Contributor – David de Sousa Loura
“Palliative care is only for the people who are dying.” This is one of the main prejudices associated with palliative care that persists in our global community.
In my professional environment, which includes an inpatient unit where we care for children with complex chronic conditions (CCC) and their families, there is some reluctance when discussing palliative care. When the question is drawn upon the table, answers like “we have not done everything we could for this child” or the classical fallacy that “palliative care only starts when we do not have more to offer” are outlined.
The World Health Organization defines palliative care as “an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering (…) and other problems, physical, psychosocial and spiritual” (World Health Organization, 2002, p. 84). A schematic illustration of this concept is in the figure below.
The International Children’s Palliative Care Network (ICPCN) defends that all children with a life-limiting or potentially life-threatening condition have the right to benefit from individualized and needs-focused palliative care, beginning at diagnosis and continuing in parallel with any curative approach (International Children’s Palliative Care Network, 2008, 2009).
The last estimation of the need for palliative care among children was conducted in 2017, where almost 4 million were identified as having palliative needs and children with CCC and their families were described as one of the more frequent palliative care users (Worldwide Hospice and Palliative Care Alliance, 2020). These conditions have a severe, incapacitating, incurable, and potentially life-threatening nature, lasting for at least one year (Benini et al., 2022).
Nurses’ responsibilities in an inpatient unit are frequently identified as instrumental matters, like symptom control and therapeutic management, communication and support to children and their family. When palliative care is implemented, one more cornerstone is added to the equation: discharge planning, which is critical to ensure stability and should be a priority.
Afaf Meleis has developed a mid-range theory focused on transition as a central concept in nursing (Meleis et al., 2000), defining it as “(…) a passage from one life phase, condition, or status to another” (Chick & Meleis, 1986, p. 239), being a complex and multidimensional concept (Meleis et al., 2000; Schumacher & Meleis, 1994). It is divided into three dimensions: types (developmental, situational, health/illness, and organizational); patterns (single/multiple, sequential/simultaneous, related/unrelated); and proprieties (awareness, engagement, change and difference, transition period, critical time and events) (Meleis et al., 2000; Schumacher & Meleis, 1994).
The author identifies some factors conditioning the transition. Personal factors are intrinsically related to the concept of a person in this theory, seen as an active being with perceptions about health/illness situations, giving them meaning (Meleis et al., 2000). Community and social factors are linked to the environment where these transitions occur (Chick & Meleis, 1986). In front of a transition, a person develops unique patterns of response tailored to each situation, evaluated by process and outcome indicators (Meleis et al., 2000).
In the scientific evidence, nursing intervention in this spectrum reflects on the concept of ‘care transition,’ defined as “a set of actions designed to ensure the safe and effective coordination and continuity of care as clients experience a change in health status, care needs, health care providers, or location (…)” (Dusek et al., 2015, p. 233). In this perspective, discharge preparation and execution in a child with a CCC and their family can be seen as a transition. Nurses have an undeniable role in ensuring their effectiveness and security.
First, it is essential to identify characteristics of the transition the child and family are experiencing, interpreting those clues to determine nursing diagnoses. The activity begins with a multidisciplinary assessment of the situation, resorting to therapeutic communication and giving primacy to their needs, worries and self-perceived expectations (Benini et al., 2022).
Knowing that developing an intervention plan is one of the critical factors for care integration and continuity of paediatric palliative care in the discharge (Benini et al., 2022; World Health Organization, 2018), focusing on the factors conditioning the transition can guide the elaboration of such plan.
At a personal level, identifying a case manager (Strupp et al., 2018), as well as the implementation of programs targeting training to better self-manage the CCC, with child and family participation adjusted to their problem-solving and planning skills are of the utmost importance (Coyne et al., 2018; Dusek et al., 2015; Topham et al., 2022). Mutual aid groups between parents of children with a chronic disease have been identified as a solution for self-care improvement that promotes better adaptation to the transition, in particular when hope is generated from these activities (Duggleby et al., 2010; Malheiro et al., 2017).
At a community level, guaranteeing continuity of care between the hospital and community is key. Referral to early intervention organizations, as well as to community support resources, is vital to promote gradual acceptance of the CCC (Coyne et al., 2018), allowing the children and their families to maintain their social roles (Benini et al., 2022). Furthermore, seeking coordination with schools can be a relevant strategy to improve their inclusion and normalization of chronic disease (Jorge et al., 2016; Pinto et al., 2017), as well as compassive communities, which can help demystify CCC and support these non-clinical needs (Aoun et al., 2022).
Concerning societal action, investment in professionals’ training, as well as nurses’ participation in the production of public policies in this field, is crucial to reveal the role of paediatric palliative care in the society, safeguarding the best possible quality of life for children with a CCC and contributing to universal health coverage (World Health Organization, 2018).
Consequently, a safe transition defines itself by developing mastery and acquiring an identity compatible with the effective management of a CCC. A study with parents of children with a CCC found that some positive outcome indicators for a safe transition would be the feeling of support, correct medication management, well-being, and health needs satisfaction (Saunders et al., 2021).
Promoting a safe transition of children with palliative needs and their families between the hospital and the community is a responsibility of the interdisciplinary health team. Nurses, who have more time allocated to direct clinical care, are in a pivotal position to acknowledge children and families’ priorities and to put in practice specific and coherent interventions to respond to these needs (Tavares et al., 2022). Therefore, it is of the utmost importance to raise awareness in the nursing workforce about this matter, articulating theory and scientific evidence to respond to the needs of these families, to whom time means more than everything.
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Farinha, C. (2022). Schematic illustration of the concept of pediatric palliative care [Illustration].
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About David de Sousa Loura
I am graduated in Nursing by the Nursing School of Lisbon (ESEL) since 2020 and I have been a Nurse at a inpatient paediatric ward of Hospital Dona Estefânia – Centro Hospitalar Universitário de Lisboa Central, E.P.E. since then. I also collaborate in research projects, with special interest in areas related to informal caregivers, paediatric nursing and health management and leadership.
Since 2022, I am enrolled in the Master of Nursing’ Course – Specialization in Child and Paediatric Health in the Health Sciences Institute of Universidade Católica Portuguesa (Lisbon). This post was made with the pedagogical supervision of Professor Zaida Charepe (PhD, Associate Professor) within the context of Nursing Theories’ curricular unit.