Current Problems in Pediatric and Adolescent Health Care最新文献

In Sweden, the governance of healthcare is decentralized, so PC is provided with regional or local differences in organization, level of competence, and recourses. Ongoing regional and national initiative to increase quality of pediatric palliative care in Sweden aligns with the international standard of pediatric palliative care as a care directed towards all children with life-threatening or life-limiting illness or conditions from the time of diagnosis. Examples of such initiatives and of different care-services providing pediatric palliative care will be presented. Finally a case to highlighting how a child's care needs might change throughout the illness trajectory and how various healthcare facilities and organizations when collaborating can support the child's participation in decision making is presented.

Shared decision-making (SDM) is a process in which health care professionals (HCPs) involve parents and children - when appropriate- to decide together on future treatment. These decisions are based on values that are important for the family, goals of care and preferences for future care and treatment. Elucidation of these values and preferences is preferably done early in the disease trajectory via so-called Advance Care Planning (ACP) conversations.

In the Netherlands, ACP and SDM are being adopted by most health care professionals. This has happened only recently. Ten years ago, ACP and SDM were unknown concepts for the vast majority of Dutch HCPs. Today, interest in these conversational approaches is booming in both daily practice and in research.

This rise has been reinforced by two recent major advancements in Dutch pediatric palliative care: the Individual Care Plan (ICP) and the Dutch Evidence-Based Guideline on Pediatric Palliative Care (DGPPC).

Despite this positive evolution, a lot of work is still ahead. ACP and SDM demand a change in mindset from the traditional paternalistic approach by which the HCP ‘knows what is best for this child’ to a more humble and open approach in which (non-medical) factors that are important to the child and family and may influence the final treatment decision. Such changes in mindset don't happen overnight.

In this article we describe the situation of pediatric palliative care in the Netherlands, with focus on the recent evolution of ACP and SDM.

The evolution of paediatric palliative care in Malaysia has followed a distinct trajectory compared to adult palliative care. While adult palliative care was well-established by the mid-1990s, paediatric palliative care was still then largely ad hoc, with individual paediatricians and NGOs taking on the responsibility. Despite progress over the last decade, challenges persist. There is a shortage of trained paediatricians in this subspecialty, and financial constraints hinder progress. Decision-making in paediatric palliative care is also influenced by cultural values, religious beliefs, and societal norms. Parents are steered by cultural practices and the guidance of elder family members in a setting of communitarian traditions that are prevalent in Asian cultures. Discussions about end-of-life matters are hampered by cultural taboos. Additionally, the hierarchical medical culture, where doctors are seen as authoritative, hinder patients, including parents, from taking an active role in decision-making. The paper exemplifies these complexities through a case study, where the family's hopes and concerns were overlooked in a hectic and hurried hospital environment. The narrative calls for a compassionate, collaborative ecosystem that bridges cultural gaps and embraces shared decision-making in paediatric palliative care. It emphasizes the need to harmonize palliative care with societal values, involving healthcare providers, families, and the community. However, recognizing individual preferences and avoiding cultural assumptions are crucial. Healthcare professionals must develop skills in cultural diversity, delivering distressing news with compassion, and effectively communicate to involve families in decision-making, all while respecting their beliefs and values.

Pediatric palliative care (PPC) emerged during the late 20th century in Canada. It has steadily expanded and there are now programs in every province. Programs adhere to recognized standards of practice at both federal and provincial levels. PPC is recognized by government regulatory bodies and professional associations, including the Canadian Paediatric Society.

Pediatric palliative care has grown immensely in recent years in the world. However, shared decision-making remains a complex process, especially in pediatric palliative care. In particular, a number of issues are priorities to improve the shared decision-making process and ensure high-quality pediatric palliative care for every child. Working on these priorities will improve shared decision-making and thereby enhance high-quality pediatric palliative care around the globe.

In this article, we highlight the Australian pediatric palliative care context. We describe the way in which pediatricians may adopt ‘directive’ shared decision-making to align care plans with their perceptions of harm avoidance for the child. The degree to which ‘directive alignment’ is ethically appropriate or proportionate in the context of the clinical and social context of the child must be considered. Shared decision-making within palliative care continues to be a challenging dynamic to navigate for pediatricians.

Shared decision-making (SDM) with parents and adolescents is normative in pediatric practice in North America. In this article we discuss how it is applicable to the practice of pediatric palliative care (PPC). As PPC itself is exemplary of patient-and-family-centered care, it often uses a SDM approach in clarifying patient and family preferences, goals, and values. This often occurs in an iterative process and across care environments, wherein the patient and family narrative is elaborated. Decisions are then made incorporating both evidence-based medical practice and the unique attributes and considerations of the patient and family.

Despite the significant growth and development of pediatric palliative care worldwide, significant challenges remain. One of those challenges is shared decision-making, by which parents, families and professionals all work together to develop a plan of care that reflects both the medical facts and the patient’s family’s values. Shared decision-making about palliative care and about death and dying may mean different things in different cultures and countries. It is therefore important to learn and compare practices around the world.

Since the 1980s, there has been a growing recognition of the importance of palliative care for children with life-limiting and life-threatening conditions. Collaboration, regulatory frameworks, educational initiatives and a patient-centered approach have contributed to the advancement of PPC services for children with life-limiting conditions. In spite of this progress, pediatric palliative care in Argentina is not yet fully integrated into our health care system.