Death comes to us all. Nowadays, acute deaths due to infectious diseases have largely been replaced by non-sudden deaths, caused by e.g. cancer, cardiovascular diseases and dementia . Therefore, the need for palliative care is increasing. High-quality palliative care is important in improving the quality of life of patients and their families facing the problems associated with a life-threatening disease . Since the 1990s, the Dutch government has consistently invested in the optimization of palliative care, and nowadays many best practices are available in the Netherlands. 'Best practices' are defined in this paper as practices, often developed among small groups of patients and professionals, that contribute to the improvement of palliative care and that are transferrable to other settings. Some examples of best practices in the Netherlands are:
The Dutch version of the Liverpool Care Pathway for the Dying Patient . The pathway was developed to aid members of a multi-disciplinary team in matters relating to continuing or discontinuation of treatments and regarding comfort measures during the last days and hours of a patient's life.
PaTz – a systematic approach to optimize palliative care based on the Gold Standard Framework (http://www.goldstandardsframework.org.uk/). Its elements include collaborative meetings of general practitioners and community nurses, the timely identification of patients in need of palliative care and the drafting of an advance care plan .
Informare, a tailored method that enables health care professionals to provide timely information about palliative care to patients and relatives .
‘Signal box for nursing assistants’, a tool that enables nursing assistants to identify palliative care needs in their patients and pass this information on to other professionals .
These best practices are known for their contribution to high-quality palliative care, although so far most of the knowledge about the effects of these best practices on the quality of palliative care is practice-based rather than evidence-based. At the moment, most evidence is available with regard to the Dutch version of the Liverpool Care Pathway (LCP) for the Dying Patient and regarding PaTz. Research has indicated that use of the Dutch version of the LCP leads to a decrease in the symptom burden for patients in the last days of life, a decrease in the grief burden for relatives and an improvement in the documentation of care [5–7]. Furthermore, a recent review showed that the Gold Standard Framework (the British equivalent of PaTz) improves processes in general practice, co-working and the quality of palliative care. Although the direct impact on patients and carers is unknown at present, the Gold Standard Framework has considerable potential to improve palliative primary care .
Although large-scale implementation of such best practices appears to be important for improving palliative care, implementation in general health care settings (e.g. general hospitals, general practices, residential elderly care and home care) is challenging, e.g. because professionals in general health care settings are often not specialized in palliative care and often provide care to a variety of patient categories. Moreover, hospital settings in particular are traditionally strongly focused on cure and life prolongation, which influences how palliative care needs are attended to .
National quality improvement programme for palliative care
The Dutch National Quality Improvement Programme for Palliative Care was launched in 2012 with the aim of promoting the implementation of best practices in general health care settings. This four-year programme receives financial and practical support from ZonMw (The Netherlands Organisation for Health Research and Development) and was commissioned by the Dutch Ministry of Health. The programme’s key objectives are to promote that:
Patients die at their preferred place.
Patients and relatives feel they are in control regarding palliative care.
Patients and relatives see palliative care as being coordinated.
Patients and relatives feel care to be concordant with their needs, preferences and values.
Patients and relatives receive care for their needs in the physical, psychosocial and spiritual domains.
This programme enables care organizations to improve their palliative care by implementing one or more of the available best practices. The best practices are pre-selected by an independent committee of experts, professionals and patient representatives, taking account of the available evidence, the usability and the transferability of the best practice to general health care settings. The committee assesses potential new best practices every year to include in the National Quality Improvement Program Palliative Care. The nine best practices that are currently pre-selected for implementation are listed in Additional file 1.
Every year during the programme period (2012–2016), there is a call for applications. Representatives of regional networks of palliative care providers are invited to choose a specific best practice from the pre-selected list and to submit a project proposal for an implementation trajectory. Each year, financial support is given by ZonMw for approximately 17 implementation trajectories. The grant applications are assessed by an independent quality working group. The criteria for granting this support include the requirement that the applicant must be a representative of the regional palliative care networks, the care organizations involved must reach a substantial number of patients with palliative care needs and the best practice chosen must be implemented within one year .
It is important to determine the effects of the National Quality Improvement Programme for Palliative Care, since a lot of professionals and financial resources are involved and ultimately patients and relatives must benefit from this great effort. Other large-scale improvement programmes have already been implemented and evaluated in other domains, e.g. regarding safety in health care and social care [11–15]. However, so far such large-scale programmes are a new feature within palliative care. Earlier evaluations in other health care domains not only focused on the effectiveness of the programmes but also described the implementation processes in order to enable an understanding of how the programmes take shape in practice, as well as of barriers and facilitators. Such a process evaluation can be referred to as opening the ‘black box’ of interventions , which is important in increasing the likelihood that interventions will continue to be used in practice after the research has finished. In palliative care too, it is important to bridge the gap between research and practice [17, 18] and to maximize the likelihood of the long-term adoption of quality improvement projects in practice . Therefore, it is important to describe both the effects and the process of this large-scale implementation of palliative care best practices.
This paper presents the study protocol of the evaluation study. The primary objective of this study is:
Its secondary objectives are:
To gain insight into the effects of the separate implementation trajectories of best practices on the quality of palliative care within the participating regional palliative care networks or organizations.
To elucidate the measured effects by describing the implementation process and the barriers and facilitators within the separate implementation trajectories.
The specific research questions being addressed in the evaluation study are as follows:
What are the effects of the National Quality Improvement Programme for Palliative Care as a whole on the quality of palliative care? More specifically, what are the programme’s effects on:
The percentage of patients who die in their preferred place?
The extent to which patients and relatives feel in control regarding palliative care?
The extent to which patients and relatives experience well-coordinated palliative care?
The extent to which patients and relatives feel that the palliative care is concordant with their preferences and values and meets their needs in the physical, psychosocial and spiritual domains?
What are the effects of the separate implementation trajectories on the quality of palliative care at the level of the regional palliative care networks or care organizations involved? (with equivalent subquestions to questions 1a to 1d)
How and to what extent are the best practices implemented? More specifically:
Does the implementation of the best practices take place as planned?
What barriers and facilitators are there for the implementation of the best practices and what conditions have been created to ensure the best practices are maintained?
Are there any other factors or developments – inside or outside the participating organizations – that might have contributed to the measured effects of the programme as a whole or within the separate implementation trajectories?