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Skip to 0 minutes and 8 seconds So one of the papers, you decided to look in more depth at communication. Can you tell me why communication? We found, especially in our interviews, that the questions about communication and how the professionals feel about disclosing information about prognosis or planning for the future– it can be really challenging. And actually, colleagues in our focus groups just really found that it’s not a difficult topic to introduce– and also just decide when to talk about, or who should talk about that. Because in the focus groups and the group interviews, many professionals were sitting together and talking– so GPs, and palliative care doctors, nurses, cardiologists, or physicians who are care for patients with COPD.

Skip to 1 minute and 13 seconds So it was really interesting to hear this sort of conversation, or discussion, around that. So you were talking about who should maybe tell the patient their prognosis, or what care to expect in the future, and saying, who’s role was it and why should we do this? Yeah. And it was interesting to hear the different views about that, because the GPs heard that this is the responsibility, or the task, of the specialist doctors, with the oncologists, if it’s a cancer patient. Or it’s the responsibility of a cardiologist, if it’s in a stage heart failure. But it seems that these specialists are not well equipped with those skills. And also, they don’t have enough time and space for these kind of talks.

Skip to 2 minutes and 10 seconds Because these discussions really require time, but also special skills to discuss, and plan, and have some sort of advanced care planning. And would you say that maybe everyone thinks it’s someone else’s job? Yeah. Exactly. Yeah. This is exactly. And that’s what we found. And we thought it would be really interesting to compare and see how it’s practised, or the practice is viewed in other countries, whether if it’s also something that they find challenging, or it goes smoothly and everyone feels that it’s their own responsibility. Or they feel that it’s always someone else’s responsibility, and it’s not theirs. Because here in Hungary, this is what we found, that always it was felt that the other doctor should do that.

Skip to 3 minutes and 4 seconds Or they are the one who knows the patient more. But they are the doctors who maybe have a better understanding, in depth understanding, of the stage of the illness. And this is why they would be more responsible to talk about some of these questions, and introducing some of this advanced stage illness questions around planning, and preferences. But it felt and seemed that it was just not easy. Because I think that that’s mirrored in the UK, where you worked as well, that perhaps with advanced care planning, it’s difficult to know who should have that conversation, when to have it, and for the whole team to somehow share that conversation, and realise where the patient is at. Yeah.

Skip to 3 minutes and 50 seconds And also, I think it really varies how a patient perceives the discussions around that. Some are quite OK and relaxed to talk about that. But some patients and families are really, really anxious. So even just to introduce some of these questions, they really make them, OK. Now we’re talking about dying. Or now we are talking about end of life. Or now we are talking about– and I think it’s always– just have a little bit of understanding where the patient is at, whether how open they are about just talking about these kind of questions. Because sometimes it can be really, really difficult for patients just even to think about that.

Skip to 4 minutes and 41 seconds So with the communication issue and about information about prognosis, things like that, when you interviewed the Hungarian patients and their families, did you notice any difference there between what either the patient or the family member wanted? Yeah. We felt that still the practice in Hungary is that most doctors, or professional caregivers, disclose more information to families, or family members than to disclose or discuss information with the patients. And it’s interesting, because patients are really wishing and hoping, and are much more open to discuss, and really want to know. And they wish to know more. And also, what they found, that doctors are just feeling more comfortable to talking with families, and not with the patient.

Skip to 5 minutes and 50 seconds And it caused quite a bit of a disappointment on the patient’s side. And also, interestingly, families felt, because they were told the truth or the prognosis. So it’s the real picture. They really felt left alone and then just in a difficult position. Because what they felt and believed that maybe they expect us as family to talk about this with the patient. Which is just really, psychologically, it’s very difficult. And it’s not their task. But this is about they heard from families, that the doctor told us that what’s happening. Shall we be the ones who talk about this with the patient? We are not prepared. We are just a family. We don’t have the skills. And we are also emotionally involved.

Skip to 6 minutes and 51 seconds So on the family side, it was also a disappointment. Because they felt that it’s just a lot put on them by their knowing what’s happening, or what’s going on. But they were just between. So that’s something is a finding for the Hungarian palliative care community which you can use and put into education, and try and change attitudes. Yeah. And actually, what we found, that within the palliative care, this is what we do, that we communicate with the patients and with families together. So we are involving and including all of them. So the practice in palliative medicine in Hungary is like that.

Skip to 7 minutes and 33 seconds But outside of palliative care, for patients, where palliative care is still not available, or for patients who are not in palliative care, or not in hospice care, they are experiencing this kind of communication. Within palliative care we have this open communication, and we talk together with the patients and with families. Because I think in the UK we had some examples where it’s almost gone the other way, with patients going to clinic appointments without the family. And we would interview the patient and the family care giver. And they would have a very different understanding about what their needs were, and what was working and wasn’t working. But that was, again, was often outside of palliative care.

Skip to 8 minutes and 17 seconds So there could be appointments with another specialist. Yeah, and also, I think we offer to patients to come with families. But sometimes they just don’t want that, or they don’t feel comfortable, or we don’t know how actually families are sometimes, really working or functioning. And they feel they want to know for themselves. And they just share as much as they wish. So then families can be also feeling that they’re just excluded or they’re not involved. And they don’t know actually what’s happening. So this can be. But this is also, I think, it’s the family dynamics that we can’t really influence. So I think it’s really helpful if we can encourage that.

Skip to 9 minutes and 1 second But this is what we can do, and not much more. And I think that’s crucial in palliative care, isn’t it? We all aim for the best and hope for the best when we integrate care. But we’re integrating into real people’s lives. And we don’t know the state of their marriage, or their family dynamics. And we can only do so much and offer. And these are very sensitive and difficult issues, and talks, even in healthy and good working families. So when there is any other issues or difficulties within the family, it can be much more challenging and complex.

Skip to 9 minutes and 40 seconds So I think also, as professionals, we need to be a really, really careful about with whom and how we talk about these kind of questions. And just introduce it very gradually and carefully.

Communication and honesty

In the following film, Nancy talks with Ágnes Csikós about communication and honesty in integrated palliative care.

Ágnes focuses on some of the conversations which took place in the InSuP-C project between healthcare professionals particularly in Hungary, which may reflect views within countries that are developing palliative care.

The film addresses how some professionals feel about talking with patients about their diagnosis and prognosis, as well as helping patients to plan for the future.

As you will hear, these discussions can be challenging and healthcare professionals require the time, training and skills to engage in these conversations with patients and support their needs.

Please join in the discussion in the next step.

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This video is from the free online course:

Palliative Care: Making it Work

Lancaster University