573000 research-article2015
PMJ0010.1177/0269216315573000Palliative MedicineMitchell and Dale
Original Article
Advance Care Planning in palliative care: A qualitative investigation into the perspective of Paediatric Intensive Care Unit staff
Palliative Medicine 2015, Vol. 29(4) 371–379 © The Author(s) 2015 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/0269216315573000 pmj.sagepub.com
Sarah Mitchell1,2 and Jeremy Dale2
Abstract Background: The majority of children and young people who die in the United Kingdom have pre-existing life-limiting illness. Currently, most such deaths occur in hospital, most frequently within the intensive care environment. Aim: To explore the experiences of senior medical and nursing staff regarding the challenges associated with Advance Care Planning in relation to children and young people with life-limiting illnesses in the Paediatric Intensive Care Unit environment and opportunities for improvement. Design: Qualitative one-to-one, semi-structured interviews were conducted with Paediatric Intensive Care Unit consultants and senior nurses, to gain rich, contextual data. Thematic content analysis was carried out. Setting/participants: UK tertiary referral centre Paediatric Intensive Care Unit. Eight Paediatric Intensive Care Unit consultants and six senior nurses participated. Findings: Four main themes emerged: recognition of an illness as ‘life-limiting’; Advance Care Planning as a multi-disciplinary, structured process; the value of Advance Care Planning and adverse consequences of inadequate Advance Care Planning. Potential benefits of Advance Care Planning include providing the opportunity to make decisions regarding end-of-life care in a timely fashion and in partnership with patients, where possible, and their families. Barriers to the process include the recognition of the life-limiting nature of an illness and gaining consensus of medical opinion. Organisational improvements towards earlier recognition of life-limiting illness and subsequent Advance Care Planning were recommended, including education and training, as well as the need for wider societal debate. Conclusions: Advance Care Planning for children and young people with life-limiting conditions has the potential to improve care for patients and their families, providing the opportunity to make decisions based on clear information at an appropriate time, and avoid potentially harmful intensive clinical interventions at the end of life.
Keywords Advance Care Planning, end-of-life care, palliative care, paediatrics, Paediatric Intensive Care Units, paediatric nursing, terminal care
What is already known about the topic? •• Currently, most childhood deaths occur in hospital, commonly in intensive care. Most children and young people (CYP) who die have a pre-existing life-limiting illness. •• Decision-making about whether to continue or stop delivery of invasive intensive care interventions at the end of life presents complex moral and ethical dilemmas, especially in relation to CYP with life-limiting illnesses.
1Birmingham
Children’s Hospital, Birmingham, UK of Health Sciences, Warwick Medical School, University of Warwick, Coventry, UK
2Division
Corresponding author: Sarah Mitchell, Division of Health Sciences, Warwick Medical School, University of Warwick, Gibbet Hill Campus, Coventry CV4 7AL, UK. Email: [email protected]
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Palliative Medicine 29(4) •• Advance Care Planning (ACP) is a process by which patient and family preferences for end-of-life care, including preferred place of death, can be considered.
What this paper adds? •• This study provides an in-depth qualitative exploration of the experiences and perceptions of Paediatric Intensive Care Unit (PICU) senior doctors and nurses around the provision of care, including ACP, at the end of life to CYP with life-limiting illness. •• The results offer insight into the complexity of decision-making and the difficulties faced with ACP for this population. •• The study contributes to the growing evidence in favour of ACP to prioritise and facilitate patient and family choice at the end of life. Implications for practice, theory or policy •• This study contributes to the growing evidence base in favour of timely ACP. •• There is a need for education of healthcare professionals around recognition of life-limiting illness, palliative and end-of-life care and ACP. •• ACP is described as a process with potential benefits for those involved in complex end-of-life care decision-making, specifically regarding the delivery of invasive life-sustaining treatment. Further research is necessary to explore the benefits and barriers to ACP from the perspective of patients and families.
Introduction Around 70% of children and young people (CYP) who die in England have complex, life-limiting conditions and associated palliative care needs.1,2 The number of CYP living with these conditions is rising,3,4 making the end-of-life care for such patients an important issue to consider. The death of a child is a profound, unique and devastating event.5,6 It is well recognised that for those with lifelimiting illness, the delivery of integrated, holistic healthcare can improve patient experience at the end of life. Advance Care Planning (ACP) offers a means of eliciting patient and family choice to guide the delivery of such care during acute deteriorations in health and at the end of life.7,8 ACP is a formal process of discussion between an individual, their care providers and those close to them, which enables the recognition of preferences for care,9,10 and therefore allows patients and families to achieve some sense of control in their situation.11–13 The development of both a ‘child and family care plan’ and an ‘end-of-life care plan’ is recommended in the UK Together for Short Lives Standards.14 The importance of recognising that a condition is lifelimiting in nature,15 starting discussions early and involving CYP (where possible) and their parents in decision-making is widely acknowledged.16–18 However, these discussions can be challenging, particularly at times when the child or young person’s condition is stable and initiating decisionmaking about end-of-life care may appear premature.11,19 There is also evidence that healthcare professionals may be more ambivalent about these difficult conversations than families.13,16 Lack of openness can have negative consequences for the quality of care delivered, resulting in fear of the dying process, lack of knowledge about local services, poor communication between family members and isolation of the bereaved.20
Evidence is emerging to suggest that families facing the death of a child wish for well-coordinated healthcare, with the option of this care being delivered in the home environment.21–23 However, currently the majority of children who die, do so in hospital,2,4 most frequently in an intensive care environment.24–26 Paediatric Intensive Care Unit (PICU) is, therefore, an important setting in which to investigate current practice around ACP and the delivery of end-of-life care for CYP with life-limiting illness. The provision of PICU services has increased since the 1960s with advances in sophisticated medical interventions and technology which have changed the care of critically ill or injured children.27 PICU is an emotionally charged, high-pressure, highly technological environment.28 Children admitted to PICU are the most seriously unwell, often with complex long-term conditions which are life-limiting in nature.24,26,29 PICU staff become responsible for managing end-of-life care, including the ACP process if these discussions have not previously taken place, once intensive treatment options have been exhausted. They are faced with complex and emotive ethical dilemmas, including the withdrawal or limitation of life-sustaining interventions, which is the most common mode of death in Northern European PICUs.25,26,28,30–33 ACP and end-of-life care decision-making in the PICU environment is particularly challenging for many reasons. PICU staff often have to proceed with these discussions during an acute deterioration in a patient’s clinical condition, at a time when family members have little time to adjust and may be experiencing the early stages of a bereavement reaction, including denial and anger.34 Frequently, there are many teams of professionals involved. Situations where multi-disciplinary consensus opinion and
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Mitchell and Dale ‘collective decision-making’ cannot be achieved can cause frustration among clinical colleagues and false hope for families.35 Currently, there is a lack of consensus in approach and documentation of care plans,12,19,36,37 and evidence to support the benefits and perceived risks of formal ACP documents for patients, their families and healthcare professionals is lacking.19 There is a need to enhance the evidence base for ACP for CYP. The aim of this study was to investigate current practice in ACP and how this might be improved, by exploring the experiences and perceptions of senior PICU medical and nursing staff who are frequently involved in managing end-of-life care for CYP.
Table 1. Interview schedule. 1. 2. 3.
Methods Qualitative interviews A qualitative interview study was conducted, to elicit rich contextual data regarding participants’ experiences and perspectives around caring for CYP with life-limiting illness in the PICU. The open approach and confidential nature of the interviews allowed participants to disclose freely their thoughts and describe their experiences. The interview was semi-structured and followed an interview schedule (Table 1), which comprised open questions and a series of prompts to guide the interview, but was not rigid or exhaustive, allowing flexibility to explore important themes that became apparent during each interview. It was informed by relevant literature and underwent minor modification according to emerging findings, throughout the interview process. Interviews were conducted until the point at which no new information (data saturation) was elicited around the main themes. S.M. conducted the interviews following training in qualitative interview techniques as part of an MSc in Palliative Medicine, supervised by J.D. All interviews were conducted in a quiet room close to the PICU and were digitally recorded.
Setting The study was conducted in the PICU of a tertiary referral centre children’s hospital in the United Kingdom (Birmingham Children’s Hospital), which, with over 1400 admissions per year and 28 PICU beds at the time of this study, is one of the largest PICUs in the United Kingdom.38 Local admission criteria define that admission to the Neonatal Intensive Care Unit (NICU) occurs from labour ward or a postnatal ward only. Otherwise, all critically unwell neonates and children are admitted to the PICU. The number of deaths in the PICU in 2010 was 73, which equates to one or two deaths per week, an expected number for a PICU of this size (Standardised Mortality Ratio (SMR) of
PMJ0010.1177/0269216315573000Palliative MedicineMitchell and Dale
Original Article
Advance Care Planning in palliative care: A qualitative investigation into the perspective of Paediatric Intensive Care Unit staff
Palliative Medicine 2015, Vol. 29(4) 371–379 © The Author(s) 2015 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/0269216315573000 pmj.sagepub.com
Sarah Mitchell1,2 and Jeremy Dale2
Abstract Background: The majority of children and young people who die in the United Kingdom have pre-existing life-limiting illness. Currently, most such deaths occur in hospital, most frequently within the intensive care environment. Aim: To explore the experiences of senior medical and nursing staff regarding the challenges associated with Advance Care Planning in relation to children and young people with life-limiting illnesses in the Paediatric Intensive Care Unit environment and opportunities for improvement. Design: Qualitative one-to-one, semi-structured interviews were conducted with Paediatric Intensive Care Unit consultants and senior nurses, to gain rich, contextual data. Thematic content analysis was carried out. Setting/participants: UK tertiary referral centre Paediatric Intensive Care Unit. Eight Paediatric Intensive Care Unit consultants and six senior nurses participated. Findings: Four main themes emerged: recognition of an illness as ‘life-limiting’; Advance Care Planning as a multi-disciplinary, structured process; the value of Advance Care Planning and adverse consequences of inadequate Advance Care Planning. Potential benefits of Advance Care Planning include providing the opportunity to make decisions regarding end-of-life care in a timely fashion and in partnership with patients, where possible, and their families. Barriers to the process include the recognition of the life-limiting nature of an illness and gaining consensus of medical opinion. Organisational improvements towards earlier recognition of life-limiting illness and subsequent Advance Care Planning were recommended, including education and training, as well as the need for wider societal debate. Conclusions: Advance Care Planning for children and young people with life-limiting conditions has the potential to improve care for patients and their families, providing the opportunity to make decisions based on clear information at an appropriate time, and avoid potentially harmful intensive clinical interventions at the end of life.
Keywords Advance Care Planning, end-of-life care, palliative care, paediatrics, Paediatric Intensive Care Units, paediatric nursing, terminal care
What is already known about the topic? •• Currently, most childhood deaths occur in hospital, commonly in intensive care. Most children and young people (CYP) who die have a pre-existing life-limiting illness. •• Decision-making about whether to continue or stop delivery of invasive intensive care interventions at the end of life presents complex moral and ethical dilemmas, especially in relation to CYP with life-limiting illnesses.
1Birmingham
Children’s Hospital, Birmingham, UK of Health Sciences, Warwick Medical School, University of Warwick, Coventry, UK
2Division
Corresponding author: Sarah Mitchell, Division of Health Sciences, Warwick Medical School, University of Warwick, Gibbet Hill Campus, Coventry CV4 7AL, UK. Email: [email protected]
Downloaded from pmj.sagepub.com at UNIV OF PITTSBURGH on November 14, 2015
372
Palliative Medicine 29(4) •• Advance Care Planning (ACP) is a process by which patient and family preferences for end-of-life care, including preferred place of death, can be considered.
What this paper adds? •• This study provides an in-depth qualitative exploration of the experiences and perceptions of Paediatric Intensive Care Unit (PICU) senior doctors and nurses around the provision of care, including ACP, at the end of life to CYP with life-limiting illness. •• The results offer insight into the complexity of decision-making and the difficulties faced with ACP for this population. •• The study contributes to the growing evidence in favour of ACP to prioritise and facilitate patient and family choice at the end of life. Implications for practice, theory or policy •• This study contributes to the growing evidence base in favour of timely ACP. •• There is a need for education of healthcare professionals around recognition of life-limiting illness, palliative and end-of-life care and ACP. •• ACP is described as a process with potential benefits for those involved in complex end-of-life care decision-making, specifically regarding the delivery of invasive life-sustaining treatment. Further research is necessary to explore the benefits and barriers to ACP from the perspective of patients and families.
Introduction Around 70% of children and young people (CYP) who die in England have complex, life-limiting conditions and associated palliative care needs.1,2 The number of CYP living with these conditions is rising,3,4 making the end-of-life care for such patients an important issue to consider. The death of a child is a profound, unique and devastating event.5,6 It is well recognised that for those with lifelimiting illness, the delivery of integrated, holistic healthcare can improve patient experience at the end of life. Advance Care Planning (ACP) offers a means of eliciting patient and family choice to guide the delivery of such care during acute deteriorations in health and at the end of life.7,8 ACP is a formal process of discussion between an individual, their care providers and those close to them, which enables the recognition of preferences for care,9,10 and therefore allows patients and families to achieve some sense of control in their situation.11–13 The development of both a ‘child and family care plan’ and an ‘end-of-life care plan’ is recommended in the UK Together for Short Lives Standards.14 The importance of recognising that a condition is lifelimiting in nature,15 starting discussions early and involving CYP (where possible) and their parents in decision-making is widely acknowledged.16–18 However, these discussions can be challenging, particularly at times when the child or young person’s condition is stable and initiating decisionmaking about end-of-life care may appear premature.11,19 There is also evidence that healthcare professionals may be more ambivalent about these difficult conversations than families.13,16 Lack of openness can have negative consequences for the quality of care delivered, resulting in fear of the dying process, lack of knowledge about local services, poor communication between family members and isolation of the bereaved.20
Evidence is emerging to suggest that families facing the death of a child wish for well-coordinated healthcare, with the option of this care being delivered in the home environment.21–23 However, currently the majority of children who die, do so in hospital,2,4 most frequently in an intensive care environment.24–26 Paediatric Intensive Care Unit (PICU) is, therefore, an important setting in which to investigate current practice around ACP and the delivery of end-of-life care for CYP with life-limiting illness. The provision of PICU services has increased since the 1960s with advances in sophisticated medical interventions and technology which have changed the care of critically ill or injured children.27 PICU is an emotionally charged, high-pressure, highly technological environment.28 Children admitted to PICU are the most seriously unwell, often with complex long-term conditions which are life-limiting in nature.24,26,29 PICU staff become responsible for managing end-of-life care, including the ACP process if these discussions have not previously taken place, once intensive treatment options have been exhausted. They are faced with complex and emotive ethical dilemmas, including the withdrawal or limitation of life-sustaining interventions, which is the most common mode of death in Northern European PICUs.25,26,28,30–33 ACP and end-of-life care decision-making in the PICU environment is particularly challenging for many reasons. PICU staff often have to proceed with these discussions during an acute deterioration in a patient’s clinical condition, at a time when family members have little time to adjust and may be experiencing the early stages of a bereavement reaction, including denial and anger.34 Frequently, there are many teams of professionals involved. Situations where multi-disciplinary consensus opinion and
Downloaded from pmj.sagepub.com at UNIV OF PITTSBURGH on November 14, 2015
373
Mitchell and Dale ‘collective decision-making’ cannot be achieved can cause frustration among clinical colleagues and false hope for families.35 Currently, there is a lack of consensus in approach and documentation of care plans,12,19,36,37 and evidence to support the benefits and perceived risks of formal ACP documents for patients, their families and healthcare professionals is lacking.19 There is a need to enhance the evidence base for ACP for CYP. The aim of this study was to investigate current practice in ACP and how this might be improved, by exploring the experiences and perceptions of senior PICU medical and nursing staff who are frequently involved in managing end-of-life care for CYP.
Table 1. Interview schedule. 1. 2. 3.
Methods Qualitative interviews A qualitative interview study was conducted, to elicit rich contextual data regarding participants’ experiences and perspectives around caring for CYP with life-limiting illness in the PICU. The open approach and confidential nature of the interviews allowed participants to disclose freely their thoughts and describe their experiences. The interview was semi-structured and followed an interview schedule (Table 1), which comprised open questions and a series of prompts to guide the interview, but was not rigid or exhaustive, allowing flexibility to explore important themes that became apparent during each interview. It was informed by relevant literature and underwent minor modification according to emerging findings, throughout the interview process. Interviews were conducted until the point at which no new information (data saturation) was elicited around the main themes. S.M. conducted the interviews following training in qualitative interview techniques as part of an MSc in Palliative Medicine, supervised by J.D. All interviews were conducted in a quiet room close to the PICU and were digitally recorded.
Setting The study was conducted in the PICU of a tertiary referral centre children’s hospital in the United Kingdom (Birmingham Children’s Hospital), which, with over 1400 admissions per year and 28 PICU beds at the time of this study, is one of the largest PICUs in the United Kingdom.38 Local admission criteria define that admission to the Neonatal Intensive Care Unit (NICU) occurs from labour ward or a postnatal ward only. Otherwise, all critically unwell neonates and children are admitted to the PICU. The number of deaths in the PICU in 2010 was 73, which equates to one or two deaths per week, an expected number for a PICU of this size (Standardised Mortality Ratio (SMR) of
