Development of a national quality framework for palliative care in a mixed generalist and specialist care model: A whole-sector approach and a modified Delphi technique

Abstract

In a predominantly biomedical healthcare model focused on cure, providing optimal, person-centred palliative care is challenging. The general public, patients, and healthcare professionals are often unaware of palliative care’s benefits. Poor interdisciplinary teamwork and limited communication combined with a lack of early identification of patients with palliative care needs contribute to sub-optimal palliative care provision. We aimed to develop a national quality framework to improve availability and access to high-quality palliative care in a mixed generalist-specialist palliative care model. We hypothesised that a whole-sector approach and a modified Delphi technique would be suitable to reach this aim. Analogous to the international AGREE guideline criteria and employing a whole-sector approach, an expert panel comprising mandated representatives for patients and their families, various healthcare associations, and health insurers answered the main question: ‘What are the elements defining high-quality palliative care in the Netherlands?’. For constructing the quality framework, a bottleneck analysis of palliative care provision and a literature review were conducted. Six core documents were used in a modified Delphi technique to build the framework with the expert panel, while stakeholder organisations were involved and informed in round-table discussions. In the entire process, preparing and building relationships took one year and surveying, convening, discussing content, consulting peers, and obtaining final consent from all stakeholders took 18 months. A quality framework, including a glossary of terms, endorsed by organisations representing patients and their families, general practitioners, elderly care physicians, medical specialists, nurses, social workers, psychologists, spiritual caregivers, and health insurers was developed and annexed with a summary for patients and families. We successfully developed a national consensus-based patient-centred quality framework for high-quality palliative care in a mixed generalist-specialist palliative care model. A whole-sector approach and a modified Delphi technique are feasible structures to achieve this aim. The process we reported may guide other countries in their initiatives to enhance palliative care.

Emotional functioning during bereavement after the death of patients with advanced cancer and associated factors

“…Recently in the Netherlands, there has already been an increased focus on relatives of patients receiving palliative care in the Netherlands, due to the published Netherlands Quality Framework of Palliative Care 36 . This study showed that monitoring of relatives during the palliative trajectory is necessary.…”

“…Care. 36 This study showed that monitoring of relatives during the palliative trajectory is necessary. It is important for healthcare professionals to support relatives throughout the patient's illness trajectory, especially those who are more vulnerable to a lower quality of life after the patient's death, that is, women, relatives with a lower EF prebereavement and relatives with lower social support during bereavement.…”

Generalist, specialist, or expert in palliative care? A cross-sectional open survey on healthcare professionals’ self-description

“…Respondents who did not describe themselves as generalist, specialist, or expert based on education or based on work-experience were categorized as generalists because of their initial education as HCPs. Thereby, we followed Boddaert et al [ 27 , 30 ] who described in the National Quality Framework Palliative Care: In the Netherlands, all HCPs are expected to provide generalist palliative care, informed by national standards and guidelines. Palliative care specialists can be consulted to provide support and expert advice [ 14 , 22 , 29 , 36 ].…”

“…Descriptive statistics were used to summarize baseline characteristics of healthcare professionals and to describe the number and percentages of self-described roles of HCPs, based on work experience and education. Hereby, we used the threefold distinction of generalist—specialist—expert, based on the context in the Netherlands and described in the Netherlands Quality Framework for Palliative Care (NQFPC) [ 27 , 30 ]. A Chi-square test was used to test for significant differences between self-description based on education or work experience and other characteristics.…”

“…In this study, we aim to explore how HCPs working in palliative care described themselves in terms of generalist, specialist, and expert, based on the description of the Netherlands Quality Framework for Palliative Care (NQFPC) [ 27 , 30 ] and how this self-description is related to work experience and education. Our secondary aim is to explore differences between the role of generalists and the combined role of specialist/ expert regarding work characteristics and to explore considerations of all HCPs regarding the distinction between palliative care specialists and experts.…”