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Skip to 0 minutes and 9 seconds As a specialised service, palliative care can sometimes be seen as something that happens only at the end of life. From week one, you can probably see that palliative care needs to happen earlier and be better integrated into other services. Dr Jeroen Hasselaar led the InSup-C research study looking at how we integrate palliative care. We met with him and asked him to explain what is integrated palliative care? Different definitions of integrated care exist. However, most definitions agree that integrated care involves an approach that contributes to the quality of life of patients by ensuring a seamless and continuous care process organised around their needs, including professional collaborations, appropriate care arrangements, and social network support.

Skip to 0 minutes and 57 seconds Some aspects of integrated care can be traced back to the current well known, WHO definition of palliative care. For example, the integration of psychological and spiritual aspects, a support system to help patients live as actively as possible, a team approach to address the needs of patients and family, and an early application in the course of illness in conjunction with other therapies. If palliative care isn’t integrated, this can lead to various problems. However, fragmentation and discontinuity of palliative care services often result in suboptimal care. Many patients, for example, receive palliative care in a very late stage of their illness, or not at all.

Skip to 1 minute and 38 seconds Moreover, these patients often faced out of hour services due to uncontrolled pain, or experience acute hospital admissions during the last phase of life. It has been investigated that many patients receive transfers in the last month of life often from home to hospital. And the added value of these transfers is not always clear, and is, presumably, partly due to the absence of integrated palliative care. Consequently, many patients are not able to die at their preferred place of death, although we know this is the wish of many people.

Skip to 2 minutes and 8 seconds And this involves an important aspect of integrated care, as well, the seamless collaboration between several medical and nursing disciplines supports the exchange of information and continuity of care for the benefit of the patient. In the InSuP-C project, we made a work definition for integrated palliative care reading as follows, that integrated palliative care involves bringing together administrative, organisational, clinical, and service aspects in order to realise continuity of care between all actors involved in the care network. And it aims to achieve quality of life and a well-supported dying process for the patient and the family in collaboration with all the caregivers, paid and unpaid. The overarching aims of this European funded project are described here.

Skip to 2 minutes and 53 seconds Our aims were firstly to see what had already been done. So we performed a literature review to look at previous research in this area, both at effectiveness, but also, about what guidelines are available. And based on this, we developed a taxonomy of classification of different parts of palliative care and the integration of palliative care. We followed patients receiving palliative care in five countries across Europe. We interviewed them, their carers, health care professionals involved in their care, over a three-month period to see what their experience had been. And this design enables us to examine the quality of care of a range of IPC initiatives, in death and over time, as it is experienced in daily caregiving practices.

Skip to 3 minutes and 40 seconds And then, we were able to compare the different palliative care services across Europe to identify best practices, or good practices. As you heard, developing a taxonomy was part of the study. And we asked one of the researchers involved in this part of the research, Dr Lisa Linge-Dahl, to explain this a bit more. The taxonomy of integrative palliative care is a means of developing categories which describe, or help visualise, the way how palliative care services cooperate with each other. So we need to know what these categories are, which elements of integrated palliative care are involved, and how all components work together.

Skip to 4 minutes and 21 seconds Across Europe, we face the challenge that existing integrated palliative care initiatives vary in their design and often are not comparable. For instance, the provision of IPC in Hungary is still in its infancy, whereas in other countries, it is more developed, such as in the Netherlands, where there are currently 10 different ways, or models, of delivering palliative care. Developing a taxonomy, I think you can see, is complicated and needs the involvement of various people, which Lisa explains. The taxonomy of IPC initiatives was developed in cooperation with an international and multidisciplinary focus group of 18 experts. Subsequently, a consensus meeting of 10 experts revised a preliminary taxonomy and adopted the final classification system.

Skip to 5 minutes and 14 seconds In order to stimulate the process of building a taxonomy, experts were asked, how can we conceptualise IPC? What is the added value of a taxonomy? What taxonomy for IPC can be developed that is applicable across diseases, health care sectors, and systems? The key categories are disease, type of initiative, level of care, care sector, time frame of intervention, focus of intervention, collaboration and communication strategy, and key contact. These categories encompass the process of IPC, including structure, interaction, and time of integration. For instance, the category time frame of intervention consists of the item’s early integration, concurrent with other care, perhaps chemotherapy and end of life terminal care.

Skip to 6 minutes and 9 seconds IPC is provided if all categories can be applied and if, in at least one of these categories, more than one item can be ticked. The taxonomy may be used as a scheme against which existing interventions can be classified, a toolkit for policy makers and professional caregivers to enhance their knowledge on IPC, a facilitator for future development and cooperation of IPC. As has been said, the study was conducted in five European countries - Belgium, in the Flanders region, Germany, Hungary, the Netherlands, and the United Kingdom. In each country, three to five integrated palliative care initiatives were recruited to the study.

Skip to 6 minutes and 54 seconds We think this is the first time a palliative care study was conducted directly with patients and family caregivers on such a large European scale. Jeroen tells us a bit more about the care networks that were included. Integrated palliative care involves the right care at the right moment by the right caregiver. Networks of care are key in this approach. In palliative care, integration of care can be approached from different angles, like a clinical perspective, like an organisational perspective, but also, through collaboration in local networks. If professionals and organisations are connected through a network, we expect, for example, better collaboration, less delay in responses, and a better exchange of information, and finally, a more coordinated care for the patient.

Skip to 7 minutes and 45 seconds We see that there are various models of supporting integrated palliative care across Europe. Palliative care teams are often mentioned in the research. In some cases, these teams are supported by the government. Sometimes these are based on local pioneers. Some work in a more formal, organisational context, whereas others are more informal, loosely coupled networks. I finished by asking Jeroen what was needed to achieve good integration of palliative care. It is worthwhile to investigate which aspects of integration are, and which are not, well captured in palliative care in Europe at this moment. It is recommended to think about integration of care right away at the beginning of a new project or a new initiative for palliative care.

Skip to 8 minutes and 31 seconds And this integration is not limited to clinical aspects, but also includes integration of culture, for example, between different medical and nursing caregivers. Integration of standards and norms, for example, what we consider good palliative care, when does it start? Also about practical arrangements, who is responsible for which tasks? Conceptual thinking in palliative care, brief of integration, like involvement of patient, and family, and multidisciplinary care. However, it is too often overlooked that the above mentioned aspects of organisational, cultural, regulatory, and practical aspects are key for full realisation of integrated care at the level of the palliative patient.

What is Integrated Palliative Care (IPC)?

As a specialised service, palliative care is sometimes considered relevant only at the end of life.

However, as explored in Week 1 of this course, palliative care needs to happen earlier and be better integrated into other services.

In this film, you will be introduced to the concept of ‘integrated palliative care’ and its importance in relation to patients’ quality of life.

You may also find pages 7-11 in Integrated Palliative Care a useful introduction.

Additional reading

For those of you who are interested, you can find some optional reading in the downloads section below. This EBook is also available in the downloads section below.

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Palliative Care: Making it Work

Lancaster University