsented. Given 78% of MRPCS patients die at home not hospital, this small number of patients admitted to hospital for end-of-life care was anticipated and considered typical. The first interview was conducted within the first week of the admission, and the second, three months later. The interview questions at both time points focused on perceptions of support and services they received, and would have liked to have received during their transition experience from the community to the hospital and subsequent hospital admission period. The audio-recorded interviews were between 30 and 60 min, and were conducted by a non-treating KDHS staff member.
Data analysis All carers were given a pseudonym. Data were analysed using NVivo 9. Coding of interview transcripts according to the semistructured interview schedule provided a
162
reductive analysis of the data. Emergent codes and subsequent themes were then analysed through an inductive analysis.11 Two researchers cross-checked both the data coding and thematic analysis in order to ensure rigour, and the thematic findings were checked with interview participants.
The sample The six participants were adult caregivers, each caring for a different patient with terminal cancer. Three carers were male and three female. Three participants were partners of the patient, two were daughters, and one was a long-standing friend. The carer relationships had extended from between 5 months to 4 years. Five of the carers lived in the same house with the patient, and the remaining patient lived in a separate house on the same property. Carers ranged in age from 46 to 72 years. Five patients had died by the time of the second interview, and the sixth died two weeks after it.
Results Carers spoke about three key issues: (i) making the decision to transition to hospital; (ii) the transition from home to hospital; and (iii) the care in hospital.
Making the decision to transition to hospital The six carers described particular turning points in caring at home, when they realised that hospitalisation for their patient was required. Importantly, the carer in each situation rather than the patient determined this point of transition based on their perceived inability to continue to provide optimal care for the patient. Table 1 provides a summary of the reasons for making the decision to transition from home-based to hospital-based care. As Table 1 highlights, carers identified multiple reasons for the transition to hospital care. The most commonly identified triggers were physical difficulties, patient pain and patient anxiety. The carer-led transition for all patients was discussed with the nursing team and, in most instances, with the patient. These descriptions emphasise the carer-led nature of decision-making, and the nature and timing of key turning points in their capacity to provide care.
The transition from home to hospital The transition of care from home to the hospital was experienced as a smooth transition by all participants, with the transfer of information and care particularly noted:
I. HATCHER ET AL.
TABLE 1: Reason caregiver gave for patients’ hospital admissions (‘X’ denotes the carer gave this reason) Carer number Reason given for patient admission Physical demands – toileting, lifting Patient distress and/or anxiety Patient pain Carer sleep deprivation Patient confusion from medication Patient’s breathing difficulties Carer distress Patient’s medication management Change of role
1
2
3
4
5
6
X
X
X
X
NA NA 4
NA X NA NA
X NA X NA
X X X X
X NA NA X
NA X NA X
X X X NA
Total
4 4 3 3
NA NA NA X NA X 2 NA NA X NA X NA 2 NA NA X NA NA NA 1 NA NA X
NA NA NA 1
We were here yesterday and I omitted to say to somebody out the front what do I have to sign, . . . I know it’s a different set up to [names a city hospital] but when we go in there, it’s when there was an emergency. We had to present to emergency and then we had to go through the system and finally we got in (Participant #6).
Two carers noted that the community and hospital staff worked well together, exemplified in the following statement: She got all the paperwork, and she filled it all in . . . so that was easy then, for the hospital, because virtually everything was, was known, and, you know, you got all the notes from the palliative care nurses. So you had a, a fair idea of . . . what has to be happening (Participant #2).
These insights highlight that the often burdensome administrative aspects of the transitions and medical management could be experienced smoothly when the communication channels were working effectively.
The care in hospital Overall, the participants were full of praise for the care their patient received in the hospital. They identified qualities they perceived to be important in the care they and their patient received: They’re very, very personal and compassionate, caring, soft, gentle . . . I’m impressed (Participant #6).
Patients and carers were treated as individuals and supported as such: © 2014 National Rural Health Alliance Inc.
163
RURAL PALLIATIVE CARE TRANSITIONS
TABLE 2:
Key descriptors of the carers’ perceptions of the transitions to hospital care
Interview time period
1
2
3
4
5
6
Time 1
Good
Smooth
Wonderful
Relief
Relief
Time 2
Excellent
Friendly, caring, knowing caring
Let professionals take over, step back
Can’t speak highly enough
Relief
Resistance
Almost felt like it was you were an individual case and you were the only people that they had to look after . . . the staff at the hospital were absolutely fantastic and would do anything, bend over backward to make you feel welcome (Participant #3).
The local appreciated:
country
hospital
atmosphere
was
I think that he was just relieved to be here, he felt safe (Participant #5). And the fact that it’s close, where I was going up and down to Melbourne on the train every day to the [names a city hospital], and . . . that gets very tiring. Whereas here, . . . I can come in a couple of times, or I have been coming in a couple of times a day (Participant #4).
While overall, the transition was positively regarded, some communication difficulties were still encountered. These related to specific care issues within the hospital context, in relation to pain, dealing with new staff, and the rationale for specific interventions. Importantly, for this study, they did not relate to the model of care and the point of transition from home to the hospital. All rated the care their family member was receiving in the community at the time of recruitment as ‘excellent’, and their perceptions once in hospital were similarly positive. Table 2 summarises these experiences. The positive perceptions are best reflected in the statement of one participant: Like I said, we’re really very, very happy with everybody from a to z. Just worked perfectly (Participant #2).
The one carer (#6) who spoke about resisting the transition to hospital (Table 2) saw this transition to hospital as symbolic of the final step and impending death of their patient. They were understandably reluctant to view this positively. The participants were therefore identifying the specific core skills and human qualities that optimally supported their transition experiences. © 2014 National Rural Health Alliance Inc.
Discussion This study was limited by its sample size and recruitment via self-selection. While this may have meant that any carers who were dissatisfied with the service did not participate, this small, descriptive study of carers’ experiences has provided rich and useful insights into successful elements of a model of palliative care in a rural context. It has captured the nuanced experiences of rural caregivers, often overlooked in large-scale studies. In many ways, the experiences of carers in this study were consistent with findings of other studies of carers. These carers similarly experienced significant stress and distress in providing end-of-life care at the point of transition, concurrent with the patient’s declining health. One experienced reluctance also.2 They encountered some communication issues while in the hospital relating to pain management or the perceived necessity of certain interventions consistent with other studies.8–10 The findings differ from other studies, however, in important ways. While the transition to hospital-based care was at a crisis point, these carers were involved in the decision-making process, and, in fact, initiated and led the process. These decisions were made in the context of an intimate service, where the team was trusted and able to provide the continuity of care into the terminal illness phase albeit in the hospital setting. This contrasts with participants in Keesing et al.’s9 study, who felt that they were not included in the decision-making process about where the patient would die. These carers also highlighted positive experiences of transition into the hospital context, unlike many other studies.6,8 These experiences were based on the linkages with their palliative care nurses and hospital-based nurses, and the transmission of critical patient information. That is, key aspects of the new model of care were directly experienced by carers in positive ways – the direct and continuous transfer of medical information via the patient file, and the ongoing involvement of specialist palliative nursing care in the final stages of the patient’s life.
164
Conclusion The model of care developed at Kyneton has focused on a continuum of care from hospital to home. This study demonstrated that the transition from community-based to hospital-based palliative care was an overall positive experience for these carers. They were acutely aware of the very specific aspects of communication and care that worked effectively and ineffectively for them and the patient throughout the transition. The implication for future practice is whether this model of care could be implemented in other health services that provide specialist palliative care. Further research with a larger sample of carers and a mixed-method design would assist in determining this direction for practice.
Acknowledgements The authors wish to thank the participants for sharing their experiences.
Author contributions Isabelle Hatcher (30%), Louise Harms (30%), Brigid Walker (10%), Suzanne Stokes (10%), Alison Lowe (10%), Kellie Foran (5%), and Jacqui Tarrant (5%).
References 1 Masso M, Owen A. Linkage, coordination and integration: evidence from rural palliative care. Australian Journal of Rural Health 2009; 17: 263–267.
I. HATCHER ET AL.
2 Robinson CA, Pesut B, Bottorff JL. Issues in rural palliative care: views from the countryside. The Journal of Rural Health 2010; 26: 78–84. 3 Aranda S, Milne D. Guidelines for the Assessment of Complicated Bereavement Risk in Family Members of People Receiving palliative Care. Melbourne: Centre for Palliative Care, 2000. 4 Schulman-Green D, McCorkle R, Curry L, Cherlin E, Johnson-Hurzeler R, Bradley E. At the crossroads: making the transition to hospice. Palliative and Supportive Care 2004; 2: 351–360. 5 Hudson P. How well do family caregivers cope after caring for a relative with advanced disease and how can health professionals enhance their support? Journal of Palliative Medicine 2006; 9: 694–703. 6 Steinhauser K, Clipp E, Hays J et al. To live close to a person with cancer – experiences of family caregivers. Social Work in Health Care 2012; 51: 909–926. 7 Wilkes L, White K. The family and nurse in partnership: providing day-to-day care for rural cancer patients. Australian Journal of Rural Health 2005; 13: 121–126. 8 Duggleby WD, Penz K, Leipert BD, Wilson DM, Goodridge D, Williams A. ‘I am part of the community but . . .’ The changing context of rural living for persons with advanced cancer and their families. Rural and Remote Health 2011; 11: 1733. 9 Keesing S, Rosenwax L, McNamara B. ‘Doubly deprived’: a post-death qualitative study of primary carers of people who died in Western Australia. Health and Social Care in the Community 2011; 19: 636–644. 10 Mitchell G, Nicholson C, McDonald K, Bucetti A. Enhancing palliative care in rural Australia: the residential aged care setting. Australian Journal of Primary Health 2011; 17: 95–101. 11 Birks M, Mills J. Grounded Theory: A Practical Guide. London: SAGE, 2011.
© 2014 National Rural Health Alliance Inc.
Aust. J. Rural Health (2014) 22, 160–164
Original Research Rural palliative care transitions from home to hospital: Carers’ experiences Isabelle Hatcher, BPhysio, MOH, MHMQL,1 Louise Harms, BA, MSW, PhD,2 Brigid Walker, RN, MSW,1 Suzanne Stokes, RN, BHSci, GradDip Management, MHA, GradCertOnc, GradCertRIP,1 Alison Lowe, RN, BHSci, Grad Dip Midwifery, MPall Care,3 Kellie Foran, RN,1 and Jacqui Tarrant, RN, BHSci(Hons)1 1
Kyneton District Health Service, 2Department of Social Work, The University of Melbourne, Melbourne, 3Macedon Ranges Palliative Care Service, Kyneton, Victoria, Australia
Abstract Objective: To document carer perceptions of patients’ transitions from community to hospital-based palliative care in a rural setting. Design: A qualitative study using an interview method at two time points. Setting: Rural palliative care providers: Kyneton District Health Service and the Macedon Ranges Palliative Care Service, Victoria Participants: Six adult caregivers of six palliative care patients who had cancer were interviewed, three of whom were male and three female. Main outcome measures: Semistructured interviews were conducted exploring the caregivers’ decisions to transition to hospital-based care and their perceptions of the transition to hospital and the hospital-based care these patients received. Results: Thematic analysis revealed that carers made the decision for the patient in their care to transfer from home to hospital care. Carers experienced the transition to hospital care positively, particularly in relation to the communication of the patient’s care needs. While communication issues arose while in hospital, they were not related to the transitional aspects of the palliative care service. Conclusions: The findings from this small, exploratory study suggest that these carers benefited from the new model of rural palliative care service provision. A large-scale, mixed-method study would enable more generalisable findings to be established. KEY WORDS: carer, communication, model of rural
service provision, nursing, palliative care. Correspondence: Louise Harms, Department of Social Work, The University of Melbourne, Melbourne, Victoria, 3010, Australia. Email: [email protected] Accepted for publication 24 February 2014. © 2014 National Rural Health Alliance Inc.
Introduction In the rural context of Kyneton, Victoria, many people with a terminal illness receive medical care from citybased hospitals initially, with referral then to homebased care with the Macedon Ranges Palliative Care Service (MRPCS). Kyneton District Health Service (KDHS) provides end-of-life palliative care for about 20 of these people each year who transition into this hospital-based end-of-life care. This study explored informal caregivers’ perceptions of this transition from community to hospital-based palliative care when a new model of care had been established. In 2009, following a sentinel event, a new model of care was established in an effort to address complex care issues arising in the care transition between KDHS and MRPCS. The sentinel event highlighted communication silos that existed between specialist palliative care in the community and end-of-life care in the hospital, and the known service linkage challenges1 of rural practice. In the new model, the transition from community to hospital-based care is facilitated by a handover of care from the specialist palliative care community-based nurse, and this nurse remains part of the care team throughout the hospital admission. Nurses from MRPCS have both general nursing and specialist palliative care qualifications, and are able to provide, therefore, generalist and palliative home-based care and work with the hospital-based multidisciplinary team. The feature of this model is that based on a maternity model of care, patients are admitted for the entire episode of care whether in the community or in the hospital. Their medical histories follow them throughout the care continuum, allowing staff from all areas to have access to the same information. In rural settings, this model of care is unique, and its implementation reflects the ‘critical need to find highquality innovative models of health care delivery that doi: 10.1111/ajr.12105
161
RURAL PALLIATIVE CARE TRANSITIONS
What is already known on this subject: • Carers experience significant stress and distress when palliative care patients transfer from home-based care to hospital-based care. • Key stressors for carers are managing the patients’ care needs, maintaining their own health and working with health care providers. • Little is known about carers’ experiences of palliative care in rural contexts.
What does this study adds: • This small-scale, descriptive study examined carers’ experiences of a new model of rural palliative care • This study highlighted the value of identifying the unique and particular experiences of carers’ insights of effective care. • This study highlights the need for palliative care research that captures the complexity and diversity of carer experiences.
are responsive to the unique needs of rural communities’.2 In addition to the well-identified stressors for carers in any geographical context,3–6 stressors for carers in the rural context are compounded by frequently dealing with the isolation of care demands,7 the multiple care transitions in order to access specialist care,8 having to travel extensively2 and often feeling ‘lost in the system’ as a result.8 Communication issues for patients and carers with their health care providers are commonly reported challenges5,9 in the form of information given by health professionals to patients and carers, the degree of consultation about care matters such as medication and pain control,2,10 and also communication between different health care services.7,8 Shared care models have been increasingly promoted as ways of overcoming these challenges. The aim of this study was to document and understand carer perceptions of the transition of the person for whom they were caring (referred to as ‘the patient’) from community to hospital-based palliative care in a rural setting, within the context of this new model of practice. A small-scale, qualitative study was proposed to capture the depth and diversity of carers’ experiences.
patients admitted during the recruitment period, convenience sampling led to 35 carers being recruited over a 12-month period, reflecting a 36% initial response rate. No carers were excluded due to being non-Englishspeaking or experiencing high distress. Some carers were not approached because of the community nurses’ reluctance to approach carers at this time. With each patient’s consent, the caregivers completed a brief demographic questionnaire relating to themselves and the patient. They were invited to consent to being approached if their patient was admitted to KDHS for palliative care and participate in a semistructured interview at that time. The signed consent for follow-up document was sent from MRPCS to a non-treating member of the hospital research team, where it was recorded and checked against daily admissions.
Method This project used a semistructured interview method at two time points – on admission to hospital and three months later. Ethics clearance was provided by the University of Melbourne’s Human Research Ethics Committee.
Recruitment Eligible participants were ‘informal caregivers’ (relative or friend) over 18 years of age who were providing care on a regular basis to patients throughout the patient’s illness, as nominated by the patient. Caregivers were recruited at the time of patient admission to the palliative care service. Of the 96 © 2014 National Rural Health Alliance Inc.
Interviews After the patients’ admissions to hospital, six out of the 35 caregivers who had consented to be approached were identified and reconsented. Given 78% of MRPCS patients die at home not hospital, this small number of patients admitted to hospital for end-of-life care was anticipated and considered typical. The first interview was conducted within the first week of the admission, and the second, three months later. The interview questions at both time points focused on perceptions of support and services they received, and would have liked to have received during their transition experience from the community to the hospital and subsequent hospital admission period. The audio-recorded interviews were between 30 and 60 min, and were conducted by a non-treating KDHS staff member.
Data analysis All carers were given a pseudonym. Data were analysed using NVivo 9. Coding of interview transcripts according to the semistructured interview schedule provided a
162
reductive analysis of the data. Emergent codes and subsequent themes were then analysed through an inductive analysis.11 Two researchers cross-checked both the data coding and thematic analysis in order to ensure rigour, and the thematic findings were checked with interview participants.
The sample The six participants were adult caregivers, each caring for a different patient with terminal cancer. Three carers were male and three female. Three participants were partners of the patient, two were daughters, and one was a long-standing friend. The carer relationships had extended from between 5 months to 4 years. Five of the carers lived in the same house with the patient, and the remaining patient lived in a separate house on the same property. Carers ranged in age from 46 to 72 years. Five patients had died by the time of the second interview, and the sixth died two weeks after it.
Results Carers spoke about three key issues: (i) making the decision to transition to hospital; (ii) the transition from home to hospital; and (iii) the care in hospital.
Making the decision to transition to hospital The six carers described particular turning points in caring at home, when they realised that hospitalisation for their patient was required. Importantly, the carer in each situation rather than the patient determined this point of transition based on their perceived inability to continue to provide optimal care for the patient. Table 1 provides a summary of the reasons for making the decision to transition from home-based to hospital-based care. As Table 1 highlights, carers identified multiple reasons for the transition to hospital care. The most commonly identified triggers were physical difficulties, patient pain and patient anxiety. The carer-led transition for all patients was discussed with the nursing team and, in most instances, with the patient. These descriptions emphasise the carer-led nature of decision-making, and the nature and timing of key turning points in their capacity to provide care.
The transition from home to hospital The transition of care from home to the hospital was experienced as a smooth transition by all participants, with the transfer of information and care particularly noted:
I. HATCHER ET AL.
TABLE 1: Reason caregiver gave for patients’ hospital admissions (‘X’ denotes the carer gave this reason) Carer number Reason given for patient admission Physical demands – toileting, lifting Patient distress and/or anxiety Patient pain Carer sleep deprivation Patient confusion from medication Patient’s breathing difficulties Carer distress Patient’s medication management Change of role
1
2
3
4
5
6
X
X
X
X
NA NA 4
NA X NA NA
X NA X NA
X X X X
X NA NA X
NA X NA X
X X X NA
Total
4 4 3 3
NA NA NA X NA X 2 NA NA X NA X NA 2 NA NA X NA NA NA 1 NA NA X
NA NA NA 1
We were here yesterday and I omitted to say to somebody out the front what do I have to sign, . . . I know it’s a different set up to [names a city hospital] but when we go in there, it’s when there was an emergency. We had to present to emergency and then we had to go through the system and finally we got in (Participant #6).
Two carers noted that the community and hospital staff worked well together, exemplified in the following statement: She got all the paperwork, and she filled it all in . . . so that was easy then, for the hospital, because virtually everything was, was known, and, you know, you got all the notes from the palliative care nurses. So you had a, a fair idea of . . . what has to be happening (Participant #2).
These insights highlight that the often burdensome administrative aspects of the transitions and medical management could be experienced smoothly when the communication channels were working effectively.
The care in hospital Overall, the participants were full of praise for the care their patient received in the hospital. They identified qualities they perceived to be important in the care they and their patient received: They’re very, very personal and compassionate, caring, soft, gentle . . . I’m impressed (Participant #6).
Patients and carers were treated as individuals and supported as such: © 2014 National Rural Health Alliance Inc.
163
RURAL PALLIATIVE CARE TRANSITIONS
TABLE 2:
Key descriptors of the carers’ perceptions of the transitions to hospital care
Interview time period
1
2
3
4
5
6
Time 1
Good
Smooth
Wonderful
Relief
Relief
Time 2
Excellent
Friendly, caring, knowing caring
Let professionals take over, step back
Can’t speak highly enough
Relief
Resistance
Almost felt like it was you were an individual case and you were the only people that they had to look after . . . the staff at the hospital were absolutely fantastic and would do anything, bend over backward to make you feel welcome (Participant #3).
The local appreciated:
country
hospital
atmosphere
was
I think that he was just relieved to be here, he felt safe (Participant #5). And the fact that it’s close, where I was going up and down to Melbourne on the train every day to the [names a city hospital], and . . . that gets very tiring. Whereas here, . . . I can come in a couple of times, or I have been coming in a couple of times a day (Participant #4).
While overall, the transition was positively regarded, some communication difficulties were still encountered. These related to specific care issues within the hospital context, in relation to pain, dealing with new staff, and the rationale for specific interventions. Importantly, for this study, they did not relate to the model of care and the point of transition from home to the hospital. All rated the care their family member was receiving in the community at the time of recruitment as ‘excellent’, and their perceptions once in hospital were similarly positive. Table 2 summarises these experiences. The positive perceptions are best reflected in the statement of one participant: Like I said, we’re really very, very happy with everybody from a to z. Just worked perfectly (Participant #2).
The one carer (#6) who spoke about resisting the transition to hospital (Table 2) saw this transition to hospital as symbolic of the final step and impending death of their patient. They were understandably reluctant to view this positively. The participants were therefore identifying the specific core skills and human qualities that optimally supported their transition experiences. © 2014 National Rural Health Alliance Inc.
Discussion This study was limited by its sample size and recruitment via self-selection. While this may have meant that any carers who were dissatisfied with the service did not participate, this small, descriptive study of carers’ experiences has provided rich and useful insights into successful elements of a model of palliative care in a rural context. It has captured the nuanced experiences of rural caregivers, often overlooked in large-scale studies. In many ways, the experiences of carers in this study were consistent with findings of other studies of carers. These carers similarly experienced significant stress and distress in providing end-of-life care at the point of transition, concurrent with the patient’s declining health. One experienced reluctance also.2 They encountered some communication issues while in the hospital relating to pain management or the perceived necessity of certain interventions consistent with other studies.8–10 The findings differ from other studies, however, in important ways. While the transition to hospital-based care was at a crisis point, these carers were involved in the decision-making process, and, in fact, initiated and led the process. These decisions were made in the context of an intimate service, where the team was trusted and able to provide the continuity of care into the terminal illness phase albeit in the hospital setting. This contrasts with participants in Keesing et al.’s9 study, who felt that they were not included in the decision-making process about where the patient would die. These carers also highlighted positive experiences of transition into the hospital context, unlike many other studies.6,8 These experiences were based on the linkages with their palliative care nurses and hospital-based nurses, and the transmission of critical patient information. That is, key aspects of the new model of care were directly experienced by carers in positive ways – the direct and continuous transfer of medical information via the patient file, and the ongoing involvement of specialist palliative nursing care in the final stages of the patient’s life.
164
Conclusion The model of care developed at Kyneton has focused on a continuum of care from hospital to home. This study demonstrated that the transition from community-based to hospital-based palliative care was an overall positive experience for these carers. They were acutely aware of the very specific aspects of communication and care that worked effectively and ineffectively for them and the patient throughout the transition. The implication for future practice is whether this model of care could be implemented in other health services that provide specialist palliative care. Further research with a larger sample of carers and a mixed-method design would assist in determining this direction for practice.
Acknowledgements The authors wish to thank the participants for sharing their experiences.
Author contributions Isabelle Hatcher (30%), Louise Harms (30%), Brigid Walker (10%), Suzanne Stokes (10%), Alison Lowe (10%), Kellie Foran (5%), and Jacqui Tarrant (5%).
References 1 Masso M, Owen A. Linkage, coordination and integration: evidence from rural palliative care. Australian Journal of Rural Health 2009; 17: 263–267.
I. HATCHER ET AL.
2 Robinson CA, Pesut B, Bottorff JL. Issues in rural palliative care: views from the countryside. The Journal of Rural Health 2010; 26: 78–84. 3 Aranda S, Milne D. Guidelines for the Assessment of Complicated Bereavement Risk in Family Members of People Receiving palliative Care. Melbourne: Centre for Palliative Care, 2000. 4 Schulman-Green D, McCorkle R, Curry L, Cherlin E, Johnson-Hurzeler R, Bradley E. At the crossroads: making the transition to hospice. Palliative and Supportive Care 2004; 2: 351–360. 5 Hudson P. How well do family caregivers cope after caring for a relative with advanced disease and how can health professionals enhance their support? Journal of Palliative Medicine 2006; 9: 694–703. 6 Steinhauser K, Clipp E, Hays J et al. To live close to a person with cancer – experiences of family caregivers. Social Work in Health Care 2012; 51: 909–926. 7 Wilkes L, White K. The family and nurse in partnership: providing day-to-day care for rural cancer patients. Australian Journal of Rural Health 2005; 13: 121–126. 8 Duggleby WD, Penz K, Leipert BD, Wilson DM, Goodridge D, Williams A. ‘I am part of the community but . . .’ The changing context of rural living for persons with advanced cancer and their families. Rural and Remote Health 2011; 11: 1733. 9 Keesing S, Rosenwax L, McNamara B. ‘Doubly deprived’: a post-death qualitative study of primary carers of people who died in Western Australia. Health and Social Care in the Community 2011; 19: 636–644. 10 Mitchell G, Nicholson C, McDonald K, Bucetti A. Enhancing palliative care in rural Australia: the residential aged care setting. Australian Journal of Primary Health 2011; 17: 95–101. 11 Birks M, Mills J. Grounded Theory: A Practical Guide. London: SAGE, 2011.
© 2014 National Rural Health Alliance Inc.
