Multiple Myeloma Hub
Implementing a holistic pain treatment plan in advanced multiple myeloma
On November 10, 2022, the Multiple Myeloma Hub held a virtual symposium on the topic of holistic pain management in multiple myeloma, with three established leaders in the field talking on different elements of pain management.
Here, we share the presentation by Barry Quinn, Queens University Belfast, Belfast, UK, on implementing a holistic pain treatment plan in advanced multiple myeloma.
In this presentation, Dr Quinn considers the less discussed aspects of pain management, such as hidden elements of pain, and the principles of good pain assessment.
[Disclaimer: All content produced by the Multiple Myeloma Hub is intended to adhere to the Centers for Disease Control and Prevention (CDC) Clinical Practice Guideline for Prescribing Opioids for Pain, issued in November 2022. Opioids are a class of highly addictive prescription painkillers; therefore, all information regarding their use must accurately describe the benefits and serious risks of misuse and abuse. The CDC recommendations do not apply to pain management related to sickle cell disease, cancer-related pain treatment, palliative care, or end-of-life care. Key principles to be taken into consideration include: i) nonopioid therapies are at least as effective as opioids for many common types of acute pain and are preferred for subacute and chronic pain; ii) before starting opioid therapy, clinicians should discuss with patients the realistic benefits and known risks; iii) when opioids are used, clinicians should prescribe immediate-release opioids at the lowest possible effective dosage; and iv) clinicians should regularly reevaluate with patients the benefits and risks of continued opioid therapy and when changing the dosage].
we heard how to assess and the pathophysiology of pain and the importance of the role of the patient so now we have Dr Barry a queen from Queen's University Belfast in the UK who will tell us and hopefully will convince you how to implement a holistic pain treatment plan in advanced disease Barry the floor is yours okay thank you Muhammad and thank you hands for a lovely talk and I really thought a thoughtful talk um so yes I'm going to talk about uh well first of all these are my disclosures uh nothing surprising there nothing that would get me before the courts that's good to know and my objectives is just to talk about the concept of Pian and I'll explain why I think that's important and then just look at the they are to review our approach to assessing Pian some of the barriers and then how we might apply a more holistic approach to pin management and just to warn you it will be a challenge and what I'm inviting you to do but you'll see why I I think it's important so um it's interesting that you know the pain continues to be one of the symptoms and most associated with cancer I think we'd all agree with that whether it's multiple myeloma or any form of cancer and it's one of the symptoms that people fear now I was thinking that over 30 years ago when I started in Ireland in in my nursing practice and working in cancer this was exactly the same so in over 30 years this has not changed so that's a challenge for us um and uh we still as Hein said there's more to be done so pain management despite the fear remains a challenge sometimes it's underreported it's often misunderstood by the patient under ourselves and therefore it can be under treated now I think there are two reasons for that one is because PN is personal and I think the other thing is um is maybe we are not clear about what we mean when we use the word Pian so this is the normal uh uh calcification of pain we're all familiar with it and Heinz mentioned some of this but notice no susceptible neuropathic duration or cute and chronic and then the onset whether it's refractory intractable breakthrough and incident but that's not enough it's not enough and I carried out a piece of research a number of years it was published in 2020 and uh asking and exploring with people living with Advanced disease about their pain and other symptoms and they talked about this pain which wasn't always visible to others including doctors and nurses and indeed the families and they talked about the suffering that they experienced they used this word suffering which doesn't often appear in medical or nursing card actors um but it was suffering because it was personal to them um and they felt that people did not always understand what they were going through and again Heinz demonstrated that in one of his studies um and ultimately a patients can feel alone and isolated and I don't think anybody would deny that feeling alone and isolated while living with a plant disease is a component of pain that is not always addressed in the myeloma setting so this is a piece of work which has been adapted by my colleagues and we worked together on a managing Advanced Pain in historian managing p in the advanced campus setting but it was worked by Michael Carney a palliative care physician so Michael says that you know very often it's like an iceberg well it's this is true of any symptom but when we meet somebody in pain or with uh peripheral neuropathy or nausea and vomiting or breathlessness much of what we see what we what we initially assess is is this little bit above the water edge in pink but actually a lot of the impact of the pain or the symptom actually is more hidden underneath the water line the spiritual the social the emotional and physical and and I think we are reasonably good at the physical I think we do make some attempts at the emotional but I think we struggle quite a bit when it comes to the Social and spiritual elements of pain reasons for that it takes time it does mean that we have to deep uh we have to dig a little deeper and it takes courage because it will make us as clinicians more uncomfortable but the reality is fear is sorry Pian is a big part of the the person's story um and as I say over 30 years that has not shifted that fear of pain so these are some of the obstacles I won't go into them on but I think uh still there is a lack of knowledge of what we mean by holistic pains so if you think about that more hidden spiritual and social component and I often say you know there is no drug in any uh in any drug formulary that will touch social or spiritual pain so maybe we need to think a little bit differently I think there is a fear to uh to to admit peer uh Heinz mentioned one is that uh maybe but it's something to do with the relationship between the patient the doctor I would also offer another couple of observations I think for patients to admit that they appear is to admit that their disease is progressing uh to admit their pain is to maybe upset their family and also there may be a reluctant to net pain in case there is any change in their cure of treatment or any reducing of the dose I think on the other hand there is reluctance sometimes from Healthcare professionals doctors and nurses and pharmacists to ask about pain because the question is what am I what can I do what can I do particularly in these more hidden and components of pain that maybe are linked to the suffering that people describe so really what I what I'm thinking about and what my colleagues and this expert group have been doing is you know is trying to engage with this more holistic approach to peer management and actually I suspect if we do some of that Under reporting some of some of that on the treatment might be alleviated in some way so I think the first thing is we we all know the principles of assessment but it's just slightly worded uh differently but really it is about paying attention to the person in front of us and that really means Thinking Beyond the symptoms so not just that the fact that the tumor or the myeloma is causing pain but what does that pressure that pain mean to that individual in front of them and what is what is that pain how is that pain affecting the quality of someone's life and again made reference to that the next step is creating time and being present and I warned you that this would be a challenge I don't think there's any doctor in the world I don't think there's any nurse in the world who has extra time in a little box or in a little bag somewhere and this is something this is a challenge for all of us but perhaps it is only by creating time and being truly present that we might be able to address and assess some of these hidden components of pain having spent a bit of time really uh and Having the courage to explore piano with people we with the patient can co-create a treatment plan together and then obviously interview uh Implement a treatment strategy and that might be pharmacological but it may be non-pharmacological and obviously reviewing to see if it is working but as I say it is a challenge and um and again I'm sure this is something that might come up in discussion and because I certainly haven't had it and all other pieces of research have been involved in is this lack of time so some of the assessment questions that might come up are obviously well known to you but we often ask about the character and the site of pain so for example where do you feel the pain we will ask about any Associated Factor so how is it affecting your sleep your your life your your social life your recreational life but also thinking about um pain rarely shows itself in isolation from other symptoms unequally important is what are the expectations of the person in front of you so for example you know um you know what you know I think a really good question is you know what are you hoping from uh from European treatment for some people they just say Barry take away the pain I don't care how sleepy I am I just don't want to appear in and then other people says you know I will cope with an element of pain as long as I can still continue to be a mother and a father to my children to be a son or a daughter to my parent parents so again you know the personal choice uh I wanted to move we as a group wanted to move a wee bit forward further forward and we've come up with a more a different uh description opinions remember at the beginning and said I'm not I'm not quite sure we always understand what we're talking about when we use the word pain are we talking about physical pain or are we including the social emotional spiritual elements so while no susceptible neuropathic are very important absolutely and will never will always be important this is a human approach to pain which sees a pain whatever it might be as some form of disturbance or disruption in the really a key relationship with the person so for example so we see Pian as a disturbance or A disruption in the relationship between the person and their body so a tumor pressing on a nerve a tumor affecting an organ and whatever it might be a social opinion is a disturbance or A disruption between that person and the world what the world is to them and it might be their family their work and their society spiritual pain is a disruption or a disturbance and the relationship between the person and what is important to them their beliefs and values I was talking to some nurses yesterday and I was saying you know whenever you come close to what is important to someone you're very close to their spirituality and what's spiritually important and what's virtually what is important to them spirituality and importance very closely linked and then emotional opinion is there a disturbance in the relationship between the person how they feel about themselves their emotions and so this is just a slightly different approach uh complementary approach I would say to very often the pain descriptions that we see and have been using for many decades so one of the things is we have created this is not as assessment tool some people say Barry we have so many assessment tools this is exactly what it says it's a conversational tool and what it is is it can be used in clinical practice where when the patient is waiting to come and see the doctor the nurse you they may ask just circle three words that may be best describe European today now what this does you can see that there are words there like the sharp annoying these are common words that we see with physical pain but also uses words like lost um ignored frightened and why this is important it does a number of things one it acknowledges that these elements are really important uh two it it opens the door it opens a door to the patient but it also opens the door to the doctor or the nurse and three it gives people permission to talk about these important things now again it takes courage because very often we are not trained to look at some of these things but I think it wouldn't take a lot of training to nebulous to have these conversations and then if required to repair on so um again these are just some approaches to reducing pain I'm not going to go into them but around physical pain it's about recognizing around social peanut around support around the emotional pain is really an invitation for us to come closer and to understand the impact of emotional pain and really spiritually and bringing up things about acknowledgment you know very I very often I say that when we come to addressing spiritual pain there is no fixed uh answer um sometimes it's about presence and it's about um acknowledging the beliefs and values and how those beliefs and values might have been Disturbed and there again thinking about whether the person does want to talk to a member of the Pastoral team or counselor but um in my in my experience I would say probably 90 of people living with cancer don't need to see a psychologist a lot of it what they need is somebody to listen and that can be a physician it can be a nurse it could be um it could be uh any member of the healthcare team and indeed maybe a volunteer again I'm not going to go into this because the next speaker will go into some more detailed but again it's really helpful for us to think about but I'm just thinking about all of the systemic treatments we're involved in which can reduce uh clean but also thinking of the pharmacologic supportive treatment on a farmer law but non-pharmacological intervention and then just to say I'm going to State the obvious but every single one of these drugs has a has their own side effects so if we're going to consider them then consider the side effects and how we manage those um so uh again this is just a complimentary complementing those treatment by really engaging with the person to ask them what are their priorities you know and maybe suggesting physical or complementary support thinking about the family because why the patient is worried about the family the family is worried about the patient so actually it's looking at the whole family system and maybe you know engaging with how people feel about themselves acknowledging again their values and beliefs and maybe simply remembering that 90 of what people want when it comes to emotional and social and spiritual opinion is somebody to listen and to understand and to move away from that place of isolation so again in my study um uh I think this is lovely but one of the things I discovered was you know what caring meant and and patients in the study are people living by The Bounty cancer did talk about the carrying that was shown to them by family members but also by doctors and nurses and other Healthcare professionals but amidst the uncertainty and there is a lot of uncertainty living with Advanced myeloma the pain and the painful realities that each person had the fears caring was perceived as occurring when three things happened when another person carried out a simple act of kindness so this is not this is not we don't need to go to college to learn this stuff we know it it we've got it so one is a simple act of kindness two is a caring attitude and three if somebody simply to pay attention to them so um we can do it so in summary pin is frequently underreported and under treatment under treated and I think that will continue until we have the courage to really go below the water edge and we can help one another with that we need to continue to engage with the physical component but also the social emotional spiritual Dimensions obviously opened honest and sensitive communication is essential people want us to tell the truth sometimes when they're ready they do not want us to tell lies but they may not be ready for the whole troops today but experienced teachers is that that that's where our expertise comes in again prevention so often as Heinz said we can predict that people with myeloma are going to appear but all elements appear and together with the person in need we can co-create a peer management plan which is addressed as what's important to them and to help them to live with advanced disease so I think that is me just up about 15 minutes and I'm going to hand back to Muhammad thank you Muhammad thank you very much uh very again for a lovely and inspiring talk
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