Panel discussion and Q&A session VI: Palliative care

Prof. Małgorzata Krajnik, Prof. Megan Best, Prof. Per Sjoegren, Prof. Ewa Jassem, Dr. Piotr Sobański

Recorded at the 6th McMaster International Review Course in Internal Medicine.
All lectures available at the MIRCIM virtual platform, click here to buy access.

Professor Małgorzata Krajnik: OK. Hello everybody, my name is Małgorzata Krajnik. I’m the head of the Palliative Care Department at Nicolaus Copernicus University in Toruń, Collegium Medicum in Bydgoszcz, Poland and I will try to moderate our discussion on palliative care today. We have our 4 panelists, so I will start by introducing Professor Megan Best from the Institute for Ethics and Society of the University of Notre Dame, Australia. Hello, Megan. Megan is a palliative care specialist who promotes very much spirituality in medicine; she also is a member of the Task Force on Spiritual Care of the European Association for Palliative Care. Our second panelist, Professor Per Sjoogren from the University of Copenhagen, is an expert not only in palliative medicine, but also in pain management. So Per will be dealing with your questions on pain, especially on treatment with opioids. Our 2 other speakers from the session on palliative care, Professor Irene Higginson and Professor David Currow, are not able to join us for the panel – they very much apologized for that. However, we have invited two other great experts on breathlessness management: [firstly,] Professor Ewa Jassem, head of the Department of Pulmonology and Allergology at the Medical University of Gdańsk, Poland. Ewa is the chair of the Polish Respiratory Society Task Force on Palliative Care for people with lung diseases. She is also the initiator and coordinator of the regional program of integrated care for patients with advanced COPD. [This is] very precious for us because we have several questions from [the audience] on integrated care for people with COPD. And the fourth panelist, Doctor Piotr Sobański, is the head of the Palliative Care Unit and Competence Center at Schwyz Hospital, Switzerland. Piotr is a specialist in cardiology and palliative care and he is the chair of the European Association for Palliative Care’s Task Force on Palliative Care for people with heart disease. OK, so we have already collected quite a long list of questions; thank you for them. However, you still have a chance to put your question in the Q&A section, so please do [so] and we will try to just answer all your questions, if possible. So let’s start with the first question, maybe to Ewa: “Would you recommend ambulatory oxygen for non-chronically hypoxemic patients with breathlessness?”

Professor Ewa Jassem: Once again, good evening. Well, this is an important issue. Chronic hypoxemia means that blood partial pressure of oxygen equals or is lower than 55 mm Hg or 60 [mm Hg] when it’s associated with the signs and symptoms of right heart failure. LTOT, meaning long-term oxygen therapy, delivered from portable sources, is widely accepted for chronically hypoxemic patients. Well, much less is known about the effectiveness of the use of portable oxygen on demand in the ambulatory setting. Some recommendations suggest on-demand use in patients who desaturate while they exercise, especially during rehabilitation programs. There is one elegant AmbOx study with was published exactly 2 years ago, and demonstrated that in patients with fibrotic ILD, meaning interstitial lung diseases, ambulatory oxygen is beneficial in terms of improved quality of life and in terms of ameliorating breathlessness. Also, the GOLD report suggests the use of oxygen on demand in COPD patients with breathlessness, even if the absence of hypoxemia. This suggestion is supported by the meta-analysis published in Thorax something like 6 years ago. And the other one in Cochrane review by Magnus Pär Ekström and David Currow and colleagues. And this comparison between the use of oxygen and the control group with just air, favored the active arm – oxygen ambulatory use in COPD patients – in terms of better symptom control during physical effort. Thus, the study supported the idea of the use of ambulatory oxygen during exercises. Still, there is an open question of whether ambulatory oxygen should be used in non-hypoxemic end-stage patients with breathlessness. There is also a former study by Amy Abernethy and David Currow [including] more than 200 patients. It was a randomized double-blind study that showed that oxygen delivered by a nasal cannula provided no additional symptomatic benefit for the relief of refractory dyspnea in patients with life-limited illness, compared with just simply room air. Thus, [to summarize], I would suggest the trial of ambulatory oxygen use in non-hypoxemic patients with chronic breathlessness on demand during physical effort. And it’s worth underlining that such a treatment is not [paid for] in a [number] of countries, including Poland. Thank you.

Małgorzata Krajnik: OK, thank you. I checked the last recommendation by the American Society of Clinical Oncology from this year, Management of Dyspnea in Advanced Cancer. They suggest rather to first check airflow intervention in non-hypoxemic patients. However, they also discuss when maybe it’s worth trying, in selected patients, [the use of] oxygen. OK, thank you. If you want to add something, Ewa?

Ewa Jassem: Well, it’s in line with the study by Amy Abernethy which demonstrated no benefit of oxygen use in comparison with just airflow.

Małgorzata Krajnik: OK, thank you. The next question, I think I will ask Piotr to comment [on]. “Is it better not to use short-acting morphine in chronic breathlessness?” – that’s an intriguing question. I think it may be connected with the statement from David Currow, from his lecture, when he explained the titration for chronic breathlessness, the titration with controlled-release morphine, that it’s not the same as for cancer pain; breathlessness differs from cancer pain, so do it slowly and it’s better not to just prescribe short-acting morphine. Piotr, could you comment on this?

Doctor Piotr Sobański: I think it’s quite a difficult question because in fact we have a growing number of studies which prescribe slow release morphine for breathlessness. There was a study with a 10-mg preparation for once daily usage, but most countries in Europe do not have this preparation for once daily use. So if you’d like to start with a slow-release preparation, the smallest possible dose is 20 mg – it’s quite a huge dose for treating breathlessness. And I think that there are no studies showing that using the regular formula of opioids is dangerous or [does] harm in comparison with slow-release. Of course, we know the suggestion that morphine prescribed for breathlessness control can be given, in [contrast] to morphine for pain, not every 4 hours but every 6 hours. Maybe it’s a little bit inconvenient but we should be careful on which basis we prescribe such long [intervals] between these 2 doses. So if you don’t have a really small-dose preparation, maybe we should negotiate using a really appropriately adjusted single-dose, a regular dose, repeated in pharmacokinetic-related periods. And the other thing is [that] maybe we need to be aware that most of the studies on slow-release morphine are studies on patients with chronic stable breathlessness, mostly connected with COPD, [but] not exclusively. And I think everyone who is working every day in a clinic with patients – you know the people having episodic breathlessness, you know the people coming with severe breathlessness. And I think that most of us in such circumstances use the intermediate forms as well. So I would suggest to take this message with caution and if you have chronic stable breathlessness, maybe we should think about a slow-release form to have a more stable concentration. But there are still situations when we need a rescue dose and we need an immediate-release preparation.

Małgorzata Krajnik: Thank you. I will add, again, I will refer to this latest ASCO guideline on dyspnea in advanced cancer [where] there is the statement: “for patients with chronic breathlessness in advanced cancer, short-acting opioids or long-acting opioids may be offered.” So just to inform everybody that it is allowed, let’s say. OK.

Piotr Sobański: And if I may make one small comment: Please remember that even with the very slow dose, low dose of morphine, be careful in people with chronic renal disease, which is not that uncommon in advanced disease. I remember from last week a person who was being treated due to severe COPD with 2 mg of morphine orally every 6 hours… and she developed acute hallucination in consequence of worsening renal failure. So be aware.

Małgorzata Krajnik: Thank you for this comment. Per, there’s a question on pain management: “What strong opioids are the first-choice opioids for you?” Maybe starting with this question.

Professor Per Sjoogren: Thank you for inviting me to this panel. Well, originally the drug of choice was morphine. And if we look back in the guidelines for the EAPC and the WHO, it was morphine. But I think that the other strong opioids have been upgraded in recent guidelines. And if we take the EAPC guideline that was published in The Lancet Oncology in 2012, I think they put oxycodone, morphine, [and] hydromorphone for those who have that drug, more or less at the same line. So, I think these drugs are actually at an equal level; you are free to choose today among different opioids. And of course, it’s a matter of local conditions, like price is a [factor]. We know all the opioids have a lot of side effects, but if you compare a certain amount of patients, the side effect profiles are the same, although they are individually different. So I think today you have a free choice that it would be very much dependent on the local environment.

Małgorzata Krajnik: OK. And just to continue with the first choice, because you are very critical about the second step of the WHO ladder, I remember from your lecture. And we have the second part of this question: “Is there any clinical situation that it is worth using tramadol instead of small doses of morphine?”

Per Sjoogren: Well, I think, my talk was primarily about advanced cancer and if we look at that, there is a huge debate about the second step and the second-step opioids. I have heard some talks from Marie Fallon recently where she is actually comparing two kinds of WHO ladder: the old 3-step one and a new one, which is only 2 steps in advanced cancer. And there seem to be advantages to using a 2-step ladder. They are almost equal concerning efficacy, but there are also other variables like cost effect[iveness] and things like that, where the 2-step ladder is preferable. However, in my country – Denmark – tramadol is very much used for cancer patients, and I think we would see that in many countries. It’s a very popular drug; it has other effects than the receptor effect; it has no adrenergic effects [00:17:28] effects and is claimed to be more efficient in neuropathic pain, for instance. I don’t think we have any evidence for that, but that’s the saying – like other things going around opioids. But you can of course use it. You can use the 3-step ladder. I think in many cases, as the problem with opioids is side effects, you will involve more side effects with the 3-step ladder. And I also think that was what Marie’s study has shown. I’ve just checked the study; it’s not published yet – I couldn’t find it – but I saw it, as she had a talk I think last year at the Palliative Research Center Congress organized by Stein Kaasa. And I think it will be [coming out] very soon. So, there is nothing wrong with tramadol and it’s used very, very much in our societies, also for chronic non-malignant pain. But I think in advanced cancer it would be preferable and there will also be an evidence base to change to a 2-step approach.

Piotr Sobański: If I may add, in Switzerland for example, we usually do not see tramadol at all, so there are definitely regional differences.

Per Sjoogren: I completely agree with you. And we have a lot of different traditions around the world of using opioids. And it’s interesting how different the use patterns are in different countries.

Małgorzata Krajnik: OK, thank you. We are talking about pain, so now to Megan, a question about spiritual pain. “How do you assess spiritual pain?” And the second part of this question is: “Should the spiritual interventions be documented in the formal medical documentation, the electronic documentation of the hospital?”

Professor Megan Best: Thank you very much for inviting me to this forum. I’m not quite clear if the first question is asking how you diagnose spiritual pain or how you measure it. One of the challenging things about spiritual pain is that one aspect of it is that it’s difficult to articulate. So we are working hard to see how best to recommend physicians to recognize this problem in patients. But I think, if you understand the definition of spiritual pain… spiritual pain is exhibited by a sense of alienation and the sense of helplessness and hopelessness and meaninglessness in the life of the patient. So often, the best way to start suspecting it is if the patient says something along these lines, saying, “I just don’t see the point in anything anymore” or “you know, some days I just feel like giving up.” And taking these cues from the patient, we can start to suspect that that kind of thing may be a problem. And then, we actually did a study where we examined the transcripts of conversations between palliative care physicians and their patients in the consultation. And we found that if the physician asked the patient about spiritual issues, that significantly improved the reliability of the patient talking about their spiritual problems. So it is extremely important if the physician does suspect something like this is going on, that they actually say, well, you know, “how are you feeling about how things are going?” One validated question from Stein Kaasa in the USA, at the end of life, is to say, “are you at peace?” And she has found that that is a reliable guide for identifying spiritual distress. I did a literature review looking at all the measures of spiritual distress and the one that was probably the best one available is the Pictorial Representation Of Illness And Self Measure [PRISM], which was published by Buchi. And that I think looks the most promising in a technical sense, but I don’t think you actually need to measure how severe the spiritual distress is; I think you just need to identify it. And generally, if you do have a chaplain available, maybe the best thing to do in terms of a formal assessment is to refer to a chaplain. But I think our main job as physicians is just to recognize it when it’s there. Now, in terms of the confidentiality of spiritual interventions, this is very much debated internationally, because a lot of spiritual care is given by priests and chaplains, who traditionally work in a cone of silence, of confidentiality. We then have to say that if we allow ministers of religion into the hospital to help patients, they are really part of the multi-disciplinary team looking after a patient. And our role is to help each other give the patient the best possible care. So it’s quite important that all spiritual interventions are documented in the EMR because it’s not just the spiritual carer who needs to know about these things, but it can impact on other carers in the healthcare team as well. For example, we had one patient who was labelled as being very difficult by the nurses and when the chaplain went in to have a chat – the chaplain is often the one with the most time [who] can sit there and have a long conversation with the patient – and basically, she found out that what was happening was the patient didn’t want to go into the bathroom to have a shower. And the reason for that is that it reminded him of the time he’d been in concentration camps before he migrated to Australia. And he wasn’t being difficult; he was just extremely scared to go into the shower. And by documenting that in the notes and talking to the nurses, they were able to understand what was going on for this patient, that he wasn’t being difficult, that he was having an existential crisis. And so we were able to address what was going on for the patient internally and the whole staff was able to provide better care for that patient. So I think we need to realize that all the dimensions of the human being will interact and that what is going on in one area, such as the spiritual dimension, can impact the psychological, the emotional, and the physical dimensions as well. And so it’s important that all members of the team communicate with each other about what they’ve discovered in that patient. Thank you.

Małgorzata Krajnik: Thank you very much. Just referring to this spiritual pain measurement, I remember a publication from the group of Eduardo Bruera. They defined spiritual pain as pain deep in your soul that is not physical and they asked [patients] to measure the intensity from 0 to 10, maybe for a study, for the purpose of research. So probably, it’s possible to measure, but as you said, the main question is to recognize and…

Megan Best: It’s interesting because it’s expressed differently; it’s a very individual symptom. And we have had patients express spiritual pain in physical measures. And one patient… If someone says, “I’ve got pain all over my body,” you think, “OK, what’s going on here?” We had a patient who got pain all over his body every time he had to have a scan. And obviously, when you have a scan, you find out your disease has progressed; it’s a time that causes great existential anguish. And when we at first thought it was physical pain, well, no medical drugs were going to fix that sort of pain. But for that patient, I think it was a lack of vocabulary – that because it can be difficult to articulate this distress, some patients call it physical pain, but it’s not going to respond to any normal measures for treating physical pain because its source is existential and its treatment needs to be existential.

Małgorzata Krajnik: Thank you very much. Let’s come back to the breathlessness. Oh yes, what do we have here… I think it’s a question for Ewa first of all. “Last year, the European Respiratory Society delivered recommendations…”

Ewa Jassem: Excuse me, could you repeat? Sorry?

Małgorzata Krajnik: “Last year, the European Respiratory Society delivered recommendations for diagnosis and treatment of chronic cough, developed according to widely accepted methods typical for such documents, including great methodology. Do you think we need such recommendations for breathlessness also?”

Ewa Jassem: Well, yes, indeed. Last year, actually at the beginning of the last year, the European Respiratory Society published recommendations on the diagnosis and treatment of chronic cough, by Morris and colleagues. And there are similarities between the treatment of refractory cough and refractory breathlessness. Both symptoms heavily deteriorate quality of life; both are quite frequent and difficult to control; and in both cases, there is an intense lack of good-quality evidence, making the treatment choice harder. Even so, the recommendations for chronic cough are only suggestions, supported by weak evidence. They encourage especially pneumonologists – who are not familiar with the use of, for example, neuromodulators like opioids – to use morphine if indicated in chronic cough. And extrapolating these experiences with cough to breathlessness – well, the European recommendations prepared according to widely accepted methodology [that is] typical for such a document would be an important support for pneumonologists dealing with chronic breathlessness in everyday practice. It would be, in my opinion, of particular importance to include in such guidelines – besides rehabilitation and oxygen treatment – the use of opioids and non-pharmacological methods of amelioration of breathlessness and to discuss the role of antidepressants and [00:30:51]. Thank you.

Małgorzata Krajnik: OK, thank you very much. I have another question on breathlessness. I very much agree with your statement. It’s related to Irene Higginson’s presentation [and is directed to her]: “…with your statement that looking into a patient’s eyes may help to achieve better communication. Personally, I would add a reassuring smile and friendly attitude. In your opinion” – to Irene – “what is the most effective model in teaching medical students how to deal with patients suffering from breathlessness?” I think, Piotr, what do you think about it? How [can we] teach medical students to better understand how the patient with breathlessness might be suffering? What is the suffering due to breathlessness? What do you think?

Piotr Sobański: I think that is a part or an example of a much larger piece of cake about how we communicate in our clinical praxis. And maybe just looking in the [patients’] eyes is only one example, but I think it should make the students aware that communication, [regardless] of what we do or how we live, [in] every day communication, the smallest part is the words; the language is the smallest part. And the biggest part is – I would say like 60% of communication is the body language. Almost 50%, or 40%, is the voice. So if we become more aware that we are communicating – especially [with] distressed people – not so much with words, we are communicating with our presence… and looking [them] in the eyes is one of the methods of how you can show that you are really interested [while] listening. If you are giving your time, your attention… And it’s, to my surprise – there’s a very good paper coming from the UK, showing that only 3 hours of communication teaching is enough to increase how confident people feel with the communication. And how they do this is – they are medical students [first of all] – and they [provide] a short input [and] afterwards the people make a small group roleplay. And that’s enough to, if you once get into the role of the [other] person – you are usually playing the other role in communication – you have so much opportunity to understand what’s important. So maybe the conclusion should be that in everyday [communication], it’s enough really; you [don’t] need that much to improve the skill. And how you can try in [your] everyday work is to improve and usually ask the assistants to communicate. And I shadow them and I give them feedback, asking “how would you feel if you saw that behavior, if you heard that?” So maybe a small feedback in the clinical communication could be fine as well. But it’s not that difficult.

Małgorzata Krajnik: OK, thank you very much, Piotr. I will ask Megan how to educate medical students about the nature of suffering? How to do it efficiently?

Megan Best: If someone has never suffered themselves, I think it is quite challenging. I think we’re all… someone told me early on I’ll be a much better palliative care doctor when I have grey hair. And I think it’s to do with the opportunities to have experience and to suffer. But since that’s not going to get through an ethics committee – to make sure everyone suffers before they finish medical school – I think that it’s the humanities, [that’s] how we best understand human suffering, by understanding human nature. And there is a lot in the literature talking about how the humanities have really been taken out of medical courses because so much science is trying to get into the curriculum, but I think that if we want to help people understand – basically I think suffering is the experience of loss, and it can be loss in any areas of our lives – I think if we help our students to understand the sense of loss, [then] literature, I think, is a very powerful way to do that. You could listen to a wonderful piece of music and ask what the was composer thinking – something like Mozart’s Requiem – what was he thinking when he was writing this music? And just encourage a vicarious type of suffering by trying to imagine what it was like for the person who went through that experience. But I really think that it’s an understanding of human nature that is going to make the difference. Maybe give them a few novels to read. Thank you.

Małgorzata Krajnik: OK. Per, I have a very complicated question for you, I think, but it’s very practical. It’s probably connected with your comment on American recommendations that recommend screening all the cancer patients with a validated risk assessment tool before introducing opioids. And the question is, “how, in practice, [can we] keep the balance between opiophobia and the panic of opioid overuse/misuse? Are there any studies showing the prevalence of the misuse of opioids in advanced cancer patients and in cancer survivors? The practice with exclusively advanced cancer patients shows that the prevalence is possibly low, at least in some countries. Should we, in your opinion, consider the risk in the case of each patient – after all, many have, unfortunately, a pretty short life expectancy? How [can we] keep the balance?” I have to say that I’m very interested in your answer because in Poland, probably many Eastern European countries, and Italy as far as I know, we have a much greater problem with opiophobia than with the overuse of opioids.

Per Sjoogren: It’s an interesting and huge question. And I had some reflections on it in the end of my talk. And well, the case is that the world is driving in different gears and there are places in the world where there is a terrible underuse of opioids. I visited Pakistan last year and saw how bad it was: cancer patients are getting opioids from the black market and the only opioid that is available, actually, as we discussed earlier, is tramadol, which is far from enough. And other parts of the world, like the USA, have an opioid epidemic with lots of losses due to misuse and death. So that’s the reality and I agree with you that even in the European Union, there are huge differences. We have a relative overuse in Denmark and have some of the problems that the Americans have had – not that bad, of course, but especially in chronic non-cancer pain, we clearly have an overuse of opioids. Other parts, like Poland – I don’t know so much about Poland’s use, but I talked recently with Sebastiano Mercadante from Sicily and they have a huge underuse in the southern part of Italy. So we are driving in many gears and it’s very, very hard to achieve a balance. And I think it’s something that we should work on at a national level, but also, of course, on the international level. So it’s not an issue that I can solve, else I would be a famous man. But it is clearly something that we have to work with all the time, and be very careful that we are not going to either of the sides and to keep the balance in this. Then you also asked me about the misuse in cancer patients, of the addiction problems or aberrant behavior, whatever we call it; I mentioned in my talk [that] there are a number of terms for this and it may be even more confusing. But basically, we have a new paper from [00:41:00], [which] I presented in my talk, where they have aberrant behaviors in the supportive care department in Houston of about 20%, which is quite a surprise. This is also the land of the opioid epidemic, so there may be some influence from the environment, of course. I recently also saw data from Italy and this is quite a different situation. But this data exists and the only thing I think we should keep an eye on is the changing environment of cancer treatment, and that was [what] most of my talk [was] about. Actually, we have longer trajectories, we have earlier palliative care interventions, and for that reason there is an opioid issue that we must not neglect, not even as palliative care doctors or staff, totally. We have to recognize that there may be a problem here. So maybe we have to monitor and assess the patient in a better way, with an eye on this issue. Then, I think the question was also about cancer survivors. And I think there are a lot of publications now that [say t]here is clearly an issue with opioids. I remember [a] population-based study from Norway – there are some recent studies in cancer survivors – by Fredheim and co-workers that clearly demonstrated that here you have some of the patterns that were also demonstrated in chronic non-cancer pain. You have overuse of opioids; you have a high-dose group in cancer survivors; you have co-medication with benzodiazepines and other hypnotics. So you clearly have some indications that there may be some problems. And I think there is also some immunological study in survivors from the USA [in] specifically some diagnoses like breast cancer, where there is an indication that this is also an issue. And luckily, this population is growing rapidly, so we have to keep an eye on that, too. I think that was enough for me.

Małgorzata Krajnik: Thank you very much. Thank you.

Piotr Sobański: If I may? One comment of my cardiological soul, that of course, from one pool it’s the overuse of opioids or painkillers, but from the other point, it’s the underuse or the consequences of bad treatment of pain. And we should remember that there are studies showing increased mortality in people with uncontrolled pain. There are cardiological studies. And we should be aware that people with badly controlled pain are overusing over-the-counter medicines. And we need to calculate [there will be] a complication after using the drugs for self-medication. So I think the balance is quite complicated.

Małgorzata Krajnik: OK, thank you for your comment, Piotr. Ewa, for years the GOLD report in COPD underlined that the integrated care is not a standard in COPD due to the lack of evidence. In your opinion, what could be the possible reason for the lack of evidence?

Ewa Jassem: Well, indeed for years the GOLD report has stated that integrative care and telemedicine have not demonstrated clear benefits yet. The main reason for that, in my opinion, is lack of a clear definition of the exact structure of integrated support. This leads to the great heterogeneity of programs, which offer different interventions in each country. On the other hand, there is a wide acceptance of personalized medicine and self-management programs. One Cochrane review by Lenferink and colleagues showed that self-management, including action plans for exacerbations versus usual care in patients with COPD, provided improved outcomes including the lower probability of respiratory-related admissions and improvement in health-related quality of life. Particular stress was put on the personalized education and training related to appropriate health behaviors. Taking it all together, we are still lacking the proper structure for integrated care management. Well, one thing is important: in the GOLD report, we are actually dealing only with one disease – COPD – whereas integrated care for patients suffering breathlessness in the course of different diseases probably requires a different approach. Well, I do hope that the King’s College center, Professor Higginson together with [her] co-workers, will provide us in the nearest future with an effective proposition for structured, integrated care intervention in patients with chronic refractory breathlessness. Thank you.

Małgorzata Krajnik: Thank you very much. And Piotr, now we have a question [for a] palliative care cardiologist, whether breathlessness in heart failure patients differs from breathlessness in COPD or cancer? If yes, is it important for clinical practice? What do you think?

Piotr Sobański: It’s a very difficult question and a very good question. I think we do not have that much data in fact to say that it’s something different, but we do not have proof that they are the same. We should be aware that people with heart failure have definitely different components of breathlessness, like reduced volume from the lungs or hypovolemia. And what probably is important as well [is that] people with heart failure have a completely different pattern of breathing during exercise and that the factor responsible for experiencing breathlessness is located in the muscles. So I think that there could be similarities and for this hypothesis vote – the statement of many studies investigating opioids for the symptomatic palliative treatment of refractory breathlessness suggests that the effectiveness of opioids is unrelated to the underlying disease. But I think that they are as well separate things that we should not forget. So I think the question is completely open. And while working with people with advanced heart failure, I prescribe from time to time, if all other medicine and all other appropriate measures are optimized to a reasonable degree and the person is suffering breathlessness, I try small-dose opioids.

Małgorzata Krajnik: OK, thank you very much. A question to Per: “What is your opinion on combining strong opioids in long-term treatment, of using 2 opioids at lower doses instead of 1 [at a] higher dose? Should it be recommended in some clinical situations? Or might [there] be alternative methods to opioid switching in your opinion?”

Per Sjoogren: Well, there is very little evidence for combining opioids. And I think the most used method is to use small doses of methadone on top of an opioid with another new agonist. But still, the evidence is very, very low. There have been some studies [that] demonstrate clearly that this is very often used in specialized palliative care. And we know the reasons: methadone is an attractive drug, it may have effects in neuropathic pain conditions, [so] it’s very often used in rotation or switching. And this is probably sometimes… using a combination to stop in the middle of the switching, and that’s how it works clinically. So I think we need, of course, more studies in this field. I’m a little bit worried about too much opioid mixing. And I base this on the fact that when I was a young doctor, I was working in pain clinics in Denmark and we had a lot of chronic pain patients that came in with a mixture of opioids; it was an opioid mess. The patients very often had a lot of side effects, they were hyper [00:51:56], they had lot of problems. And when we cleaned them up, they were feeling much better. So I think this non-evidenced-based method is a little bit dangerous, but of course in the hands of people in specialized palliative care who know what they are dealing with, it can be OK and there can be good reason in the clinical situation to do it – I acknowledge that. But I think we should be a little bit skeptical about mixing opioids generally, because we don’t really know where we are when we do this. And when people advance in cancer, they get higher doses and so on; it is very, very difficult with all the [dials] you have to [turn] in order to obtain analgesia. So that’s my point of view. I think you had another question too, about… There was a question more I think?

Małgorzata Krajnik: Yes. I mean, is [there an] alternative method to opioid switching in your opinion?

Per Sjoogren: Yes, and again, opioid switching – there is very little evidence for it. It’s unidirectional studies always; we do not really have good studies. We have not had that for years, but do we have alternative methods? Yes, of course we have. We have more differentiated therapies with [00:53:30] that we should consider all the time. And sometimes I even think with longer trajectories with the early intervention, we should think a little bit about the priority of drugs – which drugs should be used in the first place and how we should build analgesic treatment up. Opioids do not always need a long trajectory to be the first choice. Maybe we should choose other things and keep the opioids low, if we are anticipating very long-term trajectories. On the other hand, we have also invasive techniques, and I think these are very underestimated. We have the celiac plexus block, which seems to be very efficient in pancreatic cancer, for instance. We are not doing that very much, in my country at least. We have also the [00:54:24], other blocks that we could consider sometimes. And of course, there are a lot of possibilities also in the oncological armamentarium.

Małgorzata Krajnik: OK, thank you very much. I have [heard] from the organizers that we have an extra several minutes because we have extra questions from you. But now there’s a great question for Megan: “How can the doctor help the patient to find meaning at the end of life?” Wow.

Megan Best: You know, I just thought of something about my last question, about a way to help students understand suffering. Something we do, when in the oncology block there are students, is invite a patient to come in to talk to the students – you need to have someone in your clinic who is healthy enough to come in and articulate enough to talk about their experiences – but that has a big impact on students as well. So I’m just adding that as a tip. You can’t find meaning for someone else. Everyone has to find their own meaning. What you can do as a doctor is be the sounding board for the patient as they try to work it out themselves. And I think what we do is we create the space for the patient to take the time to work through the issues. When someone is approaching their own death, I think it’s important that they understand the meaning of their life to let it go peacefully. But in the busyness of life, we often don’t stop to think [about] what is the meaning of our life. And I think as physicians we can say to our patients, “This is important. You do need to spend the time working this out,” and in a way validate the exercise of working out meaning of life. And one of the ways I find most effective is through the patient’s narrative. And one formal way this is being done is through the questions that can be asked; the most famous format is Harvey Chochinov’s dignity therapy, where he has someone sit down with the patient and say, “Tell me about your life. When did you feel most alive? What are you most proud of in your life? What is the legacy you want to leave behind? Are there special messages you want to leave for the people who are important to you?” And what he does in his therapies [is] he makes it into a document that’s handed back to the patient, and they can give it to their family members. But I think – that’s incredibly time-consuming – but I think what you can do is help the patient frame their life in a way that makes sense to them so that they can present their life to other people. And they need to do that themselves. So I think what we do as physicians is we validate that exercise, saying that “this is something important and it is worth the time and energy,” which can be considerable for someone at the end of life. And I think also we help them articulate what’s been important in their lives and help them to pass that story onto people who are important in their lives.

Małgorzata Krajnik: Thank you very much. And I know we have, as I said, extra minutes from the organizers. And this is especially for the last question that we have just received from one of the participants: “I’m Julius [00:58:47]” – sorry for my pronunciation – “a physician from Aga Khan Hospital, Dar es Salaam, Tanzania. The aim of palliative care is to reduce disease symptoms and suffering. I would like to know for the heart failure and [] patients, when is the right time to initiate palliation?” Right question for a cardiologist, right?

Piotr Sobański: I think it’s most principal question if we are talking about deciding palliative care for heart failure or heart disease. And maybe surprisingly, the answer is very simple: always then, if you have the need for palliative care. So if you have any suffering, if you have any problems, if you have… the simplest is of course breathlessness or pain, but there are a lot of other symptoms: depression, anxiety, fatigue – symptoms that are very common among people with heart failure – but please remember that symptoms [aren’t everything]. And it could be suffering, existential suffering, spiritual pain as we discussed today. And you do not need to reach any particular risk of death or any particular advancement of the disease. Always, if you have problems that can be addressed better with a palliative care approach. If a usual approach is sufficient at the beginning of the trajectory, you can add to the cardiological treatment, not replace it. Please, do not make the mistake, sometimes still seen in everyday life, that the people say that the cardiological treatment has to be exhausted – or even worse, that you need to withdraw cardiological treatment. It doesn’t have to be [all or nothing]. So always if you have needs, consider [whether] the person would benefit with a palliative care approach, if your [non-palliative] approach is not enough, you are not successful enough with solving the problems, please invite someone from the palliative care team to cooperate and care for this person together, rather than not referring… because even in the very last stages of the disease, the cardiological treatment has to be optimized almost day after day and the person needs the support of palliative care as well. Thank you. I hope that’s…

Małgorzata Krajnik: Thank you very much. Yes, I want to just thank you very much for your participation and a great discussion. I enjoyed it very much; I hope our participants [did] also. And especially thanks to Megan because it’s probably the middle of the night in Australia now, yes? OK. So thank you very much and I hope next time we will meet at MIRCIM in Krakow in person. Thank you. Bye, bye.

Co-financed by the Polish Ministry of Education and Science within the program „Doskonała Nauka”
(„Excellent Science”)

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