How to move forward in shared decision-making in pediatric palliative care.

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.

Pediatric palliative care across continents: Communication and shared-decision-making.

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.

Improvement and implementation of a national individual care plan in paediatric palliative care: a study protocol.

INTRODUCTION: Paediatric palliative care (PPC) is care for children with life-threatening or life-limiting conditions, and can involve complex high-tech care, which can last for months or years. In 2015, the National Individual Care Plan (ICP) for PPC was developed and has shown to be successful. The ICP can be seen as an instrument to facilitate coordination, quality and continuity of PPC. However, in practice, an ICP is often completed too late and for too few children. We aim to improve the coordination, quality and continuity of care for every child with a life-threatening or life-limiting condition and his/her family by further developing and implementing the ICP in the Netherlands. METHODS AND ANALYSIS: To evaluate the original ICP, ICP 1.0, interviews and questionnaires will be held among parents of children who have or have had an ICP 1.0 and healthcare professionals (HCPs) who used ICP 1.0. Based on the results, ICP 1.0 will be further developed. An implementation strategy will be written and the renewed ICP, ICP 2.0, will be nationally tested in an implementation period of approximately 7 months. During the implementation period, ICP 2.0 will be used for all children who are registered with Children's Palliative Care teams. After the implementation period, ICP 2.0 will be evaluated using interviews and questionnaires among parents of children who received ICP 2.0 and HPCs who worked with ICP 2.0. Based on these results, ICP 2.0 will be further optimised into the final version: ICP 3.0. ETHICS AND DISSEMINATION: This study received ethical approval. The ICP 3.0 will be disseminated through the Dutch Centre of Expertise in Children's Palliative Care, to ensure wide availability for the general public and HCPs within PPC. Additionally, we aim to publish study results in open-access, peer-reviewed journals and to present results at national and international scientific meetings.

Home care nurses more positive about the palliative care that is provided and their own competence than hospital nurses: a nationwide survey.

BACKGROUND: People often prefer to stay at home until the end of life, but hospital admissions are quite common. In previous research bereaved relatives were found to be less positive about palliative care in hospital. However, it was not known how the content and quality of palliative care differ between home care and hospitals from the perspectives of hospital nurses and home care nurses and how palliative care in these settings could be improved. METHODS: A survey was held among hospital and home care nurses, recruited from a nationwide Nursing Staff Panel and through open calls on social media and in an online newsletter. The pre-structured online survey included questions on the palliative care provided, the quality of this care and the respondent's perceived competence in providing palliative care. The questionnaire was completed by 229 home care nurses and 106 hospital nurses. RESULTS: Most nurses provided palliative care in the physical and psychological domains, fewer provided care in the social and spiritual domains. A higher percentage of home care nurses stated that they provided care in these domains than hospital nurses. Overall, 70% of the nurses rated the quality of palliative care as very good to excellent. This percentage was higher among home care nurses (76.4%) than hospital nurses (59.4%). Moreover, a higher percentage of home care nurses (94.4%) stated they felt competent to a great extent to provide palliative care compared to hospital nurses (84.7%). Competencies regarding the physical domain were perceived as better compared to the competencies concerning the other domains. The nurses recommended paying more attention to inter-professional collaboration and communication, timely identification of the palliative phase and advance care planning, and more time available for palliative care patients. CONCLUSION: Although the quality of palliative care was rated as very good to excellent by nurses, improvements can still be made, particularly regarding palliative care in hospitals. Although patients often prefer to die at home rather than in hospital, still a considerable number of people do die in hospital; therefore hospital nurses must also be trained and be able to provide high-quality palliative care.