Emotional support for lung cancer

This podcast has been developed and funded by Pfizer. Hello and welcome to the ALK+ Podcast, in this episode we will be looking at emotional support services available to patients with ALK+ NSCLC, with a panel that has been drawn from all sides of the healthcare journey.

My name is Mya and I’m a Medical Affairs Advisor in Pfizer’s UK oncology team.

Before we begin, I would like to advise listeners this this episode will contain discussion of difficult topics, including suicide, which some may find upsetting. If you are concerned for yourself or someone you know, please reach out to a healthcare professional.

I’m Sharmistha, I’m a medical oncologist and I see patients who have, specifically, lung cancer, and I specialise in ALK positive lung cancer. 

Hi. I’m Debra. I’m an ALK-positive lung cancer patient, but I’m also the Founder and Chair of ALK Positive UK. It’s a charity that we set up to support, empower and advocate for all ALK positive patients across the UK and their families. 

I’m Daria. I’m a Consultant Clinical Psychologist and I work in cancer and end of life, so, I provide psychological support to patients, carers, and also staff that work directly with people affected by cancer.   

What is your experience with emotional and mental health support? How should cancer patients be supported emotionally during their journey?

Every single patient that has a diagnosis of cancer should receive some level of psychological support. What we know is that 25% of those people may actually warrant a level of psychological support that can only be offered by a specialist psycho-oncology team. Unfortunately, there is a big disparity of these services are delivered across the country. 

Even across London, there is quite a great variability. The NICE guidelines for cancer and psychological support was actually published in 2004, and has never been changed since. But what the NICE guidelines suggest is that each single individual that receives a cancer diagnosis will experience some psychological distress. And that, according to the level of distress, that we should offer a different level of intervention.

I mean oncology is a journey. And people move from curative to palliative, to end of life. And every time you move from a journey to another, from a stage to another, it’s a new trauma, it’s a new battle, it’s a new outlook in life. And you cannot just be prescriptive about what are patients’ needs. 

NICE guidelines also suggest that each individual should be assessed for psychological distress, and that really much depends on the skillset of the team that is looking after the patients. NICE guidelines suggest that there are four levels of psychological distress.

At the basic level, everyone has a normal adjustment response to psychological distress. Level two, normally there are people that experience some psychological distress that is quite mild to moderate, and normally, clinical nurse specialists are best fit to provide that emotional support. 

At level three, we will have patients with a moderate amount of psychological distress, but that could be looked after by someone like a counsellor or family therapist.

And at level four, we have people with quite severe psychological distress, and normally would be either a clinical psychologist or liaison psychiatrist. So there are guidelines about what patients need to access. 

And unfortunately, because there is a great variability, what, normally, patients will get is the basic level of psychological support. But the risk with offering psychological support without a team of psychologists that is supervised or trained nurses is that they may not get the adequate level of psychological support.

Sounds like a lot of people are relying on local, independent sectors rather than the NHS for psychological support. And that causes a great deal of diversity, in terms of how the services are provided. And also, there is no uniform approach, so it’s become like a postcode lottery. On the main, everyone, as I said before, should access some emotional support at different levels.

At the level I work, normally an appropriate referral will be of someone whose level of functioning is so impaired by the distress caused by the cancer, that cannot function in a particular area of their lives. 

So for example, they may not be able to return to work, or not even be a parent, or comply with treatment. So at the level I work, which is the level four, we would try to help those people whose emotional distress is such that impairs a normal functioning.

Instead, at the lower level, we get more a kind of family support system. An area, a safe space, where people can go to discuss their anxiety and fears. But not necessarily their behaviour is impaired by the diagnosis or the cancer treatment. So the problem we do have, we recognise that those things do happen, but there is a lack of uniformity. 

There is an awful lot of suicidality in cancer, especially in end-of-life. And unless you’re trained to detect that risk, even if you offer, with the best possible intentions, the emotional support, you may put that person at risk. Because you are not able to detect what can go horribly wrong.

So psychological support, it’s not something that should be perceived as the Rolls-Royce of cancer services. It’s an important ingredient that keeps everything going in a very safe way. Because the legacy of someone committing suicide, because they feel overwhelmed by the treatment or by the palliative diagnosis, it’s not just an individual, but the family.

And also the staff, because everyone feels that they have failed that individual. And normally, those individuals that have succeeded with the suicide attempts are the quieter one. Because the loudest one normally are loud because they are seeking, trying to draw some attention towards themselves. So they’re more able to scream for help.

I would agree with the fact that it’s the quiet ones you need to watch. It’s not the loud-speaking people, because they can be heard. But it is the quiet ones that you think, oh, I’ll just check how they’re doing. And there’s a lot of that that goes on in the group, actually. If a member hasn’t posted for a while, someone will pipe up, oh, anyone heard from so-and-so? If not, oh, I’ll drop them a direct message and just check how they are. 

So there’s a lot of that that goes on in the group. Don’t get me wrong, it’s not substituting for a mental health service.

Absolutely.

It’s not. But people do worry about other people, and I’m amazed at how supportive everybody is, because everyone’s got their own problems.

They’re all cancer people at the end of the day. But they’ll all look out for each other as well, because you just know, potentially, how someone’s feeling. Because you’ll have felt it yourself one day or whatever. 

All the healthcare professionals on the frontline in direct contact with patients, should carry out a holistic assessment that also incorporates some risk management, some risk assessment.  

Because, like you said, it’s not the most vocal patients that may be in acute distress. And if anything, sometimes the loneliness, the isolation, it feeds into the emotional distress. And those people do not often reach out for help. So unless we ask those uncomfortable questions, how will we know?

But also, when I started this particular job 16 years ago, I was working with a palliative care medic. And we were going around the ward, and we were delivering really bad news to people. Well, she was. And what I noticed, that she never asked afterwards how this has affected you, the fact that you may not be able to go back home. We may have to transfer you into a hospice. 

And she said, I don’t ask that question, because I’m not psychologically skilled up to accept the answer, to deal with the answer, whatever they say to me. If some patients say, I’m actually in acute distress, I do not know what to do with that. And that’s why it’s so important for the clinical psychology team, not just working with the patients, but working with the whole system. Creating a culture where asking those questions is part and parcel of the treatment that is delivered.

Asking these uncomfortable questions about mortality, about fears. Because, at the end of the day, we would not have anxiety without fear. And if we tackle that fear, if we are open about talking of things like death, and dying, and anything that produces anxiety, we will reduce, enormously, the impact. The emotional impact that a diagnosis like the one you have received may impact on other people.

Sharmistha, how do you manage your patients’ emotional needs in clinic?

It’s difficult. But the holistic needs assessment, we do have, it’s quite structured, but a set of questions which include psychological assessment. But that’s just done routinely at diagnosis, and as we’ve discussed before, that changes in the hopefully long course of a patient’s treatment. And it can vary depending on all the things we’ve talked about.

For, sometimes, just having a bad day. And if you did the holistic needs assessment on that day, it would be scored very differently. So it’s ways of capturing that. Secondly, I think we’re still in the early days of getting this data, being able to acknowledge it and talk about these kinds of things. And because of the work that has been done before in the world of oncology, and where we are now. So I’ve said this before, but 10, 15 years ago, you wouldn’t imagine that you’d be talking and sitting around a table, talking about patients with cancer, with metastases.

And then there was almost… I don’t want to say this to sound harsh, but there was very little space or time to afford to talk about the psychological needs and assessments for the patient and their family. Because their life was going to be relatively short. So this is the advent and just the beginning of where we are now.

In ALK lung cancer, certainly. The trials that are being done with the medications we’re using, there is always now a big quality-of-life impact. It might not be the primary endpoint. PFS, progression-free survival and your survival rates are first.

And once we know that the drug is working and doing well, and we look at the toxicity burden, immediately after that. So I have to say that, from the pharma side and in the science side as well, it’s not just about what’s happening inside the lab.

When I talk about quality, I mean a good balance between resilience, emotional wellbeing, and physical wellbeing.

Yes. And that is being assessed now and used as one of the parameters for assessing how well a medication is working or not working.

So that’s something that, for sure, I can see that changed in the last five, ten years. Because patients are living longer, and because the quality of life is so important, and as important. So you want to be alive for as long as possible, but with as good a quality of life as possible. 

And that’s definitely being looked at and assessed with proper tools. I’m not a psychologist, I’m not a statistician, but the tools that they’re using are very good. And these are big, big trials. Multinational, worldwide trials. So it is happening. And so the medications that we’re using nowadays, that our patients are on, this has all been assessed. 

So we’re using psychologists within measuring how good a drug is, not just the scientific stuff.

We can learn from the past and we can… Not criticise. We can comment on it, and how we go forward, but we’re still in very early days yet. And the fact that we have people who want to be embedded in the clinics, psycho-oncologists, patients’ advocacy groups. The reason these are all so new is because we are at the cutting edge of that side of oncology and of medicine, actually. So we’re getting there, I think, and I think people want to do a better job and have everything embedded in one.

And gone are the days of just handing over a medicine, and then patting people on the back and saying, let’s see you in a few months’ time. We’re doing a lot better there. And the other thing is, I think, another point I wanted to make is about psychology in general, within the NHS and within our environment. It’s still very much a taboo subject. And you mentioned it before, Debra, you know, patients themselves may feel bad for being the ones who aren’t able to cope.   

So there is still a taboo about speaking up and being open about it. And that taboo is on two sides. There’s still a taboo, maybe, of the nurse, or doctor, or physiotherapist saying, how are you feeling today? Because, is that going to open a can of worms? And is that going to go down a track that we’re not actually fully able to cope with or handle for the patient and their family?

And mental health, in general, is not very well funded, because it’s not very well thought of. The fact that it’s working alongside cancer, I think that’s great for us as oncologists and in the world of oncology, because you can use cancer to our advantage. If it was a young patient with Parkinson’s disease, a 40-year-old patient with Parkinson’s disease who needed access to mental health support, I can bet you it would be a lot more difficult than if I have a young patient with lung cancer who needs the psychological support.

So in general, there seems to be a lot more openness and talking, and people are very eager, because it’s cancer and it’s oncology. So that’s, in a way, good, but something that we should use to our advantage. But it’s the whole world, the way through, unfortunately, with mental health. That we don’t talk about it enough. 

No, we don’t. It is an absolute taboo subject, and it’s difficult to get people to talk about it. Even if you start a conversation, that doesn’t necessarily mean people will join your conversation.

They’ll still stay tight-lipped. So it’s difficult. We sometimes hear about some of our members, where they’ve been through something, and something has happened, and they’ve… And quite traumatic. And then they’ll say about it, and you go, oh my gosh, why didn’t you reach out?

You must have felt so alone during that period. You could’ve really had people on your side, supporting you. So it’s amazing the number of people that do that, and will then open up and say, oh, this has happened to me. And, yes, had a major impact on them, definitely. But, yes. I don’t know. I don’t know what we can do.

Keep talking. Keep raising the subject. So I’ll keep on my soapbox. I’ll keep that one. I have several. The mental health one is just another one. But I think, yes, the more of us that keep talking about it, then maybe it will open doors to more oncologists understanding. You have an exemplar service where you are.

And that’s fantastic, but it should be replicated everywhere, shouldn’t it?

Exactly. Exactly.

And it isn’t. And it’s, how do we replicate it now? Do we start sending all our ALK patients to you? Because there, they get the best service.

Well, it should be part of the package, shouldn’t it?

Yes.

It’s not just about the fact that the drug is available and the team there understand the toxicities about the medication.

It should come as part of the… Along with the medication, along with that little pamphlet about the side effects, should be a Daria – or a psycho-oncologist should be there. You know what I mean? It should be part of the treatment. It’s not just one thing. Or the offer of it, at least, and being able to back that up. 

Because, as I said, I can offer these six sessions that my patients can have. And then, as I’ve said, whenever I’ve asked, every single time, yes, we’ve been able to top that up very easily.

But it is there in writing that they’re able to have six sessions. But in another centre, there may not be any psychologist input at all, and that is going to affect how the patient is receiving the medication.

Patients should not feel grateful for being looked after emotionally. And actually, every effort that any psycho-oncology team, any oncology team, makes to keep people alive should not just increasing a level… Increasing their existence, but it’s increasing life. However, we need to be mindful of their limitations.

It’s a big ask to ask a nurse to provide psychological support, because you needed have the right level of training.

Yes. I agree.

And also clinical supervision to maintain the skills. There’s nothing worse than trying to provide psychological support without that. It’s almost like me trying to nurse someone. I may have observed my colleagues doing it, but would that make me a good nurse? No.

And so everyone should really work within the competencies set. That they have been trained. And if you do not have a psychological team within the oncology division, who’s going to provide training, and support, and supervision, or in direct consultation, to those nurses that are always faced with their anxiety and fears? Also, let’s not forget that we may have, actually, patients with quite severe psychological distress. 

But because of the stigma associated with being referred to a psychology team, may prefer to just be looked after by a clinical nurse specialist

We have something called the clinical nurse specialist who works alongside with the oncologist, and they are trained to deliver basic level psychological interventions. So, having them around, and for the clinical nurse specialist to check after a difficult conversation with the oncologist, how things are. Maybe a way to encourage the individual to take more of an advocacy role towards their own emotional wellbeing.

But also, if there are no psychological services around, even if you scream, look I’m really anxious and distressed, what the oncologist team will do is chasing around services that are not there. Unfortunately, there is a lot of disparity across the country in terms of psych-oncology services. Some areas are very well equipped with the right level of psychological support.

So you mentioned that there is a stigma associated with being referred to a psychology team – why do you think this exists?

Some patients report to be quite anxious to say, they are distressed. Just in case the oncologist decides not to continue treatment because it’s causing a disproportionate amount of distress. So, advocacy is quite a difficult part of, so different things to tackle. Because it also depends on the culture of the oncology team.

If it’s a culture that is very psychologically minded, and the oncologist is happy to ask questions at the end of a consultation. Something as simple as that, how do you feel now that we have discussed those things? Is there anything that upsets you, is there anything that, you know? If those questions were asked, I think the advocacy will be a little bit more fluent, and the individual will be more encouraged to advocate for their psychological needs.

But if it is a different culture, where they sit on the side of the oncology department for three hours, they see the oncologist with distress. Behind schedule. Looking for the files, the last things they may say is, look I’m terrified about this. So, the culture of the patients depends also on the culture of the department that is hosting and who is looking after the individual.

Debra, Debra, what are your thoughts?

I agree, and I think this comes back to an earlier point I made around the lack of… Is it awareness, or just talking about it? The association between mental health and having a cancer diagnosis. If more clinicians really understood the impact of having a cancer diagnosis, and had an opportunity to stand in someone’s shoes for a day, as they say.

But to really try and understand, what does that mean? It means that their life as they knew it no longer exists. That’s pretty devastating. If they could have a better understanding of the implications. Rather than come at it from a clinical point of view of, right, I’m going to treat this patient and keep them alive as long as possible. 

So if more people understood that the issue with having cancer isn’t the cancer. It is the mental burden of it.

Then I think it would be easier for the NHS to have a business case for more centres having psychological support. Because look at the impact. This is impacting not just the ALK population, but all cancer patients. All their lives have been turned upside down with the diagnosis.

It’s the one word that the human population dread hearing, is the word cancer. And this lot have been given that diagnosis. So, yes. For me, if we talked about it more and more people understood. Even the healthcare professionals, if more of those understood the psychological impact for the patient and their family.

It’s not one person that gets diagnosed with cancer, it’s the family, and they’re all affected to the same level.

And leading from that and just completing this subject, when things go wrong, people never say, when we need the most support, how many doctors were there? 

And there was no doctor out there. They always say, when we need the most support, where were the psychologists? This is what people ask when they need more psychological support. When things go wrong, end of life, where was the support, emotional support? You can put 20 doctors, but all they need is a safe space to go and talk about those things that are dreaded end-of-life issues, and the dreaded lack of therapeutic options. 

And them moving from a palliative stage into an end-of-life stage. What the people ask is not how many nurses and doctors are out there. It’s, where is our psychological support? Families are left with that. They don’t want to talk to a doctor. They want to talk to someone that gives, to the emotional wellbeing, the right time, and space, and competence.

So one thing I have considered and thought about, actually quite a lot, is, when I have a patient with me in clinic, and if I know them well, then I have found it quite comfortable to ask them how they’re feeling, and we can talk about emotions. I’m not a trained psychologist, so I don’t want to take… I’m not a substitute for that at all. But we’re going to talk about that as part of the consultation.

But there are patients in whom, even if I’ve known them for a long time, or if they’re patients I don’t know very well yet… I don’t want to come across as being condescending or intrusive, maybe, as well, because it is still a taboo subject, mental health issues. To ask the question, how are you feeling about that? Or how do you feel about that? I’ve just told them this news about a scan, whether it be good news or bad news. And then for me to finish off with, and how does that make you feel?

When I hear the words echoing back, I just think the patient might just want to turn round and say to me, well, what do you mean, how does that make me feel? How do you think it makes me feel? This is my situation, and you’re turning round and asking me how that scan makes me feel. 

And so I have stopped myself then, because I think, this is not… I don’t feel it’s the time or place, or appropriate to ask. But, to Debra, should I have asked that question? And then, to Daria, if I do, how can… I’ve thought about this a lot, actually, and I thought this would be a good place to ask you both.

For me, I would say, if it’s a genuine question, then I see no problem in asking it. I think, because you’re genuinely wanting to know so that you can do the best for your patients. And that’s what I do believe. I think where it goes awry is when someone is asking the question, and they’re writing, at the same time, something in a patient’s notes.

Or looking down, not making eye contact. Then, for me, that is, “oh, I’ve just ticked the box”. I’ve asked how they are. But there’s not any genuine interest in how the patient is.

I don’t think anyone would.

There are. There are people that do that. There are clinicians that do it. 

And, yes, they shouldn’t have asked the question there. But, no. I think it’s…

But my point is more…

Some people might bite back, because you don’t know where they are in that journey. So they could be at the angry stage, and there, you will get, potentially, people going, well, how do you expect me to feel?

And that’s my point. I don’t have any solution to it.

No.

So what I’m saying is the person, saying about the scan, giving them medication.

Oh, you’ve got leg cramp as well. Here’s your painkiller. And then I’m looking the person in the eye. I’m not being rude. I’m not looking away. I’m saying, and how does that make you feel? And it’s like, well, why are you even asking me how I feel? Because you can’t change it anyway. You’re not going to take away how I feel, so why are you asking me? And I find that then… So I haven’t asked it. 

But think about the opposite. If you do not ask the question, how they may perceive you. However, it’s quite appropriate, at times, to ask the question, even if it feels a little bit pushing it. Because it shows… Sometimes people… One of the palliative care doctors that I really admire says to patients, at this moment, I can help you. But there will be a point where I’m not going to be able to help you. So that frankness.

And really, I think people always say, that doctor was very open, and took the risk to say certain things.

And I suppose I’m lucky, because when I have asked it, for example, and luckily, I can try and empathise. And then I am able to say, well, actually, there is support. And you might not need it now. You might not think you need it now. But in the future, have a think about it. We can come back to this when I see you next month. So we can start talking about it and opening it up. But I feel for those clinicians who don’t have that backup.

Who don’t have…

Exactly.

They’ve opened the can of worms, and then they don’t have their colleague downstairs who can just run up. And they may not be able to come back to it in a month. Sorry, Debra.

So for me, maybe it’s the way the question is. How are you feeling? Because you wouldn’t… If someone breaks down crying because you’ve just given them some bad news, then it’s obvious, isn’t it? It’s the ones that don’t react. 

Or they go very quiet.

And they just sit there. There, it’s like, well, you’ve gone very quiet. Looks like you’re still trying to process this. Is there anything I can say to help you process what you’ve just heard? And it’s difficult with appointment times, but do you need a moment?

And I think it’s just being human. It’s just being human, isn’t it? If you met someone in the street, and you could see that there was something wrong. Maybe your neighbour. And you would say, are you okay? And they’d say, no, I’ve just had really bad news. And you say, oh, look, sit down. Do you need to take a minute? 

You need to process it, don’t you? Maybe, let’s get you a cup of tea. Because that’s what British people do. So let’s make a cup of tea, as a start. And it’s having that time. Where I am treated, clinic time normally runs over. 

And I never mind, because I’m sat there thinking, my oncologist is obviously needing to take more time with the patient before me. If they’ve had bad news, then I would expect them to. And I have no problem. And I’ve sat there and been an hour waiting past my appointment time. But I’ve always thought, because I know my oncologist, that they take the time that they need with the patient, to make sure they’re leaving the room in the right state.

But there’s only so much you can do as well. I think, for yourself, you do care so much about your patients. I think there is, for me, as well, only so much you can do as a clinician. You can make sure I get the best treatment, and you can make sure I’m managed in the best way, with all the other aspects of it.

You can be empathetic, because you are a human being and you can relate to me. If you were in my shoes. And I just think that genuine empathy goes a long way with patients. And they know you can’t solve it. No one can, and that’s the bit each individual has to process.

That you’re not a magician. You’re not anything else. You’re a human being, at the end of the day, and you’re not going to necessarily fix this. But you’re going to give me the best that you can. That’s what patients want to be able to see, and they will hear it in your… It’s not just the words. It’s your tone, and it’s how you deliver things.

And your voice will tell the patient an awful lot about how genuine you are, I believe. 

You hit the nail on the head. Absolutely, oncologists and nurses are trained to fix. So unless they feel they have the tools to fix, they do not even go in that area. And it’s okay to just ask, knowing that it doesn’t matter what they answer you. You were just there. It’s not about fixing it.

How does that feel for the patient though? That’s what I…

The patient feels you’re interested in them. That is all. And you will know. You will feel your gut. Your gut will tell you if it’s an appropriate thing to do or not. Just follow your gut. If you sit with someone, you’ll feel, something is not quite right. That person went quiet.

I’m going to check, and it doesn’t matter what. I’m going to show that patient interest, because they don’t just want to know facts. They want to know you’re fully invested in them. You’re fully there with them. 

But on the other side, there are also patients who don’t want to engage. So that’s a different thing all together. 

Who don’t want to engage, either with their treatment, and they really don’t want to engage with talking about it, or having their emotions.

Debra, if you feel comfortable, I’m sure people listening would be very interested in knowing how being diagnosed and then treated has affected you emotionally.

Well, a lot of our members are young and are well, so they don’t like to think that they’ve got a carer. So actually, we did a bit of a straw poll, and what came back was supporter. So we talk about the patient with their supporter. 

And we’ve got a lot of supporters in the group that the patient isn’t… Because they don’t want to know, and they want stuff filtered. So carer comes on, learns everything from everybody’s experiences and everything, and then they can filter through the little bits. Because some will never want to engage with it. It’s too much to deal with. And all human beings, I find, are different in how much they can cope with.

There are two different types of people. There are people that are avoidant, and there are people who want to know the ins and outs of everything. And it’s OK to just ask the very basic questions. What kind of person are you? Are you someone that likes to know the ins and outs of your condition? Or are you someone who would rather have as little information as possible? And if you’re honest, they will probably be quite honest back.

Actually, I don’t want to know about my prognosis. I’ll just trust you do the best for me. And just go along with that. Because there is nothing worse than giving too much to someone that is not able to process the information. 

You mentioned before about the ability to tolerate information acts as a filter. If you cannot tolerate certain information, you will not even listen when the doctor talks to you. How many people leave the oncologist room saying, what did he say?

And one little advice to those people is, bring a friend, and bring a notebook. Just to give them some tools. And sometimes, they just come back to the psychologist, what did they say? And being part of the same team, I know the facts, and I can deliver to them in a way that is manageable to them. Because people just absorb what they are capable to absorb.

I’d like to say thank you to Sharmistha, Debra, and Daria for sharing their insights about accessing emotional support for those affected by ALK-positive non-small cell lung cancer.

Thank you very much for having us.

Thank you

Thank you