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Skip to 0 minutes and 7 seconds One of the research areas we looked at was how the different health care teams experienced the delivery of palliative care at their initiative. This was based upon group interviews in each of the sites in the five countries. We wanted to explore what integrative palliative care is and how it works in practise. Integrated care is quite a fashionable concept in health care, so I started by asking one of the lead researchers from the Dutch team, who’s an expert in integrated care, what it entails. Well, basically, integration is about delivering the right care at the right moment by the right caregiver, and using the appropriate materials. And it involves basically patient logistics.

Skip to 0 minutes and 53 seconds You have to make sure that the patient is referred at the right moment. It involves also information transfer. The right information must be available, otherwise you’re going to repeat treatments or do something double. It also involves continuity in the content of care. So professionals must realise that they have to adapt to each other. And finally, it has something to do also with materials and people being available at the right moment. And that combination is integrated care. We wanted to know what the aim of the project was and how this fitted with a better understanding of integrated palliative care.

Skip to 1 minute and 31 seconds Yes, we wanted to look for good examples of the integration of palliative care in Europe, and I think the new thing this project added is also that we don’t only look at what caregivers think about it, but also what patients and their family caregivers think about this. So this was the aim of the project, to investigate these good examples or to search for these good examples in five different countries in Europe. Part of the study was to identify these examples of best or effective practice, which we have included in the MOOC. They show how common problems might be overcome. You see that many things in palliative care, or at least in the last phase of life, go wrong.

Skip to 2 minutes and 17 seconds For example, if patients are transferred to hospitals unexpectedly or sometimes without a clear reason, you see from the literature many transfers of patients in the last three months of life. And if you look at it from a palliative care perspective, and for example, the WHO definition, you want it to really adhere to the needs of the patient and the family caregivers, and their, often, preference is to stay at home as much as possible. And if you dive into that, you see often fragmented care. And I think this project was one of the first to not investigate the fragmented care, but to look after good examples that are around.

Skip to 3 minutes and 2 seconds And I think, if you look from a perspective, maybe not just only a clinical perspective, but also an organisational perspective, there’s much more room for improvement. One of the aims of integrated care is that it results in better continuity of care, with patients receiving a more streamlined service. So we wanted to know if these initiatives lead to better continuity of care. Well, the professionals told us that it took a lot of time. And I think in all five countries, the initiative said that it started basically with the palliative care professionals. And they were the initiators. But it took a lot of time to convince other professionals to work together.

Skip to 3 minutes and 48 seconds And integrated palliative care is much to do with some sort of missionary work. So what they do is they try to convince others that they’re important and they can help them. And that is a mission that takes a lot of perseverance. So they had to convince others to refer patients to them, to be allowed in. And well, what they said is that took a lot of time to develop, but when it was finally there, it worked great. But it would like it to institutionalise now, to be more formalised, to be in protocols and reference criteria and stuff like that, and that never happens. So it works great, but it’s an informal setting with informal relationships.

Skip to 4 minutes and 33 seconds And it’s basically more about what you could say some sort of social coordination. They know each other, they trust each other, and that’s why they refer patients. But maybe for the future, if some of these care professionals– especially the palliative care professions– leave, it may be vulnerable. And also, you’re able to do that, keeping those personal relationships, if there are not a lot of professions involved. So if the network needs to increase because you need to involve other care patients or there are more professionals, that’s going to be a bit difficult. So the initiatives have a strong integrated care process, but based on informal relationship. And it’s especially so because palliative care is still a profession with a low status.

Skip to 5 minutes and 21 seconds So they’re in a humble position, but they don’t have humble ideas. They really think they can improve palliative care, and it seems so. But they need to be allowed in by the other professionals. So there is recognition that palliative care is still gaining respect as a part of a wider health care team. And how much it is integrated results in differing experiences of palliative care for patients and how their needs are met and their level satisfaction with care. Well, when we asked the patients, they were very satisfied. So they succeeded in that. But when we asked the professionals, they said, well, the meeting the needs of the patients is a very complex issue in palliative care.

Skip to 6 minutes and 6 seconds And that has something to do also with their need and their wish to be proactive. So they want to prepare for events that may happen, but patients are often not ready to talk about things that may happen. Well, they have, for example, procedures to assess patients’ needs, and they have protocols for that. But in practice, they say, you can’t use them. So it so much depends on is your patient ready, or do you think the patient needs to know something. And that’s something that really you need to feel and need to notice with patients. So most of the professionals talk about how important it is to have a personal relationship with patients.

Skip to 6 minutes and 52 seconds And that means being available for them, knowing them, trusting them. And on the one hand means that they’re more able to see when the patient is ready to get some sort of information, or to tell them the truth. On the other hand, it also allows patients to trust them and feel that they can ask questions, if they need to. And that combination, that’s very important. But that means that you really need some sort of case management and continuity also in the person that you care for. And that’s something that each initiative struggles with. So it needs to be informal. It doesn’t need to be protocolised.

Skip to 7 minutes and 36 seconds But in reality, they often see many different professionals, and it’s sometimes difficult to know when you can broach a subject and also who needs to do that. So that’s one of the struggles they face. We finished by asking what they’d learned from these initiatives. I think for one thing, these initiatives, they were very– especially the palliative careworkers– were very flexible. So what they did is they adapted to the existing patient’s reference system, to the information transfer system. And they used it in their own benefit, but they didn’t immediately introduce something new and said, you have to do this. No, they adapted. And they were open for others, and they tried to be helpful to other professionals, to be allowed in.

Skip to 8 minutes and 31 seconds And I think that’s one of the things that they did really well. And that’s why they built a network. And that network, that’s the basis of integrative care. I think, in addition to that, also perseverance is an important feature that you see. Most initiatives didn’t succeed at once. They tried and tried on to get their vision and their ideas, to get it into practice. And sometimes, they succeeded and sometimes they did not. And they needed perseverance to move on. Also, in combination I think with creativity, what you see a lot is that they find ways to get the message through or to establish a hospice or whatever, a team, a consultation team.

Skip to 9 minutes and 21 seconds They need to find ways how this can be done in practice. Also, how you can find funding for that, how you can convince local people who are in charge of a hospital, for example, or a health care community system, how you can convince them of the value of palliative care. So actually, they need to play chess on several boards, I would say, to find the right ways to get it through, to be perseverent, to be patient sometimes. And maybe as a kind of final not a recommendation, but a thought that I would like to formulate, is also what kind of leadership is needed to get the integration of palliative care forward.

Skip to 10 minutes and 8 seconds If we look maybe from that angle to our study, we can see that there is a kind of a certain type of leadership that is needed, that has a combination of all these maybe features, to get palliative care forward. That would be nice thought to think about it further and to discuss this with the field.

The importance of integrated palliative care

In the following video, Nancy talks with Jeroen Hasselaar and Jeroen van Wijngaarden about the importance of integrated palliative care for patients, their families and healthcare professionals.

They explain the origins and aims of the InSup-C project and reflect on some of the key findings.

As you will see, integrated palliative care encompasses a range of aspects and issues including: patient referral; resources; the availability and transfer of information; inter-professional relationships and teamwork; and continuity of care.

After watching the video

Jeroen and Jeroen discussed a number of observations and recommendations regarding how integrated palliative care can work best in practice.

Please share your thoughts about the issues raised in this video by posting a comment.

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This video is from the free online course:

Palliative Care: Making it Work

Lancaster University