SEARCH

SEARCH BY CITATION

Keywords:

  • nurse managers;
  • organisational challenges;
  • paediatric;
  • palliative care;
  • review

Abstract

  1. Top of page
  2. Abstract
  3. Introduction
  4. The three world view: a conceptual model
  5. Study aim
  6. Methodology
  7. Analysis
  8. Results
  9. Discussion
  10. Conclusions
  11. Sources of funding
  12. Ethical approval
  13. References

Aim

This literature review offers a response to the current paediatric palliative care literature that will punctuate the need for a framework (i.e. the three world view) that can serve as an evaluative lens for nurse managers who are in the planning or evaluative stages of paediatric palliative care programmes.

Background

The complexities in providing paediatric palliative care extend beyond clinical practices to operational policies and financial barriers that exist in the continuum of services for patients.

Evaluation

This article offers a review of the literature and a framework in order to view best clinical practices, operational/policy standards and financial feasibility when considering the development and sustainability of paediatric palliative care programmes.

Key aspects

Fifty-four articles were selected as representative of the current state of the literature as it pertains to the three world view (i.e. clinical, operational and financial factors) involved in providing paediatric palliative care.

Conclusion

In developing efficient paediatric palliative care services, clinical, operational and financial resources and barriers need to be identified and addressed.

Implications for nursing management

Nursing management plays a crucial role in addressing the clinical, operational and financial needs and concerns that are grounded in paediatric palliative care literature.


Introduction

  1. Top of page
  2. Abstract
  3. Introduction
  4. The three world view: a conceptual model
  5. Study aim
  6. Methodology
  7. Analysis
  8. Results
  9. Discussion
  10. Conclusions
  11. Sources of funding
  12. Ethical approval
  13. References

It is estimated that on any given day in America, between 5000 and 8600 children are eligible for and could benefit from care that acknowledges their limited life expectancy and severity of illness (Feudtner et al. 2001, Friebert 2009). Over 500 000 infants and children cope each year with life-threatening or life-limiting illnesses that are characterised by uncertain illness trajectories (Hynson et al. 2003, Himelstein et al. 2004). The International Children's Palliative Care Network (International Children's Palliative Care Network (ICPCN)'s 2010) has defined life-limiting conditions as those for which there is no reasonable hope of cure and from which children or young people will die; while life-threatening conditions are those for which curative treatment may be feasible but can fail. Many infants and children suffer from advancing illness without having access to services that relieve pain, reduce symptoms and address psychosocial concerns of the child and family (American Academy of Pediatrics (AAP) (2000), Galloway & Yaster 2000, Wolfe et al. 2000, Contro et al. 2004, Institute of Medicine (IOM) (2003), Himelstein et al. 2004, Rushton 2004). No child should have to go through a life-threatening illness without a team of providers that have training in paediatric palliative care.

Paediatric palliative care was first introduced by the World Health Organization (WHO) in 1990 and is a relatively new specialty developed in response to inadequacies in treatment for children and their families facing life-limiting and life-threatening illnesses. Palliative care is a comprehensive approach that addresses physical, emotional, social and spiritual elements, with a focus on coordination of care, quality of life for the child and support for the family beginning at diagnosis and continuing throughout treatment, death and bereavement (Institute of Medicine (IOM) 2003, World Health Organization (WHO) 2004, National Hospice and Palliative Care Organization (NHPCO) (2008). National agencies have published reports and practice guidelines indicating that paediatric palliative care should be integrated with curative care, offered to patients with a variety of diseases, and extended from the point of diagnosis onward to enhance the quality of life throughout the illness trajectory (American Academy of Pediatrics (AAP) 2000, Institute of Medicine (IOM) 2003, Browning & Solomon 2005, National Hospice & Palliative Care Organization (NHPCO) 2008).

Despite the need to care for children with serious conditions, access to integrated curative and palliative care for children is limited (Institute of Medicine (IOM) 2003, Himelstein 2006). In addition, professional literature that could assist nurse managers and leaders to gain reputable guidance in promising practices is also lacking (Kumar 2011). This article provides an attempt to fill the gap in literature that includes a clear definition and standards of care for paediatric palliative care specifically in the areas of clinical practice, operational procedures and financial resources and management.

The three world view: a conceptual model

  1. Top of page
  2. Abstract
  3. Introduction
  4. The three world view: a conceptual model
  5. Study aim
  6. Methodology
  7. Analysis
  8. Results
  9. Discussion
  10. Conclusions
  11. Sources of funding
  12. Ethical approval
  13. References

The common goals of palliative care can be organised into the following three domains (Feudtner 2007): (1) problem-solving and decision-making activities that include identifying the problems for the patient and those caring for the patient, clarifying the goals and evaluating the treatment plan in the light of these goals; (2) interventions that address the physical, mental, emotional, social, cultural, spiritual and existential needs of the individual; (3) logistical efforts, which includes the coordination and financial aspects of services. To assess the functionality of these domains, the three world view of C.J. Peek (Peek & Heinrich 2000, Patterson et al. 2002) will be utilised (see Figure 1) and serve as a conceptual model to help nursing managers and leaders better understand the functions needed to develop and maintain successful paediatric palliative care programmes in their institutions.

image

Figure 1. Literature synthesis methodology.

Download figure to PowerPoint

The clinical, operational and financial views are called ‘worlds’ because people trained in one discipline may experience other disciplines as foreign worlds. Peek and Heinrich (2000) asserted that the clinical, operational and financial worlds that comprise programmes each have their own respective internal logic and language and must mutually benefit one another in order for a programme to be of high quality and successful (Patterson et al. 2002). The logic and language used within the clinical world is based on providing quality patient care. In the operational world, comprising administration and policy, the focus is on goals that contribute to an efficient, functional system. The financial world seeks to utilise resources and to promote value toward overall accounting goals. To assist in delineating the three worlds, Peek and Heinrich (2000) use guiding questions that are prevalent for each world. For example, the clinical world asks the questions: ‘What care is called for/needed? Is it high quality?’ The clinical world is focused on attaining goals of ‘quality and elegance’ in the clinical interactions between patients and the healthcare team. The operational world asks: ‘What will it take to accomplish care? Is it well executed?’ The operational world is focused on the processes that promote ‘efficiency and facility’ of the healthcare system. On the other hand, the financial world asks ‘How will care best use resources? Is it good value?’ The financial world is focused on the goals of ensuring an appropriate price and a good economic value for the healthcare institution.

According to Peek's model (Peek & Heinrich 2000), nursing managers and leaders must be cognisant of the interplay between these three dimensions in order to offer successful paediatric palliative care, as the differences among each world may cause tension and misunderstanding between people trained and working primarily in one of the worlds. Differences occur between disciplines because individuals speak different languages (e.g. clinical worlds include conversations about patient–provider communication, while financial worlds include conversations between billing specialists and reimbursers for services), ask different questions, seek different outcomes and employ different values and principles (Putnam 1990). The differences in the focus and goals of each world may cause tension and misunderstanding between people who have been trained and work primarily from one of the worldviews and in isolation from the other domains. This article is an integrated review of paediatric palliative care literature using this three-dimensional approach to reveal the clinical, operational and financial resources and barriers that converge to promote or prevent quality systems of paediatric palliative care.

Study aim

  1. Top of page
  2. Abstract
  3. Introduction
  4. The three world view: a conceptual model
  5. Study aim
  6. Methodology
  7. Analysis
  8. Results
  9. Discussion
  10. Conclusions
  11. Sources of funding
  12. Ethical approval
  13. References

For a healthcare system to be successful, Peek and Heinrich (2000) stated that actions within the clinical, operational and financial worlds must align and that no one ‘world’ can be perceived as more important than another (Patterson et al. 2002). Viable models of care, efficient economic principles and essential clinical training are all needed to bring about change in the current medical system for paediatric palliative care. Therefore, the primary aim of this literature review is to offer a response to the current paediatric palliative care literature that will punctuate the need for a framework (i.e. the three world view) that can serve as an evaluative lens for current paediatric palliative care programmes and as a collaborative, yet patient-centred, approach for nurse managers who are in the planning stages of such programmes. The final focus of this article is to offer a set of recommendations pertaining to the need for integration between the three world views of all paediatric palliative care programmes.

Methodology

  1. Top of page
  2. Abstract
  3. Introduction
  4. The three world view: a conceptual model
  5. Study aim
  6. Methodology
  7. Analysis
  8. Results
  9. Discussion
  10. Conclusions
  11. Sources of funding
  12. Ethical approval
  13. References

In order better to understand the definition, standards and complexities of paediatric palliative care, an integrative literature review was conducted. This methodology combines qualitative and quantitative studies as well as theoretical and discussion pieces in order to reflect the philosophical base, history and current state of knowledge pertaining to a chosen topic (Whittemore & Knafl 2005). Using the Medline, PsycINFO, PubMed and Cumulative Index to Nursing and Allied Health Literature (CINAHL) databases for articles published during the period January 2000 to September 2011. The search strategy was guided by a preliminary literature review that identified relevant terms to use as stems: palliative, end-of-life and hospice. All stems were combined with the following: children, pediatrics and paediatric.

This initial search produced 3985 articles. After the removal of duplicates, the titles and abstracts of articles were retrieved and screened for the presence of the following inclusion criteria: focused on children and/or adolescents, written in English, and including information on issues relevant to the provision of paediatric palliative care in the USA (however, articles from countries outside the USA were reviewed to gain a better understanding the international aspects of paediatric palliative care). A total of 905 titles met the inclusion criteria. Available abstracts for these articles were then screened and excluded if they focused on medical interventions, clinical trials, disease/symptom management and treatment, adult palliative care issues, and infant, child or parental psychosocial issues. This led to the selection of 134 sources that were retrieved and read fully for further screening to determine inclusion of clinical, operational and financial issues relevant to the provision of paediatric palliative care. Of the 134 articles reviewed, 54 articles were selected as representative of the current state of the literature as it pertains to the three world view (i.e. clinical, operational and financial factors) in providing paediatric palliative care.

In addition to these articles, three books/handbooks were reviewed (Cassidy & Fleischman 1996, Institute of Medicine (IOM) 2001, 2003). Additionally, the websites of a number of state, national, and international websites were reviewed that included: NHPO and the WHO. Overall, the review of the edited books/handbooks (and accompanied referenced sources), database searches and internet searches yielded the names of several authors who were consistently referenced as key contributors to research on paediatric palliative care. As a result, the search was extended to include these author names to identify additional related sources. Given the focus of this review, an exhaustive search was completed until it was unlikely that new information would be acquired from additional searches. See Figure 1 for an outline of the search strategy.

Analysis

  1. Top of page
  2. Abstract
  3. Introduction
  4. The three world view: a conceptual model
  5. Study aim
  6. Methodology
  7. Analysis
  8. Results
  9. Discussion
  10. Conclusions
  11. Sources of funding
  12. Ethical approval
  13. References

According to Whittemore and Knafl (2005) the purpose of an integrative review is to synthesise all relevant findings in order to gain a broad understanding of a subject, therefore a quality appraisal of rigour for each individual study or article is not required. At this stage of the review, a deductive approach was used in order to organise findings around the clinical, operational and financial domains. In order to reduce bias, the first author reviewed titles and abstracts using the inclusion and exclusion criteria and the selected articles were then agreed upon through consensus with the second author. All sources were then divided into subgroups and analysed sequentially (Whittemore & Knafl 2005). The ideas that emerged from the sources were discussed in detail by the first and second authors and designated into common themes or intellectual bins (Miles & Huberman 1994). The results of this search strategy are organised below using the three world view framework, consisting of clinical, operational and financial factors (see Figure 2).

image

Figure 2. An image of the three world view (adapted from Peek & Heinrich 2000).

Download figure to PowerPoint

Results

  1. Top of page
  2. Abstract
  3. Introduction
  4. The three world view: a conceptual model
  5. Study aim
  6. Methodology
  7. Analysis
  8. Results
  9. Discussion
  10. Conclusions
  11. Sources of funding
  12. Ethical approval
  13. References

Once findings were organised around clinical, operational and financial domains, an inductive approach was used in order to identify the themes described below that were recurrent throughout the literature. The following themes were identified within the literature: (1) defining palliative care, (2) uniqueness of providing palliative care to children, (3) lack of staff education, (4) coordination and communication among staff, (5) eligibility criteria, and (6) payment and reimbursement (Table 1).

Table 1. Organisation of articles according to three world view
 ThemesArticles
Clinical factorsDefining palliative careInstitute of Medicine (IOM) (2003), Hupcey et al. (2009), National Hospice and Palliative Care Organization (NHPCO) (2009), Jones and Carter (2010)
Uniqueness of providing palliative care to childrenRushton (1992, 2000, 2004), American Academy of Pediatrics (AAP) (2000), Galloway and Yaster (2000), Hamric (2000), Kaplan (2000), Breen et al. (2001), Contro et al. (2004), Rushton and Caitlin (2002), Rushton et al. (2002), Institute of Medicine (IOM) (2003), Himelstein (2006), Knapp (2009), National Hospice and Palliative Care Organization (NHPCO) (2009), International Children's Palliative Care Network (ICPCN)'s (2010)
Operational factorsLack of staff educationCassidy and Fleischman (1996), Bartel et al. (2000), Burns et al. (2000, 2001), Sahler et al. (2000), Wolfe et al. (2000), Gowan (2003), Institute of Medicine (IOM) (2003), Amery and Lapwood (2004), Andresen et al. (2004), Burns and Rushton (2004), Engler et al. (2004), Himelstein et al. (2004), Sullivan et al. (2004), Browning and Solomon (2005), Barnard et al. (2006), Baker et al. (2007), Weigel et al. (2007), Meadors and Lamson (2008), Sheetz and Bowman (2008), Dickens (2009), Kersun et al. (2009), Michelson et al. (2009), Klick and Hauer (2010), Yazdani et al. (2010), Yang et al. (2011)
Coordination and communication among staffTolle et al. (2000), Burns et al. (2001), Feudtner et al. (2002, 2003), Shah et al. (2002), Institute of Medicine (IOM) (2003), Carroll et al. (2007), Meier and Beresford (2007), Lee and Dupree (2008)
Financial factorsEligibility criteriaLevetown (1996), American Academy of Pediatrics (AAP) (2000), Wolfe et al. (2000), Burns et al. (2001), Rushton and Caitlin (2002), Lindley et al. (2009), Morgan (2009)
Payment and reimbursementInstitute of Medicine (IOM) (2003), Friebert (2009), Knapp et al. (2009)

Clinical factors

Defining palliative care

The results from the review of the literature suggest that a common challenge for clinicians, patients and family members in understanding the clinical purpose of palliative care is, in part, due to its often being used interchangeably with the term hospice care (Hupcey et al. 2009, Jones & Carter 2010). The primary differentiation between these two services is based on the focus of care. In hospice care, the focus has typically been on comfort care in the light of impending death, whereas palliative care has focused on comfort care while simultaneously providing curative treatments (Institute of Medicine (IOM) 2003). Hospice care can be offered in patient's homes, hospice centres, hospitals, nursing homes and other long-term care facilities and is directly related to those who are terminally ill. Patients receiving palliative care, on the other hand, do not need to be terminally ill to access these services; palliative care can be provided at any time during a patient's illness. It can be initiated at the time of diagnosis and simultaneously offered alongside curative or other life-prolonging treatments (World Health Organization (WHO) 2004). Ideally, palliative care segues into hospice care if the illness progresses and death becomes imminent (National Hospice & Palliative Care Organization (NHPCO) 2009).

Uniqueness of providing palliative care to children

Another challenge that became clear through the review of the literature was understanding the significant differences between palliative care for children and adults that need to be taken into consideration when planning care services (Meier & Beresford 2007, Knapp 2009, International Children's Palliative Care Network (ICPCN)'s 2010). Caring for children with life-limiting conditions requires understanding of their rapidly changing physical, emotional, social, cognitive and spiritual development (Rushton 2004), which means that their medical and social needs shift, as does their understanding of disease and death. Children are often resilient in the face of disease and treatment, which can cause them to receive more aggressive treatment compared with adults at the end of life (National Hospice & Palliative Care Organization (NHPCO) 2009). Paediatric palliative care is further complicated by the fact that many local communities do not have the experienced professionals they need to evaluate and treat rare childhood conditions. Additionally, the lack of local resources often results in children and their families travelling long distances for treatment, which separates them from their primary social support systems, threatens to disrupt one or both parents' employment and insurance coverage, and strains family relationships and finances.

Another unique quality of providing palliative care to the paediatric population denoted in the literature included the uncertainty of treatment outcomes in the paediatric population. Unsurprisingly, denial by parents, family members and medical professionals has influenced the perspectives of the possibility of a child's death (Rushton 2000, Rushton & Caitlin 2002). Rare medical conditions have further complicated matters for a medical team, because it may be even more difficult to predict an illness trajectory and disease progression for a condition that is less familiar to the team (American Academy of Pediatrics (AAP) 2000, Institute of Medicine (IOM) 2003). Challenges have also included ethical and legal issues surrounding the uncertain prognosis and conflicts between members of the medical team and family regarding what is in the best interest of the patient (Breen et al. 2001, Rushton et al. 2002). Knowing when to introduce palliative care is difficult to determine, as the distinctions between curative and palliative care are significant and palliative care is easily delayed due to attempts to explore all options for a cure before considering palliative care. These ethical dilemmas of care can precipitate moral distress, caregiver suffering and grief (Hamric 2000, Kaplan 2000).

Operational factors

Some of the operational barriers that became apparent through this review of the literature with regard to providing quality paediatric palliative care include deficiencies in minimum care standards, availability of appropriate staff who are experienced in paediatric palliative care, efficient communication between patient, family, staff and community resources, and the present systems of care that address the biopsychosocial–spiritual needs of children.

Lack of staff education

Another impact on the provision of paediatric palliative care has been the training of most health care providers in dealing with the issues related to the possibility of death in the paediatric population (Wolfe et al. 2000, Gowan 2003, Institute of Medicine (IOM) 2003, Andresen et al. 2004, Himelstein et al. 2004, Baker et al. 2007). Health professionals face multiple and complex challenges in the provision of palliative care to children and their families, including inadequate preparation and guidance for caring for dying children and managing the ethical dilemmas that can arise during the provision of such care (Cassidy & Fleischman 1996, Bartel et al. 2000, Burns et al. 2000, Sahler et al. 2000, Amery & Lapwood 2004, Burns & Rushton 2004, Engler et al. 2004, Yazdani et al. 2010). Based on our search results, it seemed that physicians and nurses seldom received the training and opportunities to practise the skills necessary for communicating effectively with dying children and their families (Kersun et al. 2009, Sahler et al. 2000, Sheetz & Bowman 2008, Yang et al. 2011). Palliative care is not adequately addressed in the training of physicians, due to a lack of time and a knowledgeable faculty and mentors (Sullivan et al. 2004, Dickens 2009, Michelson et al. 2009). Additionally, the roles of health professionals who provide direct care to infants and children with life-threatening illnesses are demanding. Healthcare clinicians must possess the qualities and skills to offer compassion and communication with patients and their families (Burns et al. 2001, Browning & Solomon 2005, Barnard et al. 2006, Klick & Hauer 2010) in addition to the provision of physical care. All the while, these healthcare professionals are at risk for burnout and increased turnover rates that can result from witnessing the severe or chronic pain and suffering of children and their families (Weigel et al. 2007, Lee & Dupree 2008, Meadors & Lamson 2008).

Coordination and communication among staff

Coordination of care and communication among team members was cited in the literature as often lacking in paediatric palliative care (Tolle et al. 2000, Burns et al. 2001, Carroll et al. 2007). When the recipient of palliative care is a child, the need for hospital and community collaboration is significant as most children who struggle with complex chronic conditions are hospitalised in the months or weeks leading up to their deaths (Feudtner et al. 2003). In recent years, a greater proportion of these children have been returning home to die (Feudtner et al. 2002), but most community-based hospice/home care agencies that provide palliative or end-of-life services are oriented toward the care of adults. To further complicate matters, children who live in rural areas have even fewer resources to care with limited access to specialty care (Shah et al. 2002). The IOM report When Children Die (2003) states:

‘When the child and family return home, they may have to rely on professionals and providers with limited experience in caring for children with advanced illnesses or providing palliative and end-of-life care. The coordination, continuity, and quality of a child's care may suffer as a result’. (p. 187)

The health disparities for children in rural communities must be a healthcare priority, such that they can have access to palliative care in an equitable and safe manner.

Financial factors

Eligibility criteria, payment and reimbursement

The research pertaining to the financial factors brought forth an area with some of the greatest challenges; the majority of children who die have not had the benefit of receiving palliative care services due to financial issues (Knapp et al. 2009, Lindley et al. 2009). These concerns have included significant reimbursement obstacles (Wolfe et al. 2000, Burns et al. 2001). A significant barrier to providing paediatric palliative care has been the lack of appropriate eligibility criteria, which has determined who should receive palliative care (American Academy of Pediatrics (AAP) 2000, Rushton & Caitlin 2002). In the adult population, the patient must be considered terminal and in the last 6 months of life to qualify for palliative or hospice care programmes. These requirements do not work well in the paediatric setting, as the illness trajectory to death is often unpredictable for children and they are often still receiving curative treatment attempts up to the time of death (Morgan 2009).

If impending death is used to determine the appropriateness of palliative care, then this often results in children accessing hospice resources when they are very near death rather than addressing the needs of the child and family members earlier in the course of the illness (Feudtner et al. 2009). These regulations have muddied the referral process for palliative care providers who are held responsible for deeming the child's death to be within 6 months (or other specified amount of time) and thus prohibiting the child from receiving beneficial palliative care services.

Payment and reimbursement models for paediatric palliative care are complex and often not adequate for most paediatric patients. Children who are insured are often under a variety of private and state insurance plans that can have significant variations in coverage and do not share the same consistency of palliative options offered to adults (Friebert 2009). Additionally, children who receive palliative care often live longer than adults who receive palliative care, which can result in them reaching their benefit caps faster and placing the financial burden of care on their families (Friebert 2009). Lack of proper financing options is a real concern and punctuated by the IOM because it has resulted in under-treatment, over-treatment, inappropriate transitions between settings of care, inadequate coordination of care and a poor overall quality of care (Institute of Medicine (IOM) 2003).

Discussion

  1. Top of page
  2. Abstract
  3. Introduction
  4. The three world view: a conceptual model
  5. Study aim
  6. Methodology
  7. Analysis
  8. Results
  9. Discussion
  10. Conclusions
  11. Sources of funding
  12. Ethical approval
  13. References

The aim of this literature review was to provide an evaluative framework in response to the current needs of paediatric palliative care implementation. The three world view (Peek & Heinrich 2000) was used as an evaluative lens for nurse managers and administrators to consider as they carry out planning, implementation and evaluative duties. Through this integrative review, challenges in clinical, operational and financial domains were raised that, if not addressed, would cause the programme to fail (Peek & Heinrich 2000, Patterson et al. 2002). To meet these challenges, it is important for nurse managers to consider the clinical, operational and financial issues that relate to the provision of paediatric palliative care in their home institution and local community.

Clinical recommendations and implications for nursing management

While hospice and palliative care are terms that are often used interchangeably and may share a similar philosophy, it is crucial to understand the distinct differences and principles between the two entities (Himelstein 2006). For nurse managers, a primary endeavour in the implementation of a paediatric palliative care programme would be to provide clarifying education around the role of palliative care, with an emphasis on providing it alongside curative therapies and including children with chronic and life-threatening conditions throughout the disease trajectory, rather than just at end of life (American Academy of Pediatrics (AAP) 2000, World Health Organization (WHO) 2004, Himelstein 2006). While research shows that families report increased satisfaction with overall care and decreased emotional distress when they are involved with a palliative care team (Tan et al. 2006, Duncan et al. 2007, Lee & Dupree 2008, Wolfe et al. 2008), many healthcare professionals, including nurses, are not adequately trained to provide palliative care services to children and their families. Also, families of children are often ill-prepared for potential death and the crises that may occur during the course of many life-limiting illnesses (Wolfe et al. 2000, Gowan 2003, Institute of Medicine (IOM) 2003, Andresen et al. 2004, Himelstein et al. 2004, Baker et al. 2007).

To address these gaps, it is recommended that palliative care be included in the curricula of medical professionals at all levels of education and include addressing family communication needs related to issues of quality of life; explanations of diagnosis, prognosis and treatment options; overall decision-making; and explanation of the potential side effects from treatments that may offer little to no potential for benefit. Additional education is needed for medical staff regarding the assessment and management of pain and other distress that may be impacting the quality of life. The Initiative for Pediatric Palliative Care (IPPC) (Browning & Solomon 2005) is an educational curriculum that was developed to train staff from children's hospitals and paediatric units about these issues that could be utilised to provide the education suggested.

The impact of a child diagnosed with a life-limiting illness has a significant psychosocial impact on the entire family and support services should include the identification and coordination of culturally appropriate bereavement services to address these issues (American Academy of Pediatrics (AAP) 2000, Wolfe et al. 2000, Institute of Medicine (IOM) 2003, Contro et al. 2004, Himelstein et al. 2004, Rushton 2004).

Also, due to the increased burnout rates of healthcare professionals in paediatric palliative care, nurse managers can address issues of productivity, turnover and quality of care by implementing supportive services to address the psychosocial impact on nursing and interprofessional staff (Wright 2004). By addressing gaps in education, facilitating appropriate communication between hospital and community care networks and coordinating psychosocial services for family members and professional staff, the nurse manager can support and guide the nursing staff in implementing quality clinical care for paediatric palliative care patients.

Operational recommendations and implications for nursing management

Children with life-limiting illnesses often require complex care from multiple providers that may bring them face-to-face with the lack of communication and coordination among health and social services that so often exists in today's healthcare system (American Academy of Pediatrics (AAP) 2000, Institute of Medicine (IOM) 2003, Browning & Solomon 2005, National Hospice & Palliative Care Organization (NHPCO) 2008). Many of the operational barriers in paediatric palliative care exist due to the lack of coordination in systems of care (Institute of Medicine (IOM) 2003). Coordination of care and collaboration among many disciplines along the care continuum is crucial for optimising the utilisation of palliative care services and, more importantly, patient and family satisfaction with their child's overall health care treatment (Hinds et al. 2005, Hays et al. 2006). According to family members, important aspects of palliative care include ample access to members of the care team, good communication between family members and medical staff, and overall care coordination (Meyer et al. 2006). Since paediatric palliative care patients typically require community-based care in conjunction with their inpatient stays (Institute of Medicine (IOM) 2003), nurse leaders play a pivotal role in promoting engagement between nurses in the community and nurses in the home medical institution in order to address issues of quality care and transition. In order to maximise treatment goals and services, palliative care programmes should meet the needs of children with life-limiting illnesses by integrating palliative care at the time of diagnosis and throughout the disease trajectory, both in the hospital setting and in their home community. Nurse managers and leaders in each institution need to assist in establishing systems of care to meet the operational needs of staff in establishing appropriate protocols and to provide the necessary resources needed to sustain a paediatric palliative care programme. As a first step in this process, nurse managers and leaders can elicit staff members' contributions regarding process improvements and ideas for innovation as an important first step in implementing appropriate paediatric palliative care standards. In addition, nurse managers can assist in facilitating healthcare professionals from a variety of care systems, including hospitals, hospices, home health agencies, professional societies, government agencies and others to work together to develop and implement further guidelines and procedures for more efficient coordination between hospital and home resources. Appropriate research into these efforts and implementation of evidence-based guidelines should also be conducted to ensure the provision of integrated, seamless care and services wherever care is provided.

Financial recommendations and implications for nursing management

Due to the uncertain illness trajectories of many childhood illnesses, eligibility criteria are not appropriate for children as evidenced by the fact that 0.4% of hospice patients in the United States are paediatric and young adult patients (National Hospice & Palliative Care Organization (NHPCO) 2012). The majority of children who die in the United States do so in hospital settings (Institute of Medicine (IOM) 2003). These and many more children and families could benefit from paediatric palliative care, however, services are not easily accessible or may be under-utilised due to financial insurance coverage and payment policies that do not adequately cover palliative services (Institute of Medicine (IOM) 2003). Funding for paediatric palliative care services is a significant challenge and, while research in the adult population has demonstrated that palliative care prolongs patient life, improves quality of life and decreases hospital costs (Morrison et al. 2008, Temel et al. 2010), more research is needed regarding the estimated costs of providing palliative care to children (Institute of Medicine (IOM) 2003, Friebert 2009). To provide timely and adequate services to children with life-limiting conditions, public and private insurers must add paediatric palliative care to their coverage plans and ensure that the eligibility requirements and benefits are designed especially for children. This cannot happen without changes at the policy level. In addition, financial policy reforms are needed to promote the integration of palliative care from the time of diagnosis through to death and into bereavement.

While change is called for on a broad scale, a financial consideration that can be addressed on a localised scale includes the development of evaluation frameworks that demonstrate impact and outcomes of paediatric palliative care. Nurse managers can be a critical advocate in documenting efficient and effective strategies by collecting information as it relates to outcomes when palliative care was provided in comparison with when it was not provided and then sharing the sum outcomes to administrators, financial entities, policy makers and legislators to inform and influence them along the continuum of stakeholders involved in the financial domain.

Clearly, the literature is replete with examples of the many barriers that exist in the provision of paediatric palliative care. These challenges can be re-framed as opportunities for change and collaboration among healthcare professionals and approached with the consideration of the three worlds of healthcare: clinical, operational and financial. While there is little research regarding the collaboration of professionals from each of these systems, the assessment of these factors should be a priority for nurse managers and leaders as they consider how palliative care services for young patients and their families can be improved as clinical practices, operational processes and financial issues are explored and addressed (Table 1).

Conclusions

  1. Top of page
  2. Abstract
  3. Introduction
  4. The three world view: a conceptual model
  5. Study aim
  6. Methodology
  7. Analysis
  8. Results
  9. Discussion
  10. Conclusions
  11. Sources of funding
  12. Ethical approval
  13. References

A review of the literature suggested that paediatric palliative care is a complex organisational programme that requires collaboration among both individuals and systems across multiple levels of the healthcare context. Success depends on paying attention to operational, financial and clinical issues as a lack of attention to any one of these areas can result in moving closer to failure than success. Hospital staff, policy makers, providers and researchers must be conscious of the various systems that influence the provision of paediatric palliative care and work to address the needs across the care continuum. As the number of children with critical chronic and life-limiting diseases increases, the unique needs of a hospital concerning the clinical, operational and financial worlds must be understood and unified as to the course of action necessary for success. By focusing attention on what resources are required in each of these worlds, nurse managers can create a quality paediatric palliative care programme that includes standards of care set forth by a foundational organisation and provides compassionate, safe and excellent nursing care.

Ethical approval

  1. Top of page
  2. Abstract
  3. Introduction
  4. The three world view: a conceptual model
  5. Study aim
  6. Methodology
  7. Analysis
  8. Results
  9. Discussion
  10. Conclusions
  11. Sources of funding
  12. Ethical approval
  13. References

Approval from the Institutional Review Board for human subjects research was granted from East Carolina University.

References

  1. Top of page
  2. Abstract
  3. Introduction
  4. The three world view: a conceptual model
  5. Study aim
  6. Methodology
  7. Analysis
  8. Results
  9. Discussion
  10. Conclusions
  11. Sources of funding
  12. Ethical approval
  13. References

References included in the synthesis are marked with an asterisk *.

  • *American Academy of Pediatrics (AAP). (2000) Committee on bioethics and committee on hospital care: palliative care for children. Pediatrics 106 (2), 351357.
  • *Amery J. & Lapwood S. (2004) A study into the educational needs of children's hospice doctors: a descriptive quantitative and qualitative survey. Palliative Medicine 18, 727733.
  • *Andresen E.M., Seecharan G.A. & Toce S.S. (2004) Provider perceptions of child deaths. Archives of Pediatrics and Adolescent Medicine 158 (5), 430435.
  • *Baker J.N., Torkildson C., Baillargeon J.G., Olney C.A. & Kane J.R. (2007) National survey of pediatric residency program directors and residents regarding education in palliative medicine and end-of-life care. Journal of Palliative Medicine 10, 420429.
  • *Barnard A., Hollingum C. & Hartfiel B. (2006) Going on a journey: understanding palliative care nursing. International Journal of Palliative Nursing 12 (1), 612.
  • *Bartel D.A., Engler A.J., Natale J.E., Misra V., Lewin A.B. & Joseph J.G. (2000) Working with families of suddenly and critically ill children: physician experiences. Archives of Pediatrics and Adolescent Medicine 154, 11271133.
  • *Breen C.M., Abernethy A.P., Abbott K.H. & Tulsky J.A. (2001) Conflict associated with decisions to limit life-sustaining treatment in intensive care units. Journal of General Internal Medicine 16 (5), 283289.
  • *Browning D. & Solomon M. (2005) The initiative for pediatric palliative care: an interdisciplinary educational approach for health care professionals. Journal of Pediatric Nursing 20, 5.
  • *Burns J. & Rushton C. (2004) End of life care in the pediatric intensive care unit: research review and recommendations. Critical Care Nursing Clinics of North America 20 (3), 467485.
  • *Burns J., Mitchell C., Outwater K. et al. (2000) End-of-life care in the pediatric intensive care unit after the forgoing of life-sustaining treatment. Critical Care Medicine 28, 30603066.
  • *Burns J.P., Mitchell C., Griffith J.L. & Truog R.D. (2001) End-of-life care in the pediatric intensive care unit: attitudes and practices of pediatric critical care physicians and nurses. Critical Care Medicine 29 (3), 658664.
  • *Carroll J.M., Santucci G., Kang T.I. & Feudtner C. (2007) Partners in pediatric palliative care: a program to enhance collaboration between hospital and community palliative care services. The American Journal of Hospice and Palliative Care 24, 191195.
  • *Cassidy R.C. & Fleischman A.R. (1996) Pediatric Ethics – From Principles to Practice. Harwood Academic Publishers, the Netherlands.
  • Contro N., Larson J., Scofield S., Sourkes B. & Cohen H. (2004) Hospital staff and family perspectives regarding quality of pediatric palliative care. Pediatrics 114, 5.
  • *Dickens D.S. (2009) Building competence in pediatric end-of-life care. Journal of Palliative Medicine 12, 617622.
  • Duncan J., Spengler E. & Wolfe J. (2007) Providing pediatric palliative care: PACT in action. MCN: The American Journal of Maternal Child Nursing 32 (5), 279287.
  • Engler A.J., Cusson R.M., Brockett R.T. et al. (2004) Neonatal staff and advanced practice nurses' perceptions of bereavement/end-of-life care of families of critically ill and/or dying infants. American Journal of Critical Care 13 (6), 489498.
  • Feudtner C. (2007) Collaborative communication in pediatric palliative care: a foundation for problem-solving and decision-making. Pediatric Clinics of North America 54 (5), 583607.
  • Feudtner C., Hays R.M., Haynes G., Geyer J.R., Neff J.M. & Koepsell T.D. (2001) Deaths attributed to pediatric complex chronic conditions: national trends and implications for supportive care services. Pediatrics 107 (6), 15.
  • *Feudtner C., Silveira M.J. & Christakis D.A. (2002) Where do children with complex chronic conditions die?: patterns in Washington state, 1980–1998. Pediatrics 9, 656660.
  • *Feudtner C., DiGiuseppe D. & Neff J. (2003) Hospital care for children and young adults in the last year of life: a population-based study. BMC Medicine 3, Available at: http://www.biomedcentral.com/1741-7015/1/3, accessed 3 December 2010.
  • Feudtner C., Hexem K.R., Shabbout M., Feinstein J.A., Sochalski J. & Silber J.H. (2009) Prediction of pediatric death in the year after hospitalization: a population level retrospective cohort study. Journal of Palliative Medicine 12, 160169.
  • *Friebert S. (2009) NHPCO Facts and Figures: Pediatric Palliative and Hospice Care in America. National Hospice and Palliative Care Organization, Alexandria, VA.
  • *Galloway K. & Yaster M. (2000) Pain and symptom control in terminally ill children. Pediatric Clinics of North America 47 (3), 711746.
  • *Gowan D. (2003) End-of-life issues of children. Pediatric Transplantation 7 (3), 4043.
  • *Hamric A. (2000) Moral distress in everyday ethics. Nursing Outlook 13 (6), 199201.
  • Hays R.M., Valentine J., Haynes G. et al. (2006) The Seattle Pediatric Palliative Care Project: effects on family satisfaction and health-related quality of life. Journal of Palliative Medicine 9 (3), 716728.
  • *Himelstein B.P. (2006) Palliative care for infants, children, adolescents, and their families. Journal of Palliative Medicine 9, 163181.
  • *Himelstein B., Hilden J., Boldt A. & Weissman D. (2004) Pediatric palliative care. New England Journal of Medicine 350 (17), 17521762.
  • Hinds P.S., Oakes L.L., Hicks J. & Anghelescu D.L. (2005) End-of-life care for children and adolescents. Seminars in Oncology Nursing 21 (1), 5362.
  • *Hupcey J.E., Penrod J. & Fogg J. (2009) Heart failure and palliative care: implications in practice. Journal of Palliative Medicine 12 (6), 531536.
  • Hynson J., Gillis J., Collins J., Irving H. & Trethewie S. (2003) The dying child: how is care different? Medical Journal of Australia 179, 2022.
  • Institute of Medicine (IOM) (2001) Crossing the Quality Chasm: A New Health System for the 21st Century. The National Academies Press, Washington, DC.
  • *Institute of Medicine (IOM) (2003) When Children Die: Improving Palliative and End-of-life Care for Children and Their Families. National Academy Press, Washington, DC.
  • *International Children's Palliative Care Network (ICPCN). (2010) What is children's palliative care? London, UK. Available at: http://www.icpcn.org.uk/page.asp?section=0001000100080004&sectionTitle=What+is+Children%92s+Palliative+Care%3F, accessed 12 December 2009.
  • *Jones P.M. & Carter B.S. (2010) Pediatric palliative care: feedback from the pediatric intensivist community. The American Journal of Hospice and Palliative Care 27, 450455.
  • *Kaplan L.J. (2000) Toward a model of caregiver grief: nurses' experiences of treating dying children. Omega 41 (3), 187206.
  • *Kersun L., Gyi L. & Morrison W.E. (2009) Training in difficult conversations: a national survey of pediatric hematology-oncology and pediatric critical care physicians. Journal of Palliative Medicine 12, 525530.
  • *Klick J.C. & Hauer J. (2010) Pediatric palliative care. Current Problems in Pediatric and Adolescent Health Care 40, 120151.
  • *Knapp C. (2009) Research in pediatric palliative care: closing the gap between what is and is not known. The American Journal of Hospice and Palliative Care 26 (5), 392398.
  • *Knapp C.A., Thompson L.A., Vogel W.B., Madden V.L. & Shenkman E.A. (2009) Developing a pediatric palliative care program: addressing the lack of baseline expenditure information. The American Journal of Hospice and Palliative Care 26, 4046.
  • Kumar S.P. (2011) Reporting of pediatric palliative care: a systematic review and quantitative analysis of research publications in palliative care journals. Indian Journal of Palliative Care 17, 202209.
  • *Lee K.J. & Dupree C.Y. (2008) Staff experiences with end-of-life care in the pediatric intensive care unit. Journal of Palliative Medicine 11, 986990.
  • Levetown M. (1996) Ethical aspects of pediatric palliative care. Journal of Palliative Care 12 (3), 3539.
  • *Lindley L., Mark B. & Lee S.Y. (2009) Providing hospice care to children and young adults: a descriptive study of end-of-life organizations. Journal of Hospice and Palliative Nursing 11, 315323.
  • *Meadors P. & Lamson A. (2008) Compassion fatigue and secondary traumatization: provider self care on intensive care units for children. Journal of Pediatric Health Care 22, 2434.
  • *Meier D.E. & Beresford L. (2007) Pediatric palliative care offers opportunities for collaboration. Journal of Palliative Medicine 10, 284289.
  • Meyer E.C., Ritholz M.D., Burns J.P. & Truog R.D. (2006) Improving the quality of end-of-life care in the pediatric intensive care unit: parents' priorities and recommendations. Pediatrics 117 (3), 649657.
  • *Michelson K.N., Ryan A.D., Jovanovic B. & Frader J. (2009) Pediatric residents' and fellows' perspectives on palliative care education. Journal of Palliative Medicine 12, 451457.
  • Miles M. & Huberman A. (1994) An Expanded Sourcebook: Qualitative Data Analysis, 2nd edn. Sage, Thousand Oaks, CA.
  • *Morgan D. (2009) Caring for dying children: assessing the needs of the pediatric palliative care nurse. Pediatric Nursing 35 (2), 8692.
  • Morrison R.S., Penrod J.D., Cassel J.B. et al. (2008) Palliative Care Leadership Centers' Outcomes Group: cost savings associated with US hospital palliative care consultation programs. Archives of Internal Medicine 168, 17831790.
  • National Hospice and Palliative Care Organization (NHPCO). (2008) Position Statement on Access to Palliative Care in Critical Care Settings. Available at: http://www.nhpco.org/files/public/NHPCO_PC-in-ICU_statement_Sept08.pdf, accessed 21 November 2009.
  • *National Hospice and Palliative Care Organization (NHPCO). (2009) Standards of Practice for Pediatric Palliative Care and Hospice. (Item No. 821399) NHPCO, Alexandria, VA. Available at: http://www.nhpco.org/i4a/pages/index.cfm?pageID=5874, accessed 23 November 2009.
  • National Hospice and Palliative Care Organization (NHPCO). (2012) Facts and Figures: Hospice Care in America. NHPCO: Alexandria, VA. Available at: http://www.nhpco.org/files/public/statistics_research/2011_facts_figures.pdf, accessed 17 December 2012.
  • Patterson J., Peek C.J., Heinrich R.L., Bischoff R.J. & Sherger J. (2002) Mental Health Professionals in Medical Settings: A Primer. Norton, New York.
  • Peek C.J. & Heinrich R.L. (2000) Integrating behavioral health and primary care. In Handbook of Psychological Assessment in Primary Care Settings (M. Maruish ed.). pp. 4393. Lawrence Erlbaum, Mawah, NJ.
  • Putnam A.O. (1990) Organizations. In Advances in Descriptive Psychology. Vol. 5 (A.O. Putnam & K.E. Davis eds), pp. 1146. Descriptive Psychology Press, Ann Arbor, MI.
  • *Rushton C. (1992) Caregiver suffering the critical care nursing. Heart and Lung 21 (3), 303.
  • *Rushton C. (2000) Pediatric palliative care: coming of age. Innovations in End-of-Life Care. 2 (2). Available at: http://www2.edc.org/lastacts/archives/archivesMarch00/editorial.asp, accessed 17 January 2010.
  • *Rushton C. (2004) Integrating ethics and palliative care in pediatrics. American Journal of Nursing 104 (4), 5463.
  • *Rushton C. & Caitlin A. (2002) Pediatric palliative care: the time is now. Pediatric Nursing 28 (1), 5760.
  • *Rushton C., Williams M. & Sabatier K. (2002) The integration of palliative care and critical care: one vision, one voice. Critical Care Nursing Clinics of North America 14, 133140.
  • *Sahler O.J., Frager G., Levetown M., Cohn F. & Lipson M. (2000) Medical education about end-of-life care in the pediatric setting: principles, challenges and opportunities. Pediatrics 105 (3), 575584.
  • *Shah R., Ting T., Taylor P. & Glover J. (2002) The increasing need for pediatric palliative care. West Virginia Medical Journal 98 (3), 104107.
  • *Sheetz M.J. & Bowman M.A. (2008) Pediatric palliative care: an assessment of physicians' confidence in skills, desire for training, and willingness to refer for end-of-life care. The American Journal of Hospice and Palliative Care 25, 100105.
  • *Sullivan A., Warren A., Lakoma M., Liaw K., Hwang D. & Block S. (2004) End-of-life care in the curriculum: a national study of medical education deans. Academic Medicine 79 (8), 760768.
  • Tan G.H., Totapally B.R., Torbati D. & Wolfsdorf J. (2006) End-of-life decisions and palliative care in a children's hospital. Journal of Palliative Medicine 9 (2), 332342.
  • Temel J.S., Greer J.A., Muzikansky A. et al. (2010) Early palliative care for patients with metastatic non-small-cell lung cancer. New England Journal of Medicine 363, 733742.
  • *Tolle S., Tilden V., Rosenfeld A. & Hickman S. (2000) Family reports of barriers to optimal care of the dying. Nursing Research 49, 310317.
  • *Weigel C., Parker G., Fanning L., Reyna K. & Gasberra D.B. (2007) Apprehension among hospital nurses providing end-of-life care. Journal of Hospice and Palliative Nursing 9 (2), 8691.
  • Whittemore R. & Knafl K. (2005) The integrative review: updated methodology. Journal of Advanced Nursing 13, 546553.
  • *Wolfe J., Grier H., Klar N. et al. (2000) Symptoms and suffering at the end of life in children with cancer. New England Journal of Medicine 342, 5.
  • Wolfe J., Hammel J.F., Edwards K.E. et al. (2008) Easing of suffering in children with cancer at the end of life: is care changing? Journal of Clinical Oncology 26 (10), 17171723.
  • World Health Organization (WHO). (2004) WHO Definition of Palliative Care. Available at: http://www.who.int/cancer/palliative/definition/en/, accessed 12 January 2009.
  • Wright B. (2004) Compassion fatigue: how to avoid it. Palliative Medicine 18, 34.
  • *Yang C.P., Leung J., Hunt E.A. et al. (2011) Pediatric residents do not feel prepared for the most unsettling situations they face in the pediatric intensive care unit. Journal of Palliative Medicine 14, 2530.
  • *Yazdani S., Evan E., Roubinov D., Chung P.J. & Zeltzer L. (2010) A longitudinal method of teaching pediatric palliative care to interns: preliminary findings regarding changes in interns' comfort level. Palliative and Supportive Care 8, 3540.