Shared decision making & patient centred care
Join Dr. Nick Weber, a clinical haematologist at the Royal Brisbane and Women’s Hospital, as he explores the essential principles of patient-centred care in myeloma.
This insightful talk moves beyond medical treatments to focus on the patient-doctor relationship itself. Learn practical strategies for effective communication, how to prepare for consultations, and how to work in partnership with your healthcare team to navigate your myeloma journey and achieve the best possible outcomes.
Chapters
[00:00] Introduction of Dr. Nick Weber
[00:31] Defining Patient-Centred Care
[04:43] Challenges in the Clinic: Time & Knowledge Imbalance
[08:26] The Patient’s Role: Preparation, Organisation, Assertiveness
[14:18] The Healthcare Team’s Role in Patient-Centred Care
[18:01] Myeloma Treatment: A Complex & Individualised Journey
[21:36] Q&A: Navigating Difficult Conversations & Treatment Decisions
[34:27] Q&A: Communication Between Specialists & Post-Appointment Questions
[36:43] Q&A: Delivering Difficult News & Planning for the Future
Transcript
So now it’s my great pleasure to introduce Dr. Nick Weber. He’s a clinical haematologist at the Royal Brisbane and Women’s Hospital and senior clinical lecturer at the University of Queensland. Nick’s a humble man and hates bios. So welcome Nick. We are so looking forward to hearing your talk this morning about the doctor-patient relationship and getting the best outcome for you and your doctor from your clinic appointment. So thank you Nick.
[00:31]
Thanks, Jo. I just wanted to thank you and Mark and the team at Myeloma Australia for the excellent work you do and for inviting me today to speak. It’s really nice to be able to speak on a topic like this which is different from the kind of talks that I’m usually giving about myeloma. It’s really, I think, a good opportunity to discuss some of the non-medical aspects of myeloma care and hopefully share some thoughts about how patients and carers can really get the most out of their interaction with their doctor.
So, I found it really interesting to reflect on this topic and I’ve put together just a few slides to share some thoughts about what it means to share decision-making. I’m hoping then that we can use those to stimulate some discussion between you and I, and hopefully members of the audience that are listening in or watching can feel comfortable to chip in and add their thoughts and questions.
[01:39]
So, patient-centred care is a concept that has been discussed widely for many years in the health system. It’s a philosophy rather than a rigid practice or clinical procedure. It’s really describing a model of care that is putting the patient at the centre of the healthcare team. So we talk about health care that is respectful of and responsive to the preferences, needs and values of patients and consumers.
So there are multiple different aspects to how this looks in practice, and really some of the things that have been emphasised as being critical for patient-centred care are listed there on my slide. So education of the patient and their family members and support people, and sharing of knowledge is very important to make patients feel informed about the decisions that they’re making with respect to their care.
Involving family and friends—and sometimes that’s someone outside of the family group. It may be involving advocates, interpreters, cultural support people, etc. Collaboration and team management. So really enlisting the help from multiple different members of the health care team, not just the haematologist and the nurse, but also other aspects of the system that can be of assistance.
Sensitivity to non-medical and spiritual dimensions as well. So accommodating, respecting and incorporating patients’ beliefs about health care is very important. These might be alternative practices, complementary medicines. They may be spiritual or religious aspects that are important to the patient. And so these things should be considered and factored into a patient-centred care model.
As always, respect for the patients’ needs and preferences comes number one. And so in order for patients to be heard, clinicians, healthcare workers need to allow patients time to express those needs and preferences. And finally, the free flow and accessibility of information. This is something that I think is becoming more possible with digital medicine and the ability to transfer information electronically.
It’s almost going the opposite way now where we have a huge amount of information that’s available online through various different sources, and it can actually be quite overwhelming for some patients looking at the amount of information that’s out there. So I think a patient-centred care model is also about healthcare providers helping patients put that information into context and interpret the information that they obtain through means outside of the clinic setting.
[04:43]
So, lots of nice concepts there, but as many of the audience will attest, clinic is a busy place and time is often short. So, these things don’t always get the attention that they deserve and I think patient-centred care is an aspiration rather than a rigidly entrenched practice in a lot of hospitals and clinic settings around the country at the moment.
Certainly, I think what I would emphasise is that any system should really make patients feel that they are in partnership with their doctor. The old model of ‘doctor knows best’, that paternalistic system of the generations before me, is really a thing of the past and we want patients to feel empowered to have a voice and to be able to advocate for themselves. And so shared decision-making really is just that: it’s shared between the patient and the doctor, with the support from nursing, allied health and other staff.
It’s not always easy though, and I think there are some things that are challenges to incorporating this kind of practice. The first thing that comes to mind is really the huge imbalance in knowledge and experience between the doctor and the patient. So myeloma, like many malignant diseases, is a very complicated beast. There’s a lot of rapidly changing information and clinical evidence that is being published, and the doctor’s job is to keep on top of all of that information and to distil that and interpret it for the patient’s individual circumstances.
Patients on the other hand may have never heard of myeloma until they’re first diagnosed with the disease. And so really starting from a zero starting point. That huge imbalance in knowledge does put the patient at a disadvantage from the outset, and finding a common ground there in terms of education and sharing of information does take time.
So I think that’s where support agencies such as Myeloma Australia are so critical in helping patients to do their background research and to understand a bit more about myeloma, its pathology, its treatment, to help give patients a little bit more of a platform to form their own decisions.
I mentioned before that time is a critical factor in the clinic. There’s one doctor for many, many patients, whereas for each patient there’s only one doctor. So competing demands for physician time is a factor that is very difficult to address, not only in the public system but in the private system as well. And so it really means that patients need to try and get the most bang for their buck out of the consultation time that they have with their doctors. We’ll talk a little bit later about how we can do that.
And finally, the system that we work in in Australia, the model that we have of health care, is resource limited. We don’t have infinite funding and resourcing to provide the amount of support that maybe we would like to. And so we have to be mindful that there are restrictions on access and availability to treatment. And I think we all need to accept that we have an excellent healthcare system in this country but it does have its limitations, and we need to try and work around those limitations rather than feel defeated by them.
[08:26]
So just some thoughts about what can patients and carers do to participate in patient-centred care. The three things: preparation, organisation, and being assertive.
So preparation is important. As I mentioned, when we have a small window of time to discuss things in the clinic, it’s a good idea to write down questions in advance. It’s surprising how infrequently people do this. I think we all assume that our memories are fine and we’ll remember to ask questions, but without fail, people always remember what they wanted to ask 10 minutes after they leave the consultation room. So, it’s a very good idea to get into the habit of writing down, keeping a list on your mobile phone or a notebook in your bag, and just jotting down questions as they occur to you so you can ask them at your next consultation.
Likewise, if you’re having trouble with treatment, if you’re having side effects or experiencing things that may be intermittent—maybe not happening every day, but when they do happen—it’s a good idea to write them down so that you can remember them later. Being aware of what you’re taking in terms of medications is critical. We really do a lot of medication counselling in clinic and pharmacists are often crucial in this. But it’s surprising how often I’ll ask patients what they’re taking and they really won’t be able to tell me. They’ll defer to a caregiver or they’ll assume that I know it all because it’s all written down in front of me on the screen. But we make changes to medications all the time. And so keeping a printed list, annotating that list and asking for a refreshed list when things change is a great idea and bringing that to every appointment.
Seeking information from background sources before your appointment is a great idea. So doing some homework through Myeloma Australia, through other organisations that are reliable and presenting good quality information, then helps you to refine the concerns and questions you have to then discuss and seek clarification from your doctor in the consultation.
Being organised is a similar concept to being prepared, but really is more around helping things run smoothly when you come into the clinic. So, making sure that your blood tests are done in advance of your appointment, arriving on time to the appointment and making sure you know where to go. Often very helpful to bring a second person, a set of ears and eyes to help absorb information that you may not be able to absorb. And sometimes to help when information might be unexpected. If there’s bad news or a change in plan, it’s a good idea to have someone else in the room. And maybe if you don’t have someone available in person, you could have someone on standby so that if you do need to enlist their help, you could perhaps call them and put them on speaker phone during the consultation with the doctor. I’m sure all of your treating physicians would be very happy to have someone else on the phone just listening, providing that second set of ears to hear what’s going on.
And then being prepared as you’re leaving the clinic involves making sure you know when your next appointment is, making sure that you’ve got a list of your future treatment appointments, that you’ve checked them that the times appear correct, and that you’ll be available to present on those days.
Finally, being assertive as part of that partnership and that relationship with your doctor is important. So, it’s always a good idea to ask for help if you’re unsure, if you’re uncertain. Sooner you ask, the sooner it can be sorted out. And so, tell staff if you’re unsure. Tell the nurse that’s giving you treatment or the myeloma support nurse that’s seeing you in clinic. It does not hurt to ask and there’s no such thing as a silly question.
I think people probably struggle a bit with the next point about making your wishes known and your preferences clear. I respect and understand the fact that a lot of patients may feel uncomfortable discussing personal issues or expressing preferences that may go against what’s being recommended to you by the doctor at the time. I know a lot of patients in the past with me have only verbalised those concerns to other members of the healthcare team and seem to have been reluctant to share them with me directly. And I think that’s not a fault; it’s often because people don’t want to offend or don’t want to appear to be ungrateful or difficult.
But really what we’re talking about is putting you at the centre of the decision-making process. And if you don’t speak up and tell us what you’re thinking or what your wishes are, then you will feel a loss of control and feel ultimately unsatisfied with your care. And so if you do need more time to consider options or to seek a second opinion, then it’s always a good idea to ask for more time. Just say, “I don’t feel 100% comfortable with the direction things are going. I’d like the opportunity to go away and come back in two weeks and perhaps discuss it further.” And I think the only time that it may not be appropriate to do that is if there’s clearly a medical reason not to delay treatment, and in that case, I would expect your doctor to communicate that and explain why that might not be appropriate.
[14:18]
So on the other side of the coin, what can we as healthcare staff do to practise patient-centred care in the clinic? I think the first point is critical. Information overload is a common problem, especially when patients are first diagnosed with myeloma. And so it’s our obligation to provide succinct information, relevant information in digestible amounts. That may be in the form of written material. It may be recording a consultation and perhaps following up with a phone call or another visit shortly after to help with further communication.
We need to be able to allow patients time to ask questions and to seek clarification about things that they’re not sure of. And this is where the system often produces impediments and restrictions on time. Getting around that and navigating that can be tricky. But it’s always a good idea if we signpost early on that we have a lot to talk about, that we’ll need to make a follow-up appointment to get through what needs to be discussed, and that there may be alternative strategies for doing that. So perhaps a telephone call at the end of a clinic rather than a face-to-face review. Perhaps organising a family meeting with other members to come in at a certain time. And I think this is where support staff, nursing staff, can be very helpful with organising those sorts of opportunities.
And I think finally what we really should be doing is, rather than telling patients what to do, we should be presenting options. And based on those options, it is an obligation I think for us to present what we would recommend, what we think is in the patient’s best interests, and ideally we would see the patient agreeing and both parties coming to a mutual decision.
Sometimes patients may choose an alternative option from what the doctor’s recommended, and as long as that’s done in an informed way, that’s completely appropriate. But I think what sometimes happens is patients are presented with options but no clear recommendation or guidance from the doctor about which is the best, and I don’t think that’s very helpful for patients. I think patients should have options, but also they should be given a ‘best option’ on the opinion of the haematologist.
What we should avoid doing as healthcare staff is making assumptions about patients’ wishes. I think that often happens in oncology where quality of life versus quantity of life becomes a balancing act that the patient may have different ideas and beliefs from the doctor. So making assumptions about what a patient would want based on what I would want as the doctor is not appropriate.
Presenting a single option without even acknowledging that there are other alternative options to explore, I think is not in the spirit of patient-centred care. And disregarding patient concerns as being trivial or irrelevant, I think is also a big no-no. We don’t want to make patients feel as though they’re not being heard, and some concerns whilst they may seem trivial to the doctor may be hugely important for the patient or their family. So these are things that I believe we should be doing better as healthcare staff.
[18:01]
So how does this look in practice? Well, myeloma treatment is an increasingly complex journey, particularly as patients move from the newly diagnosed into the relapse setting. And what’s confusing not only for patients but also for myeloma specialists is that there really is no single gold standard pathway to follow. There are multiple options and, more than any other blood cancer that I treat, myeloma requires true individualisation.
So what worked very well for some other patient may not actually be in the best interests of the patient in front of me, and choosing which approach to take at which time point is really a very nuanced decision. So I think that’s a really critical thing for patients to understand: that there is no single right way to treat myeloma, particularly in relapse, as things change and the treatment options are increasingly expanding.
We know that these decisions may need to be reviewed and new evidence may emerge to suggest that perhaps we take a different course from what we’d originally planned. So it’s very difficult to think three steps ahead. It’s sometimes not in the best interest of the patient to think three steps ahead because things are changing and new options may be available all the time. So I think for simplicity it’s best to keep things all about what’s happening now. And in terms of what’s coming in the future, we leave that for the time that it’s necessary.
In weighing up these decisions and making these decisions about treatment, there’s lots of different aspects. I’ve just presented here some questions that go through my mind when deciding about what treatment to offer a patient, and then what the patient might be thinking and what questions they’re asking. And they’re really very, very different questions.
And so, I’m thinking about the medical aspects of the treatment, the history and the characteristics of the disease behaviour, what geographical or financial limitations may be placed on patients and how that might affect their treatment. Whereas patients may be thinking about: How is this going to make me feel? Is this going to stop me from doing things that I want to be doing? And if so, is it worth making that sacrifice? Is it going to pay off for me in the long run? Can I get extra help with managing this treatment? How do I tell the doctor that I’m not interested in further treatment and I’d rather pursue a palliative care approach?
And so if we’re not communicating and discussing these questions, we may very well arrive at very different outcomes and make very different decisions. And so being in partnership means bringing both of these sides of the table into a middle ground and working together, understanding where each party is coming from to then move forward together and make decisions that we’re comfortable in progressing with. And I think communication and mutual respect are really the two principles that are critical there to make sure that this all works nicely.
[21:36]
So having said that then, Jo, that’s all I wanted to say about what patient-centred care means to me, and I’d be very interested to hear your thoughts and any additional things that you observe from the clinic space about where this works, where this doesn’t work, and how we can make it better.
Thanks so much, Nick. I agree with you. The clinic space is not ideal, but we all have to work within systems and, by understanding how those systems work, we can make them work best for us. That was a really good overview of your approach to patient-centred care, which is really the ideal, and I think you’ve outlined that really well.
Unfortunately, on our support line, we do get lots of calls from people about how best to communicate with their doctor or being frustrated at not receiving the information that they need to make those decisions. So we all know that people communicate in different ways as well and there are different personalities, and not all personalities get on, but unfortunately you sometimes just have to make the most of being able to deal with someone, and the strategies that you’ve outlined I think were really useful.
So you did talk about the different priorities of the doctor and the patient, and it is quite common that people feel like they want to give up, that it’s becoming too much of a burden, and “can I just let nature take its course?” So, how do you have that discussion, Nick, to maybe outline other treatment options and take those concerns into play?
It is a common question, Jo. And it’s different for everybody. As you say, some patients are very keen to push forward and will happily accept toxicity and burdensome treatments if they think it will give them some disease response and remission. Other patients have a very different approach and are really unwilling to accept any toxicity if they’re feeling well or relatively well.
It’s a very individual choice. I think one of the things I come across often is fear about side effects, and often that’s based on past experience with chemotherapy treatment. And patients may have had a line of therapy that resulted in side effects such as neuropathy, fevers or hospital admissions because of infection. And therefore, they become very reluctant to consider re-treatment when their myeloma progresses because they’re afraid of having a similar experience to what they had the previous time around.
And nine times out of ten what we offer at relapse is not what we offered the time before. And so when we move from, say, a bortezomib-based approach to a lenalidomide-based approach, the treatment is very different and the spectrum of side effects can be very different as well. So I sometimes find myself having to challenge that fear and explain to patients that what we’re giving you this time, or what I’m suggesting that we give you this time, is not what you had last time, and the side effects are not necessarily going to be as bad as they were and may actually look very different. And we don’t know until we try.
And I think overcoming that hesitation is the first aspect. The second aspect is: if we do not treat—if we truly don’t have any options that we think are going to be acceptable to you as the patient that are going to have a tolerable side effect profile and are going to have a good chance of working—then I think it’s entirely appropriate to adopt a supportive care approach, which is where we focus on symptom management and we maximise support to keep patients at home or wherever they wish to be while the disease takes its course.
If we have options, however, that patients haven’t tried that we think are likely to work and should have a manageable side effect profile, then it does become difficult for me as the doctor when patients say, “I really don’t want that. I don’t want that because I don’t want any side effects and I’m enjoying my quality of life as it is.” And the reason it’s difficult is because myeloma itself is a very unpleasant disease, or can be very distressing, and if we abandon therapy or stop therapy, we run the risk of the myeloma progressing and causing side effects and symptoms of its own.
And so in that circumstance, treating with chemotherapy or some other form of therapy is really designed to try and prevent the myeloma from causing its own organ damage and its own symptoms. And so having to explain that can be a little bit difficult. Myeloma is not a painless condition. It does have the potential to cause significant disruption to quality of life, significant pain, and untreated myeloma can progress for many months and make people really uncomfortable and miserable.
So looking at it from that perspective then challenges that concept that, “if I do nothing, if I don’t have treatment, my quality of life is going to be great.” And people I think don’t really think through to the end result of that. That’s kind of two things that come up frequently in those discussions with me.
At the end of the day, I have patients from time to time who have understood that and say to me, “Yes, I hear what you’re saying. I understand that in the future myeloma may make me sick, but I really don’t want anything until that point. Until I absolutely have to have treatment, that’s when I’ll do it.” And whilst I might be uncomfortable leaving it till that late stage, I think I need to respect the patient’s wishes in that case if I feel that they truly are informed about that.
So many things in myeloma come down to that equation of risk versus benefit, don’t they? Yeah. Whether it be the risk of an impact or short-term impact on quality of life for long-term gain of disease control, or whether it be the risk of the side effects in later-stage disease versus the risk of not treating that disease and the impact that would have on quality of life. Yeah. It seems like a lot of those discussions hang around that equation.
One of the strategies—sorry. And I think that’s where it’s important for patients to ask: “Is this likely to work? So, what are the response rates like of the treatment that you’re suggesting? And what is the toxicity profile? Do you think I can tolerate this treatment?” And if the answer is there’s a good chance that it will work and there’s a good chance that you’ll tolerate it, then I would be 100% in support of it.
If it turns out that the treatment that’s being suggested has a 20% success rate and a 90% chance of causing significant side effects, then you know that needs to be factored in and patient will then make the decision. “Okay, I don’t like those odds. I think I’ll pass.” And I think asking for a bit more detail about what can be expected from the treatment is really important, rather than just blindly accepting and taking the treatment as suggested.
And we do often explore those options in a little more detail on the support line. We never make recommendations for treatment of course, but we can give the background to the side effects that may be expected and look into some of the issues regarding access and travel and the financial burden that might occur from that treatment. So, as you say, these are all the things that need to be taken into consideration and not just the pure myeloma itself.
And one of the strategies we talk about on the support line in regards to symptom management is keeping a symptom diary to note when something started and to check in maybe on a weekly basis as to whether that symptom has got worse or better. And that symptom diary will accumulate into a history—a personal history of your disease—and help decide when a change of treatment is offered, and that you might be facing a new set of symptoms or symptoms that you’ve dealt with before and how you best manage them, and it’s there in a record. So it’s one of the strategies that we promote a lot as patients go through their myeloma journey.
[34:27]
Nick, lots of patients go through their myeloma journey, they often accumulate other medical conditions or have brought other medical conditions to the diagnosis of myeloma, and end up seeing multiple specialists. So, how do you all communicate so that the patient still stays central to this story and everybody’s aware of all the other prescriptions that people have contributed to their medical management?
It can be an issue, and especially when that care is shared between community and hospital providers and whether there may be private clinicians and public clinicians. In patients who are seen exclusively in the one hospital, it’s very easy to share records, to see letters, to read clinic notes and know what’s happening. But sometimes the GP is expected to be the central point of contact. The GP may be receiving correspondence from private physicians, from community services, from optometrists and podiatrists, and me in clinic—I don’t receive that information necessarily.
So I think keeping the GP actively engaged while you’re having myeloma treatment is very important. I know that you’re often seeing us here in the clinic once a week, and so it doesn’t leave much time to go and see the GP. And often I find myself doing scripts for blood pressure tablets and diabetes tablets because I’m seeing the patient more frequently than their GP ever did. But I think it’s a good idea once a month to make an appointment just to touch base with the GP. Let them know how you’re going with your treatment, let them know what’s changed since the last visit, and give them an opportunity to stay engaged in your care.
Because things like blood pressure management, cholesterol screening, screening for other cancers like prostate cancer and bowel cancer—all of those things are still important to continue while you’re going through myeloma treatment, and the GP I think is a critical person and too often they get left out of the loop when patients become engaged with the hospital system.
Other than that, I do think it is difficult in this system where there is segmentation of care. I try to encourage patients to bring results and copies of results to their appointment with me so that I can at least see what’s going on with, say, the cardiologist or the kidney specialist. If necessary, we can pick up the phone, but time is always an issue. And so, if patients can request copies of their results, bring them in person, or at least ask that those results be copied into us at the hospital, it does help to keep it all on file with us.
Thanks, Nick. You did mention earlier in your talk that it’s quite common for patients to remember all those questions they wanted to ask 10 minutes after they’ve left the clinic. And you did talk about, you know, writing those questions down in real time, whether you’ve got a list on the fridge or in the bathroom or somewhere where you have those thoughts pop into your head, and then it’s a good idea to do that. But if I have forgotten, can I call you back or what’s a good way to address those? Can I feed them through someone else in the system?
Yeah, I think it’s a good idea. And most clinics should provide patients with a contact number for appointment inquiries. And it’s a good idea to establish who’s available to respond to those sorts of queries. So there may be a myeloma support nurse, there may be a cancer care coordinator, or it may be a nurse in the clinic section. If you can at least get a phone number, if you need to communicate something to me as the doctor that you think is important that cannot wait till your next appointment, then it’s good to speak to the clinic staff and ask them to pass on the message as an email, or face to face, and ask to have your telephone call returned. So, leave your phone number and ask for a call back. It may not be the same day; it may be one or two days later.
And, you know, I can’t guarantee that you will get a reply if your question is not critical; it may get sort of forgotten or missed. So, the best thing to do though, I think, is to establish early on who you can direct your concerns to and be mindful of the fact that some things can wait till the next appointment, and that urgent queries are the ones that really should be directed to the clinic staff, because of course they’re always very busy as well.
Yes, I think it can be easy to stay focused on yourself and forget that this whole system is working around you and that there are a lot of people. Nick, just one last question. When you have to give someone bad news, you know, it must be really tough on you as well. You’ll know in advance that the results are not what you’ve wanted to see or the treatment’s not working as well as you would have expected, or the patient is suffering side effects that are looking like you may have to change direction. How do you prepare for that and then ensure that that patient is supported during the receiving of that information? How do I prepare myself for that? It’s, well, you know there is an impact on you as well as the patient, obviously.
[36:43]
Yeah. Look, I think myeloma patients in general tend to be quite engaged, and because we have the paraprotein as a tumour marker in the majority of cases, most patients know what their numbers are doing and ask, and we have a month-by-month account of what’s happening. So I do try to signpost early for patients if things are not going in the right direction.
Generally speaking we don’t act on one result. We need to see a trend before we make a call about whether we need to change our tack or not. And so making sure that patients remain informed about their results and signposting early on if things are not heading in a good direction is what I try to do. And I find that most patients are interested to know that information so that when we do have the discussion that, “Look, it looks as though the myeloma is no longer responding to this treatment or it’s time to start another line of treatment,” at least there’s some warning. And it lessens the shock somewhat.
I think the hardest conversations are those when we’re reaching the end of our available therapies and there may not be any suitable options left. And again I think being prepared and thinking ahead of these things is really important. So I’ll encourage patients to have at least considered what will happen in the worst-case scenario: to make arrangements and to think about what they want for an end-of-life scenario. Have those discussions with family and friends. Make a will. Make an advanced health directive. And then put it in the drawer and forget about it and focus on, “What are we going to do today to help this situation?” And from there on it’s a day-by-day process.
I don’t think that approach works well for everybody. Some patients interpret that as me telling them that they’re going to die in the next three months and it’s all doom and gloom. What I’m trying to do is prepare for that well in advance when patients are in a good frame of mind to be doing that and to be thinking ahead when it looks as though we’re running out of options and there may not be a lot of time ahead. Making those end-of-life arrangements and then focusing on the day-to-day, and making sure that we’ve got—there’s always something we can offer, whether it’s chemotherapy, whether it’s pain relief, whether it’s transfusion support, or whether it’s just a face-to-face chat. You know, I think our job is to be there through all of those stages of the illness.
I don’t know if I’ve answered that well, but that’s my reflection on a difficult subject.
It is a difficult subject, but I think that if you can guide patients through that early process of recognising that there are important decisions to be made and that there is still a plan available—knowing that in advance, it can actually be a real comfort and relief not only to the patient but also their carers and their family, that “yes, but here’s the plan. Here’s the structure.” So that then can help me go back to focus on the day-to-day needs as you said, and put that in the top drawer. We’ve addressed that and maybe at some stage in the future that’s going to be needed, but not now, and there are still things to do. So it is a great approach and thanks for outlining that, Nick.
You’re welcome.
Keep watching
Watch our other webinars
-
National myeloma update 2025
Prof. Miles Prince’s 2025 myeloma update: from chemo to cutting-edge immunotherapies like CAR-T & bispecifics. Learn about new treatments, access, and the future of care
-
Exploring impacts of new technology
Associate Professor Edwin Hawkins explores how myeloma cells interact with the bone marrow microenvironment and evade immune responses. Using advanced imaging and spatial transcriptomics, this…
-
Your relationships – managing change
Psychologist Natalie Tucky discusses mental health, supportive care, self-advocacy, and wellbeing for people living with myeloma and precursor conditions.
-
Your immune system- Supporting immune function
Learn how multiple myeloma affects the immune system, why infection risk is higher, and how treatments like immunoglobulin replacement, vaccines, and antibiotics are used to…
-
Autologous stem cell transplant
Clinical Nurse Consultant Jenny Paul explains the autologous stem cell transplant process for myeloma, covering mobilisation, chemotherapy, reinfusion, side-effect management, and long-term recovery in a…
-
Your myeloma – individualised treatment targets, where are we now
Dr. Christian Bryant explains myeloma risk, genetic testing, & MRD monitoring to personalise treatment. Learn how test results can guide your care decisions.
-
Your voice shared decision making
Learn how shared decision-making empowers myeloma patients to align treatment with personal goals for better care. Dr. Nathan Close explains the collaborative process.
-
Your movement – individualised exercise intervention
Learn how individualised exercise can be safely adapted for people with multiple myeloma, including guidance on fatigue, bone lesions, treatment side effects, and exercise intensity.
-
Living well long-term – supportive care
Learn practical supportive care strategies for living well with myeloma, including symptom management, infection prevention, bone and kidney health, mental wellbeing, and the role of…
-
Using diet as medicine
Learn how nutrition can support muscle, strength, and recovery during multiple myeloma treatment, with practical strategies to manage side effects and prevent malnutrition.
Connect with us
Stay informed with the latest myeloma research, treatment updates, and support resources. We offer tailored newsletters for both patients and healthcare professionals with relevant information and community updates.
